Strange Tongue/Jaw/Ear Issues

[Purple74]

Not sure exactly what started this whole thing off, but last July (2012) I had an intense sore throat left side only with a minor ear ache.  Enough that it had me worried about the "C".  Went to prompt care a few days later to be told I probably had a virus and they could see nothing in my ear or throat.  They did a strep test - negative.  Suggested I might try OTC allergy or even acid reflux meds.  Imagine my relief.  Well, I got no relief.  I scheduled an appt for a physical.  Three weeks later still having problems...GP says he sees nothing.  I note that I do have a slightly enlarged but non-tender lymph node.  Still biggest complaint (besides fear) is throat and minor ear pain...all left sided.  He suggests more acid reducers.  I do that, have a deep filling done and suddenly the pain is constant and terrible and now includes my tongue...which is by far the worst and scariest.  So far, this is still going on.  I have seen three dentists, an oral surgeon, two ent's and a neurologist besides my gp and the prompt care doctor I started with.  I have had a brain mri, a neck ultrasound, and a neck CT scan.  All unremarkable other than noting several "benign appearing" scattered lymph nodes on the ultrasound and something to the same extent noted on the CT..."no frank adenopathy."  I am at my wits end.  the ear pain and the tongue pain are treacherous...the throat rarely bothers me.  The neuro diagnosed me with trigeminal neuralgia and put me on neurontin...which barely helps (if at all).  And of course, the fear remains even though one would think all the doctors and scans should make me less scared - the fact that the pain persists keeps my fear going.  Not to mention the terrible things I can find on the Internet.  Anyone have anything similar?  I find the trigeminal neuralgia hard to swallow because the tongue and ear are my biggest complaints and that doesn't seem to fit?  Thanks for any help/advice you can offer.  

[Suescottnh]

I am new to this site and wondering how you are doing. I too have some of the same issues and wondering if they are missing something. It started with dental crown for me an I ended up with burning pain in jaw that radiates to under ear and in my gland...feels like a lump there. Sometimes it goes to my temple and feels like there is something in ear. The pain will go into the Molar tooth that I had the work done on and makes me think it's all related to the tooth, but I hate to pull it if that's not it. I never have clicking or popping, just pain that comes and goes in intensity and where it is at. I also have crazy salt taste on the same side everyday that changes to bitter sometime. Getting very frustrated with no answers but maybe neuropathic pain. I am taking neurontin with not much change. Just started B12 and been on numerous antibiotics. Getting depressed and frustrated! Anyone have any suggestions?

[jayne09]

Since the beginning of september 2014 I have had numerous problems with my face. Like many others my googling the issue led me here. Where do I begin? It all started with a simple ulcer on the inside of my cheek down near my impacted wisdom tooth on the left side of my lower jaw. All of my symptoms are on the LEFT side of my face and are as follows: swollen tonsil, tingling and burning left side of tongue , sensitive inner cheek, ear ache (feels deep), saw jaw, saw masseter muscle, masseter spasms. These all started at the beginning of september 14.

The only health issue I had before was a blocked left nostril and post nasal drip for about a year on and off. I also had h.pylori in june, went on eradication meds and tested negative 4 weeks after treatment. I suffer from heartburn and take 40mg of somac each day along with probiotics and most of the time a good diet. I have suffered from heart burn and indigestion since 2010 and have never had the problems I started to get at the beginning of september.

They have found glandular fever. I got tested for previous infection and current infection and I tested positive for both. I also have a higher than normal white blood cell count. Dr said this is because of the glandular fever.
An icat scan done at my dentist showed an asymmetrical maxillary  sinus. They had no cause for concern but I am lucky I pointed it out and told them I was worried and they said we don't know here's a referral to an ent.
I spent 5 days googling maxillary sinus and what would cause one to be larger than the other. I found my diagnosis in a journal talking about "silent sinus syndrome", my first ever visit to an ent and he agreed with me and gave me the formal diagnosis of silent sinus syndrome. It's a rare condition so not hard to diagnose. I was told I've had this for a long time, it's a chronic disease and rarely has symptoms. It's long term effect on the orbital floor can be bad and cause double vision though.

I went over seas for 4 weeks with the face pain in tow, came back had an mri which showed I have an arachnoid cyst on my brain. However, dr's say I was born with the arachnoid cyst and that it's not related - besides even if I wanted to link it I couldn't as its on the right side. Seeing a neurologist in 2 weeks time.

It's hard to explain the sensation but imagine brushing your teeth, afterwards you get the menthol freshness. Well, with the left side of my mouth, the menthol freshness stays for longer than the right side and can be painful. That pain can be triggered throughout the day for no reason. I don't wake in the night from this pain. The pain is not on the outside.

