No problem, in this time of suffering and frustration it is always good to have people who understand, comfort, and support. I know how frustrating it can be, sometimes it makes me feel like I'm going crazy and i want to take back control of my life, I'm trying to not let it take over my life, but it is really frustrating. Hope you get to make it out there to UCLA soon.
Yes, i had that happen also. During what i call my "one week of hell", as i stated in my first post, it was pretty bad. I felt like air was not able to pass through the left side of my throat (if that makes sense) and the left side was numb, i could feel air going through on the right side but not the left until that week ended and the symptoms were subsiding a little at a time, the first couple days when the symptoms were really bad i couldn't really do any type of walking or anything that you would have to put energy into it, but as days went by the numbness was disappearing and feeling was coming back. I do get that feeling every now and then but not as bad as it was during that one week, that is why i try not to do "too much" because I'm scared that it will happen again, that feeling is scary, it feels as if my airways are gonna be blocked then i will suffocate. Maybe you had strained your neck while lifting the boxes causing inflammation, which is probably swelling around the left side of your airway, again not an expert with anatomy but it's just a guess. I try not to over use my neck muscles, though it is hard because pretty much everything you do puts a bit of strain of the neck.
With drinking water, i have noticed that if i drink water that is about room temperature then it's not too bad, of course drinking is still uncomfortable but is alot more tolerable than drinking iced water.
Don't you wish there was someway you can communicate with the patients who have had the surgery and compare symptoms, i think it would be very very helpful hearing their experiences pre and post surgery. I was thinking of so many ways to get this issue out there, i would joke with my boyfriend and tell him i should call the doctors show, or discovery health channel for the fact that a lot of other people who have this need this information and who are not aware of the possibilities other than what their doctors ''think" it may be etc.
No its more of a tightness and popping sound but not pain it just sounds gross and only happens if I am eating something hard like a dried pizza crust or I need to open my mouth really wide, Do you think this is a symptom of your throat click or that your click has definitely made it worse this would be important to know because my clicking in the jaw developed right after I got this click in my throat and it has never been this bad and frequent in my life. If it has made yours a lot worse then, I guess we can assume that the jaw muscles have connectivity to region we injured and maybe we are tensing them or they are somewhat off alignment leading to this clicking.
HYOID BONE SYNDROME:
Only bone in body that does not articulate with any other bone. cause is trauma.
Symptoms: chronic constant pain in the lateral side of the throat that radiates to the ear, throat, temple, cheek and TMJ. Pain in the lower molar teeth. upper chest pain. Dizziness or fainting when turning the head towards the injured side. Pain when swallowing. Chronic sore throat, difficult or tightens when swallowing Treatment is surgery. "
It makes sense since our injury is in the hyoid region look at all the symptoms you can get from this injury. Good news is as that seeing that one area is causing all these weird symptoms and pain referalls everything could be fixed.
My jaws only pop and click if I have to open my mouth wide for eating a thick sandwich or when yawning. Most of the time I have no pain when my jaw pops and clicks, but every once in a while instead of a pop or click I will hear a sharp crunching sound and then I get pain and soreness where my jaw connects to my head right in front of my ears and it will hurt to bite down or chew for a day or two (happens maybe once or twice a year), otherwise 99% of the time I have no pain in my jaw.
As for it being related to the throat click, I'm not sure, I'm on the fence as far of it being related. I am almost positive that it is TMJD, all the symptoms and causes match up with my experience with the jaw popping. Statistics show that it affects 10 million people that they know of so far and most are women who start off in their child bearing years. It just might be related to some kind of muscles being affected, i have noticed it became constant about a month after the clicking started.
Just wanted to let everyone know that there are other methods to treat these conditions besides surgery!
Find yourself a well trained Massage Therapist, who can do any of the following modalities: Structural Integration work, Craniosacral Release, Shiatsu Shin Tai, an Acupuncturist, or even a good Chiropractor.
There can be many causes for the conditions you are dealing with, from the swallowing issue, to tension in the jawline (TMJ) sometimes radiating out to surrounding regions in the head & neck, etc., even the popping & clicking. Many of them have to do with the amount of tightness & restriction in ligaments & muscles which attach to the actual hinge of the jaw, which can happen due to accidents, as well as from being aggravated from major dental work & so on.
I hope this is helpful information for all those suffering from these problems.
I was just wondering if you have this problem? I get the feeling that you do not. If you have, you should know from reading the posts from the beginning that many of us have already tried those routes. I can really only speak for myself, but I for one went to an osteopathic doctor in Maine who came highly recommended. He actually teaches craniosacral release and used it on me during the time I saw him. He actually ended up making my problem much worse, so much worse that I have no other option BUT to have surgery. All of the pain that had gotten better over time came back, not only did ALL of the previous pain come back, I actually got new syptoms (symptoms) like facial numbness, lip tingling, eye twitching, etc. Maybe some of the other sufferers on this website can be treated with osteopathic methods, but I have already gone that route last year and ended up worse.
I am sorry if I come off sounding angy, but I have tried numerous things in the past 2 years and 3 months, and unless you have actually have this problem you have no idea how it feels, how debilitating this condition is, how we live like this, and the extremes that any of us will try in order to avoid surgery. Some of us have no choice.
Tomorrow I will be travelling for about 2 hours for my vacation (2 hours is about all I can tolerate these days). I will mainly be resting and sleeping. There is no internet connection in the rooms, so you will probably not hear from me for the next week, but if I find wireless anywhere I will monitor the forum. I hope you guys have a good week and I will post back when I get back if I can't find any wireless.
I just want to apologize if I sound upset with you, because I am not. I have recently been having an extreme amount of pain and am a bit overly sensitive right now. I do appreciate your input and I absolutely agree with you that people should try other options and leave surgery for last.
I agree surgery is the always the last resort I too have tried everything including the regretful chiropractor who I will never let touch my body again, massage, supplements, osteopathic manipulation, basically everything out there. But there are just some problems that need surgery and if cartilage has become displaced or elongated rubbing on bone in the hyoid region like GGCB and I have no chiropractic maneuver or osteapathic manipulation is going to provide any lasting relief. I think DECMT raises a very good point that surgery should always be the last result, but when you have spent the last year in your bed sleeping your life away watching everything that ever meant anything slip through your fingers surgery may very well be the best answer.
Yes, I do take NSAIDS...Advil seems to take the edge off the pain. It doesn't get rid of it all, but it will often get rid of enough so that I can function at work. I try to take it only when the pain is intolerable because if I take it for all of the pain I have I would be taking it constantly and that is not a good idea.
I absolutely understand about your entire life changing and spending the last year of your life in bed...you have no choice but to put your life on hold since you cannot enjoy anything and increased activity can ofIen increase the pain.
I am a nature photographer and used to really enjoy hiking and taking pictures, also whitewater rafting, it is awful that I haven't been able to do any of those things for over 2 years. It is a shame when a person can't even sit and enjoy a movie without being distracted by the pain.
At this point I really do think that we should do anything to make us feel better before the surgery. I probably should take Advil more than I do. I usually take a couple a day, but I should take more.
Just wondering, when you had the consultation with the doctors at UCLA, did they ever discuss other things besides confirming that your superior cornu was displaced? Did they discuss the effects of having it? I'm curious to know if the constant rubbing on the hyoid bone, nerves etc will have a negative effect in the future, I'm wondering if the nerves will be damaged or the hyoid may not work normally/properly in the long run. Also, what are the risks of having the surgery, and will the surgery eliminate ALL symptoms.
The effects of having it are being extremely uncomfortable and destroying your quality of life tremendously, I doubt anything will be majorly damaged from the rubbing but the surgeon did say over time it can grind through the fascia or some structure of the spine and he has seen this and it can be extremely painful. Basically from what he told me I got the impression some people can live with it if it is not too severe, but if you are in a lot of pain and debilitated surgery may be the best option, obviously you would need an individual consultation to evaluate your personal situation.
The main risks of having a superior cornu excision which is the name of the surgery I am having, most likely the one GGCB needs, and may also be the one you need, are a hematoma (excessive bleeding) and possible damage to the nerves involved in swallowing though these are both very rare. They are very aware of where the nerves are located during surgery and a life threatening hematoma that obstructs the airway is something both surgeons said is extremely rare. Those are the only main two risks, and according to the surgeon the chances of dying are in a ballpark figure 1 in a million or less so it is a very safe procedure, they wouldnt be doing it outpatient if it wasnt relatively safe either. As to the effectiveness he said no one has ever been made worse, and that for his patients it seems to be an effective surgery that reduces symptoms dysphagia, pressure, pain, etc. the ones mentioned in the study. He feels strongly he can eliminate the clicking entirely and the UCLA/UTAH study shows an 11 out of 11 success rate, so I think their is a good chance of getting rid of the clicking especially if they can find the abnormality on CT scan so they know exactly where to trim.
Thanks for replying and sharing that information. I figured it wouldn't be that risky considering it is an outpatient surgery, but it's just the fact that something MAY possibly go wrong, even though the chances are slim it's still scary to think about. You are right about driving there would be more dangerous than the surgery itself, in my case flying, especially after all these airplanes malfunctioning. Have you been diagnosed with TMJ yet? I KNOW i have it for sure, one of the causes is clenching your teeth which i have been doing every time i swallow since the whole clicking throat episodes started.
Yea I have been clenching my teeth also something about the elongation of my superior cornu causes me to constantly clench my teeth because of the pain in the area, I think this is what is causing the jaw problems too as it is putting a lot of pressure on the muscles in the area. So i think their is a chance the jaw issues will go away with the surgery but I mean they are manageable nonetheless nothing compared to the throat click.
That's funny...not LOL funny, but funny strange...I clench my teeth every time I swallow ever since my throat has started clicking over 2 years ago...I thought it was just me. I can't seem to dry swallow if I don't clench my teeth.
Yes, I am back from vacation, which by the way, sucked. I had a lot of pain all week, more than usual, and all I was able to do was sleep, watch TV, and played a little cards. If I didn't have this problem I would have been doing ALOT.
Thanks, wildblue98, for sharing the information about the surgery. I agree with 808_gurl that it can be very scary to think that you could come out of the surgery with swallowing problems due to nerve damage, I always think that the worse is going to happen to me (my family is not very lucky with medical procedures) but it is also scary to think about living with this for the rest of my life. I just have to take the chance and try to think positively. Plus, I think that the grinding in my throat is pretty bad and I may end up like you mentioned "grinding through the fascia, etc." I know I need to do this even though I am scared. As you said it is extremely rare for the swallowing problems or hematoma, but I think my odds are a lot higher that more damage will be done if I don't do anything about this. Only the surgeon will be able to tell me for sure.
Thats really interesting do you get that feeling like you need to clench on the left side because I always have it there since the click started it feels like the cornu is effecting the way I chew and bite on the left side and If I get cold and start shivering it is really uncomfortable because the teeth start clenching togethor because I am cold and I start shivering which makes it even more uncomfortable. Yet another one of those laundry list of weird sensations this thing brings, I dont even bother mentioning them all because there are too many and noone would ever believe me anyways they think I am weird enough. I just cant wait for the doctor to cut the top part of the superior cornu out thats bent/elongated out of place, many of the patients even feel better right on the operating table. What an amazing feeling that would be after 500 days of being poked and gagged by neck cartilage to finally be able to turn the neck freely again. I agree I would be very foolish not to try this surgery it is safe and could cure it completely. I just have never been awake during a surgery like this so the thought of being operated on in that area terrifies me as it should anyone, thats why I hope we can contact that person who had the surgery maybe to calm us down a little or so we can see that is not that terrifying, which reminds me I need to call the doctor back to ask about that.
I just wanted to highlight the fact that in this article if you can get the original pdf format or subscribe to the journal or get it through a major teaching institution website the article has really helpful diagrams of where the patients were trimmed and what showed up on the CT scan. The exact ct scan abnormality showcased in this study is the exact same abnormality I have in which they show the an elongated posterior margin of the thyroid cartilage perched on the anterior surface of a cervical vetebral tranverse process, and in Diagram B the Axial computed tomographic scan with the head turned to the right shows the thyroid cartilage posterior alar margin has "jumped" off the transverse process I am almost positive this is what GGCB and I are seeing when we rotate are heads in the mirror and get that jump, anyways the pictures helped me understand the problem visually a lot better and its 15.00 dollars to subscribe to the journal to get the full article with the ct scan and diagrams. You can subscribe to get this article in its entirety at the link below.
Clicking in the Throat
Cinematic Fiction or Surgical Fact?
Marshall E. Smith, MD; Gerald S. Berke, MD; Steven D. Gray, MD; Heather Dove, MA; Ric Harnsberger, MD
Arch Otolaryngol Head Neck Surg. 2001;127:1129-1131.
Laryngeal computed tomographic (CT) scans helped in some cases to demonstrate thyroid-cartilage and/or vertebral body asymmetry. Each case was treated with surgery of the neck and larynx to trim the portion of the thyroid cartilage causing the clicking. In most cases the superior cornu of the thyroid cartilage projected posteriorly and medially. Surgery was successful in all cases to eliminate the symptoms. Though an uncommon complaint, our experience suggests that the clicking throat is a surgically treatable problem.
I was just diagnosed with hyoidynia yesterday. For more than a month I had awful pain which I originally thought generated from my lymph nodes. To be honest, I was relieved that the pain was not lymph node related.
However, after reading some of your posts, it looks like this can be pretty serious. Can you please give me some advice on what to expect, ways to slow/stop progression, treatments (with meds), and any other advice?
To be more specific, I have bilateral throat pain, ear pain (feel full with significant and constant pressure), and have been getting daily headaches for more than a month.
I sincerely appreciate your help and wish everyone well.
Thanks for responding...I did not have a CT performed. The ENT is quite confident based on my symptoms that I have hyoidynia. The pain has is literally spreading from the outermost edges of the bone and continues to spread through my neck and ends up at my ears. The spreading of the pain is bilateral and hurts equally on both sides...one side does not hurt worse than the other at any one time. However, the pain did originate on the left before spreading to the right.
My ears do click when I swallow and sometimes feel a lump (minor obstruction) in my throat as I swallow. I do not feel a click when I rotate my head. My sypmtoms are clearly getting worse by the day.
The ENT palpated both sides and was able to conduct a physical test by pushing from left to right to verify the painful bone condition. He is a younger, Northwestern trained physician that is very sharp and was quick to diagnose. I work in the medical field and honestly feel quite confident in him and his approach.
Do you recommend a CT? Can it verify the condition? I started 800mg of Advil today...no relief as of yet.
I really appreciate your help! There does not appear to be much information on this. Thanks again!
Yes I would defintely get a CT scan if it is bothering you bilateral pain in the throat region could be due to a varation in your thryoid cartilage anatomy unfortunately even well trained physicians are not aware of this phenomenon and often times it can diagnosed as hyoid inflammation, eagles syndrome, or in your case hyoidnia. Did your symptoms start out of the blue, because that would be importnat to know. My very first visit to a doctor over a year ago was regarding my lymph nodes too, I thought something was wrong with mine like they were swollen and I had a small lumpy sensation in the throat, the doctor was well trained and she just said it was probably a virus. The point is that is one doctors opinion and it may very well be wrong sure maybe you have inflammation in the hyoid region, but their is a reason for this , it did not just spontaneously occur out of no where, in my opinion the most likely scenario is that you somehow altered your thyroid cartilage in the neck some event brought this on, the fact that you feel a lump in your throat is very important or feel that foreign body sensation means that most likely the thyroid cartilage is putting pressure on your hypopharynx if this foreign body sensation is constant and bothersome like mine you should promptly get a indirect larnyscopy done or tube stuck down your throat to check for possible indentation of the superior cornu into your hyphopharnx.
I have had foreign body sensation in throat, ear pain, clicking in my ears when swallowing, headaches, everything you name is a symptom I deal with. But if I were you I would do the tests mentioned above CT and larynscopy to get a view of that area and see if you can catch what is causing all those symptoms. I feel strongly though it is something structural. There may be something else causing your problem too though which is why a CT is imperative get a good look at this area to rule out anything dangerous cysts, cancer. etc......
I just googled hyoidynia and I cant find one medical article on this condition. What is this condition anyways, just inflammation of the hyoid?
Also were you working out in the gym with weights strenously , or did you cough really hard, or recently have your tonsils taken out, or any form of surgical intubation. Its important for you to pinpoint the onset of this it will help diagnose it.
Wow! Thank you so much for your reply. I am sincerley grateful. Since my last post, I decided to follow your advice and seek another opinion for a CT. I am also going to get a CBC tomorrow. Like you, my primary care physician thought it was viral as well.
As for the onset, I began slowly as a sore throat and about 10 days in became quite painful with the inflammation of the hyoid (which I thought were lymph nodes). I am a workout freak. I lift heavy weights 5-6 times per week and did recently (about a month ago) hurt my upper back. Do you think it could be related? I specifically hurt my trapezius muscle.
As for the "hyodynia", my physician told me it just means pain of the hyoid. I googled it too, and did not find a thing. I found this site by searching for "hyoid pain."
Thanks again for your help! I hope this finds you well and in good health.
