sinus - bone mass on Trigeminal nerve

Hi I have been suffering sinus headaches for many years and have had at least 10 surgeries to clear congental abnormalities.

Over the past five year I began suffering facial pain severely which they thought was the trigeminal nerve.  My pain managment doc would not accept just a neuralgia diagnosis b/c all the lido and marcaine block he did only aggravated the nerve so he figured infection or a something physically impinging the nerve..

The pain was so bad I had all the teeth on the left side upper root canaled (10-15 grand)and hoped that would take care of it.  It didn't the pain was still there so no one would restore the teeth and I ended up loosing them,  I am only 39.

Other interesting things to note was that I had bone overgrowth blockages severely throughout my Frontal Sinuses - both sides.  After several misguided surgeries which caused saddle nose and possibly a hole into the brain cavity. The ENt said I was luck not to have developed a brain fluid leak. We find now on VTI or CT scan... I have a bone growth in the bottom nose side about the size of a quarter, this appeared suddenly since my surgery in January... I am guessing maybe the process had started buth the surgery agrravated it and caused it to grow more quickly.  Anyway, this mass sits on the end of my trigeminal nerve right by my left nostril.

ENT says if we cut the bone, it will only grow back thicker and larger and best bet is to see if it will re-absorb...once my inflamatory response from my January and May surgeries calms down.

I have also been suspected of autoimmune disease, but so far nothing shows on the Ra or ANa or thyroid test... I've had the whole battery of tests.  My immunologist says if I want immunosuppressants which could be indicated by my grossly overactive inflamatory response..but I have to go to a hospital in NY.

Currently I take a lot of narcotics which frankly don't really work that well...

So my next options are a neurology consult and the immune system route....

Any Suggestins?  This is an extremely painful condition even on narcotics I never get below a 4 on the pain scale.  It keeps me awake at nite and I am extremely sensitive to wheather or barometric changes.  If there is a storm coming, I jut get into bed...

IT is so bad that we are considering moving frm the DC area to Hawaii or San Diego where the barometric pressure is more stable.

[christi3d]

i see this was posted quite some time ago. but i wanted to tell you , i know what your expeirencing to a certain point. i too have been diagnosed with trigeminal nueralgia, only after yrs of agonizing pain and most of my teeth root canaled and pulled eventually. i too have major sinis problems with seem to always effect the nerve pain. i feel alot of tenderness on the left side of face above ear area, and above left eyebrow i have swelling, i feel its my sinis but no one wants to seem to look closer? they blow me off.  
i wanted to also share that i have been diagnosed with a blood disorder called "von wila brandt" and it messes with your immune system amonsgt other things i have found. have they done alot of tests in your blood geneticly? do you bruise and bleed alot?
well i hope all the best for you and hope they find answers for us both. living on methadone is a pain itself and it doesnt help my pain after being on it over 6 yrs now. god bless.