[fazlab]

I had an MVD on August 6, 2008 for classic TN. Everything went great. I had three compressions, one artery and two veins. I was pain free for 5 months and off all meds for four.Then it came back a little at a time. Four shocks one week and one shock the following month and wham the next month just like before the surgery. Each time it happened it came a few days before my period was due.

I also have several screws that need to come out so a neurosurgeon already has to go part way in to take the plate and screws out so.....I might as well let him go all the way in right????maybe??????

So, now i am considering a second MVD but my husband is leaning towards the Gamma Knife. He thinks that maybe my brain is remembering the pain paths already traveled since the compressions were definitely fixed. Or, there is always the possibility that another compression grew out from one of the veins. I asked another neurosurgeon and he said that it is possible to happen that fast.

I had the MVD done 3 and a half years from diagnosis so I thought I had a really good chance of being fixed.

My question to all of you: What would you do???

Have any of you had to have a second MVD and was it successful?

How about Gamma Knife? I am claustraphobic!

If I have Gamma Knife, isn't it only good for a few years?

I am only 47 and I really don't want to be on these meds my whole life besides I know they will stop working sooner or later anyway.

Right now, I am on Baclofen and Topamax and I did not have any shocks this month. It is also getting warmer so this will give me a little time to think this over.

I appreciate any input you can give me!!!

Thanks,

Mary

[thedspeth]

Originally Posted by fazlab

I had an MVD on August 6, 2008 for classic TN. Everything went great. I had three compressions, one artery and two veins. I was pain free for 5 months and off all meds for four.Then it came back a little at a time. Four shocks one week and one shock the following month and wham the next month just like before the surgery. Each time it happened it came a few days before my period was due.

I also have several screws that need to come out so a neurosurgeon already has to go part way in to take the plate and screws out so.....I might as well let him go all the way in right????maybe??????

So, now i am considering a second MVD but my husband is leaning towards the Gamma Knife. He thinks that maybe my brain is remembering the pain paths already traveled since the compressions were definitely fixed. Or, there is always the possibility that another compression grew out from one of the veins. I asked another neurosurgeon and he said that it is possible to happen that fast.

I had the MVD done 3 and a half years from diagnosis so I thought I had a really good chance of being fixed.

My question to all of you: What would you do???

Have any of you had to have a second MVD and was it successful?

How about Gamma Knife? I am claustraphobic!

If I have Gamma Knife, isn't it only good for a few years?

I am only 47 and I really don't want to be on these meds my whole life besides I know they will stop working sooner or later anyway.

Right now, I am on Baclofen and Topamax and I did not have any shocks this month. It is also getting warmer so this will give me a little time to think this over.

I appreciate any input you can give me!!!

Thanks,

Mary

Hi Mary.

So sorry to hear your MVD wasn't a permanent fix. I'm gong for my MVD op in 5 days. I've tried every other avenue including the Gamma Knife back on September 26th of 2008. For me, it only gave my 60 days of relief. I was truly disappointed.

As far as the claustraphobia goes, I wouldn't worry. They knock you out for about 10-15 minutes when they attach the halo to your head as they sink the screws down to the bone. Sounds really bad, but it isn't. I was knocked out and came to about 10-15 minute later while I was being wheeled to the MRI machine for a last picture. That data is fed into the GK machine before they zap you. The close quarters of the machine will be a piece of cake as you will most likely nap for the procedure.

I wish you all the luck and pray your procedure works better than mine did for me. Reply with any questions if you have them.

God Bless!

Todd

[fazlab]

Thanks for your reply Todd. I appreciate the information.
Hey....good luck with your MVD! It really does have the best success rate
out of all the procedures. Don't do too much too fast. Take it easy for awhile.
The nurses won't automatically give you pain medicine, you have to ask for it and it is better to ask for it before you are in too much pain.
It works better that way.
If you have any questions about the MVD, just ask away!

Good luck and I hope all goes well for you.

Mary

[_Jen]

Hi Mary,

I too had an MVD, feb 08 and the pain very quickly came back (I'm on the waiting list for more surgery). They couldn't find any compressions to they "buzzed" the nerve at the ganglion instead.

If I were you, I'd probably go for the MVD again, those meds are hell (as you already know)

Good luck in your decision,
Jen

[Rum River]

Before my MVD's I was taking 3000mg Gabapentin and 400mg Tegretol daily, could not sleep, eat, work or drive.

Both surgeries were at Mayo Minnesota by Dr. Piepgras, the first 8/21/08 and the second 10/21/08.

Surgery 1 they found a classic site with the artery laying across the nerve at a 90 degree angle, which they separated. They also found a potential second site, but felt the artery and nerve were not close enough to cause a problem. I had zero relief from surgery 1.

Surgery 2 they separated the site noticed from surgery 1, and also 'sectioned' or cut part way through the nerve.

To date I have had zero pain and am not taking any medications. I do have numbness on that side of my face, similar to a shot of novacaine. I do not have any muscle drooping or lack of muscle control.

In my case I'd much rather have the numbness considering the alternative.


Hope this helps..........