Yea thats exactly how mine started I was lifting something heavy and I thought I had just strained my trapezius muscle and that it would go away. But then I got this horrible pain on both sides of my neck and turns out on both sides 3d ct shows I elongated the cornu. Surgeon says I need a bilateral superior cornu excision. Make sure to get the 3d Cat scan with a nuetral position picture then a head turn position. I know you dont have clicking but neither did I in my right side until it got worse. The muscles of the trapezius attach up into the neck around the superior cornu so you may very well of displaced, elongated it causing these bilateral symptoms. Just hope it goes away mine didnt though and now I have to get the elongated part cut out because it is rubbing up coming into close contact with my tranverse process. The headaches from this rubbing are unbelievable but yes your case sounds very similar to mine, overdoing the trap muscles in the gym we both probly tensed are necks and stretched out bent that cartilage.
I just want to clarify any previous mistake I may have made I don’t mean the trap muscles attach directly around to the superior cornu but rather "around" as in near and if you are tensing these muscles hard they can put strain on other structures in the neck. The superior cornu of the thyroid cartilage is actually the weakest structure in the neck and there are two thin long horns that project medially and posteriorly up from the adams apple. I never knew these existed until I injured myself. But these can become bent and elongated, and as you can see from my posts it makes life extremely miserable. The medical community is not too keen on this phenomenon though and it often times is passed off as psychogenic or a chronic anti-inflammatory condition in the hyoid region, so just keep this possibility in mind your patient history also supports this theory.
Yes, I do have to clench more on the left side sometimes when I swallow. My jaw can get tired if i swallow too much in a day because it is always tensing. I totally understand you when you talk about your "laundry list". Our cases are so similar that I am willing to bet we have almost the exact same "laundry list". I have the strangest feelings and things happen, even in my head and I am sure that they are all related to the hyoid.
It makes me extremely nervous about getting the surgery while awake, but I almost prefer that because I know that the biggest risk in surgery is general anesthesia, which we will not be getting. I am also afraid I might accidentally move or sneeze or swallow while he is doing surgery inside my neck and cause a problem. I hope you get to talk to one of the other patients about what it was like during and after the surgery.
I actually have read that article...it was excellent, but I did not see the images you mentioned. I will have to look again.
Since this problem started, the muscles in my throat feel like they work differently and they get tired and strained easily sometimes. I worry that because I have had this for over 2 years that the muscles have now permanently changed the way they work and they won't go back to normal after the surgery. Or maybe they just get tired because the hyoid is out of position and caught on something so they are straining to do their job and once the hyoid problem is fixed the muscles will no longer have to strain and end up retraining themselves to go back to the way they were before the problem. Only time will tell I guess.
I wonder, are intermittent sharp stabbing pains in your left temple on your "laundry list" ? That has been a recent addition to mine this past month.
I agree with your recommendation to Jason to have some testing. I don't believe that any doctor should give a diagnosis without those tests. There are just too many things it could be, including something similar to what we have.
That's interesting that you have had clicking in your ears, I thought it was just me, last week I had crackling/clicking sounds in both my ears and fullness which made me nervous but I guess it could have been fluid, so I thought I was gonna get sick, then I read that it could be related to the TMJ. If it is related to the clicking throat problem then I'm thinking what's gonna happen next, it's like one thing after another. Also, my upper back gets a little tense and I am constantly having to crack it as well as the left side of my neck(spine area), when I try to crack my neck it feels like it is moving and rubbing against each other (it's an odd feeling) and it takes a couple of times to get it to crack.
So far my symptoms haven't been too bad compared to that one week it hit me real hard. The thing that I am still feeling is a little bit of pressure in the left side of my throat including off and on dryness and the clicking feel which is not as bad as it was and the TMJ which is REALLY ANNOYING.
I agree getting put to sleep is the biggest risk so in that sense it is better to be awake also the drugs we will be on are really good (VERSED and some other one)so we shouldnt feel any bad pain of course its just the thought I might sneeze or move or something, but again the last thing the doctor wants is us to move and the drugs and anesthesia according to the anesthelogist and team of surgeons will put us in a state in which no pain is felt and we cannot remember the procedure. Who knows the surgery may even be a more pleasant experience then what we experience on a day to day basis but I agree its still the thought, the uncertainty, and their aren't hundreds of people to talk to who have had it. I cannot believe the "laundry list" though it frustrates me so much yes I actually was just getting sharp pains in my temple 5 min ago I just figure its one of 40 weird things that is happening from this thyroid cartilage injury. My neck muscles have also been effected as they try to compensate for the injury. The TMJ is very frustrating I cannot even enjoy a sandwich anymore or pizza so I symphathize with you 808_gurl it *****, hopefully that will go away too. This is such a BIZZARE CONDITION a really whopper for the medical textbooks when it does get well-documented; it is really good though that GGCB, 808_gurl, Jason and us all share these weird side effects in common though it means that it most likely stems from one structural abnormality the throat click and that resolving that will cure the other symptoms I mean its not like we injured ourselves in 40 places I have a feeling we are working with a very intricate and delicate pain referral pattern that involves the nerves surrounding the hyoid, irritated by inflammation caused by the elongated/displaced thyroid cartilage structure rubbing on another anatomical structure most likely the transverse process.
I havent gotten to talk to the patient yet but I did over hear one surgeon say at that one visit how thankful the patient was while he was being sewn up, from the surgeons tone it almost honestly sounded like the man was reborn, just so happy to be sewn up and have it trimmed off.
The grinding of the elongated superior cornu against the transverse process creates irritation and chronic inflammatory conditions in the area, the displacement and elongation causes the jaw to clench as a compensatory mechanism in response to thIs nearby structural change, the clenched jaw then puts constant pressure on the jaw muscles and the jaw muscles tensing if you feel lead up into the temple and can cause twinges of pain. The ear clicking is caused by the TMJ because the muscles around the ears have changed tension and are constantly being clenched and strained which can also lead to pressure problems. If we can resolve the throat click and get that structure back to its normal position I think it can destroy the chain of events that create all these horrible symptoms.
I am still quite worried though about the medications they give you for surgery. I have ALOT of allergies to medications and am extremely sensitive to anesthesia. I had outpatient surgery once and after the procedure I couldn't wake up for 3 days. Also, I have mitral valve prolapse, so I have to have an antibiotic before, during, and after surgery and I am allergic to all antibiotics so far except amoxicillin, so I am not sure how they are going to handle my severe medication allergies. This just adds another level of worry on my part. It seems every time I take something new, my body doesn't respond well to it so I am afraid this VERSED and whatever else they give could give me an allergic reaction bad enough to kill me on the table. Plus I am allergic to iodine, which is used to clense the area they cut into...I am going to be quite a challenge just to get me on and off the table alive I think.
I will, of course, tell everything to the surgeons, and hope they can find a way around all these additional obstacles.
I think that your pain referral theory is right on the nose. It all makes sense. The nerves which are all near the hyoid region are definitely referring pain to all the places in our neck, face, head, etc.
I got the ball rolling finally...I contacted my doctor to get an "out of area authorization" for me to go to UCLA. Once I get that, I will conact the surgeon to make an appointment. With any luck I should be going in April. I will let you know how the authorization goes.
Thats great I am sorry you are so concerned about your allergies I am sure if you voice these to the surgeon they can find a safe way around them. The medicine we will be given is actually a lot safer than general anasthesia and its in the realm of concious sedation medicines like the kinds they use for dental procedures and such, according to the anestheologist I will not remember a thing and the area will be blocked with an anasthetic so I should not feel pain. I also read you loose your perception of time so the procedure may seem really short like a min or two. I know when I got my wisdom teeth out (general anasthesia) I remember them pricking me with the needle and then what seemed a second later I woke up in a recovery room thats what I love about GA, but hopefully we will have no perception of time on this stuff either.
Sorry I have not responded in a while, but I have been exceptionally busy this week. Anyway, I wanted to let you know that I have been taking 800mgs of Ibuprofen first thing every morning for the last five days or so and have noticed a significant improvement in my symptoms. While my ears are still driving me crazy, my throat and hyoid are much better. The inflamation (inflammation) has been reduced and the pain is nearly gone. I want to sincerely thank you for your help last week.
Yea Advil definitely helps as most of these weird sensations are caused by chronic inflammation in the hyoid region which put pressure on nerves and refer pain all sorts of places so I am not surprised Advil helps all of us so much. The pain in the temple is definitely coming from the jaw clenching too, I figured that out this week as I was clenching my jaw really hard, then i started getting sharp pain spasms in my temple I relaxed my jaw they went away. Definitely a complex and delicate interconnected linkage of pain referral is going on up there.
Did you have tight muscle spasms in your upper trapezius when this problem started, I am thinking if you did tear some cartilage fibers, the trapezius going into spasm would be a logical response to help brace add support to the area that had been damaged this happened to me and my trapezius felt like it was in knots.
I definitely think it's the jaw clenching also that is causing the headaches along with the pressure on the nerves.
I hope that you (GGCB) get that authorization so you can finally get your diagnosis and put your mind at ease a bit.
The fact of being awake during surgery is a scary thought but I think the fear is worth having to deal with this annoying pain in the a** for the rest of our lives, then again I am such a procrastinator that I probably will deal with the fear rather than face it. I haven't even taken anything to help my situation, usually when I'm sick I am so stubborn and I have this thing where I believe my body will heal itself which I know is probably not the smartest thing to do in certain cases but I know I need to change that and maybe this is an eye opener to take better care of myself. I also smoke which probably contributes to inflammation caused by irritation, if i had known how hard it would be to quit i can promise you that i would have never even laid an eye on it.
I have been having this terrible symptom after I eat or drink water on the left side it is like I am getting air stuck down the left side of my throat and it is trapped and I constantly am hiccupping on that side and feel bloated like the air is stuck. I was wondering if you ever got this symptom because it is so uncomfortable and I dont know how to get rid of it.
I get that too minus the hiccups. Trying to burp it out is a struggle, but i just force and force myself until I get "some" relief causing alot of strain on my neck. It's very irritating, i know. I think when that area is inflammed which for me is quite often, when we drink/eat and swallow we also take in alot of air with it and then because it is swollen it's hard to bring that air back up and out, hope that makes sense. I have trouble releasing that air, i can feel that it wants to come out but I think because that area is swollen it leaves very little room for it to try and come out and i am usually pushing in that area of my neck trying to get the air to move around from there. Sorry, have no advice on how to get rid of that problem but I think it's one of the many effects that comes with this problem we are having. I hope you get some relief though.
Wow yeah I defintetely have the exact same thing you describe everything is the same. I only get it on the left side, but I totally agree with you you are spot on, when we are eating the swelling and inflammation is causing us to suck in air unnaturally which creates small pockets or air bubbles that build up and need to be released up the left side. This calms me down a lot to know that you also feel this, because I thought something might really be wrong with me, but I am sure it is just from sucking in air unnaturally from the inflammation and that once I can get the area normal again I will able to swallow and eat food without sucking in air and creating these air pockets.
Mine also arent really hiccups they are more like a bloated air bubble (burp), like a forced pocket of air so I am sure it is the same thing you have. This thing is so weird I cant wait to get rid of it.
You explained it much better..lol..I agree that getting rid of the main source of the problem will exclude all if not most of these other annoying symptoms.
For about a couple of weeks I have been having this weird feeling in my cervical spine area, when I try "cracking" my neck for the most part it doesn't crack but I feel as if something is just "shifting" or something, I don't really know how to explain it but it feels like it shifts/rubs, I can sort of hear it but I don't think it would be loud enough for other people to hear unless the room is really really quiet and a stethoscope is used, but anyway it just doesn't properly crack. I don't know if that's a good explanation of what I feel but I don't know if it has something to do with this problem we all have.
I can tell you the first few months I had the same sensation where I felt like I had to always crack my neck and I felt something shifting though the crack was not very loud. Now I thought this was coming from the cervical spine but one day i was turning my head and had my hand on my throat and felt it through my anterior neck. This is when I realized that I had injured something in my thyroid area, the doctor I saw first could only hear it though at first by using a stethoscope as you describe it was only audible to me. After time though I learned how to manipulate it so it could be heard from someone else. I think that shifting feeling may very well be what GGCB and I have yours may just not be quite as pronounced but if you are feeling it shift in their when you try to crack your neck and you have all these symptoms you describe exactly like mine my guess is it is your superior cornu rubbing on your cervical transverse process, it got slightly knocked out or bent out of alignment and it is shifting/rubbing now. A structural anamoly is the only logical thing to explain all your symptoms and the fact that you feel something in their I doubt that is a coincidence.
Ever since I get this problem and I try to concentrate really hard, think really hard, solve a math problem, write a paper etc... I get a horrible headache and it makes the pain worse. I was wondering GGCB or 808 gurl if just trying to concentrate or stare at a computer really hard can make this worse or bring on a headache. It feels like my head is going to explode whenever I do deep thinking. Have either of you had this, I HATE it so much and I think its the 50th symptom now I have mentioned on this board.
I do get more headaches than I used to and sometimes I will feel my hyoid move a certain way and then immediately after that I will get a really bad headache on the left side of the back of my head which can sometimes spread to the top of my head and even go over my left eye. I also get headaches from working on a computer for too long...these are eye strain headaches and can get pretty intense. Years ago I had headaches every day for a whole year...they thought I had a tumor, but it turned out to be from eye strain. I just know that some of my headaches are related to eye strain, some are related to neck strain, some from stress (something WE ARE ALL under a lot of recently), and some from this hyoid issue, so it can get confusing as to what is causing them at any given time. Sometimes I can tell what is causing it and sometimes I can't.
When you get these headaches does your hyoid move into a "bad" place right before it happens?
I totally understand how you feel about going through all of this for such a long time. The closer your surgery gets, the longer away it is going to feel. Remember that you have gone through so much for so long, and compared to what you have already gone through, this time before your surgery is nothing in comparison. It is just going to feel like forever because your desire to get rid of this is so strong. Try very hard to concentrate on getting through school and before you know it, it will be time for this problem to be fixed. I have had this for so long, and I too feel like this is the longest and hardest part of my journey as do you.
I was hoping to get out there in April, and I am still trying, but it seems my health insurance is giving me problems getting an "out of area authorization". It seems I need to prove to them that nobody here can help me. I am now in process of getting the consult notes from all of the ENTs that I have seen and hopefully, once the insurance company gets all of them they will decide to approve the visit to UCLA. I haven't given up hope, and even if they refuse me, I will save the money and come out there and pay for it myself. I will keep you informed on this. I cannot believe this, but right now I have had this for 802 days and counting...I must be alot stronger than I thought.
My headaches are exactly as you describe and yes they do start when the superior cornu shifts or starts grinding on my transverse process. If I am still or lay down they go away, but if I get up and do anything that requires head rotation I get a whopping headache up the left side back of the head, that sometimes travels over the left eye, and even the top of the head like you describe. It effects my ability to think tremendously and I feel flustered from these headaches. I also get eye strain if i work at the computer for more than 5 hours a day or right a really bad paper do not know if this is related. But as for the headaches yes they are definitely caused by the cornu being in a bad position and the more I get that area grinding the worst the headache. If I swallow 2 advils the headache dissipates for a couple hours, so I am positive it is related to inflammation, do you notice NSAIDS help with your headaches also?
Speaking of headaches, I just had a really bad one right before I signing in. I had dizziness following the headache and nausea, when I get these "bad" headaches I usually get nauseous and dizzy and I also notice that it happens most when the left side of my neck feels swollen. Lately, my neck has been very tense, it feels as if my muscles are tensing up so bad that at times it goes numb, which is the most scariest feeling because I fear I may choke during moments like these. I think I will give motrin a try.
Yes, advil does help them. You know what is funny though? Sometimes when I get, what I will call, a "hyoid headache", I will take the advil and in a few minutes the headache will disappear and I know that the advil did not do it because it did not have any time to work yet. I think that things just went back into a better position and resolved itself. Hyoid headaches come on fast also...all of a sudden I have it when a minute ago I didn't. I do find that the headaches also come on when my throat is rubbing and grinding alot and I find that it does help if I keep still or lay down also just like you described.
Maybe just swallowing the water and making that motion helps readjust the area and headache. I notice this too within minutes of taking an advil. Cant figure it out either? I think swallowing room water can help the area when its hurting. My headaches are just a matter of clicks away. I notice around 250 brings on a bad one. I just lay down keep it still they go away. But as soon as I get up and it clicks >250 times thats enough inflammation for a horrible headache up the back of the head. I am just searching for the right medicine to keep this inflammation down the entire day. It makes a lot of sense on my cat scan it shows how the tip of the cornu is elongated so it keeps on rubbing whenever I turn my head, I really think that this problem is fixable when they trim it off because their is nothing left to rub! I really think too our long journeys are coming to an end and hopefully we can be 100 percent again.
What a coincidence. Just 10 minutes before I read your last post I got a bad headache in the back left side of my head. It is not just a bad headache this time either...the left back side of my head and neck have a burning sensation too. That hasn't happened before. I know exactly what your talking about with the rubbing/clicking. Today was a particular bad day of clicking and rubbing and that brought this on. I am getting very impatient too, I am praying that they approve my consult, and soon. I am getting scared that I won't get there in time. Lately I feel that the damage is progressing more quickly than it has in the last two years. I hope that it is just my imagination, that I am just having more bad days lately and that is all that it is, but I have a feeling that something really bad is starting to happen in there and I am scared. I have never been very lucky and it would be just my luck to finally get to see him after major damaged was already done.
