Facial Pain, Numbness with Chronic Neck Pain and TMJ

[CrVala]

   Hello,
I am a 24 year old female with TMJ and chronic neck pain.  I have been getting treated for the TMJ for a year and half, though I've had symptoms for it since I was 10.  I've been seeing a chiropractor for 4 months when my neck pain got worse instead of better like my TMJ doctor had told me.

For the past 5 months now, I have been having pain on the right side of my head, eye, eyebrow area, eye socket, cheek, and right side of the nose.  This is also the same side my neck pain and jaw clicking occurs.  The pain is deep, achy, and at times throbbing, except for the on the cheeks, which can sometimes feel like a stabbing at the top of my cheek bone or the bottom of my eye socket, can't tell which it would be.   I also feel twitching sensations at the tip of my nose and sometimes in my eyelid.    Occasionally my cheek will just go numb, as if it's gone asleep.  It will stay like that for about 5 minutes, and I can still move my face when it happens.  

The most prominent pain is my neck and eye.  The other pain comes and goes (though still occurring everyday or every other day), but the neck and eye pain is constant and both in very specific spots.  The eye pain is in the upper corner, right where the eye socket meets the very top of the nose, where that curve is.  And I often feel it in my eye in the inner corner, when I move my eye that direction.   It hurts more when I touch and put pressure on that spot, as I've compared to what happens when I put the same pressure on the other eye's corner and it doesn't hurt there at all.

I should also mention that my eyelid is drooping.  I'm not sure if its considered the eyelid or part of the eyebrow area, but it is the skin directly below the eyebrow and directly above the skin that actually covers the eyeball.  It started drooping  very gradually, starting almost a year ago on the outer corner of the eye and now the drooping has spread full across the entire eye area from the outer to inner corner,  making that eyeball appear like its sinking down my face.

This is all extremely hard for me to deal with as I don't have health insurance and most of the doctor's I've seen have not been able to do full testing on me because I can't pay for it.
I've seen an opthamologist who just assumed it was allergies, did no tests, and just gave me eye drops.  When I came for a follow up 3 weeks later with my symptoms of course not improved, she said the same thing and gave me more eye drops.
I've seen a neurologist who told me that the appearance of my eye must have always been this way and I never noticed, and to do lighter less aggressive form of stretching so the neck isn't always in pain.  She also recommended I come back after I get insurance so I can get an MRI.
I saw an ENT who did a CT scan but found nothing wrong with my sinuses.  

So after having spent $800 on these doctor visits alone, I just don't know where to go next.  I was trying to save money by skipping a primary doctor (that I don't have anyway) and go straight to a specialty.  But now I don't know what specialty to go to.  I also would like to know how lower income people and students are able to get an MRI without paying full price.  

I truly appreciate any responses. thanks alot.

[Micki552]

I as well as you all have been experiencing these symptoms... it started about 8 months ago when I was told I had TMJ. After doing an exercise for my TMJ all the head problems seem to come on.. At first I was dizzy all the time my head was full of pressure and headaches after going to the doctors the thought it was allergies but not so my head became worse having sharp dull pains, warmth sensations etc, I had all the tests done CT, MRI, bloodwork, nerve tests and everything came back fine except I was told that I had some small cysts in my sinus cavity so they gave me a nose spray and that was that.. I was told that I may be experiencing tension headaches because I also had tenderness with my head it hurt to even wash it...  needless to say now I am having like tickle/twitching feeling in my nose, cheek, chin, eyes, it feels weird. I just want to feel better and feel normal again.. could this all be from TMJ and tension?? I don't know anyone have idea's please let me know!

[emariab]

I have had many of the same symptoms on the RHS.  Mine started in my right eye. I went to a opthamologist.  My eye pressure was 60.  VERY HIGH!  Treated with prescription drops (including steroidal)   My original diagnosis was SECONDARY glaucoma because the pressure and inflammation was the symtom not the problem   She ordered several blood tests and chest xray to rule out various autoimmune diseases.      Recently saw a uveitis specialist (referred by opthalmologist).  The specialist ordered more autoimmune tests and HIGH RESOLUTION CT scan of chest..  Original xray showed small granuloma on chest.   We are currently ruling out more autoimmune.  The focus seems to be ruling out sarcoidosis.    Some of you sound like your other symptoms are the same as mine.   I have also started having really bad TMJ right side.  Dentist doesn't see any abscess, etc.   I just read that sarcoidsosis can affect the TMJ joint.     All my problems are on my right side - from the armpit to my head (sinus, eye, cheek, headache, etc etc)  After my next visit to the uveitis specialist, (reviewing the tests) she will be referring me to a rheumatologist. Hopefully my problem has helped someone here.    Make sure your rheumotogist or GP has all the test results from every doctor, dentist, etc that you have seen.   Use doctors that listen!  Good luck to all of us!

