I have had A-typical face pain/TN2 for 14 yrs now. In the beginning it was just a constant toothache (those were the good old days), then it gradually worked it's way up and down my face, and then eventually covered the entire right side of my head. TN2 is commonly known for continuously getting worse with time non stop. In the beginning I could survive without medication (not that I chose to), but for the past 7 yrs the pain has been at a point that there's absolutely no possible way that I could survive without medication. I would be forced to do what WE are so well known for. Even with medication, life is consumed by this condition. So far no brain surgeon will touch me because no one has ever been able to see anything through any MRI's. That's common for TN2. So I would so love to hear if anyone has ever been able to make progress in their life with TN2 with something besides medication. Thank You so much for your input!!!!
Mj I am so sorry you are having such a tough time! I still struggle also but since nov.27th -14 I am slowing getting better.I was ready to end my life after 25 years of this monster I was done.I ended up going public after Sfbill ( a member here) said I may half to. I listened to him and ended up front page news in our city. What a blessing! A brilliant,kind,caring man found my article, emailed the also a good caring man, the editor of the enquirer that did my story offered to send me a cream he made for a friend of his mom called GALLIXA, amazing stuff who would think just putting on a cream could help so much of the constant burning, boring, aching, thobbing, and more.We know what works for one doesn’t always help another.I know it helps way more then tn!! Some on here do use it and says it does help I know one that said it didn’t. I say it can’t hurt to try. Today I should be in a corner in pain sobbing, because of the weather,I’m not! It’s not a good day but I can handle it.I will go read the rest of your journey with tn, but would love to chat. Just in this post you sounde so much like myself as far as the type of pain you have.I would be so happy to talk to you if you would like public or private my life is all out there!!! (LOL) Your in my thoughts, dawn
MJ, are you able to email Dr. Casey about your condition? I seem to remember in one of his videos him speaking of so many neurologists not seeing the compression but them not really knowing what to look for (sorry, I know I am not saying this correctly). Anyways, the gist was that it is so subtle sometimes that it is missed. I also have TN2 and it has been progressive. MVD can help TN2 patients. We just do not have as good a chance of success. Obviously, the skill of the surgeon comes into play. imo, if I were to have someone cut into my skull I would want it to be the best or one of the best surgeons in the country. Best of luck!
I have had two glycerol injections. The first kept the pain away for over 30 years with slight numbness in my face. The second injection was 2003. The pain has returned and is now in my left cheek and is bearable. Recently the pain has moved up to the temple. It so far is bearable. I saw my neurologist yesterday, Dr. Steven Haines, at the University of Minnesota - Now called M Health. He no longer does the glycerol injections and highly recommends the MVD procedure. He has perfected this, I believe and says there are rarely complications. He also has stopped spinal fluid leakage by taking a small amount of fat from patient's stomach and inserting it into the incision when the procedure is finished. Medications have not worked for me. When the pain becomes worse I will have the MVD surgery. Dr. Haines is a competent surgeon and I trust his judgement.
another comment - nothing can be determined with an MRI - this is only given to rule out brain tumors, etc. The trigeminal nerve does not appear.