I am a 38 year-old man who has suffered from chronic facial pain since childhood, and am currently diagnosed with Atypical Trigeminal Neuralgia.
Current care: I have been under the care of a Vanderbilt neurosurgeon for the last six years, Dr. Peter Konrad. He implanted a motor cortex stimulator in 2001, with no effect.
I have discussed all common treatments for Trigeminal Neuralgia with him as well as with Alana Greca, the nurse who coordinates the TNA support site, and I attended the regional TNA conference in Nashville last May.
Description of current pain: The nerves of 1st and 2nd branches of my trigeminal nerves are over-sensitized, the right side to the point where I am effectively homebound. I spend about half my time in moderate to severe pain, in spite of the fact that my sinus tissue is normally in excellent condition.
My pain level changes almost hourly, and can spike due to either sinus swelling or surface irritation, even extremely minor swelling or irritation.
Decongestants and salves can be effective at reducing the pain if taken or applied soon enough, but my situation has deteriorated to the point where sleeping in the wrong position or going out to get groceries on a dusty day can leave me in severe pain for days, until the resulting irritation or swelling has completely healed.
History: In 1990 I had an obliteration of my frontal sinus cavities, which had been infected for years, and which had seeded the frequent sinus infections I had suffered from for most of my life. Unfortunately the operation left me with neuromas and possible myelin sheath damage at the incision sights. I had over a dozen other sinus operations prior to this, which, together with the infections, also traumatized the trigeminal nerves. I have suffered from constant low-level pain since a major operation in 1984, for example.
In 1999 I had a pair of neuromas removed from the obliteration operation, and later had the trigeminal nerves clipped where they emerge from the cheekbone. The clipping provided a few months of significant relief until the nerves grew back, leaving the area of the 2nd branch far more over-sensitized than it had been previously.
In addition, the over-sensitized area continues to expand, and recently I have started to experience pain in areas and from activities that never caused pain as recently as a year ago.
Medication: I have been forced to turn to narcotics to dull the pain, but the only ones which I are effective and tolerable, Fioricet, Lorcet and Mepergan, have lost most of their effectiveness. My G.I. tract stays inflamed due to the narcotics to the point where I can no longer increase the dosage.
The combination of these factors has left me in desperate circumstances, which is why I am searching for any physician or center which knows of procedures or treatments outside of those commonly used for Trigeminal Neuralgia which might be of help.
Any help you can provide or doctors or centers you can recommend would be greatly appreciated, as I am on the verge of finally losing my life-long fight.