NeuroTalk Support Groups - facial nerves/ connective tissue sinus damaged

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facial nerves/ connective tissue sinus damaged

I don't know if anyone has had this type of problem, but I have had some nervous inflammation and connective tissue destruction that went up into my face. I'm not sure that doctors have seen anything like it, and my illness didn't even have a name outside of the Naturopath's diagnosis of Celiac Disease. It feels like my sinuses are leaking through my tissue. I can't expect anyone knows what I mean, but maybe someone else out there knows the devastation of connective tissue destruction. It takes so long to get into these specialists, and my illness is systemic, so it means lying here day after day just waiting. Know what I mean?

I just wanted to give you a hug....
((((HUGS))))
bizi:hug:

Oh, my, what a nerve-wracking situation to be in. I'm going to add my :hug: :hug: :hug: to bizi's. I can only try to imagine what it must be like for you, though I can certainly sympathize with the wait for a specialist. Been there, done that! :D
hugs,

Have you looked into trigeminal nerve issues? Perhaps you need something to combat that? I had my ENT numb me temporarily once (but it was just a temporary thing) as it effected my eye but you can use medications (neurontin, topamax etc) or even botox to reduce to pain. The meds have side effects so you have to weigh the benes vs drawbacks but I would see a neurologist if the ENT is running out of options.

DID you ever get a diagnosis?

Quote:

Originally Posted by Lily (Post 89813)

I have similar symptoms Thanks

Hi Lily,

I have tn and I have lupus. I am now having tia issues. I know facial pain, and tn from possible blood vessel inflammation but tissue inflammation in the area is a new one and I am VASTLY INTERESTED, as this could be what I suffer from..? Your pain though does not sound like a cranial neuropathy to me for some reason. Leakage makes me think more like sinuses leakage.

do you get headaches that are better when you lie down? just curious

let's talk, Love Julie:hug:

...I have TN, Fibro, Chronic sinusitis, migraines, torticollis, dystonia, autoimmune thyroid disease, tmj, etc etc. :hug: This all began for me in 1983 with my first of many car accidents - none my fault mind you - and then spiraling with my thyroid. I have worked for many doctors, surgeons, and specialists. I have learner a lot along the way.

Although I can't help myself necessarily, I do help others whenever I can. I recommend an oral surgeon for those teeth in your sinuses. They can cause so many of your issues. May be too late to stop some current issues but extracting them could prevent more issues. I worked for an OMS and saw a lot of things. The mouth and digestive tract need to be well cared for as they are essential for our good health. Good luck my dear! Keep us posted!

Quote:

Originally Posted by Lily (Post 89813)

Please learn about relapsing Polychondritis (I have it and it sounds like you do too). It is apparently pretty rare but I think you will recognize your symptoms!

Relapsing Polychondritis

Quote:

Originally Posted by kcdepotlady (Post 329147)

Lily, I know what you mean about the sinus leaking and the pain in your face under you eye and around it. The feeling tht your ears are drowning in fluid and difficulty hearing and often swollowing, the top of my chest also feels like someone is sitting on it half the time and I wake up at night alot because this gunk litterally is drowning me.
I have been around in circles with various doctors,dentist and sugeons and i am at a loss. Every day my sinus leaks way in the back I even went to the best doctors at the University of Michigan and was told I had migraines and to go home and ask my family physician for an anti depressant! What the #$@%! ? I have been like this for 2 years now. Antibiotics seem to make the gunk that leaks clear rather than green, but as soon as I stop taking them It gets thicker and green and I end up in the emergency room. I have seen an ent he did surgery right after my 1st consultation, he basically router rootered my septum. Which did not help and after about 10 follow up appointments he gave up and I quite going and went back to the dentist..who refuses to pull teeth. I do have teeth in my sinus and have had a root canal thru all this and then it was filed down and ultimately extracted. But I think I have 1 or 2 more in my sinus...I am not sure that is the problem (teeth) I alos noticed all my problemsstarted when a wacked out dentist yanked out a molar that was very healthy only because it was 1/2 broke off to the gum. I have had nothing but problems ever since..which the first thing that I had after that was a sinus infection which in 40 years I only had a sinus infection 1 time in my whole life and it was when i was about 30 and aftre it came back after 3-4 weeks the dr treated me asked me when was the last time I had been to the dentist, it had been a while and the tooth they filled cured that sinus infection and just so happened to be the one that was yanked 2 years ago...is it possible the traumatic extraction ( it took 3 dentist taking turns to yank it out-with what I would call excessive prying) the U of M specialist also informed me I did not have a hole in my sinus from that. May nerve damage from the extraction? I am ready to have all my teeth on the top yanked and a partial put in..I do not know what else to do?:hug:

I'm not sure if I am doing this correctly but I responded to Lilly that she should check into Relapsing Polychondritis (I have it and well sounds similar to many of my symptoms--you know what they say "if you have a hammer then everything looks like a nail" well RP affects not only nose cartilage, ear cartilage, larynx but also chest wall you might also want to read up on this condition)

So agree with SleepyD it just sounds like relapsing polychondritis - that's what hit me as I was reading through the symptoms.