History of my problem: For as long as I can remember, I have had a problem with my hyoid bone popping out and causing excrutiating pain. It is always the same - the right side of my neck. At about the age of 8 I talked to my pediatrician about it and he promptly told me it was not possible. That I was having anything "pop out" in my neck. He contended that there wasn't anything there that could pop out. So I just continued to push it back into place whenever it popped out. Back then, it was very easy to push back and only lasted a few seconds until I got it back. About 3 years ago, I noticed that this was happening more and more frequently (used to be about 2-3 times per year) Now it was happening about every month and was much harder to push back. Sometimes taking 20 or more minutes. During that time, it was extremely painful to swallow or talk. After I would finally get it pushed back into place, the pain would go away, but my whole neck would be sore up to my ear and through my jaw. It felt bruised, but no visible bruising on the outside. Over the next couple of years, this problem continued to get worse, happening weekly with some minor "slippage" on a daily basis. Throughout my life, I have talked to various family practice doctors about this problem. They all contended that it must just be a "lump in my throad" like when you get emotional. Or maybe it's just excess head conjestion. Or maybe it's just a muscle spasm. Or maybe I'm just imagining it. Whatever the case, no one had ever heard of anything like it and no one ever took me seriously. So, I started researching on my own. I could not find anything that sounded like what I had. I posted questions to "Ask and Expert" all over the web. I did get some respones. all of which started with "wow, that is interesting. Never heard of anything like that before." One physician directed me to find a good ENT. So, I did. He took me seriously. He ran tests - CT scans, swallowing x-rays, blood work, etc. I saw a speech pathologist and everything. The swallowing x-rays showed that my hyoid bone did not more in unison. It appeared that the hyoid, which I'm told forms in the womb from 3 point of origin and then fuses into a solid bone before birth, had never fused into the solid bone at all. The ENT that ran the tests did not feel qualified to handle this case, so he referred me to a colleague who does a lot of throat cancer surgery and work around the hyoid bone. He reviewed the tests and theorized that if we removed the portion of the hyoid that was not firmly attached to the rest of the bone, it should solve the problem. I ran this thought process past the head of Otolaryngology at the Mayo Clinic, who had also never heard of such a problem, and he concurred that this theory did make sense. However, there were no guarantees due to the fact that no one had ever seen or heard of anything like it before. So, I went ahead with the surgery on 10/26/06. It seemed to go well. For 3 months, I had no problems. Then on 1/23/07, it popped again, just like it had always done. I immediately went back to the surgeon who is completely at a loss of what to do. His only recommendation is to do more surgery and remove more of the hyoid bone. However, the more they take out the greater the risk of swallowing issues post-surgery. I'm not sure I'm ready to sign up for that again just yet. Since the 1/23 incident, it has happened 3 more times with the last time being only 2 weeks from the previous episode. I'm worried that this is going to continue to get worse again. If it were only going to happen a couple of times a year, I would just deal with it like I have my whole life. But if it gets back to being almost every day, I can't imagine having to continue to deal with that for the rest of my life. As long as the bone is in place, I have no problems. No swallowing problems, no pain, nothing. I just never know when it's going to pop. I do a lot of public speaking and presentations. My greatest fear is that it will happen in front of an audience. The pain is so sudden and intense that I immediatley burst into tears. This is the main reason I have been pursuing this issues to begin with. Any suggestions? I saw in your archives that a person with the nick name of "creyn" described a similar condition back on 11/22/2004 on this web site. Did anyone ever help her? Any feedback would be greatly appreciated. Thanks!
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 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 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?