I totally understand your concern it is also one of the main reasons I am getting the surgery done is I am worried it will get worse with time. I hope you get approved soon, you have suffered long enough, and getting a consultation from a surgeon who actually knows this condition should help ease some of the anxiety, I know it did for me. I also get numbness burning up the back of the neck too with my headaches when I exert myself too much, so for me I think it is just increased inflammation, the more inflammation the more symptoms.
It is really interesting my twin brother was doing push-ups the other day and he actually injured his hyoid area by tensing up his neck. He comes up to me and says it feels like his tonsil is out and it is poking him in his throat and that the pain shoots up to his ear and head. So, I think this shows people with certain neck structures like the other twins mentioned on this board may be more susceptible to this type of problem. My brother's is not as bad as mine and will probably go away, but it also shows how little it takes to create an annoying problem in that area. I am shocked more people dont have it. I just found this interesting and thought it was worth mentioning.
Wow...that is interesting. I don't have any brothers or sisters, but I bet if I did they might have also been predisposed to get this condition more easily also. If you think of it, I got mine from a bad cough...people get bad coughs all of the time and this doesn't happen to them, so it must be some predisposed weakness in our neck physiology. Make sure your brother does not fool around and try to do it again or he might end up with a permanent problem like ours, and we would not want that to happen.
Yes I think it may definetely be relate to some existing weakness in that area of the neck or at least physiological weakness that leads to this problem, seeing that my brother has the condition now is really weird, and the fact that many people who develop this problem can not trace the source of its cause. Unfortunately, he is also getting the weird sensations in the head from this so now he needs to get an mri. I remember reading that other twins on this site had the condition so I am sure that certain people's physiology make them a high risk for this sort of injury, it may have something to do with the flexibility of the cartilage in this region or a physical propensity to become elongated or bent.
I have come across this site from the web and relieved to see that I am not alone in suffering with pain in the throat.
I would appreciate your thoughts and views on my predicament.
In June last year I developed some clicking on swallowing. This lasted 24 hrs then went. 2 weeks later I developed lots of coughing every morning for 5 days and brought up a bit of blood.
After this I had a sensation of a foreign body in the right side of the throat, pain with swallowing, and a sensation of tightness at the front of my throat usually worse in the evenings.
I went to see an ENT who did an indirect laryngoscopy, stuffed a tube down my nose and said everything was ok. He said I must have scratched my throat with a fish bone and that this should settle.
Well, 9 months later I continue to have pain and some difficulty in the throat on swallowing, clicking/flicking (not clunking or loud) when swallowing, tightness on the right side of my throat, occasional foreign body sensation when swallowing.
I can feel a swollen muscle/tendon behind the right tonsil going down to the hyoid bone. The muscles on the right side of my neck are tender and appear more stressed compared to the left. My voice gets tired towards the end of the day.
The ENT guy organised an MRI scan which showed "something" in the throat area. He then did a CT scan and this showed some calcium in the region of the hyoid bone. He says that my symptoms are due to hyoid syndrome.
As others have mentioned, I am unhappy for several reasons:
a) I am not sure if the diagnosis is correct?
b) I have had no symptom relief and have been advised to live with it if possible? NSAIDs help, not swallowing appears to relax the muscle to make it tolerable, and alcohol helps.
c) Reading the other posts here I am anxious about the possibility of surgery and possible complications.
I was very glad to read some of the postings that might help me understand the problem. It is possible that the coughing initially caused a tendon/ligament in my neck to become damaged, and that it is rubbing against my hyoid bone. That might explain why my clikcing is soft (rather than loud or clunking which might be due to the thyroid and hyoid rubbing against each other). It might also explain why I feel the swollen muscle in my neck. I have come across the idea of a stylohyoid complex and that if any part of this complex is damaged/traumatised the rest of the complex strains to compensate therefore becoming affected.and adding to the whole problem.
I have tried osteopathy for symptom relief. To be honest it did not really help. I have tried PPIs in case it was related to reflux but that did not work either. Alcohol and NSAIDs are the only relief I get at present. I was advised to see a psychologist as well- I did and this made no difference to my symptoms. I have also been away on holiday in case it was related to stress- again no improvement in my symptoms.
I would appreciate your views on other possible causes of the symptoms I have described. From the posts there are other possibilities- an enlarged styloid process might cause the stylohyoid ligament to become swollen and painful involving the hyoid, an elongated greatr cornu of the thryoid cartilage might be the cause,
I have no difficulty swallowing though it is painful to swallow and it feels as if a muscle on the side of my throat is sore from being inflammed. I had a speech therapy assessment and my voice box is working fine.
Are there any other tests I should get done to narrow done the diagnosis? Has anyone got any other ideas for relief of symptoms.
Sounds like you need a second opinion or to find the very best ENT in your area. I find it hard to believe that a calcium deposit is causing all your problems one doctor told me this about my problem and the thing is calcium can be a normal finding in that area with age, it may very well have nothing to do with your symptoms. Your episode definitely sounds like it was brought on by a coughing fit like the other sufferers who post on this site. When you say you feel a swollen muscle or tendon behind your neck this may not be a muscle or tendon at all, but rather part of the thyroid cartilage. An MRI and physical examination by an ENT can rule out an elongated styloid process, but as a person with very similar symptoms I can say your problems sound more like thyroid cartilage abnormality. I initially though I had damaged a muscle or tendon and that something was swollen behind my left tonsil, so you have a very similar sensation to what I had. I would look into an elongated superior cornu of the thyroid cartilage because in the medical literature this is the most common problem to cause: clicking in the throat, pressure in the hyothyroid region, and foriegn body sensation. Can you get your throat to click with head rotation or inward palpation?
It is also documented that people who have ossification of thyroid cartilage are more prone to injury or displacement of the ossified region, so this could predispose people to a condition like this.
Heres more info on ossification
When thyroid ossification is noticed on a lateral cephalometric film at an early age, further imaging using studies like ultrasound, computerized tomography, or magnetic resonance imaging8 may be helpful to rule out parathyroid adenomas. Radiographic cephalometry was begun by Pacini9 in 1922 for anthropometric purposes and was refined for use in dentistry by the introduction of a patient cephalostat in 1931 by Hofrath10 in Germany and in 1937 by Broadbent11 in the United States. The cephalostat had a fixed subject-target distance; hence, it was possible to obtain standardized and accurate measurements from the radiographs obtained from this device. The cephalometric radiograph is a specialized lateral skull view, which allows clinicians to investigate not only facial types, growth patterns, and relationship of jaws and teeth but also the anatomical positioning of cervical vertebrae, the hyoid bone, and on occasion, laryngeal cartilages. A number of well-known normal variants of branchigenic structures are often discovered on this lateral film of the head and neck. Included are long styloid processes, calcified stylohyoid ligaments, and enlarged superior cornu of the thyroid cartilages. Many of these anomalies as well as the unusually ossified laryngeal cartilages have been previously confused with ingested foreign bodies.1
The three major cartilages of the larynx—the thyroid, cricoid, and arytenoids are all hyaline cartilage and may undergo calcification or endochondral ossification (or both) and become visible radiographically.12 The other cartilages consist of elastic cartilage (as do the apices and vocal processes of the arytenoids). The degree and frequency of ossification of the thyroid cartilage is less in females than in males, especially in its anterior aspect.12 The degree and frequency of ossification of the cricoid is also less in females than in males.12 In both sexes, the degree of ossification of thyroid and cricoid cartilage increases with age.12 Ossification is first seen in the thyroid, followed by the cricoid and the arytenoids. In both males and females, the ossification begins at the age of 18 years to 20 years in the posterior part of the thyroid cartilage. Ossification of laryngeal cartilages is usually symmetrical.2,12
The 2nd ENT told me that I had ossification of the thyro-hyoid ligament (I think that is what she said anyway).
I got some bad news yesterday...my insurance company denied my request to go to UCLA. They said that the doctor at Brigham and Womens Hospital was qualified to do the surgery (which he is not!). This is the doctor that said to me, in front of a witness..."I have never done the surgery, but I will try", "Anything I do in there would be purely experiemental", and "You don't want me in there." Now would anyone in their right mind let this doctor do the surgery on them??? By the way, the "surgery" that this doctor says he will "try" is not even the same surgery that is done at UCLA. Here you go under general anesthesia and they clip off a piece of the hyoid or thyroid cartilage (purely guesswork on their part) and when you wake up you hope for the best. At UCLA you are awake and are able to communicate with the surgeon throughout so that they know that the problem is resolved before they close you up.
Well anyway...they called me right before I was leaving work for the day. I was so upset by this news that I actually thought about driving my car straight into a tree on my way home so that this problem would end. Do you know in just 2 more weeks I will have suffered with this for 2 1/2 years!!!!
I also felt like calling the insurance company back and telling them "You won...You have succeeded in ruining ANOTHER human life." (You don't know this, but my father is dead because and insurance company would not cover a procedure that would have saved his life. It wasn't until AFTER he died that they approved the procedure.) But they would not have even cared...that is the sad part. If it were them, they would be doing whatever possible they could do to get this fixed, then they would see what it was like to have to live with insurance restrictions."
You know what else is funny...if they had approved me to go to UCLA, it would not even cost them any more than if I went to a doctor here, because I am the one who has to pay for all the travel, hotels, food, etc. They would just be paying for the visit and maybe a couple of tests...just like here. They are going to end up paying more money because I will be going to many more doctors here to keep looking for help, rather than allowing me to go to one ONE doctor who CAN help me (so the amount they pay out in the long run would be much less).
I have been fighting to find the doctor who can help me and 7 doctors later I finally find him and my stupid insurance company won't let me see him!!!!!! How come I can't make anyone understand the severity of this problem and the importance of having the surgery done properly by a surgeon with experience with this. One thing is for sure...NOBODY can tell me I am a quitter. The fact that I am even here to write this post is proof of that.
I am going to take a little break from the fight right now. I need to gather myself and reserve some emotional strength to figure out a way to get there...it just may be more difficult to do and take a littler longer than I would have liked in order to get there.
I do feel bad that Coffeemug30uk has joined the group.
I will continue to monitor the posts and respond. You are very fortunate to be so close to the UCLA doctor. I look forward to hearing all bout your experiences before, during, and after your successful upcoming surgery!
Thats terrible news I am so sorry. I wouldnt let the other doctor's touch you either, even the doctors at USC had never seen this condition or operated on it, so I agree with you you should get it done with someone who has seen it and done it multiple times. Have you thought about switching your insurance, or is their anyway around it. I would not trust a surgeon in that area who is not extremely confident and who has not treated this exact condition.
One of the doctors told me he thought my condition could be related to ossification of the thyro-hyoid ligament also but I am 99.9 percent for me this is not the cause of the pain and I highly doubt it is for you either. Calcification cannot cause that distinct clicking noise with head rotation and if it was calfication I dont think injury would have started suddenly after an injury. The clicking is definitely related to cartilage rubbing in my case, the only other option I can think of for you is to ask your surgeon if you can get a 3D axial CT scan and then he could fax the images to Marshall Smith or Dr. Gerald Berke the two surgeons who in the US currently have the most experience with our condition, then maybe the surgery will be more straight forward for your surgeon if they find the structural abnormality on CT rather than blindly going in and guessing. This could make all the difference, there are some very amazing surgeons in your area of course it would be ideal to get it at UCLA, but if you can find a highly trained surgeon who has experience in this area and understands the condition (its not very complex) then you might be able to figure something out with your insurance and get it done over there. Dont lose hope, I know your close.
First, thanks for this very in-depth discussion of throat clicking and pain. I have developed this clicking problem in the last 3 months. Many of the symptoms you all are describing I am experiencing also:
Throat clicks in the region of the hyoid, usually in the morning, followed by a soreness/pain in the left side of my neck that continues through the day, sometimes radiating out to my ear. I can't make it click "on command" always, but usually turning my head in just the right way and swallowing will produce the click. Some relief is felt from taking NSAIDs.
The left side of my throat often feels dry, and I usually (although not always) have a foreign body sensation in the left side of my throat which I describe to my wife as like having something small stuck back there like a grain of rice or small pill.
I've taken to moving my head to the left (the side of the pain) to swallow as it usually doesn't hurt when I swallow this way. If I turn to the side opposite the pain and swallow I am almost certainly guaranteed to have some pain.
There is a lot of clicking and pain when I drink, particularly if drinking fast. Therefore I've taken to drinking small sips. Cold beverages seem to aggravate more than say room temp. water.
I do have some tenderness that I can feel on the outside of my neck in the thyroid area, just left of my adam's apple. Do any of you experience a tenderness that you can feel by palpating that area? The amount of tenderness seems to be directly related to the amount of pain I'm having while swallowing... ie- some days really tender, some days less tender on the outside.
I cannot sleep on my left side as this will really aggravate the injury. If I do roll over and sleep on my left side I am guaranteed a "bad throat day" the next day.
I have thankfully not developed the popping every time I move my head like wildblue98 or GGCB. I really feel for you guys as I know that would be awful. What I am experiencing is awful enough, and your symptoms sound much much worse than mine. Thanks again for sharing your experiences and the all the good information you have found.
In any case, I'm in the beginning of the process of investigating with my ENT. My primary care physician keeps insisting it must be a virus, but what virus lasts this long? I tested negative for mono and strep by the way. The laryngoscopy by my ENT showed nothing abnormal other than an inflamed throat. No masses or anything unusual was detected when he palpated my neck and jaw. I just finished my second course of antibiotics as the ENT thought it was an infection or GERD (sound familiar??). I have thought all along that this couldn't possibly be an infection as it just doesn't feel that way, but I have gone along with it to rule it out. I highly doubt the GERD theory as well, unless it is silent reflux, but how could that possibly cause throat popping? But I was willing to test it out. So far, the reflux meds have done nothing to improve the symptoms. Antibiotics also did nothing.
I return this week for a follow-up and the ENT doctor said if there is no improvement he will order imaging tests, most likely an MRI. Perhaps this could identify something else going on. I would definitely like to rule out a cancerous growth of any kind. I intend to come to the doctor visit with the article referenced here on throat clicking by the UCLA surgeons who were able to alleviate the problem in 11 patients... perhaps the ENT will be open to the possibility that this could be a cartiledge problem, although he probably hasn't heard about this condition. This ENT came highly recommended and is one of the best in my region so hopefully we can figure something out. I know hopping around from doctor to doctor is not fun.
Anyhow, reading this forum has been a great relief for me, since I am able to read similar experiences by other folks. As you all know, most people cannot relate to this bizarre and painful feeling, and many think it can't possibly be as bad as you say it is. Thanks again for sharing your experiences and information. It is very helpful.
I'll share a small bit of natural medicine advice also that I have found helpful. Apparently turmeric is a very potent anti-inflammatory. I've been taking it with good results, lessening the need to always be taking NSAIDs. Don't know if you all have tried it, but it may be worth a shot. The active ingredient in turmeric, curcumin, needs to be taken with piperine (an alkaloid in black pepper) so look for supplements that also have the piperine if you decide to use it.
Good luck all, and I will update periodically if I ever figure out exactly what's going on.
Sounds like you may have the thyroid cartilage abnormality too, I would get a 3D axial ct scan with the head turn rotation method to check this out. There not that many things that can cause distinct clicking with swallowing in that area and thryoid cartilage abnormality is the most common thing documented I could find. Looks like your on the right track I also get pain to the ear sometimes, mine is also on the left side. Did you do anything to onset this, have a cough/injury or was it did it just spontaneously occur.
I haven't done anything major that may have caused this... I can really only think of one or two possibilities...Several months ago my dentist got after me to brush my tongue more thoroughly every day, especially the back of the tongue. So I followed the instructions, but I have a very sensitive gag reflex. And so I gagged a lot every day when I did this. I guess there is the possibility that my neck straining repeatedly due to gag reflex could have caused something to get out of whack.
I also clench my teeth quite a bit. I wear a mouth guard at night because of it. I find I also react to stresses by unconsciously clenching... I'm trying to be more conscious of it now and not do it. I'm a musician as well and clench when concentrating hard on my playing. So, who knows... maybe it's related to that.
I'm off to the ENT tomorrow so I'll see where we go from here. I just had a terrible popping/clicking day yesterday, but today it seems mostly fine besides a little pain. The clicking itself is not usually painful, but the pain tends to come on strong after a bout of clicking. Like I said in my last post if I sleep on the side of the clicking I am usually guaranteed a painful neck the next day. Really, really strange... can't wait to figure it out.
Also, about six months ago my jaw was popping at the area of the TMJ. Can't remember for sure if it was left or right side, but I think left. It popped every single time I opened and closed my mouth. It drove me nuts for a few weeks and then mysteriously stopped popping. Now there is a slight crackling there that is not present on the right side, but no popping.
I have occassionally thought this could be caused by TMJ disorder, but I haven't explored that avenue with any doctors or dentists yet.
