Just trying to find out how many of us know this started because of something gone wrong with the sinus surgery. It could be an inadvertent error on the surgeon's part that somehow damaged the trigeminal nerve, or an untreated severe infection and/or inflammation following the surgery.
I had symptoms for weeks of fever and infection, and all the surgeon did was clean the debris and say everything was normal. But it wasn't, and I have the pre and post op CT scans to prove it.
I have bilateral trigeminal nerve pain 24/7 (can only sleep with 2 Xanax at night). Otherwise, it just never goes away. It isn't burning, but it moves all around my face from my forehead to behind my eyes to my cheeks and nose, and now into my upper teeth (it varies from dull to sharp to pulsing to aching, but never burning and no classic TN triggers or symptoms). The pain is different at different times - there is no pattern to it. Topamax and Gabapentin did nothing for it, and Percocet stopped working months ago. I don't take anything except Xanax to sleep and Effexfor for the the pain-caused depression (plus a prescription vitamin and iron regimen from my PCP).
Just wonder if there is anyone else out there like me and what steps you have taken.
I've been to the ENT (2 sinus surgies with 9 after care cleaning visits between Feb and Apr 2011), a neurologist for 4 months (May through August), 2 chiropractors, 1 acupuncturist (who at least identified it as my trigeminal nerve), 1 infectious disease specialist, multiple visits to my PCP (who put me on a vitamin regimen that is really working - my hair grows about 1 inch every 2 to 3 weeks. Wow! And my nails grow twice as fast. Anyway, I've had 4 sets of blood work, stool test, urinalysis, brain MRI, 3 CT scans, lumbar puncture, sinus x-ray, and on 11/8 I saw a neurosurgeon who referred me to the UW Pain Clinic for December 12.
My records are currently being reviewed by Dr. Burchiel at OHSU (he wrote the TN diagnostic test online, and my tentative diagnosis from that was TNP - or trigeminal neuropathic pain) and I hope to know by next week if he is accepting me as a patient (I figured if he couldn't figure this out, no one can!). I also have an appointment with Dr. Sheena Aurora at Swedish Pain Clinic (the appointment was made in August and earliest available appointment is January 16, 2012). So I figure between either of the two pain clinics and/or OHSU, I will get a firm diagnosis and then can begin some sort of treatment (and then apply for social security disability).
Best wishes for a Happy Thanksgiving tomorrow. I know how hard it is to be thankful, and believe me, I have to really work at it at times, but overall in spite of this, I am blessed, I am loved, I am grateful for friends, and especially the friends I have met through LwTN (thanks Jo and Robin!!). I am also grateful for this website. And most of all, I am grateful for my husband and my family (thanks Mom and Dad and Sue!!!) for hanging in there with me - and greatful that God gives me the strength to carry on in the face of agnonizing pain.
So Happy Thanksgiving and may God give you each an extra measure of love and peace tomorrow.