I thought at first I had a knot in my masseter muscle so I began looking into how to massage it. This seriously made the problem worse and ended up treating it with cold packs after I tried with heat and it didn't work.

Then I diagnosed myself with a blockage in the stensens duct, I even got my dentist to agree with me. But It's not blocked, I am not dry on that side of my mouth. I ended up thinking maybe an infection could be inside the duct.

I don't know how many days I've lost believing I have a cancer somewhere and that I am dealing with gps who just want to diagnose me trigeminal neuralgia. I was under the impression only a neurologist should hand out such an extreme diagnosis and only after they have done a test to rule out tumors on the nerve as that can cause the same symptoms as TN? I read that in a journal.

Basically my health team thinks it's logical to remove the most common causes like the sinus silent syndrome and then my 4 impacted wisdom teeth.

I just had the sinus surgery a week ago, nose is still blocked, got an infection 5 days after surgery and my symptoms in that side of my face have not let up - before the infection or during.

Next is my wisdom teeth surgery in 2015.

The only other noticeable difference from the left to right side of my face is at the angle of my jaw. If you feel the angle of your jaw, not under, just on the edge. I have ridges that go upwards, I think they are tendons? My left is larger the right and sometimes sore - probably because I am always touching it now I've noticed it.

I have read numerous articles about cysts in the masseter muscle, cancer in the jaw, burning mouth syndrome, tumors of the parotid gland, TN, malignant hypothermia, myxomas, hemangioma, hypertrophy, jaw alignment, tendinitis and the lists goes one. I'm at a loss. I seen a mayo facial specialist last week and before he does any tests would prefer to rip all 4 wisdom teeth out, as they are the likely cause in his opinion.

I guess I am happy to be told that cancer isn't the likely cause. But I can't shake the feeling something isn't right. My wisdom tooth has been partially exposed for over 2 years and I've never had these problems. If you asked me where the pain was I wouldn't point to the wisdom tooth.
I must say though, after the sinus surgery my left tonsil did start to go down a little.

Just some food for thought: in mid October 14 I woke up and my tonsil hurt more than usual. I got a qtip and tried to remove the white spot on my tonsil thinking it was food or puss. To my shock horror it was hard and not going anywhere. Back to Google I went. Found out it could be a tonsil stone, watched a youtube video on how to remove it and after battling with it for 3 days I got it out gently with a pair of blunt tweezers. The pain left immediately. I thought I had been given a second chance at life, here I was thinking I had cancer somewhere that nobody could find. You could say my spirits where up until the pain returned the next night. I returned to the mirror with a flash light in tow to remove another possible stone but I couldn't find anymore.

2 weeks later my ent (without me mentioning it) said  that I have tonsil stones. I said I know I had one a few weeks ago but I can't see anymore. The ent said he could! So I have more I just can't see them they must be at the back.
I read somewhere that this lady removed a stone it started bleeding and had to go to the hospital. So if you have a stone I wouldn't remove it like I did. Maybe it's possible that a stone could be pressing on a nerve? And be causing this weird pain in left ear, cheek, tongue and jaw. Also if you Google what causes tonsil stones, post nasal drip is one of them (my ent said the same thing). I did have that from my blocked maxillary sinus and would explain now why after surgery my tonsil has gone down a bit. Although it hasn't anymore but I do have bad post-op infection that caused extreme back of the eye pain(left) and caused it to swell under the eye once the pain went away.

Anyway I am not convinced it's caused from one thing or the other. I just hope I have crossed all my t's and I haven't missed something. I swear my dr's hate me! Any thoughts would be appreciated. Good luck all!

[nancyj0]

I'm going to take your advice and try the digastric muscle exercise. I also have the feeling of someone choking me in the throat.  Currently, my jaws feel like they are twinging on their own and my left ear aches.  I will let you know if I get relief.

From reading the posts, it seems like the symptoms started with a sore throat followed by ear pain.  My symptoms began after I came down with pityriasis rosea and severe sinus problems in May 2014 (I had major surgery 5 months before).  I remember I was constantly trying to clear the thick mucus out of my throat.  I wonder if the constant clearing of the throat is what messes up the digastric muscle? Or maybe from the surgery? Or both? The ENT put me on allergy medicine which caused my pulse to run over 180.  Between the rapid pusle and the ear pain, I ended up in ER and had a CT scan done on my sinuses and neck.  Everything was fine.  All the blood work was good.  Since then the pain has spread to the jaw.  I had some minor popping in the right jaw.  Now the pain is more like arthritis and it is in both jaws.  The pain has gotten so bad that I am afraid to eat solid foods.  

