Hi Hejhog
Jean sent me an email telling me you were here. I have not checked into this site in ages, I actually forgot it was here. i usually check the Braintalk site for newbies. I guess I'll be checking here more often. Thanks Jean.
First let me tell you that I am in Toronto too. I have lived with TN for 13 years up until I had my MVD in July /05. Of course it was not my first choice, as a matter of fact it was my very last choice. After increasing my meds all the way up to 1200 mg of tegretol and still having breakthrough pain I knew I had to bite the bullet and at least look into an alternative procedure. I am very big on doing my due diligence in any situation. So I researched, went to lectures, did a lot of investigating and interviewed 6 neurosugeons in Toronto's best hospitals. I finally came up with Dr. Michael Tymianski and Toronto Western. He was the most experienced in MVD and he seemed to make me feel like I was making a big thing out of this when it could be over in no time. I walked out of there feeling nervous, but sure that I was going to go through with it. I don't know if you've seen my online diary that I kept while I was recuperating, but it is on here somewhere. I have actually elaborated on it in the Braintalk site, but I will update the one here as well.
It is unfortunate that you have an allergy to tegretol and I think that family of drugs works best for TN and it is a sure way to diagnose it as well. The fact that you took it for a few days and it worked speak volumes. I know it is rough living here in Toronto with out health care system, as it takes so long to get in to see someone and in the meantime you have no choice but to suffer. There is also an excellent doctor in Winnipeg named Anthony kaufmann. Many Canadians opt to go all the way there for treatment. Do you have the book Striking Back? If not, please invest. it will spell out your options for a more tolerable life. You should be able to get this thing under control one way or another. It does sound like you have classic TN and in the "TN world" that is the best scenario. Please feel free to PM me anythime and I will give you my email address so you can stay in touch with me directly. If there is any information I could provide or help in anyway I would be more than happy too.
There is also a growing community of young people suffering with TN on facebook. Interesting how we all manage to find eachother. As a matter of fact there is another girl from Toronto on there who just came back from Winnipeg. She had a second MVD as her first one did not hold for very long. Unfortunately she did not have classic TN and her case is much more complicated to cure.
Just to let you know I am 2 years and 4 months post surgery and still pain and medication free (but whose counting!)