Hi all,
I am curious to know how many of you had surgery relatively soon after your diagnosis. Although I suspect I have had TN for quite some time, I was not definitively diagnosed until June of this year. I cannot take Tegretol, unfortunately I am allergic. I started gabapentin in late June, and have had to increse my doseage just about every 2 weeks. I am up to 2400 mg per day with varying results, no true painfree times.Although I see that many of you take several different combinations of medicines, I do not think that is the route I want to take, and am now looking for a experienced MVD surgeon to explore the possibility of surgery.
I would appreciate your input!
Christine
Hi Christine,
I was diagnosed in April 2011 and had surgery this past July.
My story: http://www.livingwithtn.org/forum/topics/a-positive-mvd-surgery-experience-and-outcome
Write with any questions.
Good Luck
I would be happy to answer specific questions as well. Many of us who have had surgery have posted our experience on the MVD group on this site. You will find lots of information there. I had surgery approximately 4 years after my symptoms first started. I had several periods of months long remission during that time. So, it wasn't 4 years of solid pain, but buy June when I had surgery the remissions were a thing of the past and the medicines I tried were not working. Best of luck to you! If you are anywhere near NC, or willing to travel, I would highly recommend the surgeon I used.
Thanks, Rick! I had read your posts regarding your surgery, and found them most encouraging. After reading of some pretty bad experiences with MVD on this forum, it was nice to read your positive one. Although I live in Georgia, I am hoping to get in to see Dr. Jeffrey Brown in NY for a consult. Hopefully, he can referred me to someone here if I decide to proceed.
Thanks again for sharing your experience!
According to the book "Striking Back" by Dr. Ken Casey - my top surgeon in MI
I think its in there - the sooner the better -- once the nerve has been beat to death by every heartbeat you have - somewhat less chance of high success
I think my story is on the group tab of MVD also.
10 months - and doing good with no meds
Diagnosis 10-2010 / MVD 10-2011
I met with Dr. Brown last week and have nothing but good to say about him. I am scheduled for an mvd on October 3rd. That was the soonest I could get someone to take me to NY, I live in Delaware and cant drive on these drugs. He was worth the trip, if for nothing else, he spent 1 1/2 hours talking to me and validating everything that was going on with me. He also seems to have found the reason for my migraines and will repair that vein at the same time since it is in the same area. He is worth the consult, just because of his manner and the fact that he doesnt discount anything with this,, whether its drug reactions or wierd pain etc.
Wendy
Christine said:
Thanks, Rick! I had read your posts regarding your surgery, and found them most encouraging. After reading of some pretty bad experiences with MVD on this forum, it was nice to read your positive one. Although I live in Georgia, I am hoping to get in to see Dr. Jeffrey Brown in NY for a consult. Hopefully, he can referred me to someone here if I decide to proceed.
Thanks again for sharing your experience!
I had surgery on June 1st then again on June 14th of this year... I would be happy to answer any questions. My face is still numb and I am just starting to wean of my meds. Here is my story :
http://www.livingwithtn.org/profile/LeahL
Best of luck to you
Hi Christine,
I was diagnosed one year ago this month. I have tried about 4 different anti-seizure meds. I don't want any pain pills as they can be very addicting. I work full time and am very independent. I decided since the MRI showed the compression I might as well get this situation fixed! I was so lucky to connect online with RickRI right before he went in for surgery and then we ended up having appointments on the same day with our neurosurgeon Dr. E. Seeing him 3 weeks post surgery he looked great! So long story short I will be having the MVD surgery this Tuesday Sept. 4. Just a little over a year from diagnosis. I'm really looking forward to getting of the meds and being pain free!