Thats really interesting you also have popping and TMJ I got the same thing when this disorder started, so did my brother who got this clicking in the throat from push ups I got it from lifting, and the 2 ladies on this sight also had clicking and the tmj so they are definitely related my guess is the throat click throws the muscular balance out of whack which can cause ocassional tmj like symptoms. Mine comes and goes so does my brother, Your theory of brushing the back of your tongue too hard and gagging sounds viable. I have read similar convulsing actions cause the same injury to the region, It is good you can trace it back to something like this it does sound structural, your symptoms sound very similar to mine I would show your ENT the article on clicking in the throat if you havent printed it up, it turned out that I had the same cartilage abnormality that causes this clicking in the throat elongation of the superior cornu of the thyroid cartilage, you may have the same thing
This order is bizarre me and my brother are also always talking about the slight crackling present in the ear whenever we open our mouth to eat it comes and goes. Your symptoms are so exact it really sounds like the same cartilage abnormality and it does drive me crazy.
Sorry I also forgot to ask if you play the horn of trumpet or any instrument that requires blowing since you said you were a musician, I wondered what you meant by clenching your teeth. I did read one report where a young man developed this problem possibly from playing the trumpet.
Hey Wildblue... I actually play the fiddle, so no brass instruments or blowing into mouth pieces for me. But the fiddle rests under your chin and I have a tendency to push down on the top of the fiddle with my chin to hold it in place with the bottom resting on my shoulder. The result is I then unconsciously clench my teeth and tense my neck muscles. It's a habit I'm trying to very hard to stop... it is also not a good way to hold the fiddle form wise, but it's a habit I developed.
On another front, I just got back from the ENT. He ordered a CT of the neck to check for ossification. His first concern was Eagle's, but he was definitely open to the elongation of the thyroid cartilage theory. He palpated the click and acknowledged that "something" was going on in there, but without imaging it would be impossible to tell for sure. I am willing to be patient and see what the imaging turns up, but I realize a diagnosis of ossification may not be the true culprit in my case. He didn't order an MRI yet, but said he will probably do so after the CT's depending on the findings. No 3d axial CT with head turned while swallowing just yet... He also suggested a pinched nerve, but added it was unlikely with the popping.
I am happy that at least he didn't say it was all in my head. He seems to recognize that clicking/popping is a real phenomenon and that there are causes for it.
It's crazy that you and your brother both have the clicking... maybe this suggests there is some sort of genetic predisposition for this condition. I have read this whole thread so I know you are planning on surgery soon. Best of luck... you are in very good hands it looks like.
Sounds like you have a really good doctor, so you say that the doctor can actually palpate a click or larnygeal crepitus that is very interesting, I can also see how fiddle playing could lead to a problem like this with all the tension in the chin area and neck muscles. I would be really interesting to hear what you have as my brother and I are suffering from this condition now and I would be interested if they found anything unusual with your superior cornu being elongated, because if the doctor can actually palpate a laryngeal click with his fingers this really does sound like the same thing, Keep me updated on your findings.
I also think your problem must likely stems from you fiddle playing that is the exact same position I was in when I injured myself. It sometimes doesnt take much in that neck area to knock something off. http://www.flutemcglinchey.com/images/img_003_macdara_o_raghallaigh.jpg
Also I find it very interesting if you have ever heard of the condition known as fiddlers neck well the area musicains get problems is the exact area of your neck that is injured. This seems beyond coincedence to me, now I know you do not have a skin condition but since your symptoms are on the left side of the neck just below the angle of the jaw this is the area that gets the most stress and tension when playing fiddle and would be the most likely area to sustain an injury from tensing. The fiddleing definitely makes sense as something that could cause this condition.
'Fiddler's neck' is a condition affecting violin and viola players. Although well known to musicians it is not well recognized by dermatologists. Clinically the lesions usually consist of a localized area of lichenification on the left side of the neck—just below the angle of the jaw. Pigmentation, erythema and inflammatory papules or pustules are frequently present, while severe inflammatory induration, cyst formation and scarring occur in more severely affected subjects. The aetiology of the skin changes is probably due to a combination of factors; friction giving rise to lichenification, while local pressure, shearing stress and occlusion may play a part in producing the acne-like changes and cyst formation. In addition, poor hygiene may predispose to local sepsis.
And since the superior cornu of the thyroid cartilage is anatomically the weakest structure underneath the neck muscles if you do feel something cracking upon palpation or swallowing it most likely is something off with this structure which is highly flexible cartilaginous fiber and prone to being stretched or bent.
Wow, I have never heard of fiddler's neck, but after 15 mintues of research I am almost 100% sure I have it... I have that telltale red bruise-like mark on my neck right where the fiddle rests. I don't know how, but I never made the connection between the mark and the fiddle resting there. There is often tenderness under the mark.
I actually asked a dermatologist about the mark not too long ago. He looked at it for a few seconds before saying, "Ah, it's just sun damage." I've had it for quite awhile now. I can't believe I never heard of it or at least made the connection! I also showed the ENT the mark and explained I had tenderness there, but he did not seem to make much of it at the time.
I found this on a google books search regarding instrument stresses on the body (from Rook's textbook of Dermatology): "Mechanical injuries can be acute but are more commonly chronic resulting from repetitive friction between the player and the instrument, in some situations aggravated by sweating, faulty techniques, or excessive hours of playing. Not only the skin, but also bony and soft tissues can be affected.... "
I guess this very well could be the cause of the click. I guess also that I need to change my technique on the fiddle. Luckily I'm not a classical player and rarely play any note higher than the first position, which means I can rest it on my upper chest, collarbone, or make use of a shoulder rest (which I do not currently).
That is crazy... thank you for suggesting this possibility. I may have never made the connection if you hadn't mentioned it.
When you say "He palpated the click and acknowledged that "something" was going on in there, but without imaging it would be impossible to tell for sure" do you mean that the doctor could actually recreate the click on command by palpating your larynx. I was curious on this because if I press gently inward on that area on the left side of the neck just below the angle of the jaw I get a slight popping noise or crepitus. Right where this popping occurs is where the foriegn body sensation in the left side of the throat occurs and all my symptoms. Just wanted to check to see if you had the same thing. This is actually how they diagnosed me for surgery by palpating that area for a click.
When the doctor palpated the click, he simply felt my neck while I swallowed with my head turned to the right. My swallowing with the head turned to the right created the click which can be felt outside the neck. He didn't physically manipulate my neck to try to re-create the click. However, when I gently push in the area of the hyoid, I also get a less intense clicking/crepitus on the left side. There is no click if I push on the opposite side.
This sounds very similar to you. I also get that foreign body sensation at approximately that same area... It's not always there, but probably 50% of the time. I have it right now.
The main difference is that it doesn't pop out or click when I'm just turning my head. If I turn my head nothing abnormal happens. Now if I turn my head to the right AND swallow, then that's a different story... then I get the clicking.
very interesting this does sound like the exact same abnormality I have my throat does not always click when I turn my head now I have to get it in just the right position and then rotate fmy head rom left to right lifting my chin slightly up as I rotate to the right. But just like you whenever I press gently inward on the affected side it clicks slightly. Also, the foriegn body sensation is about 50 percent or more of the time.The fact that you get the click when swallowing and turn the head to the right sounds exactly like the patients in the UCLA-UTAH study.Another test you could do to see if it is the same thing I have, If you go in front of the mirror and gently press inward on this left hyoid area side can you see it jump inward or move slightly under the skin when you hear the click what is also interesting is I can eliminate the click entirely if I press my index finger inward and gently push down on the top of the superior cornu cartilage. This verifies the CT scan and the notion that the elongated portion of cartilage is rubbing on the tranverse process and that if that top portion can be trimmed it should eliminate the clicking entirely.
I read in another post that you knew of a team in Utah that has experience with hyoid problems and the surgery. I am wondering if you have any more information about them, i.e. what hospital or any names of the Doctors, also where you heard this info.
I don't know for sure, but some of the doctors listed in this article may be from the team in Utah. I don't personally know any information about any doctors who specialize in this problem, but the doctors listed in this article would be good ones to contact in regard to this problem.
Perhaps wildblue98 can provide you with more info, but I thought this might be helpful.
Otolaryngology - ENT
Head & Neck Surgery
50 North Medical Drive
Salt Lake City, Utah 84132
Dr. Marshall Smith is an associate professor of Otolaryngolgoy-Head and Neck Surgery. He is a board certified otolaryngologist and the medical director of the Voice Disorders Center. He completed his residency in Otolaryngology at UCLA and a fellowship in Pediatric Otolaryngolgoy in Cincinnati. He is an NIH funded investigator and participates in research on various voice disorders. He provides evaluation, medical and surgical care of the voice. He is the medical director of our multidisciplinary team dedicated to comprehensive care of the larynx.
I would try calling and getting in contact with Dr. Marshall Smith if you have decided to get it done in Utah, UCLA also does this procedure as an outpatient, he was a main contributor to the article on the clicking throat article
What I meant to say is UCLA does this procedure it may be outpatient or it could also be inpatient depending on exactly what the problem is in that area or how serious it is. I know the team at UCLA has done the SCE excision surgery around 30 times I do not know how many times it has been done at Utah maybe more maybe less.
The "lump in the throat" sensation that characterizes globus pharyngis is usually caused by inflammation of one or more parts of the throat, such as the larynx or hypopharynx, due to gastroesophageal reflux or oesophageal dysmotility.
A less common cause, distinguished by a "lump in the throat" accompanied with clicking sensation and considerable pain when swallowing, maybe due to thyroid-cartilage rubbing against anomalous asymmetrical laryngeal anatomy e.g. the superior cornu abrading against the thyroid lamina, surgically trimming the offending thyroid-cartilage provides immediate relief in all cases. However this cause is frequently misdiagnosed, despite requiring a simple clinical examination involving careful palpation of the neck side to side which elicits the same click sensation (laryngeal crepitus) and pain as when swallowing, most cases are due to prior trauma to the neck. High resolution computed tomographic (CT) or MRI scan of the larynx is usually required to fully understand the anomalous laryngeal anatomy. Anterior displacement the thyroid ala on the affected side while swallowing can help resolve symptoms.
I found it really interesting that this was actually posted on wikipedia.com. I think that there are a lof of people floating around out there with this condition but doctors just brush it off as GERD or something else because many of them are are not aware that the thyroid cartilage can cause this clicking. It is so easy to check for palpating the neck side to side but again so easy to misdiagnose and blame on GERD.
How are you doing? I haven't posted in a while but I am monitoring the post every few days. I am sorry to hear about briscott. I am starting to get a pain and soreness on the right side now too, for the past couple of days when I open my mouth wide. All of the clicking and popping and having to push my hyoid back in on the left side is starting to affect the right side and now it is starting to get caught and click on the right side too now. What next? If is partly my fault though...it drives me so crazy that I start to play with it too much...I find it hard to keep my hands off of it and that is not good. I have an appt next week to talk to my Human Resources Dept. at work to petition for them to include a more comprehensive health insurance plan that would allow me to come to California UCLA to see Dr. Burke. If that doesn't work, then I will contact my ENT at Brigham and Women's and explain to him why I want to go to UCLA for this, maybe he will agree and help me to put in a petition to my health insurance company to reconsider. I haven't given up yet...plus if things go well financially for me this year, I will be able to get my own insurance and come out...I am just not sure I can wait that long. Anyway, how are you? I hope you are doing well in college despite having to deal with this terrible condition. Have you scheduled your surgery yet or are you waiting for after graduation? Talk to you soon!
I am sorry to hear that you have this too. Just like you I cannot sleep on the side of the injury or I am also guaranteed a bad throat day. It makes it very tough to sleep as you know since I need to stay on my back or risk the consequences. Yes, I do get the sore feeling in my thyroid region and on the side of my neck...I even get slightly swollen glands on the side of my neck on the days that my thyroid region is sore. As you probably have read in my previous posts, I got my clicking problem from a bad cough, so I definitely can see how you could get yours from gagging, or even from having your head/neck in the position you need to have it in when you play your violin. I do have a popping jaw, but I got mine when I was only 11 years old and mine is not related to my hyoid click. I absolutely feel for you regarding people not understanding and thinking that it is not as bad as we say it is...it is funny, because I have had several people say exactly that to me "It can't be as bad as you say it is, you must be exaggerating"...they simply do not understand, but they would if they had it. Sometimes I wish the one's that don't understand could have it just for one day so that they would really know how it feels and what we have to go through and how we have to live, often by giving up everything we love to do...anyway, just know that in this forum WE DO UNDERSTAND HOW YOU FEEL...you have a safe and understanding place to always come and talk about how you feel physically and emotionally and we will listen and support you and empathize as we are all going through and feeling the same or similar (just different degrees of) sensations and pains as you. I wish you good luck with your doctors. Please keep us informed of your progress and anything else you want to share.
I have not been doing well at all this is really really starting to take its toll on me creeping up on 500 days now I am exhausted. I know how you feel I cant stop touching mine either and my right side has begun annoying me a lot too (clunk clunk) I wanted to do both sides at the same time but the surgeon said he would have to put me under general anasthesia so we are just going to do one at a time and put me on Versed and local anasthetic so I can talk to him. One thing that has gotten better though is that mine doesnt crack when i just turn my head anymore not nearly as much, I still have the bad crepitus though if I push in softly on the left or right sides I am waiting until I get out of school but I am scheduled for surgery towards the end of June so I will be sure to let you know how it goes. The anticipation is the worst part I just want to get it over with.
This calms me down though so I read it whenever I get anxious before bed. And I think we were right you driving across the U.S to LA is more dangerous than minor surgery with anasthesia seeing that it is 3500 miles that is over 15 times more dangerous.
The amount of surgery performed in outpatient clinics for the past 26 years attests to the safety and effectiveness of this setting for medical operations. In general, the risk of a experiencing a major complication in an otherwise healthy patient is extremely low, but not impossible. For example, there is always the remote chance that a patient may have a reaction to a medicine that may not have been predicted. Sometimes this may be life-threatening, but this is the very reason that your physical status (vital signs) will be so closely monitored throughout the surgery and perioperative period. Concerning the risk of death, some figures may be illuminating. If you are healthy and undergoing minor surgery, your risk of dying from anesthesia is probably less than 1 in 200,000. By comparison your lifetime risk of ever being struck by lightning is 1 in 10,000 (20 times greater) and your risk of actually dying from a lightning strike is 1 in 30,00 (about 7 times greater). If you drive 1,000 miles, you have about 1 in 42,000 chance of dying or about 5 times
greater risk than dying from anesthesia. Concerning the risk of death, in general, it's probably riskier to die crossing a street in a big city than it is to die during or after general anesthesia.
Anxiety about surgery and anesthesia is normal, so please share your concerns with your anesthesia care team and ask any questions you have. We recommend that you contact your physician first to discuss your concerns.
Hi, I am 24 and have similar problems.I am a student at Kendall College of art and design of Ferris State University and work outdoors for my dad’s landscaping company spraying and pulling weeds.
I don't have the hyoid popping problem but ear pain(very sensitive to noises), swollen glands, sore throat, trouble getting a clean breath of air, neck pain, chest pain located around the clavicles and headaches.
It started with a cough in December 08 and then a sore throat. The ears were constantly plugged and then pain deep inside the ear along with my glands being swollen and trouble breathing. I then visited my allergist who thought I had a mild case of a sinus infection. He put me on prednisone and an antibiotic. I started getting headaches in my classes. That didn’t help at all so I went back a week after I had finished the prescription. He then sent me to an ENT who said something about my hyoid bone irritating the surrounding area causing my symptoms. He told me I could take ibuprofen or Aleve but I had been taking ibuprofen already and nothing has been helping so he said my other option was a steroid shot in the neck. I had that done on Thursday, April 30, 2009. The shot didn’t hurt at all but his poking around to find the bone hurt the most. He did this on both sides of the neck. He said there was a numbing agent in it and that felt kinda weird. It’s been 3 days since I got the shots and it seems every other day it hurts worse. The pain hasn’t gone away. He wants me to contact him in a month if it persists. Not sure if i'll last a month. sleeping seems to be a great way to not deal with the pain because I'm unconscious.
Hi, I forgot to mention that my son told me the other day that the pain is going up to his ear now. Is this something you have experienced? I feel so helpless here. I mentioned in a comment to you earlier that we have a perscription for a barium swallow test. Do you think this will show any hyoid or thyroid cartilage problems, or is the Dr, shooting in the dark?
I read that if you're taking a turmeric supplement it should include piperine because it helps the absorption of the curcumin into your system. Without the piperine much of the curcumin is destroyed in the gut, thus reducing its effectiveness.
I don't know how effective it is without the piperine. I try to use turmeric powder in recipes and make sure I eat the meal with a good amount of black pepper.
Here is a link to a brand that includes the piperine, but I'm not advocating the use of this particular brand... I've never used it... just showing it as an example.
I had CT scans done of my neck and sinuses and had an ENT consultation today.
Very bad news: On my initial visit, my ENT alerted me to a mass in my nose encroaching on my septum, and therefore he also ordered a CT on the sinuses. Indeed there is a mass of undetermined origin and I have to have it biopsied to see if benign/malignant. The biopsy is tentatively scheduled for this week. Obviously I'm very worried it might turn out malignant. I do not know how this plays out with the neck problems... ie-- if they are related or not.
