New to this forum.

I was poking around for folks with multiple MVD histories. I had my first MVD in Dec '07. Results were pretty good, now after 4 years, I'm about maxed out on my drug of choice - Tegretol. Vial at home, vial in the glovebox, and one in the desk drawer.

I'm not to excited about another entry, especially on such short warranty period.

Please tell me your stories on multiple MVD's. I feel like I should install a entry hatch on the side of my skull.

Gamma Knife 1995, various drugs, with Tegretol most effective on my Type 1 on V-2 and 3. I just don't like loosing balance and seeing double.

Regards,
Jim

Hi Jim want to welcome you to neurotalks T.N forum. I know of a couple people here that have had 2 MVDs . I will see if I can hunt them down it may take a little bit of time so dont be worried if its a few days before they respond.
I never had MVD but know lots of others who have. I wouldnt be excited about 1 entry never mind a 2ed time .
did your doc suggest you have another because you maxed out on the meds that helped ?
well I am going now to find a couple folks to reply that have had more then 1 mvd.
sending you positive thoughts and low pain Jim,
PEACE
BMW

Hi Jim,
I don't know if I can help - dear Tina sent me an email asking me to check in and talk...I've been off of the forums for a while. I've had only one MVD, but I have had 2+ brain surgeries - 2 major, and a few repairative. The second one was to install a VP shunt to regulate high intercranial pressure.
I guess the first thing to ask is, how did your first MVD go? Was it pretty smooth? Any bumps in the road or problems post-operatively? What did your surgeon have to say?
I just happen to be the poster-child for post operative complications - I've had most all of them, plus one so strange that my NS came out of my surgery to my husband saying "Well, I've never seen THAT before", and he's been a top NS in this area for years and years.
So I guess that I'm a cautionary tale for those contemplating brain surgery - all of those things that you sign off on in the disclaimer can come true, and often even when your NS is very very experienced. Most of mine were temporary, thank god, but I have met others who suffer greatly for making that decision. The second brain surgery I ended up going code blue and spent almost a week in intensive care with a breathing tube (for half of it). Again, My NS is very experienced - these things just happen.
I would advise exploring other routes - a different med regimen, nerve blocks, lidocaine infusions, peripheral stimulators, almost anything else (try to avoid the treatments that injure the nerve, though). I take a combo of nortriptyline, neurontin, trileptal (cousin of tegretol), lamictal, and opiates. They all benefit me in certain ways, but I do have to admit that I have real memory problems. I don't work, so I often don't need to worry about that, though. I was granted full disability by both the govt, and my private insurer through work. Take the highest disability benefits that you can, those of you who are still working - change it now.
All of this is my experience and my perspective only - I do hope others will chime in on this.
Best of luck, hope this helps,
Lily

Hi Jim
Tina found me too! I have only had one MVD, back in '05. I have had a few scary moments with breakthrough pain, but so far they seem to subside on their own. I have heard of a number of people with multiple MVDs on Facebook.

There is a large TN community on there, that's actually where Tina found me https://www.facebook.com/groups/2394464747/
There are close to 2,000 users in this support group alone and there are many different support groups on there. Perhaps if you posted there as well, you might find more people who have been in your situation .

Through one of my breakthrough episodes I went back to my neurosurgeon to see if I was a candidate for a second MVD. After checking my file and finding that I did indeed have a successful MVD and since he did actually find 3 compressions, he thought he would have a good chance at "curing" me again. He did say that the success rate drops from the high 90 percentile to the 80s percentile.

Hope you find the information you're looking for. If you would like me to introduce you to some of the TN community on FB, just hop on. You can find my profile under Ella Burakowski Cohen.

Hello Mylast nerve;

After reading your horror story, I guess I had the opposite experience with my MVD. I was out of the hospital in 48 hours, and, back to work full time in one week. My surgeon (first class, world recognized) was happy with the surgery. He stated that he found clear case of a vein impacting the nerve. I had no post-op complications. I had immediate relief, maintaining drug free except at some times (once a year - dosing up moderatly). Unfortunately, after nearly four years, I cannot keep it tame with meds. I have decided to try Glycerine or Radio Frequency Rhizotomy or both. I have contacted the surgeon for scheduling of a consult....

Thank goodness we all don't become poster children for post-op complications. I wish you well.

Regards,
Jim1956