I saw a dentist last week for a growth I recently found on my left gum beyond where my wisdom tooth would have been if I still had it. The dentist said he was 100% positive that it was bone from when the wisdom tooth was extracted and it started protruding due to bone loss. He also noticed a fold in my gum line where he said a nerve was exposed. He said that might be causing the pressure in my ear, jaw and face. I have an appointment this coming Wednesday to get it checked out by another oral surgeon.  

Since then, I had an incident of severe pain across my face that affected my jaw, ears, eyes, and head (both sides of my face was affected this time).  It was extremely painful and lasted a couple of minutes, with the pain subsiding afterwards. It felt like someone jammed a stick into my lower jaw across my mouth and into my other ear.  I was on pain medicines for 12 hours before the pain was bearable.  It is my hunch that I truly suffered from Trigeminal Neuralgia which was a lot more painful than this Mayofacial Pain Syndrome that I was recently diagnosed with by a previous oral surgeon.

I also have a 1" mass of knotted up muscle on my neck under my left ear.  It feels fibrous to the touch (not actually like muscle).  I'm supposed to see a neuro surgeon about it. Still waiting for my doctor to make the appointment.

[spursangie]

I have scanned through the list  of posts and was keeping everything crossed that for moench that the chemo and radiotherapy have gone well.  I truly hope so.  It's going to be a tough time.

I just could not believe the amount of people who have similar symptoms to me, although mine extend up behind my nose and between the eyes, and something is really affecting my vision.  I had infection draining from the gum on the left hand side of my lower jaw 21 months ago and then nothing but problems since.  I can feel something behind the bridge of my nose and in the front of the throat, like pressure and discomfort, cracking jaws, pain and swelling under the chin (which my dentist found but said could not be infection as it is over the midline), pain under the tongue and somewhere behind the tonsils, particularly on the left, pain in the roof of my mouth (the soft palate) and tingling there, also in my forehead on the left,, an awful chemical/metallic bitter taste at times.  Recently I keep smelling something like blood but have no nosebleeds.

I have had so many investigations - MRI of the head, neck and brain, CT venogram, lumbar punctures (because of my vision), blood tests, consultations with neurologists, maxillofacial specialist, ENT, etc.  Nothing doing, all they have found are small cysts on my thyroid and the back of my tongue. Some of the doctors treat you are mad and think that if the tests are normal you should be 'reassured', but when the symptoms don't go away but get worse, how can you be?  I do have advanced glaucoma, but my consultant thinks that my foggy vision, visual disturbances and visual snow are not being caused by the glaucoma.  I can no longer bear the light either.

I still wonder if it is something to do with the original infection in the gum as the face swells from time to time and I have had root canal treatment and two large fillings in the wisdom tooth behind the two root canal treated teeth, and when I had the second filling on the wisdom tooth a couple of months ago I ended up with dreadful toothache, a swollen face and nearly collapsed with a vaso vagal attack with the A&E doctor was convinced was due to infection.  I had a course of antibiotics which took the swelling down and stopped the toothache, but I still have pain under the tongue and in the throat.

Any ideas?  And if

[momwith2kids]

I have been having similar symptoms for about a month now.  Feeling that my ears need to be popped, pain behind my throat (which, I guess, would be my tonsils), itching and burning feeling on back of tongue, had a sore jaw, pain under chin/jaw, soreness of gums and teeth, pressure at bridge of nose at times, headaches and pain behind eyes.  I went to the Dr and he prescribed me an antibiotic, diagnosing me with a sinus infection.  Finished the antibiotic - still have symptoms.  Like you, I started worrying about "The C Word", especially because my father had Base of Tongue Squamous cell cancer.  Yesterday I went in for a physical and I'm hoping that if anything severe is wrong, it will show up in the blood work.  At this point, I am so nervous/anxious that I don't even know for sure if my symptoms are "real".  I also have made an appointment with a Spine Rehabilitation doctor to see if maybe this is a nerve compression issue.  I have dealt with neck/shoulder issues for a few years now and when I went to a Chiropractor last year, he said I had bone spurs and could eventually end up with nerve entrapment issues.  I'm amazed how many other people have been experiencing similar issues, but also scared I may never get an answer!!!

[nancyj0]

I, too, had very similar symptoms.  I finally saw an oral surgeon in St. Louis who diagnosed me with Myofascial Pain Syndrome from grinding my teeth to the point where my joints have become arthritic. Apparently, I've been suffering from anxiety because I was told I had Ovarian Cancer over a year ago. There was no cancer but the constant fear of thinking something was wrong made the anxiety worse. Weight bearing physical therapy for my upper body is helping relieve the symptoms. The muscles that run through your under arm and shoulder blade are complexly related to your jaw joints somehow.