The neck CT came back "normal" and "unremarkable" according to the radiologist, but my ENT seems to disagree and thinks he sees evidence of an elongated styloid process. The left styloid process is indeed longer as shown on CT, but I do not know if it is long enough to be causing these problems. I am getting a 2nd opinion tomorrow from a head and neck surgeon at Johns Hopkins hospital in Baltimore, MD. My ENT insisted I get a 2nd opinion and even arranged the appointment. My ENT said he would not operate on an elongated styloid process, but perhaps this other surgeon would if it is deemed necessary. This other surgeon is also a head and neck cancer specialist.
This is a big double whammy. But I would think the odds of a person having BOTH nasal cancer AND Eagle's syndrome are so astronomically small as to be nearly impossible. I cannot imagine I'd have both of these conditions concurrently. I am baffled and fearful of having cancer... not a good combo right now.
I will update more when I know more. Thanks for the support everyone.
Unfortunately it is not uncommon for the radiologists to find things other than what they were looking for (they call them "incidental findings"). Almost 2 years ago, when they were doing an MRI to look at my hyoid problem, they did not find any abnormality with the hyoid region (even though there is something wrong), but they did find what they called paratrachial masses. The ENT said to me that they may be cancer, but after further tests, they turned out to be cycts in my thyroid, but for a month I was scared to death. Then last month, I had an MRI and they found some sort of small mass in my sinus area, but since I have had multiple MRIs and CT scans of the head and neck area because of my hyoid problem, they had previous scans to compare this scan with and found the mass has been there for at least the last couple of years and has not changed in size. I was then told that it is probably something that I have always had and it was probably an old polyp and not to worry about it. I won't say not to worry, because I went through it and no matter what people told me, I worried. I will say one thing though...the mass in your sinus area can be so many things (i.e., cyst, polyp, or even a benign abnormality you may have always had and didn't know it). If you have had CT scans or MRIs of the head in the past, you should have them compare this scan with those and see if it was there before. Please try to think positively and please let me know how the biopsy turns out.
Yes sometimes I get pain to the ear not very often though.
A Barium swallow test is used to detect swallowing abnormalities while it is not a bad idea to check on this, it would not be the right test to detect a thyroid cartilage abnormality like an elongated superior cornu or fracture in the hyoid region. You need to get your son a 3D axial ct scan or an mri of the larynx.
I am sorry to hear that bad news I just want to let you know I had a similar experience. At the beginning of this whole ordeal I went in for my first MRI just a month or two after the injury they found a mild c2-c3 right disk osteophyte. I was convinced this what was causing my headaches, neck pain, swallowing issues etc,. because this was the only thing that showed up on the mri but it was an incidental finding that completely mislead me into figuring out what I really had. So I spent over half a year in chronic pain clinics getting the back of my neck injected with steriods, medial branch blocks, and occipital nerve blocks. But it turned out the pain had been being referred up from the throat and I was injecting areas that had nothing wrong with them. It is good to be cautious and beware but just remember with a lot of these tests they discover things that were there years and years before and it may have nothing to do with your pain problems. I found it very interesting that one doctor noticed an elongated left styloid process as many of your symptoms do coincide with Eagle's syndrome this too could be an incidental finding though. Did the doctor palpate your tonsillar fossa to see if you elicited the classic pain response in the throat from having an elongated styloid process? One doctor diagnosed me with Eagle's and it turned out it had nothing to do with this syndrome and the calcification was just normal. I was also very concerned my condition could be being caused by Eagle's, specifically an elongated styloid process and even had the surgeon check me for this, but I really do not think Eagles syndrome would cause a distinct laryngeal click in the region that you discuss, and it may be normal for one styloid process to be a "little longer" than the other, it really depends how much longer though before it becomes symptomatic and that is obviously based on the ENT's call on years of personal medical experience. Its fortunate that you caught the nose mass though, I know I am not a doctor but it sounds like the neck pain and nose thing are probably separate issues I dont see them being related. As for the clicking below your jaw in the left hyoid region I would make your ENT take a 3D ct scan of this area with your head rotated towards the effected side and send the scans to Dr. Marshall Smith or Dr. Berke because they are very familiar with this condition and it may be a much more compelling case than the "elongated styloid process" to explain your symptoms. I was also curious, GGCB, if any of the doctors you had seen had suggested an elongated styloid process or caught any abnormality on your mri or ct showing one styloid process longer as this is the only other real rational cause noted in the medical literature that can explain the vast array of symptoms and sensations we all three share in common. I find it interesting that all three of us have calcification of the stylohoid ligaments, I personally think this has nothing to do with it, but I was curious what you, GGCB, thought of the elongated styloid process theory.
Also I am sorry I forgot to ask, briscott, but I was wondering what type of ct scan you got of the neck. Was it just a soft tissue ct scan, I was wondering what test specifically or radiological imaging technique that your ENT used to diagnose you with a left elongated styloid process.
None of my ENTs have said anything to me about the elongation styloid process, but that doesn't mean anything because it seems that none of my ENTs ever looked at the MRIs and CT scans. They let the radiologist do that and they only read the reports. I have found that radiologists miss alot of things if they do not know specifically what they are looking for. I would not be surprised if I had that. I know that I have partial calcification of the stylohyoid ligaments though. The past few weeks, my throat has been popping constantly no matter which way I move and no matter in what position I swallow. I am starting to think that this has gotten so bad that even this surgery is not going to help it. I think the muscles that are attached to my hyoid have gotten so stretched out that the hyoid is getting caught on just about everything in there. I really do hope the surgery will help this...I feel like mine is beyond help after 2 1/2 years. I hope I am wrong.
Thanks for your words of encouragement. I am of course hopeful that this nasal thing will turn out fine. I reached the point of maximum "freaked-out-ness" last weekend after I learned about it. I have since re-centered, and although I am worried, I realize there is nothing I can do but have the biopsy and find out. Excessive worry is doing me no good so I'm trying to choose not to worry... not easy, but possible if I try.
I also believe it is an incidental finding and not related to the throat popping. Unfortunately I don't have any older CTs or MRIs with which to compare to see if it's been there a long time.
However, I consulted with another head and neck surgeon yesterday. This doctor told me she thought the mass looked "pretty innocent." She has experience with nasal and sinus tumors and said this one does not superficially resemble anything dangerous, but it must be biopsied to find out for sure. Also she said there is indication it has been there for awhile because it is eroding my septum slightly. Septum erosion is obviously not good, but she said it is a sign that this mass has been there probably for a long time and if it were dangerous there would be evidence elsewhere in the body. And since the only other physical ailment I can really complain about now is my throat (which I believe is unrelated) I hope that what she said is the truly the case.
Thanks for your concern. I will certainly update when I know more.
The other head/neck surgeon I saw yesterday for a 2nd opinion said she did not think I had Eagle's. In fact she said the CT evidence was pretty clear that I did not. She said she is very aware of Eagle's and looks for it in all neck scans. She did say that it is indeed longer on the left side, but not drastically enough to be causing these symptoms. I don't know what led my first ENT to say that he thought it might be Eagles, but he sent me to this surgeon for a 2nd opinion specifically because he was curious as to what she would say in terms of it being Eagle's or not.
No, neither doctor specifically palpated that area to try to elicit pain from the elongated styloid process.
Interestingly after I explained the click she immediately palpated while I swallowed, felt the click, and said that it was my hyoid. She palpated a little more and then said "I think your thyroid cartilage is rubbing on the hyoid bone." No joke... I couldn't believe she said that. She said to fix it surgically she would "trim" the hyoid bone. I mentioned trimming the cartilage, but she thinks the hyoid is the way to go. What do you guys think of that? Have you heard of trimming the hyoid to stop this? I said I would think about it... I don't know if this technique would be effective or if it is riskier than trimming the cartilage. I'm not big on someone playing around in my neck, so unless she's almost 100% sure that would fix it, I would be reluctant to do that surgery.
In the mean time I'm just gonna do the biopsy this week with my first ENT. It's outpatient, but under general anesthesia which I am not thrilled about. But I'll go nuts if they don't biopsy it to rule out anything serious.
The neck CT, I believe, was with contrast to highlight soft tissue. The report reads that it is "to rule out neck mass." The sinus was without contrast, and the neck with contrast. As I stated in another post, the neck CT came back "unremarkable"... in fact they had a lot good things to say such as the pharyngeal spaces being "well preserved".
I also forgot to mention that when the 2nd ENT palpated my neck, she pushed in on the hyoid, creating the click without me even mentioning that it would click if gently pushed. She seems fairly aware of this problem, but like I said I'm not sure if her surgical answer of trimming the hyoid is the right one.
I think the second ENT sounds more on the ball with the throat issue I think they use Eagle's a lot of times if they dont know an answer. That is really good she is aware of this problem and she is willing to perform surgery, which surgeon is this I would be interested to know what hospital and her position. In response to the hyoid trimming I actually talked to the surgeons about this and it really depends on the particular case, in many patients all that is needed is a slight trim of the thyroid cartilage and the hyoid is not touched at all, in other patients if they feel it would help the structural integrity in the area and that the hyoid is stucturally part of the issue in creating the popping they will slightly shave this area so that is glides better. In your case, as is the case with the majority of the people with this condition usually all that is needed is a slight trim of the thyroid cartilage and the hyoid bone is left alone. Usually, all that is needed is a trim of the superior cornu thryorid carilage, but shaving the hyoid is obviously the surgeons call and varies completely based on a patients individual case. From looking at the documented surgeries it appears the overwhelming majority of patients just had an SCE which means only their thryroid cartilage was trimmed, trimming the hyoid may not be the right surgical answer it could be part of it though.
sorry for the repetition towards the end there my computer was doing weird things,
but I would still have the doctor palpate you for Eagle's just in case, and now that she acknowledges your hyoid click I would ask her to try that head rotation imaging technique that way you may be able to know for sure before hand exactly what needs to be trimmed and you would not be guessing. Also, did you ask her how succesful this procedure has been in the past?
Well, it's been a week and 4 days since i got the steroid shots in the neck and i have developed acid reflux problems. Shots didn't do anything. Still having problems with ears, neck and throat. Going to see my ENT. I am really thankful for this discussion forum and to be able to follow along with everyones problems and possible solutions.
How are you doing? I haven't seen you post for a while so I just wanted to check to see how you have been feeling. Your surgery must be coming up soon and you must be excited (and probably nervous) to finally be able to get rid of this problem. Let me know how you are doing!
My symptoms are pretty much the same I am still waiting to get the surgery done in July, I have actually figured it out how to press my index finger (not that I recommend to try this) inward over the superior cornu and press down on the tip. When I do this and rotate my head the clicking is completely gone, one of my surgeons thought this was a really good sign and the fact that I can eliminate the clicking by pressing down shows me it is definitely a piece of elongated thyroid cartilage. I just hope excising it out will eliminate all the symptoms.
It is so good to hear from you. Yes, when I press on the cartilage of my throat in certain ways it also gets rid of the clicking. Only not always the same way...I mean that sometimes I will press in one area to get rid of the clicking at that moment, but then I try it some other time and it does not work, instead I need to press a different area to get rid of it. I wonder what that means. I know my hyoid gets caught in multiple places...so my problem travels a bit. I too hope that you get rid of all the symptoms as well as the click. My work is trying to get a different health insurance for me, one that will allow me to come out there. That won't happen until October or November though. November will make 3 years for me with this problem. I have to hold on until then. Talk to you soon!
When you say multiple places I can see how it could feel like this. In that area though really the only two structures the thyroid cartilage could be clicking against are the hyoid and/ or the transverse process . Sometimes when the thyroid cartilage becomes elongated it can click on both regions since they are in close proximity (this could possibly cause the multiple clicking sensation you describe) as my surgeon told me during the consultation trimming the top of the cartilage should stop the clicking in both regions since it is the elongated tip that seems to be the structural anamoly. That is a really good sign you can stop the clicking with your hand also. Some more things I have learned about the surgery is that it takes patients typically 5 days to return to work and normal activities, the region they are trimming off is not essential to any function, and you can request special stitches to eliminate scarring in the region.
That information is good to know about the surgery! Although if anyone can fix this, scarring would be worth the relief. Did you ask them if you can swallow right after the surgery...that is actually one of my biggest fears about it. I hate to say it, but if I could end up not being able to swallow, I think I would prefer to stay as I am crazy as it sounds. It is so good to talk to you again...hang in there this last month or so!
I am sure you can swallow after surgery it will probably feel like someone punched you in the throat or you have strep throat but unless some freak accident occurs and they cut a nerve I should be able to swallow and eat soup. The whole swallowing thing creeps me out too but the surgeons told me they are very aware of those nerves and it is a very small chance also the surgeon said in the 30 surgeries he has done no one has ever been made worse. They are just cutting out a tiny piece of cartilage, they are not interfering with anything that controls the swallowing mechanism unless a bad mistake is made. I honestly feelf you are in tremendous pain, and debilitated, it is well worth the small risk and the surgeon wouldnt have performed so many if it had any serious complications.
You are right...they would not be doing it if that were a risk. When it is time, I will go in with a positive attitude and come out just fine just like you are going to do. We have more of a chance of being hit by lightening than having a complication after this surgery...and I have never been hit by lightening....have you? LOL...'nough said...I feel better now. Hope you are having some good throat days!
I have had this throat-clicking thing for a year now. I have read tons of posts online, been to many doctors and they all say the same thing. It's the superior cornu cartilage rubbing against the hyoid bone and it's on the left side of my neck. Painful and miserable!!!
They've all say that there is nothing that they can do, but reading this I see that this Dr. Berke at UCLA is actually doing surgery for it! Well, I am looking into it. I live in Ohio, but it would be so worth the money and travel it to have this problem fixed for good!! I don't mind the surgery, as I have recently gone under the knife to have a cancerous tumor removed from my abdomen. No fun....
Has anyone actually had this surgery yet? I would like to know how you are doing after the fact.
I think the throat clicking started last April after I had bronchitis for about 2 months. The cough was really bad. Not sure if that had something to do with it, or not.
Also, I have not had any tests other than the tube through the nose to look at my throat. The ENT said that he didn't find any abnormalities. The diagnosis he gave was the superior curnu cartilage rubbing on the hyoid bone. He said there is nothing I can do about it. The second ENT said the same thing.
By the way, this is so miserable and seems to be getting worse. My neck actually hurts all the time on that side. I hate it!!!!
That is really interesting yours started with a cough also that seems to be the most common cause on this forum. I also get the neck pain that emanates from the clicking it is awful I agree especially when it aches enough to bring on a headache.
the "hyoid headaches" along with neck pain, throat pressure, and foreign body sensation is one of the main reason I am getting the surgery done. I feel strongly that once the clicking is eliminated the headaches will also stop because there will be no structures to rub on each other and create the horrible inflammation that puts pressure on the nerves and causes the headaches.
I just wanted to let you know that the coughing is how mine started so I absolutely feel that it is related to your cough. In Nov. of 2006 I got a really bad cough, the worse in my life and I coughed for about 6 weeks. My click and pain started sometime during the second week of my coughing. I feel very badly that you had to join this "clicking" club. I have been a member for over 2 1/2 years and I will not be able to go to UCLA until next year, but I will get there!
Hey wildblue98, is there a correlation between how long a person has this and how successful the surgery is? I mean, if you have this for a long time like I have and you have the surgery, is the surgery any less successful because of the length of time I have had it? Or can you have this for years and still have successful surgery with complete resolution? I wonder what the doctor at UCLA would say.
I actually thought the same question to myself. The average number of months patients lived with the clicking symptoms before getting the surgery done was about a year in the study sample of eleven patients. There were a couple patients who had it done at 18 months or two years all had resolution of symptoms. I personally feel this is the type of problem that could be equally corrected and fixed if you had this even 10 or 20 years because it is purely structural. The only problem would be if the clicking had led to a bad condition like grinding through the fascia or bone spurs that could make the procedure more difficult and possibly less successful. My opinion is if their is a real structural cartilage abnormality like those discussed in the above study and its been 18 months to allow for optimum healing then you are probably lessening your chances by creating more problems in the area. I also feel that certain people have a predisposition/weakness to this condition (maybe more flexible cartilage or weak neck musculature) as 40 percent of the cited cases in the study are not attributable to a traumatic injury and the two cases that were bilateral (had no history of injury either).
I still have my symptoms and worse this week with sore throat, etc. I was wondering yesterday, what if the cause of the clicking could affect swallowing? What if the cartilage got "hung up" or stuck when swallowing? Could you swallow then? I mean really stuck. Scary. Just thinking about it. Also, I have had my symptoms since January 2008. Sometimes it feels like one click or clunk when I swallow or it will sound like multiple. Sometimes, it's hardly noticable (good days.) It is getting old. Anyone get the surgery yet? This is very frustrating!
Also, one more question, has anyone ever gotten an eye twitch on the affected side? I get intermittent (every month) eye twitching which lasts about 8-10 days. It is not twitching all day. Just on/off. I do have stress though so maybe it is stress related. I also noticed something, I have a small cartilage deformity behind my right ear. It is like a little point around the base of the curve of the ear. I cannot sleep on that side or I will wake up with my ear hurting. I have always had this but noticed it has become painful over the past couple of years. Wondering if this is related to the throat click developing? Wondering if these things are some soft of bizzare condition that affects the cartilage in the body. Just thinking about this. Thoughts??
Yes I also get the eye twitch and a deep ache behind the eyes,GGCB also complained of aching behind the eye so I would say between the three of us it sounds very likely that this is causing the symptoms facial pain in that region. This can affect swallowing and make swallowing feel abnormal and forced, to the point that you choke I highly doubt that.
