I think it's fair to say that only a fellow TN sufferer can know the unique combination of incredible pain and emotional uncertainty that are the hallmarks of TN. Starting with figuring out what's wrong with you the first time you have a TN attack that you think may be a root canal problem to finally coming up with the progression of professionals and treatment plans that are needed to manage TN, I don't know of a more frustrating, yet non-lethal chronic pain disease than TN. When I try to explain it to non-sufferers, I tell them it is like "having an excruciating kidney stone attack in my mouth, multiple times a day that just takes you down, sometimes literally it just hurts so much" It also reminds me of having a needle shot of novacaine directly to your nerve, instead of intramuscularly.

TN, in it's more advanced forms. is disease where the level of medication gets so high that you are really incapacitated from doing anything else useful, which also is unusual. However, one of the most difficult challenges for me in Oct. of 2002 when I first became symptomatic was 1) getting the right "differential diagnosis" 2) finding accurate information I needed to myself.

Fortunately a local neurologist here had me do some drug trials with Neurontin that determined I probably had TN, which was later verified by Dr. Henry Gremillion at the truly outstanding McMahon Facial Pain Center at the Univ. of Florida/Shands Hospital. During that time, I spent alot of time "googling" my symptoms and problem on the web, which is where I found the TNA. I immediately order the Striking Back! book which immediately became my bible and "user's manual" from then on in both understanding and seeking help in the right places for my own situation.

The combination of advice and experience that Alana, the TNA nurse practitioner was able to share with me combined with the MVD patient referrral list I was able to interview (all 21 of them) before deciding to have a 7 hr. macro vascular decompression surgery in April of 2005 at Mass General were by far the most valuable resources in my fight against TN.

I had 25 separate appointments with probably half as many different dentists, endodontists, acupuncturists (didn't work at all), pain mgmnt doctors, facial pain specialists, and neurologist before I found my own effective treatment solution. I found, like I'm sure many reading this have that the average dentist's and local neurologist knowledge on TN is a mile wide and 2 inches deep and that unfortunately the best TN knowledge has been "silo-ed" with what seemed to be a handful of top doctors, none of which were geographically convenient for me, however as any sufferer knows, nothing was going to stand between me and accessing effective treatment.

The Trigeminal Neuralgia Association was, and is, by far the single most important information and human resource that helped me accomplish my treatment goals. My own personal goal as a TNA trustee is to find even more productive ways for TNA to "get the word out" to sufferers, who may not even know they have TN, and help all of those who do to quickly get access to the best available evaluation and treatment resources. Fortunately, the web, coupled with our "help-line" and fabulous support groups gives us enormous leverage in this fight.

As for me, I was pain-free for 15 months after my March 2005 MVD and then had a significant recurrence which I treated with a successful RF Rhizotomy, again at Mass General , last December of 2006 and am now completely pain-free, however I think it is incumbent on those of us that are in a position to help and "give back", whether that be financial, donating relevant organizational and leadership skills and through support groups and patient reference list to help each other and those who are just beginning or are in the middle of their illness, as no one but a fellow TN sufferer knows what we go through which makes our support of each other, and of TNA, so incredibly important.