Diagnosis and Surgeon Needed for Patient with Atypical Atypical TN

General General TN & GPN (Old Site)
1

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,

Derek

Burning Man D

2

Derek, I am sorry for your pain. I have had many of the exact same issues the past four years. I was diagnosed with ATN but my doctor says that atypical is for quitters. He said you can dig deeper. I have TN in all branches on my left side, SUNCT, look it up, acute migraine disorder with migraines of four or more hours more than 15 days a month. I have to take antivirals before any mouth procedures are done to stop hsv1 explosions all over the inside of my mouth. I have had five procedures and have five more to try. Gamma knife and brain surgery is not a good choice for me. I am now opiodes dependant, developed severe anemia affecting all my treatments. Acute depressive Disorder, CRPS and more. My brain and CNS no longer communicate properly which is bad. My brain needs to be reset. I was approved after seeing doctors, pain therapists a cadiologist and stress test. I was to be the first patient at USC to receive ketamine infusion therapy for 30 days, 8 hours a day with no ability to care for myself. I am a single dad with two teenage sons who had to stop working four years ago. It’s been horrible. I lost one tooth after the keystone cops did three crown and two root canals on the same tooth for 20k. I have lost everything and am trying to hold on for my kids and the holidays. I have great doctors and resources. Where are you located. I am also happy to speak to you offline. Good luck

3

Did the Ketamine Infusions help any? My PM doctor suggested it for me.

richard_scott said:

Derek, I am sorry for your pain. I have had many of the exact same issues the past four years. I was diagnosed with ATN but my doctor says that atypical is for quitters. He said you can dig deeper. I have TN in all branches on my left side, SUNCT, look it up, acute migraine disorder with migraines of four or more hours more than 15 days a month. I have to take antivirals before any mouth procedures are done to stop hsv1 explosions all over the inside of my mouth. I have had five procedures and have five more to try. Gamma knife and brain surgery is not a good choice for me. I am now opiodes dependant, developed severe anemia affecting all my treatments. Acute depressive Disorder, CRPS and more. My brain and CNS no longer communicate properly which is bad. My brain needs to be reset. I was approved after seeing doctors, pain therapists a cadiologist and stress test. I was to be the first patient at USC to receive ketamine infusion therapy for 30 days, 8 hours a day with no ability to care for myself. I am a single dad with two teenage sons who had to stop working four years ago. It's been horrible. I lost one tooth after the keystone cops did three crown and two root canals on the same tooth for 20k. I have lost everything and am trying to hold on for my kids and the holidays. I have great doctors and resources. Where are you located. I am also happy to speak to you offline. Good luck
4

This is where I get confused …ModSupport can you please cast some light…I respect your knowledge greatly.
I thought I had ATN or type 2 neuralgia.However I " only" get pain in the teeth mainly top right,sometimes bottom.It is the usual clawing ,cramping,aching pain…but I never get the jolts of pain that last for several minutes.The pain I have lasts all day ,I can work on through it albeit very difficult.Stress and overwork are the triggers.Medications works but I can’t use them because I am so sensitive to their side effects.This all started many years ago after a dental trauma.Thank you.

5

Eileen, sometimes those long days of pain are hundreds of small attacks lasting just a minute or two. As I tell others, keeping a detailed food and activity log for a weeks can help you plan treatment that is specific for you. Good luck and God bless.

6

Hello Richard,thanks for your reply…so does that mean I would have TN but not TN with the big jolts. I have read with ATN that the pain is constant with no breaks.I do however get a day or two of no pain each week especially if I am able to chill out( uh!)I’m still confused re my pain.The last few days it has been constant in my right jaw joint with some tooth like pain in upper teeth on both sides.Have you heard of Ernest syndrome? Thanks a million!

7

Also Richard how are you doing…very tough for you with teenage sons…may you be cured soon!