One thing I have been trying to research a lot in my spare time is what is causing these hyoid headaches that are obviously brought on by the cartilage abnormality coming into contact with the hyoid bone or tranverse process. By looking at more diagrams in the area I have a strong suspicion that what we call "hyoid headaches" may be caused by inflammatory pressure on the external carotid artery which can mimick and cause migraine like sensations. Similar to the documented severe headaches experienced in eagles syndrome in which the elongated styloid process begins to impinge and put pressure on neurological structures like glossopharyngeal nerve and carotid artery (surgical resection of the elongated styloid process cured symptoms) I think an elongated or posterior oriented superior cornu thyroid cartilage can cause similar sensations I really hope the SCE procedure will get rid of these horrible headaches because for me they are by far the worst symptom I have to deal with on a daily basis. How do you cope with these headaches they are awful?
I think someone early on said their doctor thought their hyoid problem must be hereditary, in their case. I think it runs in my family too.
My 78-year-old father has coped with pain caused by his hyoid bone, since I was little. I can remember him popping it back in and how scared I used to be because of his obvious extreme discomfort. I found this thread because it has started to happen more often again and I wanted to find out more about it.
I had always imagined the pain went down the side of his neck but reading this and looking at some images, I have suddenly realised that it is probably a similar problem to the pain I get sometimes when I yawn.
When my teenage son asked what I was doing & I told him about his Granddad's problem, he said, "Is that the searing pain I get in my throat when I yawn? I just put my thumb under my chin to stop it."
My son and I do not get the excruciatingly debilitating pain my father does but it is still very inpleasant. There are so many posts here I can't read them all. Are there many other families out there with this as a hereditary problem and is there anything that can help my father now (I don't think surgery would be a good plan as he is now quite frail)?
Thats interesting, I dont think its a hyoid bone problem though most of the people who post frequently on this site have a thyroid cartilage abnormality rubbing on the hyoid or transverse but it is not actually the hyoid popping out of place even though it might feel like that.
For about 6 months last year with this problem I too got eye twitching on the side of my problem. I haven't had that particular symptom for months now, but when I did, I figured that it was from pressure from a nerve from the problem in my throat. In addition to that I also used to get facial and lip tingling and numbness also on the affected side. In reference to your comment about maybe got being able to swallow, in the last couple of months I have noticed that I will often wake up in the middle of the night very suddenly and bolt upright because my hyoid gets caught and I can't swallow . It actually wakes me up in a panic. Once I sit up, I can use my hand to reposition the hyoid and then I can swallow...I will tell you though that when it happens it scares the heck out of me. It happens 3 to 4 times per month. Less often, maybe once a month, it will get caught to the point of making me panic for a couple of seconds during the day when I am awake. I think it may happen mostly at night because my throat is most relaxed when I am sleeping and I think the hyoid gets caught. These past couple of months, I have also noticed that my swallowing feels a bit weaker when I dry swallow, almost as if I have forgotten HOW to swallow. For those brief moments during those days, it is as if my brain can't figure out how to move my throat muscles to produce a successful swallow. It is kind of unnerving when it happens, I usually have to concentrate to start swallowing again and then I have to NOT think about it after that and let my body take over. Like I said though, during the day it only happens about once a month. I have no trouble eating food or drinking though. My swallowing feels normal during those activities. I am guessing that from having this for over 2 1/2 years, that the swallowing muscles in that area are becoming weak or strained. The good thing is that I have no trouble eating or drinking and that is the most important thing. I don't think that not being able to swallow will happen. Like I said, I think that it is just the position of my head and the fact that the throat muscles are so relaxed when sleeping that the hyoid gets caught, but should that happen to anyone (and I am not worried that it will ever happen and you shouldn't worry either), I am fairly confident that the surgery would fix that since the hyoid getting caught is a structural problem which the doctor at UCLA has proven can be trimmed and fixed. I should be getting this taken care of within the next year if the new insurance works out this winter.
I was wondering since your symptoms are so similar to mine if either of you get these same symptoms as me:
Is it hard for you to walk on cement or long distances or to even jog this causes great discomfort and pressure in my throat and brings on a headache. Also, my anterior neck muscles get so tight all the time I keep on having to rub them it is like they are turning into cement. I am so sick of this!
I WISH I SAW THIS POST EARLIER...I AM THE PATIANT THAT YOU HEARD ABOUT BY DR. BERKE AT UCLA...HE OPERATED ON ME, AND I'M SO GRATFUL I HAVE MET HIM. I I RELOCATED ALL THE WAY FROM NY AFTER SEVEN YEARS OF SUFFERING AN ALBEW TO THE NECK, AND A DOCTOR IN NY THAT PERFORMED TWO SURGERIES WITHOUT KNOWING WHAT HE WAS DOING. I HAD THE SAME SYMPTOMS LIKE YOU ALL HAVE WITH THE CLICKING AND POPPING OF THE HYOID AGAINST THE THYROID...SOME DOCTORS WILL MAKE YOU THINK YOU ARE CRAZY, YOU ARE NOT... THIS IS CERTAINLY A TREATABLE CONDITION. FEEL FREE TO CONTACT ME... YOU CAN LOOK ME UP ON FACEBOOK (ADAM BAR)... I'LL GET YOU ALL THE INFO YOU NEED
It is my pleasure, I wish I saw this forum earlier I would have saved a lot of time and frustrations to many of you. I remember when I was struggling with my hyoid snapping out of place, rubbing against my nerves and getting stuck when I turned my head from side to side, difficulty swallowing and poor vocal perfomance... I know what you are all going through, I remember when doctors dissmised it as an acid reflux, DO NOT GIVE UP. At the time ( since 2003) I was looking for answers on forums such as this one and no one had answers. I'm glad I could be of help... Please feel free to ask any questions. I had 6 surgeries so far three by a doctor in NY that didn't know what they were doing, one of them removed my stylos process (he thought I had eagle's syndrome) my tonsils were removed as well. after I have done much research I have came across the article on one of the forums that article that you are all talking about" Clicking in the throat cinematic fiction or surgical fact" showed it to my doctors in NY and they attempted to operate on me according to the article (Please learn from my mistakes and only go to someone who had performed this kind of surgeries before) he removed part of the Horn of the hyoid, needless to say it didn't work and actually caused to additional issues. I started effecting my thyroid function since it was rubbing against the glands, i was passing pout and it was really painful. I had another surgery to try to correct that and the doctor shaved the the Thyroid cartilage, and still no improvement. In 2007 i decided to fly to UCLA to speak to Dr. Berke since he was involved in the writing of the article. That was the best think i could ever done. He operated on me and removed almost half of the hyoid bone where i was dislocated, almost immediately after the surgery my voice had improved, I didn't regain my singing voice but i could talk for longer periods of time with less pain ( I was a Broadway singer/Actor before my injury)
my swallowing was better as well. Unfortunately after few months the clicking has returned, doctor Berke had removed the thyroid cornu and things got even better for a while. I am actually having my last surgery next week the remaining of the hyoid bone will be removed, This should completely stop the clicking... I will have to retrain my muscles how to swallow again, but i am very optimistic, and so should you... I hope that helps...
Wow, thanks so much for sharing your story. It is interesting you say he is moving half of your hyoid bone this is not the surgery I am having done I am having the elongated thyroid cartilage trimmed possible hyoid shave but I can see how they are in similar areas. I am just really worried I wont able to regain the active lifestlye I had before, I am so impressed by your story that you could battle this out for seven years and then win an ironman competition that is amazing do you feel like you have had a complete comeback or are you still very limited in your exercise regimen and lifestlye. Also I was wondering if you finally got rid of the headaches they are so awful. I am getting the surgery in a week and a half so best of luck to you too.
I had the cartilage of the elongated thyroid trimmed as well, the removal of the hyoid bone came later since the clicking had not stopped... my last surgery in on the 24th of July where the rest of the hyoid will be removed, this way the hyoid will have nothing to click or rub against... You should be able to regain an active lifestyle, remember I had prior surgons from NY that did more damage the good, when I came to Dr. Berke he said i wish you came to see me before you had those surgries. so you are in better shape then I was. The headaches you are describing should stop post op. stay positive and determained my friend... I almost had a complete comback, I hope I can regain my singing voice so I can do Musical theatre again...
This is really coincendental I am actually July 24th also, you are the time slot right before me I know (not because anyone told me) but because I actually initially had your appointment time and then they had to push me back so it must be you! because I doubt he does more than 2 surgeries in a day. I am sure we will probably run into each other. That is great to know that the headaches are curable, just curious why didnt they do the hyoid shave and the elongated superior cornu of the thyroid cartilage in the same surgery, did they think that one would be enough to fix it.
I just wanted to post thest images of the thyroid cartilage so that everyone and anyone who comes across this site can better understand the type of stuctural abnormality that is creating the majority of clicking and pain with the "clicking larnyx"/ "clicking throat" / "dislocating hyoid" syndrome. Just paste the url's into the web browser to access the diagrams.
(This Diagram shows a nice anterior view of the thyroid cartilage if you use your thryroid prominence (1) as a landmark placing by placing your thumb of either hand on the notch show in the diagram you can then use your index finger to feel for the superior cornu of the thyroid cartilage. If you have a clicking larnyx you may only need to apply a little pressure to this region to get a distinct popping/clunking sensation. As you can see in the diagram (4) the superior cornu thyroid cartilage are long and narrow, directed upward, backward, and medialward, and ends in a conical extremity, which gives attachment to the lateral hyothyroid ligament (Pictured in Diagram B). The reason why this region is so prone to this clicking sensation is because of thin and flexible nature of the long and narrow superior cornu which easily can become bent or displaced and once this occurs the cartilage will start rubbing on nearby skeletal structures most commonly the hyoid and tranverse process: As the UCLA /Utah Study noted the three most common cartilage anamolies were
posterior elongation of the thyroid cartilage
(2) superior elongation of
the superior cornu of the thyroid cartilage,
cervical vertebra transverse process.
Wow that's amazing... Same day, what are the odds... They initially intended to perform the hyoid shave and the elongated superior cornus of the thyroid cartilage in the same surgery. Doctor Berke wanted to do it under local anestesia so they could see how I swallow, but I guess the anestesia was strong and I fell asleep, for that reason we did it in two seperate surgeries... now we are doing the third one to completely eliminate clicking and rubbing of the hyoid against the thyroid cartilage. I wish you the best of luck... what time is you surgery? If you want to talk about it or need advice... feel free to contact me
Dear wildblue98: I am so happy that your wait is finally almost over...I envy you. I am sure you will be rid of your click and pain after this. Please keep me informed as much as you can before and after your surgery. I am so exited to hear about everything and about how you feel afterwards.
Adam: I would love to hear about how your surgery comes out also...I expect to get some tickets to the next broadway show that you are in when you recover from it...and I am NOT kidding...I really do want tickets!
Hey wildblue98 and Adam: Have either of you ever had a soreness type of pain in the back of the roof of your mouth when you swallowed? I have just recently (last 4 days) developed that and I am pretty sure it is referred pain from my hyoid problem. The reason I think that is because it doesn't happen on every single swallow, but on almost every single swallow. If it were some sort of abrasion on the roof of my mouth from eating something hard or too hot, it would not come and go like that...an abrasion would make the swallow hurt every single time until it heals, not 9 times out of every 10 swallows. Anyway, I hope it goes away soon since it focuses my attention on my problem when all I am trying to do is ignore it the best that I can until I can have the surgery too. After more than 2 1/2 years with this I was hoping I would not get any "NEW" symptoms since I have just learned how to tolerate the symptoms I have now. I will keep monitoring this post daily for any new information and updates and I just wanted to let you know that both of you are in my thoughts and prayers for your two "successful" surgeries. I wish you both the best of luck. Talk to you later!
I vaguely remember getting a weird sensation on the roof of my mouth but nothing that uncomfortable or bad, I am not sure if I have noticed this symptom I may just have a canker sore, yours may not even be related at all either I doubt youd be developing completely new symptoms this far after your injury but of course its possible. GGCB can you elicit an inward crepitus by pressing inward lightly on both sides of your neck (left and right)? Mine has gotten to the point where I can do this on both sides with my index finger, I think this is really important to be able to show the surgeon exactly where to press (especially if you fall asleep like Adam) so they can recreate this click in the operating room and trim and get it exactly right since you really will be too drugged to talk to them coherently, it would be great if there was a way for you to recreate the click so they can confirm resolution of symptoms.
I get weird sensations too on the roof of my mouth, sometimes tickles or tingles, I am pretty sure that the pain in the back of the roof of my mouth when swallowing is due to the hyoid because it seems to correlate to what the hyoid is caught on or the position it is in at the moment. Sometimes I am actually able to manipulate the hyoid into the perfect position to make the pain stop, but I can't do that all the time. I think maybe after all this time of it getting caught to the left, that maybe the muscles on the right are getting lax/weak and allowing it to get into positions it never did before thereby pressing on nerves it never pressed on before. I don't like this symptom, it makes me NOT want to eat. I never had any problem with eating before and I don't want to start now. During eating and drinking were the only times my throat felt "normal"...I hope that is not ruined for me now with this new pain. If it doesn't go away in another week or so, maybe I will get it checked out to make sure it is not something more serious. I can only pray that it disappears as mysteriously as it started. I have had it for only 5 days now, but I am pretty much at my breaking point...I feel like I just cannot tolerate anything else, no matter how minute. Sorry to go on and on...
Now to answer your questions: Yes, I can press on my neck and recreate the click (although for me it is actually more like a pop) which I can also create when I turn my head, I click when I swallow, and I can create the crepitus also. I am longing to see him. I now feel very confident that if he examines me that he will know exactly what is going on inside. And, I just may fall asleep like Adam as I am very sensitive to anesthesia and I don't weigh very much. I have been thinking that I don't want to wait another year to do this. As soon as I have enough money I may buy my own health insurance that will cover me at UCLA. You must be so excited!
I know I have said this many times before, but please keep in touch...I really feel as though our 2 cases are the most similar of everyone's and even though I have never met you, I feel as though we are connected by this problem "hyoid friends"...LOL...no seriously, most of the time you are my main support going through this difficult time. As you know, it is difficult for the people around us to understand unless they have gone through it. I truly wish you all the best for a successful surgery.
You will certainly get tickets for my show once I recover...I have had the same symptoms of soreness/pain in the back of the roof of the mouth when I swallow, as you describe. It sounds as if it is related to the Hyoid, but only a doctor could determine that... like this one there are many symptoms that will come and go, like tingeling or twitching of the face, even ear pain and Headaches. I wish you could go to UCLA without delay... I suffered from similar symptoms since 2003 and had no Insurance as well. It is not worth it to wait and suffer from this, It effected my livelyhood and I believe it is effecting yours. I know how depressing this could be... I'd like to encourage you to be strong, please know that we, the people who are experiencing this understand how you feel and support you...
I wish that I could be there on the 24th too, so he could do a triple header and I could just get this over with. I try very hard to be strong, but right now I am falling apart emotionally a little bit since I didn't really expect this pain on the opposite side now too. I handled it pretty well for the first 5 days, but since yesterday, I am beginning to feel like this new symptom may not go away, and I didn't even do anything to precipitate it to start. I know that once you and wildblue have your surgeries that you will probably want to put all of this behind you, but I hope that once you and wildblue are free from this problem that you will still post back to me sometimes until I can have the surgery. I really have nobody to talk to about this since nobody understands and I could really use both of your support. Thank you for getting back to me and for your words of encouragement.
I will be sure to post back dont worry I also probably will be getting the SCE excision done again on the right side since I have bilateral symptoms and wanted to try it on the left side first. I still think it is crazy how similar our clicking is mine is 80 percent left side, 20 percent right in terms of pain but both areas have an audible click/pop if I push inward softly would you get both sides done at the same time when you have it?. I still cant believe I have this on both sides! ahh one is bad enough. But at least by waiting you will know a lot more about the procedure from Adam and I and it wont be as scary because I will tell you exactly what it is like and what you should expect. Hang in there.
You are the best! Mine is about 80 Left and 20 Right also, I would also get my left side done first. I just don't feel too great about doing both at once in case I have a hard time with it. Plus, you never know...if I get the worst side done then maybe the other side will fix itself or not bother me enough to worry about surgery on that side. Maybe the surgery won't be very bad at all and then I won't be afraid to have the right side done. I am so glad you are going to tell me all about it...I am anxious to go there and scared at the same time. If I know all about it it will take the fear of the unknown out of it for me and will help me to prepare for what it may be like for me. You are a great friend. I hope your surgery goes smoothly and is completely successful. Talk to you later.
