Waiting for MVD

1

Directed here from my original post in the TN forums...

I'm on the waiting list for MVD. I'm 28, it started November 2011, wasn't until May this year that I got to see a specialist who confirmed what my two GP's had guessed at. Sent me for MRI (looking for MS/tumours and whatnot because of my age) then visited the neurosurgeon who (thank God) cleared me of the two things I was fearing most. Said he could see two enlarged vessels but that they did not appear to be directly in contact with the nerve, but because the nerve itself is kinked (looks almost like an L as opposed to the near straight line it should be) he thinks there may be a loop or one underneath it that he's not able to see.

So...He's put me on the list for MVD (sometime within the next 3-6 months) with the basic thought that he won't know till he opens up and gets a proper look, and if it is, he'll do the repair. He was extremely nice and made me feel at ease - In the last 20 odd years he thinks he's done around 300 surgeries of this type with good results - Supposedly more than any other in NZ or Australia. (I'm a Kiwi :) )

My family and partner think I should go ahead, and I'm so grateful to have their support. My partner is actually from NC, and getting into Raleigh or somewhere is a possibility, but a very vague one considering I'm not a US citizen. I was recently in NC to visit with him, had a massive flare up and ended up in the Cape Fear Valley ER....Twice. The bill still stings!

Since November I've tried Tegretol, Norpress, Lamotrigine and most recently Gabapentin. I'm on 2100mg and it's holding it back to the level where I can function normally, but eating is unpleasant as chewing sets it off, and drinking, talking and touching my trigger zone can irritate it. I'm keen (as keen as you could be, I suppose) to go ahead with it as well, and praying it can be repaired and that it will be permanent relief....

So if you're still with me after all that rambling *blush* my questions were just about what to expect post op, recovery wise etc. Reading all your posts have really helped!

I don't expect anyone to know, but on the off chance, has anyone come across Dr Edward Mee in their research etc? He'll be doing my MVD.

And...You know. The fact that I want this fixed and to never return aside...I'm absolutely terrified about going under the knife. Very bad past hospital experience.

In the same hospital the MVD will be done in. Not sure whether to laugh or cry about that.

Thanks for any wisdom you can impart :)

2

Hi Lupa

Its sad to get this so young. I was in the same boat but it took ages to get diagnosed.

I am 6 years post op and have 20% the issues I did before hand. I could not possibly have continued working if I did not have the MVD.

Post op the biggest thing I can say is give your self time. Dont be suprised if you get pain (it dosent always happen but it is Brian surgury) and does give discomfort. If the doc says you will be fine in 3 weeks expect 10 weeks. They are full of it!!!!

Take the pain Meds that are offered and Take it easy rest relax let yourself get better.

The first days after will not be great but they pass quickly.

When you start to feel better it will be a relief.

With such a big kink in the nerve it could be a big op. (Mine was) The longer the op the longer the recovery.

I had a CSF leak after and that stuffed me. the op was fine. the CSF leak and everything around it was not.

Hope it goes well.

By the way there is a great surgeon in Brisbane who does MVD surgries.