Second Microvascular Decompression

How did I not see this a year ago? Wow.... yes, I had instant relief. I'd do it all over again if I had to and at my age, I might have to have a second one before the end of my life. But I hope not. I hope that this is the be all, end all for this terrible affliction.

I've only just had my MVD 2 weeks ago and I still have some pain, although not as often and intense. I am still waiting and hoping to see that it gets better over time.

However, I too am on high dosage of carbamezapine, lamotragine and Gabapentin. I am not the same person I used to be; I am always tired and groggy. It is not a great way to live.

If it turns out that my surgery did not work, I too would never have a second procedure done. My recovery has been very difficult, to say the least. My surgeon had said our Plan B would be rhizotomy. Has this option been brought up with any of you?

There are two types of rhizotomy. One is Percutaneous Stereotactic Rhizotomy, and the other one is Glycerol Rhizotomy. PLEASE RESEARCH, RESEARCH, AND DO MORE RESEARCH, ON BOTH OF THESE BEFORE MAKING A DECISION. Not the Physician in charge. For me, a BIG fat NO. God Bless.

Hi greg66242, thanks for your reply.  I'm lucky enough not to have any side effects from the surgery, just a bit of sensitivity on my head where the plate is.  Apart from that, nothing and I had a very speedy recovery.  I'm really struggling at work due to side effects of meds though - 'double' vision virturally all day at the moment and I'm a bit cognitively impaired from it as well, ie not as sharp as I would usually be, unable to find words and articulate myself at times.  It's very frustrating and I feel like I'm only operating at half my ability.  The stress of worrying about my pain going off while I'm at work and talking to people makes it worse - I feel very embarassed when it goes off and my arms fly into the air and I cry for no reason!  It's so hard to explain to people.  However, I plod on because I can't afford not to work.  If you don't mind me asking, did you take early retirement because you were near that age anyway, or have you retired very young?  I'm only 45 and need to keep working for some time yet.  I'm very interested to hear how other people manage in terms of working / off sick / retiring early.  Thanks very much - it's good to talk to people who understand.

I'm not desperate enough yet, but in the future who knows

You're welcome. I had to take an early retirement because in teaching Math, my ability to think faster than my student's(High School), was diminishing because of the pain, meds, and side effects. So I just sub for right now.  Yep...this monster sucks, and people do not realize what we are up against. I hope this helped...a little!

Anna43144, I was just reading through your note again, and the part about double vision caught my attention. I had that a year ago, just suddenly came out of nowhere. Lots of testing and all, and in the end, it turned out my body had started to reject my high dose. True enough, we dialled it down a bit and the double vision stopped. Of course the pain would come back with the lower dose, but then we slowly increased the dose again and I was fine.

Just thought I'd let you know, for whatever it's worth. I find that we have to find all kinds of creative ways to deal with the many difficult things that go with this disease.

Hang in there!

I had the stereotactic rhyzotomy and it was INSTANTLY better. I had had two gamma knife surgeries prior to this and they didn't do anything. Yes, research the best neurosurgeon in your area and ask about his stats, etc. I met with two beforehand. One was recommended by another doc and I didn't like his 'bedside manner' (and I don't like the hospital). The 2nd neurosurgeon was great and I like his hospital much more. He had tons of experience with this procedure (and patients like me who have MS).  This was the best thing (for me...no adverse effects, no residual numbness, etc.)! 

I had MVD surgery 2 months ago. The surgeon placed a teflon pad between the nerve and a large blood vessel. As an extra precautionary measure, he did a rhizotomy ablation. The pain was gone immediately. The left side of my face is numb. Feels weird but better than the pain. My biggest challenge is the double vision. Hoping it'll go way on it's own, but considering seeing a specialist who may be able to help with Prism glasses.  I honestly don't know if I'd go through the surgery again. I'm constantly reminding myself to stay positive and be grateful the pain is gone, but there are moments when the double vision really gets me down.  Thanks for listening. Good luck with going forward. I hope you'll find relief soon.

Could you please share the name and location of the surgeon who successfully did your mvd procedure? Thanks.

Kaplitt, Michael Dr-Weill Cornell Neurosurgery

Neurology

1305 York Ave, 9th Floor, New York, NY · (212) 746-5620