I think it's just as hard to deal with the emotional impact of this as it is to deal with the physical pain. I remember falling into depression 6 years ago when I was going from doctor to doctor and no one could help me, My throat was clicking on both sides, snapping from side to side, I would have nerve pain, headaches, problems swallowing and my voice was gone. But the most difficult thing was when the doctors look at you like you are crazy and dismiss it as if you have nothing wrong with you. they threw Nexium and Vioxx at me but things had not improve, in fact it got worse... It took over three years until I came across the article about the clicking throat, by then I already had three surgeries that i shouldn't have had, but the doctors in NY really didn't know how to treat this issue... things became worse, I started passing out whenever I exercised and I ended up in the ER many times... imagine the frustration... I suffered like that for another year or two, even after I came across the article by Dr. Berke I had a hard time convincing the NY doctors to do the CT according to the article... I couldn't take it anymore and got very depressed, until I decided to come to UCLA and speak to doctor Berke face to face... The reason I am sharing this with you is, I would like you to know that I understand what you are going through and this is the reason I have posted on this site. I want to make sure that you and others don't have to through what I have gone through. I can't stress enough how importent it is to be strong, and determination is key...I had to do a lot of work to change my attitude to a positive one... I am glad that you have at least some answers that for some of us took years to discover... Hang in the my friend and I promise to do my share to help and support as much as I can... be strong and positive...
I was having headaches and went for an MRA where they look at the arteries via contrast in your neck and head. My physician assistant did not even know what an MRA was but she ordered it for me so I could deduce whether this is related to the neck thing or stress. I showed her what it is. I have been having unbelievable stress lately. I have two kids fighting at home for the summer. I have a bilevel house so I have to keep seperating them. I have no finances to send the older one to camp. She wants my computer all the time the other wants me to play all the time (he's 2.) The older girl may be bipolar so she wakes up moody. Having a child act like this is VERY stressful.
I am trying to take care of all this and then on top of that my health stuff which can bring you down because no one undertstands. I have the throat problem, degenerative spinal stenosis, just injured my knee on July 4th, and anxiety. I cannot go to Ca at this time but I know who to go to when I get the money. Until I can, I will keep in touch here and see how you all do. Thanks so much for the help and guidance from you all. Have to relax..seriously.
I feel so terrible that you had to go through all of that. You have definitely gone through much more than I have with having it 4 years longer than me and having all the unsuccessful surgeries and ER visits. I could NEVER have stayed as strong as you have for this long. I pray for half the strength that you have. Reading your last post reminded me of all of the doctors I saw and all the "I don't know"s and the "it will go away"s and the "there is nothing wrong with you"s I had to put up with. I absolutely understand what that was like (doctors not knowing what to do, and not even believing that anything is wrong)...one of the 6 ENTs I went to said to me "I don't know what it is and I have no time to find out" which sent me out of his office crying hysterically, plus I could not believe I heard that coming out of a doctor's mouth! I remember how hopeless I felt...I even thought of ending it several times...but then i found this forum, and I found wildblue98 and I saw Dr. Berke's article and then I knew there was someone out there. When I first read the article I figured that this was only a scientific study...like an experiment...but then wildblue98 told me that Dr. Berke was a practicing ENT surgeon that worked out of UCLA and was actually performing this surgery successfully in his practice. It have me some hope. Some days I feel like I am never going to make it there, and I spend lots of time in despair. I will try to gain some strength from your words and try to stay as positive as I can (which some days isn't very positive). I feel very far away, like I am being left behind somehow, and I feel and urgency to go there. I hope that Dr. Berke performes this surgery for a very long time and I hope he is training his colleagues to do it to so that they can help people that end up with this condition in the future years.
The headaches are very possibly related to the throat click, I know me, GGCB, and Adam have all had very similar headache sensations since our clicking started. Also, the way you describe yours is exactly like mine, they occur on the side of the clicking too which sounds like its not from stress.
I know it may be. I have no fiances to travel. Wish I did. Maybe I can win the lottery and get to go to Dr. Berke. You are going for surgery in the next couple days right? Good luck. It will go great!
Hi - this is Jim and I'm new to the site. Please advise if you have any ideas regarding my situation. I had surgery on June 10 on my lower esophagus, and obviously the surgeon had to go down my throat to get there - ever since the surgery, I have had pain/discomfort around my Adam's Apple - not great, but constant with no relief. My family doctor thinks that my hyoid bone may have been bruised, and perhaps even fractured. I go to see an ENT in early August. If the hyoid bone had been bruised, I would think that I would be doing better 6 weeks later, but that is not the case. Any thoughts. Jim
PAIN occurring in the neck is a relatively common symptom in ENT practice.
Multifarious diagnoses have been made, ranging from pharyngitis to referred
pain, but in the last few years, several interesting syndromes have been recognized:
stylocarotid (Eagle, 1949); hyoid bone (Brown, 1954); styloid (Steinmann,
1968); omohyoid (Zachary et ah, 1969); and stylohyoid syndrome
Recently, a useful review of the stylohyoid syndrome was produced by
Moffat, Ramsden and Shaw (1977).
The following case demonstrates another cause of unilateral neck pain,
which is easily treated but difficult to diagnose pre-operatively.
M.C.R., female aged 44 years, was first seen in out-patients on 30th June,
1976. Three months previously, she had had some teeth removed from the
lower jaw and developed, soon afterwards, an ache in the right neck, which
radiated to the right ear. The unpleasant pain was exacerbated by talking and
especially singing, of which she did a lot.
On examination:—E.N.T. examination was unremarkable. Indirect laryngoscopy
Her right neck revealed tenderness in an area between the right thyroid
cornu and the right thyroid lamina. Routine blood tests and radiography of
the neck and styloid processes were normal.
It was felt she might have a stylohyoid syndrome and 40 mg. of Depomedrone
was injected into a tender area over the right hyoid cornu.
Subsequently, she had three further injections with minimal improvement.
Tomography of the hyoid and larynx was unhelpful.
In view of the pain on vocalizing, crico-arytenoid arthritis was conjectured,
and antibody screening was performed. All tests were negative, except for
thyroid microsomal TRC which was 1:320. The RA latex was negative.
A medical opinion was sought and thyroid function tests revealed slight
In June 1977, she was started on carbimazole 10 mgs tds but she developed a
severe reaction with polyarthralgia, which settled on drug withdrawal. In
March 1978, she was referred again with the same symptom of neck pain. The
pain was made worse on tongue extrusion. It was decided to explore the right
neck in June 1978.
A right neck skin-crease incision over the upper larynx was employed.
The larynx was rotated laterally to the left, the omohyoid muscle was displaced
laterally and the thyrohyoid muscle split vertically. The right superior thyroid
cornu was found to pass posteriorly and not vertically as is usually expected.
1088 R. T. COUNTER
Schematic diagram to show the abnormal right superior thyroid cornu and area of excision.
The tip of the cornu appeared to be close to the carotid but no evidence of
local damage was found. The cornu was excised sub-perichondrially, the
muscles repaired in layers, and the skin closed with silk (Fig. 1).
Recovery was uneventful, except for a slight superior laryngeal nerve
neuropraxia (lasting for two weeks) from enthusiastic retraction.
The pain disappeared immediately post-operatively and has not returned.
'The superior horn of the thyroid cartilage passes upwards and backwards
and ends in a rounded knob to which is attached the lateral thyrohyoid ligament'
(Hamilton and Harrison, 1971).
This lady had only one anomalous superior thyroid cornu on the right and
its removal cured her pain. There was no evidence to show what was causing
the pain, but it was felt that there was some friction between the cornu and an
underlying structure, possibly the carotid sheath. No evidence could be found
in the literature for this particular abnormality.
This older article in Journal of Laryngology and Otology shows that when the tip of the superior cornu of the thyroid cartilage becomes elongated or posteriorly oriented that it can come into close contact with the carotid or carotid sheath, this is a strong explanation for all the headaches that are explained in this forum that come along with the clicking throat. I think these "hyoid headaches" are most definitely from pressure or inflammation of the carotid sheath.
Your long awaited surgeries are tomorrow and I am so excited for you both. I know Dr. Berke will do a wonderful job and help both of you. I want to tell you that you will both be in my thoughts and prayers for a completely successful procedure.
The surgery at UCLA went smoothly my neck is still very swollen and in a brace so I do not know if it worked yet because I am not able to move or press in on my neck .It is still very painful to swallow on both sides where the thyroid cartilage was removed and water gets stuck trying to swallow but other than this no serious side effects as of yet.
I am so happy to hear from you. I was getting quite worried when you did not post for several days...but now I feel better to hear from you. I am anxious to hear all about it and I have lots of questions, but I know you need to rest and recover, so don't worry about posting back until you feel better. Again...I am just so glad to know that you are okay.
Dear friends... Just to keep you all posted, my entire hyoid bone was removed, I am still very swollen and have some swallowing issues due to the swelling... But over all i think it went well, I don't feel any clicking as of now, I am going to be patient and report to you once I am fully recoverd... Please remember to stay positive and optimistic
I am so glad that you posted.... Just to know that you have made it through the surgery...I can finally take a true breath of relief. I was so worried about both of you when I saw no posts for several days. I felt so helpless here on the east coast wondering how you both made it through the surgeries.I feel relieved now that both you and wildblue98 have posted.
Make sure you get plenty of rest and heal...I can wait to hear about how things went when you feel better...the most important thing to me right now is that I know that you are both okay.
I just wanted to update you on my progess. I have had the stitches taken out since we last talked and the scar is healing nicely on both sides they are each 3.5 cm the surgeons do a really good job of hiding them in a neck crease and they arent as bad as I had imagined the entire procedure was under MAC local sedation. I have not been able to reproduce the larnygeal click at all with head rotation or inward palpation on either side since the surgery, I have a stronger voice already and can talk for longer periods, and can open my mouth wider and chew better when eating food this is good news the larngeal click is definitely curable (the articles speaks the truth) the bad news is I still have a lot of pressure and persistent foreign body sensation and pain rotating my neck and headaches definitely no miracolous instant recovery but that would be unrealistic to expect at this point in time. I had all the stylohoid ligaments removed on both sides when they excised the superior cornus of the thyroid cartilage they were detached from the hyoid on top and bottom (the good thing is you dont even need these and they do not effect head rotation neck movement). This caused my hyoid to pop into a more nuetral and comfortable position away from the cervical transverse process that the surgeons felt would a be better location for it to rest. I still have a lot of little weird crackly crunchy sensations in this area where the ligaments attach to the ends of the greater cornua of the hyoid bone on both sides mostly when I rotate my head quickly I do not know what this is about. My neck is still also pretty swollen and inflamed. It can take 3-6 months to really realize full healing and recovery from this operation so only time will tell how well it worked but at least for now the main clicks that plagued us are gone. And if the final results of this surgery are not enough to satisfy the symptoms usually the next step would be a hyoid trim of the greater cornua though very often the thyroid cartilage excision seems to relieve the problem enough that this is not necessary. I am trying to stay optimistic I think it is great the click is gone but I am definitely still in pain and upset about the other symptoms such as neck pain upon rotation and headaches. Feel free to message me for anymore questions I will keep you guys updated on my further progress.
Also since having the surgery I have come to the realization that the throat clicking may not just be caused by the superior cornu of the thyroid cartilage clicking against the transverse process it could also be the greater cornua of the hyoid bone on either side clicking against the transverse process and these are hard to distinguish and easily confused. I am hoping mine was just the thyroid cartilage but their could also be a hyoid bone component. Also with age the angle of your hyoid bone and cartilages change actual anatomy often times narrowing inward this I learned explains the clicking in some people with no apparent injury.
I thought you were going to get only one side done this time. I am glad that you got both sides over with. I am very happy that your clicking is gone! As for your headaches and pain, maybe all the swelling in your throat area may be pressing on nerves...once all of the swelling is gone you may feel a better result regarding those issues still left over. Are you still able to talk with Dr. Berke and ask him why you still have crackly crunchy feelings (did you have them before, and did they get worse?)? I hope you are feeling better...I do have many questions and I keep thinking of even more questions and I do not want to inudate you with them so I will only ask a few each time I post. And when you feel up to it, I would love a run down on what it was like from right before surgery until you got into the recovery room. But for now here are a few questions:
1. How long was the procedure?
2. Could you swallow right after the procedure?
3. When were you allowed to eat solid food?
4. Why did you have to wear a neck brace?
5. Are there any things you need to be careful not to do during the recovery period?
I am praying for you for all of your symptoms to go away.
FYI, I am sending Dr. Berke my records this week so that maybe they can help me in getting my insurance to approve of a consult with him.
Thank you... the hyoid bone is important for swallowing, but you can learn how to swallow without it. In some cases it is common that doctors remove it when they find cancer on the hyoid bone.
For any of you that are suffering from clicking in the throat, After going through 6 surgeries which includes removing both thyroid cornus and parts of the hyoid horns in two stages and finally removing it entirely. In my opinion the clicking is caused by the stretching of the ligaments of the effected side, which in turn compremises the structures of the hyoid or thyroid and it contributes to an uneven elevetion which makes the structure clicks against each other or against the vertbre... Please do you homework before you are going to have a surgery and make sure that the doctor the you are seeing is familiar with cases such as yours and had performed surgeries on cases like this.
I hope that you stay positive and please contact me if you have any questions...
I am sorry I did not post back sooner I have been without the internet.
1. How long was the procedure? Mine was 1 hr 30 min but typical is 45 minutes for each side
2. Could you swallow right after the procedure? Yes I had some trouble though and liquids would kinda have come up, a little uncomfortable but you will be fine nothing bad.
3. When were you allowed to eat solid food? 2 days after I could eat solids
4. Why did you have to wear a neck brace? They put this on me because it helps it heal and you dont want to turn your neck for a couple days
5. Are there any things you need to be careful not to do during the recovery period? I would be very careful not to touch the wound and give yourself an infection
Dr. Berke did get rid of the clicking of the thyroid cartilage now that things have settled down though unfortunately I can now tell their was more to my issue than just the clicking thyroid cartilage I feel very strongly there is also a hyoid component clicking on the transverse process also. After talking to the doctors I now realize that the clicking can be also caused by the hyoid hitting the tranverse process. While the surgeons were able to cure the thyroid superior cornu hitting the tranverse process, I still have. clicking of the hyoid hitting the tranverse process when I turn my head it is much more subtle than the click I had before but I definitely notice this friction/grinding. Originally I was scheduled for a left SCE and possible hyoid trim I opted out of the hyoid trim bc I thought it just might be cartilage but now I realize it is most likely part hyoid hitting tranverse, this is why if I were you I would be really careful with how you approach surgery because if it is more than one structure Iou may need another operation to the trim the hyoid since they wont trim both sides of the thyroid cartilage and hyoid at the same time. As far Adams theory of this being a ligament issue this may. may not be so because my superior cornus were physically elongated when they took them out during surgery and examined them, in addition to this all my stylohoid ligaments were removed and I still have some clicking at the end of the greater cornua of the hyoid. I feel strongly that I elongated the greater cornua of the hyoid bone also or had a similar injury with this structure this was a symptom I always had too I just had not noticed it because the throat click kind of masked it since it was louder.
Unforutanetely also as far as the pressure and foriegn body sensation I still have that at the end of the greater cornua of the hyoid bone. The surgery did help me it got rid of part of the problem but now I realize that my issues were more "hyoid" than they were thyroid cartilage. I have a good feeling though if they trim this part of the hyoid bone it will be just as effective as the SCE procedure it is basically the same procedure just a little higher up, but we will talk more about this I am a little rushed right now and I can give you more details on the surgery later dont worry you will be fine though living with this for 2 years is 1000 times worse than this surgery would ever be actually surgery was a nice vacation because you actually get good drugs.
Wildblue98 I'm glad to hear that you are doing better...This is the same process that I had to go through. I had both thyroid cornus removed and the horn of hyoid bone trimmed as well. the clicking did get better and there was some relief with each surgery, however the click kept traveling to a different location and wasn't eliminated. Until the entire hyoid has been removed... although I feel much better after having the procedures done, even after the whole hyoid has been removed my there is still a sensation of foreign body in the throat. from experience of having both of those procedure done, I can tell you that there is definitely more to it then just elongated hyoid horns or thyroid cartilage. In my opinion It makes sense that a ligament or a muscle can stretch or get torn, as oppose to a bone or a cartilage getting elongated all of the sudden. According to researches and studies that I have read, whenever there is a compromise in ligaments it will create dislocations or clicking. ( which was the result in my CT as well as other patients I spoke with, that has the same issue of clicking in the throat)
This is from wikipedia "Ligaments are only elastic; when under tension, they gradually lengthen. (Unlike tendons which are inelastic). This is one reason why dislocated joints must be set as quickly as possible: if the ligaments lengthen too much, then the joint will be weakened, becoming prone to future dislocations...
The consequence of a broken ligament can be instability of the joint. Not all broken ligaments need surgery, but if surgery is needed to stabilize the joint, the broken ligament can be joined. Scar tissue may prevent this...
That is too bad that you still have a foreign body sensation even after the whole hyoid bone was removed. I definitely have not developed clicking in any new locations after having the ligaments and cornus removed like you had mentioned happened after your surgery, it may be that louder clicks masked smaller ones because I can honestly say I did not even notice these before my procedure because the throat click was so loud but I knew they were there all along though barely noticeable. I agree it definitely may have initially been a ligament injury that knocked things out of normal positioning causing bones and cartilage to get closer to the tranverse process, but now that I have no ligaments or thyroid cartilage which in my case definitely feels better than having them I guess it does not really matter. It could also have very well been a cartilage and bone injury seeing how tiny and fragile that area is if their is traumatic force in the same area the greater cornua of the hyoid bone and superior cornu of the thyroid cartilage are within centimeters of one another and both structures could become deflected or warped from the same injury similar to what happened to patient 11 in the Utah/UCLA study. I can also say with a good amount of confidence that the greater cornu of the hyoid is definetely causing significant pain and pressure if I push in the right manner I can also still pop the hyoid into the tranverse process where the ct scan shows an elongation of the greater horn. The two sides of the hyoid seemed to be connected in the sense that if you push too hard on one side the other will slightly pop out, I think this is just sideways pressure slightly displacing it enough that the opposite horn can pop against the tranverse process. I am still shocked though that you have a foreign body sensation hopefully this will go away because I cannot make sense of that, seeing that your ligaments, both cornus, and hyoid bone has been removed the only thing in that area that could cause a sensation would be inflammation of a muscle, scarring, or left over inflammation from surgery. So besides foriegn body sensation in the throat are you left with any other troubling symptoms?