[Holly23102]

Just wondering if there is anymore people that can shed any light on this??
I had my MRI on the 14th. Still not got my results back. I guess no news can only be good news right?!
I had been almost pain free for a few weeks, despite a few headaches on my right side and except my right eye which almost constantly hurts. But tonight out of the blue the pain came back again, the right side of my face, my right arm and leg. The pain in my knee and ankle joints was excrutiating at one point. Its almost gone off now but my face is stinging around my right temple and eye socket.
When i feel like this i am almost too afraid to sleep. Just in case i don't wake up....or i wake up paralysed.

[penpen731]

Hi Ladies.

This is Penny again I just want to say how chilling it was when I found this web site and found out how many other people have these same syptoms.  Why won't anyone help us.  As I said I have had this for 6 years and if I ever find 1 thing that helps relieve the pain I will go through every entry and let everyone know because I know how it wrecks your whole life.  

My pain started in my right cheek and just moved on from there and it has never stopped.
I have had doctors saying I am putting it on and I need councelling, all sorts of stuff.  Let me tell you they are only saying these things because they can't work out what is wrong with us.  

This may not mean much but I believe all of you and I feel sad for you all as well because you are just left to suffer, you are all young ladies having your lives wasted with pain.  Lets hope that one day someone will find out what is wrong and we can all be pain free.

God bless you ladies.

I have had so many brain and neck scans over the last six years that I have lost count and just in my last MRI as per my last entry a 7mm lump has been found on my C7.  I go back soon to have have a targeted CT scan to see what is going on it could be something sitting on a nerve.


I could go on for ever and ever but I won't

Goodluck to you all, Holly goodluck with your MRI.

You know how I get through some times I just think there is always someone worse off.

[Holly23102]

I have these same symptoms on my right side. Face pain/numbness eye pain ear ache neck and headache, arm pain, leg pain and some occaisional patches of numbness on my leg and arm
I have seen a neuro who ran his basic tests - all ok - he thinks nothing is wrong although i have an MRI in 2 weeks to make sure.
I have seen 4 different GPs who dont have a clue and none of them seem to care either.
It is so frustrating i just want i diagnosis.
The same thing happened back in october, lasted a few weeks (no diagnosis) disappeared and then came back at new year and has not stopped since then

[penpen731]

Hi my name is Penny and I have been in pain for 6 years, I am 38yrs old.  I have had MRI's of the brain and neck, CT Scans, physio, chiropractic work, chinese massage, accupuncture, councelling (?) you name it I have had it or done it. Anti depressants, pain killers.

Syptoms

*All pain is in the right hand side only
Face
Head
Neck
Shoulder
Arm
Hand

When the pain get really bad my hair falls out by the hand full.
I loose my balance
The pain is so intence I would rather be dead.
I some times take upto 10 - 12 panadeine forte a day with very minimal relief it just knocks me out so I don't have to feel the pain the downside is it's still there when I wake up.

Diagnosis.
* The doctors say it's in my head, stress related or just soft tissue damage.

I have been checked for MS
Fluid on the brain
Tumors etc.

All excercise and hands on treatment only made it worse (MUCH WORSE)

I went for another MRI of the Brain and Neck on the 29.11.07 and the report read.

Sagittal and axial imaging, including diffusion weightedn and contrast-enhanced imaging, has been performed.

Note is again made of mild cerebellar tonsillar ectopia (Chiari 1), with no cervico-medullary compression or syrinx.
Curvilinear T2 hyperintensity at teh calloso-septal interface lies within normal limits.  Two small (4-5 mm diameter) non-specific T2 hyperintense foci are positioned int the posterior left temporal and left temporo-parietal subcortical white matter.  These are not associaated with any diffusion restriction or pathologic enhancement.
A subtle 4 x 2 mm cleft-like focus of CSF intensity is evident posteriorly in the right of the sella.  This is doubtful signifiance, possibly representing a tiny Rathke cleft cyst.
Within the Cervical Spine, an enhancing 7mm diameter T1 hypointense/T2 hyperintense nodule, centred superiorly in the left of the C7 vertebral body, most likely represents a haemangioma.  It may be worthwhile correlating this with targeted CT to exclude an aggressive vertebral lesion.
Incidental findings include mild paranasal sinus disease, mild nasopharyngeal soft tissue thickening and mild prominence fo the right thyroid lobe (with no discrete mass or nodularity).
The remainder of the study is unremarkable.

The neurologist booked me in for a CT scan and told me to come back in a couple of months.

Yeah no worries another couple of months waiting that's fine I have put up with it for 6 years another few months won't hurt (that's my sarcasm).