Hello, everyone, I am Burning Man D (for Derek), and altho I joined your community a few months ago I only just now am able to begin using your collected knowledge and wisdom to help me with the battle I have been waging against the neuropathy in my face doctors have called Atypical Trigeminal Neuralgia.
MY MAIN PROBLEM IS I DESPERATELY NEED A DOCTOR/SURGEON WHO WILL OPERATE ON ME BECAUSE DRUG THERAPIES HAVE FAILED AND OPIATES NO LONGER HELP ME. PLEASE SEE BELOW FOR THE FULL SAD STORY.
I have been searching first for a diagnosis, then any effective treatment, for the last 24 years, without success. My case is difficult because my symptoms were so different from "normal" TN that every neurologist and neurosurgeon I talked to told me because they didn't understand my condition, or why it does not respond to any of the traditional medications for TN, they (and anyone else it was said or implied) were unwilling to perform surgery on me. My problematic symptoms are this:
1) Pain very like burning, tingling numbness and crushing pain is BILATERAL
2) The pain is CONSTANT, not intermittent.
3). Altho I have had 3-4 "jolts" of pain like "typical" TN in the last 10 years, I do NOT have these symptoms overlaid intense, intermittent stabbing pain of terrible intensity.
4) Because of all these, I do not fit into your websites given description of Atypical TN ...
5) ... but I also do not fit into any other category's defining symptoms, yet all doctors are agreed i have a kind of TN. And finally,
6). Every drug used to treat TN does not work on my condition, or it causes such extreme side-effects I cannot live with it. I have had (check my new member info if you like) MANY different kind of injections and treatments of the trigeminal nerve (the latest unsuccessful one being Radio Frequent Bombardment), and NOTHING has helped at all, except the CONSTANT application of ice-cold gel packs on my face ... and opiates, which no longer work well enough for me to continue using them. I went on opiates 7 years ago when I finally went to my pain doctor and told him "I never wanted to be on these drugs, but you have to give me something for the pain or I am going to kill myself because I've been in constant pain for 15 years and I can't take it anymore.
WHAT I WANT TO KNOW IS THIS: Am I missing something about what this condition is? Does this actually fit a kind of TN I am unaware of? More importantly, I ABSOLUTELY DESPERATELY NEED a doctor to whom I can have a serious discussion about surgical options. If you know ANYTHING about surgeries that could help me, please direct me to the info if it is on your site or can be seen through the web. I am kind of overwhelmed by all the info on this wonderful site, so ANY help would be GREATLY appreciated. Thank you and God bless,
Burning Man D