Repeat MVD soon after the first one?

General General TN & GPN (Old Site)
1

I had a MVD in August of 2011. It didn't help at all.

Then I had Gamma knife in October of 2011. Again, nothing.

I have read a lot (including the Striking Back book) about the theory that if a MVD didn't help at all that there is a chance that either a small artery or vessel was missed, or that one of the pieces of teflon slipped. In fact, Dr. Janetta has written about this.

I gently brought this up with my surgeon, and he, of course, was completely disgusted with me, and insisted that there was NO way he missed anything.

As time went on, the pain only got worse. He wouldn't even consider a repeat MRI to double-check.

His nurse was the only one that was kind to me, and suggested that "sometimes" the surgeons get frustrated because they are always doing studies, and they want so badly to have "good outcomes."

I am seriously thinking about a second opinion, but it means going out of state.

I am willing to do that, but not if another surgeon will just tell me to have a destructive procedure.

Has anyone had a repeat MVD soon after the first, like a "re-do?"
I know people have them years after the first, but they had success the first time.

Is there anyone in my position?

Thanks!

2

I would consult for free with Dr. Ken Casey who wrote the book and worked under dr. J.

I emailed him from MO - and started my path towards him that way. MVD was Oct 2011 - did great - had a 2 month set back and now doing great again. I use lidocaine patches for my face - topical - and recommend to anyone in pain. You are right on about getting NO more nerve damaging procedures.

I think maybe dr.kencasey.net or something like that on google - Michigan

Hes a miracle worker - and I would never see anyone else while he is still of age to practice!

You can go to Groups Tab above and read or join the MVD group = many have had 2nd MVDs-- But most were not lucky to have Dr. C !! Even then, a person in my local support group had 2 MVDs by him - and it did not work -- but I'd rather be failed by the best and know in my heart I did what I could

Good Luck!