I went to my neuro two days ago. I had been suffering another severe round of attacks these last few weeks and the upped doses of Tegretol and Neurontin were only causing severe side effects and not helping the pain. I will say I have a neuro with whom I feel confident in. He spends as much time with me as I need him to during an appt and actively listens and provides feedback. He said to me yesterday “What do YOU want?” - I am so used to doctors telling me what I need to do that is was refreshing to hear that. Of course my goal is to be pain free and pill free. So, for reasons I won’t go into, I am going to visit with a surgeon on Aug 7th to discuss MVD. In the meantime he has added Topamax to sort of see if that will help until I decide whether or not to go through with the surgery. Honestly, I am terrified of surgery. I would love to hear reassuring comments from people who have had MVD.
Hey I’m having MVD on Aug-18-09 and my pain is quite manageable right now , but look forward to this surgery I’m sick and tired of the fear of another attack. I have dealt with TN for over 20 years and can’t keep taking Tegretol for another 20 to 40 more years. If anyone has had please share your experiences
I posted a new blog - I did schedule surgery - Sept 24.
Ro, thx for the advice.
Rob, good luck with your surgery, please let us know how your recovery goes
Thx Ro - That’s so nice of you. 