MVD while TN is in remission, FRIDAY

[sengels]

Hi folks.
Friday I am going in for a MVD. But I am in no pain what-so-ever right now. Kind of weird right? Well, I live in NYC and have access to one of the best MVD guys around. (Dr. Sen) I am doing it now 1) Before it progresses to become medication resistant. 2) so that I can get off my current medication Tegretol. Am I crazy? Most people try all kinds of drugs before they go for the surgery, but I just don't want to drag it out and suffer like that. I just want to get in there and get this over with. I've read many cases where people wish they had done it 10 yrs ago, so I am taking their advice and doing it now. I'm doing the right thing right? Or am I nuts? I am really nervous now this week. Elective brain surgery has got to be the weirdest decision to ever have to make...

[Silver Swan]

the sooner the MVD is done, the better. While waiting to have the MVD, one can sustain more damage from the blood vessel or vessels impinging on the nerve. At least that is my impression. Keep in mind I am not a doctor or nurse but I have read a lot from others on the Internet.

You are a brave girl and I hope that your MVD takes away all your pain. I understand you are in remission right now of course.

Good wishes to you as you undertake this brave action.

Shirley H.

[jaztsd]

Go for it. I waited too long, had an unsuccessful gamma knife which resulted in anesthesia dolorosa, and now I'm not a candidate for any surgery. The tegretol stinks.

Love,
Jan

[ella138]

Hi folks.
I've read many cases where people wish they had done it 10 yrs ago, so I am taking their advice and doing it now. I'm doing the right thing right? Or am I nuts? I am really nervous now this week. Elective brain surgery has got to be the weirdest decision to ever have to make...

That's Me! I wish I hadn't wasted so much time humming and hawing about what to do. Instead i slowly increased my Tegretol over the years from 200mg to 1200mg. It wasnt till I needed even more meds, that I actually made the decision. My surgeon said half his patients choose MVD because of the TN pain and the other half because of the side effects of the drugs. If you are comfortable with your decision, than you are doing the right thing. Glad you're braver than I was. I lost a big chunk of my life because I was too chicken to do the right thing for me, and that was to have the MVD when I was a year or two into this. ALL...and I repeat...ALL the neuros I went to said if the meds work, stay on the meds. Surgery is a last resort. Having been there, done that now, I dont agree. None of them told me it would get worse. I just hoped and prayed that if I stayed on the drugs long enough someone would invent some kind of miracle cure for this. So far....no miracle cures. I had the MVD after 13 years and now I'm fine. Good luck and stay positive.

[Silver Swan]

Sengels:

When I was diagnosed with TN, I took the drugs for a couple of months only and then had the Balloon Compression. I was 71 at the time and the neuro surgeon didn't do the MVD on anyone over 65, so I did not have that option.

I had a terrible time with the drugs, not being able to walk straight, drive, think, type, write by hand, reason, etc. etc. My husband's nephew is an MD and he said "You don't want to be on drugs for the rest of your life." and I agreed with that.

So you see why I applaud your decision to go ahead with the MVD. None of us can predict our sucess of lack of, with any surgery. I wish you the best of experiences and hope the surgery will take away your pain. We all are pulling for you my dear.

Shirley H.

[papadrew]

sounds kind of like me. The one constant though has been my ear, I have surgery monday. We can get through this together. I don't function well on pills and I only want more because I'm afraid of the zaps. Everybody I know is telling me to be excited about this but I'm feeling anxious in a way that I didn't 3 years ago over the GK. I got a little to much info at my pre-op the other day. Deep down I know I'll be ok and hope the same for you. We'll let our prayers ping-pong. Take care... Andy

[EE03]

You both are already added to mine! Big wishes for the best outcomes and please post when you can so we don't sit and worry!

Andy, take it easy and resort to calming activities or drugs if you get too anxious(just my two cents, ok, maybe three!)

Big hugs and best wishes, Ellena

[JeanC]

Best wishes on your MVD tomorrow, Susan! We'll all be sending good thoughts your way so try to relax and think positive thoughts. Take care and check in when you're up to it.

Jean

[Silver Swan]

for a successful surgery tomorrow. You are a brave girl. They will take good care of you in the hospital. We are all pulling for you and wish you the best.

Hope that you are soon back at the computer telling us all about it.

Shirley H.

[NattyNat11]

Not that I am a poster child for this but my TN pain has pretty much completely diminished. I say DO IT. Who needs the pain? Just because you are in remission now (and by the way I had 2 pain free weeks close to my surgery), the results will be worth it in the end. Bite the bullet. You will have support and this board to ***** about the aftermath...lol...

I send you strength and support.

[Fraalan]

The day before my flight to get MVD I woke up and was pain free for the first time in months. It was distracting as **** and made me think too much.
The minute I landed and got off the plain the beast reappeared and reassured me I was doing right.

good luck and get well.

[sengels]

Thanks so much for your support! :D I didn't think anyone was listening. So I posted my whole experience up at the top of the board and I am now sure that this is totally worth it. I threw away my tegretol and want to be threw with this TN business. No zaps so far. I feel great, although quite beat up. I'll hang around for any questions and progress reports. I should rest now I've actually been doing my hospital laundry & tons of email! I will post a pic tomorrow somewhere, even my website if need be. Thanks so much guys!
Susan E of NYC