I also just found this great article called Dislocated hyoid: a new clinical condition that was published last year out of George Washington hospital. The article shows that the actual hyoid bone can dislocate and become rotated (this happened to the man in the study after screaming at his son) anyways it was interesting because it showed that a dislocated hyoid may not be just from ligaments the bone can actually rotate and pop into the throat area causing considerable pain and foreign body sensation. They cured the guy by cutting the rotated piece of bone out. I am kind of leaning more towards a bone and cartilage theory because the ligaments in that area are pretty insignificant and I dont think a slight tear in that area would create such strong symptoms. Also how do you explain the physical elongation of my thyroid cartilage, I asked all the surgeons and they said they were physically elongated not in relation the spine but actually at a structural level longer. Other studies show that this structure elongates and stretches out literally not from lax ligaments. Also, the fact that you can have all the ligaments taken out and it doesnt effect head rotation or anything makes me think they are pretty tiny and insignificant to this issue. I think it is a good debate , but I personally do not think a couple microscopic tears in the ligament fiber is going to cause popping of all these structures all over the place, more likely it is an actual cartilage bone injury especially when the abnormality is confirmed in the operating room under visual examination.
I just want to let you know Dr. Berke definitely got rid of the loud throat clicking and snapping that happens every time I turn my head unfortunately though the subtle snapping crackling noise I was hearing was there before the procedure also and I assumed it was just all the thyroid cartilage but it is also hyoid. I am really confident that the hyoid is also rubbing slightly against the transverse process on both sides, the sound is very slight and only audible to me with the right head rotation, it is not a loud pop, more like a feeling of friction and slight contact between two bones and my head rotation does not feel fluid but blocked at the point where these two bones make this noise I also have pressure and foreign body sensation. I just want to make sure you are informed about the surgeries because your case sounds so similar to mine you may very well have both thyroid cartilage and hyoid clicking in there and this is why you feel like it is catching on multiple structures, or it could be one. Either way you need to take this into consideration or else you could be pretty miserable driving back to LA for multiple surgeries. My strategy going into the surgery was to start conservative and eliminate the thyroid cartilage because I thought this might cure the problem completely and it was slightly safer than the hyoid bone trim. It did cure those really annoying loud pops with head rotation that occur every time you rotate your head but my greater cornua is still catching on the transverse process though and it is very bothersome, so in this sense one might argue it would have been smarter for me to do the left thyroid excision and hyoid trim in the same procedure, but then one can argue you have no way of knowing how much the hyoid is involved until the thyroid cartilage is gone. So, I guess what I am trying to say is it is important to put together a strategy here based on realistic expectations or you can end up digging a hole for yourself with multiple procedures, I highly doubt Dr. Berke will do a bilateral SCE and hyoid trim on both sides but I know he will do it say both on the left side, and if the left side is 80 percent of your disability like it is for me and you have 1 surgery it might be smartest to just trim the hyoid and thyroid cornu on the left side first and see how that goes.
Also you wanted to know more about the surgical experience, while it was very typical. The hospital is very high tech, the nurses are some of the best in the world, and basically you just show up check in, you get about 10-15 minutes to talk to Dr. Berke and his fellow about the procedure and then you sign the paperwork in the preoperating room, after you do this a nurse will give you an IV with versad and some other drugs to calm you down, once this is administered you will be wheeled down the haul to the operating room where you will still be awake you wont be scared at this point or even care about dying because your so high on drugs. Once you are in the operating room they start MAC Local Sedation I was all freaked out I would be awake and remember the procedure and even though I technically was and my eyes were open the whole time I can tell you that all I felt was the warm blankets hit me I made one comment like "wow these blankets are warm" and then literally what felt like half a second I woke up in the recovery room don’t be startled if your choking a little when you wake up they give you a pan to spit into it will be hard to swallow your own saliva for about 48 hours after the surgery and you will have a really bad sore throat. I have to be honest by far the worst part is living with this condition much worse than this surgery.
Also I had a question for you did that Dr. in Boston you spoke with feel that a ligament tear in the lateral hyothyroid ligament causes all this popping and how did he think it should be fixed. The thing I find most interesting about Adam's ligament theory is that the lateral hyothyroid ligament passes between the tip of the superior cornu of the thyroid cartilage and the extremity of the greater cornu of the hyoid bone. It does make sense if this structure got really loose like a sprained ankle it could create a problem in which the hyoid bone and thyroid cartilage start moving out of their normal range and hitting the tranverse process I havent seen anything written on ligament laxity in this region though in the medical literature and the surgeon I asked felt it was not a ligament issue well I guess I will have to ask more opinions on this.
Did your health insurance fully cover this surgery? I am desperate...mine is getting worse to where I am having trouble swallowing food, drinks, saliva...whatever. I am miserable and the clicking is getting harder and louder. I am a singer and I have also noticed that I can't sing for long periods and it's difficult to even speak for a long time, as my voice gets hoarse. I live in Cleveland, Ohio, so getting out to CA for the surgery would be tough, but there is literally NO doctor (even with the Cleveland Clinic here) that can help me or has any idea about this surgery. They all just tell me it's something I have to live with.
Hello, I was referred to you by a friend. My name is Marla. I have had loss of taste for 2 1/2 years now. It just happened overnite and all the doctors I have seen have no idea what happened to me. They call me a rare case. Now I have lost my sense of smell too which I know is related. Do you have any idea what could have caused this? I am only 59 years old. I would like to come see you if possible, maybe YOU would have some answers. I have my medical records from all the other doctors and specialists I have seen if you would like to read them. Hope to hear back from you.
Thank you. Marla
I live in New Zealand and have this problem.
I'm going to a ENT in 10 days and hopefully with the information I've gathered from this community I'll be able to express my problem with strong communication.
I originally thought this problem was located in the oesophagus, but was shocked and confused when the endoscopy came back completely empty. How could so much pain arise from nothing? lol
After reading a large section of this communities posts I felt my neck and noticed the left side of my hyoid being strong, and the right being tender.
This **** ***** hard, but I feel like the internet has at least saved my sanity!
Thank you for all of the great information about the procedure. The only thing that I am not sure I will be able to handle is the not being able to swallow for 2-3 days. I think that I will freak out. Even if it happens for just a couple of seconds, I immediately go into a panic mode. If I decide to have the surgery, I will definitely get only one side done (left side) and have both of the procedures done on that side at the same time. How long did they say you would have to heal and wait in order to have the other procedure done on you?
You will be able to swallow, it just will feel a little weird like when you swallow water incorrectly it is really not that scary I had both sides done and could tolerate it.
My hyoid bone still pops when I push in on the left and right side so there is definitely a hyoid component to my issue: my surgery report says
Findings: The patient was noted to have a click when moving the thyroid and hyoid cartilages, both to the right and left.
Since my superior cornu thyroid cartilage and attaching ligaments have all been cut out I can still feel the hyoid cartilage clicking when I push in on the greater cornua of the hyoid bone on the lateral side of the hyoid bone, by looking it diagrams I can tell my clicking occurs in the area between the tip of the greater cornua and the tranverse process. Unfortunately in my case the majority of the disability was coming from the hyoid bone as I feel fully recovered now after a month I can tell without a doubt the intense pressure, headaches, neck pain and foriegn body sensations are coming from the hyoid bone in the region that it is popping I feel strongly the inflammation from these two bony structures hitting eachother is creating all the painful sensations. Now that I have been through the procedure, I agree with you that the best thing to do would probably be to have both hyoid trim and SCE on the left side. As most of us long term sufferers have realized this problem will certainly not fix itself with time. I am planning on going back in December to get both of my greater cornua excised I think they usually make you wait at least 3 or 4 months before they will operate again.
My health insurance covered the majority of the surgery (80 percent or more) even though it was out of network. I cant sing, talk loud, or talk for more than 5 minutes at time without feeling like my throat is going to explode, in my case this is coming from the hyoid bone injuries to this structure can create trouble speaking, swallowing, shortness of breath, headaches, chronic constant pain in the lateral side of the throat that radiates to the ear, throat, temple, cheek and TMJ. Pain in the lower molar teeth. upper chest pain. Dizziness or fainting when turning the head towards the injured side. Pain when swallowing. Chronic sore throat that tightens when swallowing.
Chances may be very high if you have all these symptoms something is not right with your hyoid bone.
Oh...so you can swallow, it just feels funny...that makes me feel better. I thought you can't swallow. I am so glad that you are fully recovered from the surgery. That was pretty fast! I thought it may take 2-3 months. Even though the first procedure did not fix all of it, do you at least feel a little improvement? I hope you are enjoying what is left of the summer. Are you going back to college in September or are you done? Talk to you soon.
P.S.: I am sending Dr. Berke my records this week!
This site took me forever to find. I dont want to waist anyones time here but I want to know if anyone has any of these symptoms and could help me figure out how long it will take for me to heal. 6 weeks ago I was jumped/stomped on in a soccer game.Most of the stomps were on my neck/jaw. I was lucky and only ended up with a broken Hyoid bone.Since the incident Ive realized just how serious and rare this injury can be. Ive seen 2 ENT specialist and numerous doctors. I havent had a CT scan or an MRI but ive had a bunch of xrays and 2 scopes. The bone they say isnt effecting anything internally and will heal on its own. As of right now I still have tough times swallowing.If I speak too much my voice gets hoarse my jaw tightens up my tongue gets heavy and breathing becomes difficult. My neck and shoulders are all tight and strained.I still get a very half dull hald sharp pain right in the middle of my throat. I cant lift my chin high but I can down and slowly turn left and right.If I lift too much, talk too much or do too much minor activity my neck tightens up, swallowing and breathing becomes more difficult and the pain becomes that much stronger. I cant walk more than 1 to 2 city blocks depending on the day without losing all my energy and having all those symptoms come on. I dont want to write too much but does anyone know how long it will take before I can get back to work, or do any activity what so ever?? any help would be greatly appreciated I couldnt be more frustrated right now.
I have had improvement in the sense that the popping whenever I turn my head has subsided, but all the rest of the symptoms still persist from the hyoid region so in my case definitely the majority of the issues were hyoid. Scottiek that is really unfortunate you broke your hyoid bone I too have a problem with mine and it prevents me from walking more than 1 to 2 city blocks it as an absolute joke.
What part of the hyoid bone did they find a fracture in?
Now, you are different from people on this site because you say your hyoid bone was actually broken and noone else posting on this site has had a broken hyoid bone. I do not know how to treat a broken hyoid bone you would definitely have to ask the ENT surgeons opinion on this, but if your symptoms persist maybe there is some sort of surgery to excise the hyoid bone if it does not heal, the fact that you are still in a lot of pain 6 weeks out is not a good sign at all I would talk to your surgeon about options to fix a broken hyoid. The good news is you can live without that bone if it does need to be removed.
thanks for getting back to me. I dont have headaches and I dont have that popping sensation some of you talk about. My break was found on an xray and the doctor didnt believe it so I had to come back the next day so he could consult with his radiologist. They said it was broken but what part I dont know. I saw an ENT specialist a few hours later and after some tests including a scope she said she wasnt sure it was broken but since it wasnt effecting my airflow or my voicebox she wasnt going to do more tests and thought it would heel on its own. She also thought i would be back to work in 10-14 days. I spoke to many doctors since and the original doctor was ademant that it was broken. Unfortunatly I dont know what part, at that point I didnt even know what shape the Hyoid bone was. Ive seen a second ENT specialist but from the same hospital and after another scope they still couldnt find anything wrong. after a month of no meds I was told due to my blood pressure still beign elevated I needed to take pain killers at least to relax myself and get my blood pressure under control. When i was in emergency last wed they were going to give me morphine but I was able to convince them I didnt need something that strong and addictive. Unlike most of you Im in canada and our health care system is so much different. Its a very slow process and I guess I will just have to wait til I can get a CT scan or MRI. NO one has been able to tell me anything but this will take time or Im sorry Ive never dealt with anythign like this before. Do you need any other info? The doctors dont seem worried about the break but I still hae severe sypmtoms so Im really stressed out. Thanks again for getting back to me
I am so sorry about the frustration you feel regarding your broken hyoid. Please know that those on this site really do feel for you.
Just some information about your hyoid bone break. I have actually heard of it. As a matter of fact, Throughout my several years of suffering with my hyoid issue and doing research, I learned that a professional wrestler (I believe from Calgary) named Lance Storm, got a broken hyoid bone in 2006 during a wrestling match. He said in the articles that he had trouble swallowing, pain, etc. He went to one doctor that knew nothing about it, and he also found one that knew a little about the condition. I guess that doctor said that it would presumably heal itself in 6 to 8 weeks. That is pretty much what I found out about broken hyoid bones.
I have heard that medical testing is slow in Canada. It took me over 3 years to even find a doctor who may be able to help me here, but I am sure if I were in Canada, the wait would have been much longer. Is there any way to get any help in the US or is that not allowed?
If I come across any information, I will certainly post it here for you.
thanks for your info. It is really slow here. With this injury thankfully I dont wait the 4-8 hours in the emergency room that a lot of ppl wait. I always get rushed in. When you`ve seen 4 different doctors some several times, and 2 different ENT specialists and you still cant get more then xrays and scopes its a little frustrating.I did a radio and tv interview yesterday from the incident and 9 min is all I could speak on the radio. Yesterday I was sore but today all I have done is sleep and take painkillers. My Jaw and neck feels like every muscle is the area is strained and so swollen. I would think if all I had was a Hyoid bone fracture that I wouldnt have some of these symptoms. Can you imagine speaking for a short time axhausting you this much? even walking a short distance is too much. Im sure some of you that have been dealing with your Hyoid problems are in worse shape than me, so I hope it doesnt sound like I am whinning. Canadians can go to the States for treatment but in almost everycase its out of there pocket.My family is thinking about sending me to the mayo clinic in minnisota but I really dont want to take their money and it could be a waist if nothing is found just like up here. I`m going to push to get things figured out here and the more informed I am the more doctors will listen to me and take this a little more seriously.
Thanks again for the help.
Hi I was wondering if you could tell me more about what they found during your consultation. I remember your case sounding very similar to mine, I am curious what they have decided to trim and excise in your case. Are you getting a bilateral SCE? or hyoid bone trim. Thanks.
would anyone know how much a CT scan and an MRI would cost without insurance in the US? And would you know the wait it would take to get them? Im thinking about flying down to minnisota or chicago to get them.Also can anyone request and get them without being refered by their doctor or specialist?
I did some checking about this for you. I found that Shields MRI can do them without a doctor's order...in fact, you can buy gift certificates to give to your loved ones so that they can get an MRI...strange gift huh? Anyway, go on the internet and do a search for the Shields MRI closest to where you would like to go in the USA and give them a call. Hope this information helps. As for CAT scans...I think you may need a referral from a doctor. MRIs used to be quite a alot of money, but I think they went way down in cost. If people are giving them as gifts though, they can't be too expensive...I hope. Hope this info helps. Let us know how things go.
thanks for looking into that for me. I found a private or semi-private clinic in calgary(CAN) that does MRIs for around 500$ as long as you have a canadian health card, and have a doctor requesting the MRI. Only problem is Winnipeg where I am has about 600,000 ppl and only one of the many hospitals has an ENT department. I cant see my original ENT for another 2months, and the other ENT I have to wait til sept 29 to see him. My GP, family doctor cant get me in any sooner and cant help me. A specialty clinic I originally went to cant see me for 3weeks but even then that doctor has told me he has no idea whats going on in my neck/ throat.
From what I have read on this forum all of you have seen doctor after doctor so Its probably not worth the money to fly there and see someone when they might be as clueless about this as doctors here seem to be.
I can not explain in English: I try to translate with google translate.
Dr. Berke has touched with the fingers through the thyroid cartilage to feel the presence of clicks in my throat.
He found several clicks and decided to fix my surgery.
The hardest part was after the surgery because I could not even swallow my saliva. The next day I was very better.
It seems to me that my situation has improved a lot. For now, however I can not say we have solved all my problems. Look with confidence for further improvements.
I can talk without getting tired as before and feel much less constriction in the throat
But I think there is still a click in front of my cartilage.
Thanks for the update I understand most everything you are saying, did the doctor's find anything abnormal during your surgery? Where do you still have clicking? I am glad everything went well, the swallowing problems will go away do not worry.
No, they not found anything of anbormal. I have still a sort of pain in front part of hyoid bone. My feeling is that this is not a click: I thing the omohyoid ,or some other muscle, is not working at that point symmetrically.
Tomorrow I will be meet dr. Berke again.
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