I know you are all wonderful at support and guidance. I have a very dear friend here in so much pain her life has become very difficult . She had an MVD which failed after 8 weeks
Have any of you had a second, and it has helped you?
Please write in and help my friend.
Jackie
Might "join" the MVD group here to see if anyone answers there also!
I believe my friend is a member but she is to ill to ask the question herself. I will join and ask, thank you for the idea, it's good of you.
Yes, I had a second MVD and I have been pain and pill free for eleven years. I feel it saved my life as I tried an endless list of treatments after the first MVD was unsuccessful. The treatments included two alcohol injections, one glycerol injection, one Gamma Knife procedure, a ton of Tegretol that made me a zombie, and Neurotin which didn't help me at all. The second MVD has been perfect.
That's good to know and we are happy for you. I wish I could make this happen for my friend.
dav said:
Yes, I had a second MVD and I have been pain and pill free for eleven years. I feel it saved my life as I tried an endless list of treatments after the first MVD was unsuccessful. The treatments included two alcohol injections, one glycerol injection, one Gamma Knife procedure, a ton of Tegretol that made me a zombie, and Neurotin which didn't help me at all. The second MVD has been perfect.
I have had 4 MVD's for billateral TN pain. I believe it has helped me some. Just remember that everyone's body is different and the compressions of veins may be different, considering they grow back. Just talk to your Dr. and make sure that YOU are comfortable with your final choice.
Best of luck!
Why does a second one work if the first doesn,t? How long should it be before you try again? I am not in this position but I just wonder what the options are.
can you have a second? other treatments. your friend must be depressed and that is what needs to be dealt with. emotioal strength is key.
I have heard of more ops than two Elaine. Red says a second can be more successful. My friend is of course depressed that her pain is so bad. I won't give personal details without permission but it does break my heart. Her life is very bad just now.
Ally thank you!
I will pass all this on to her and I know it will gladden her that so many of you have tried to help her. Thank you everyone!
Hallo Jackie
Just read about ur friend’s failed MVD, I wonder if she has had it done by a competent experienced neuro surgeon who is well conversant.
Prior to her op did the MRI reveal vein or artery pressurising the nerve? Though I have not gone for MVD for my bilateral TN, I had correspondence with Dr.jannetta, a pioneer of MVD ops in 1968 I was about to fly to
to USA, just at that moment of time the pain had vanished. I was very bad again in 1984 when Dr. Janetta’s team had offered me this operation but since dr. JANETTA himself was not available that time I did not proceed.
And I m till today carrying on without any surgery.
One important point I want share with you that the Neurologist told me that High BP aggravates the pain and even aftèr MVD the high BP results in failure of operation.
So v must keep that under control. I m on medication for high BP and it has helped me control pain of TN.
I feel if ur friend is repeating MVD, she must have a good experienced surgeon.
I pray for your friends relief.
Jackie said:
I have heard of more ops than two Elaine. Red says a second can be more successful. My friend is of course depressed that her pain is so bad. I won’t give personal details without permission but it does break my heart. Her life is very bad just now.
Ally thank you!
I will pass all this on to her and I know it will gladden her that so many of you have tried to help her. Thank you everyone!
Yakub, thank you so much for that, everyone has been most kind. I have no knowledge about her surgeon, sorry.
I do understand about the BP. That does for me every time. As there is a vessel near my nerve they think if I am stressed, excited etc. my BP goes up, swells the vessel and touches the nerve and well, we all know what that feels like!! Luckily most of the time my BP is OK or a bit low. It will mean a lot to her that so many care, thanks again, you have always been a kind friend to me and now to her also.
Yakub said:
Hallo Jackie
Just read about ur friend's failed MVD, I wonder if she has had it done by a competent experienced neuro surgeon who is well conversant.
Prior to her op did the MRI reveal vein or artery pressurising the nerve? Though I have not gone for MVD for my bilateral TN, I had correspondence with Dr.jannetta, a pioneer of MVD ops in 1968 I was about to fly to
to USA, just at that moment of time the pain had vanished. I was very bad again in 1984 when Dr. Janetta's team had offered me this operation but since dr. JANETTA himself was not available that time I did not proceed.
And I m till today carrying on without any surgery.
One important point I want share with you that the Neurologist told me that High BP aggravates the pain and even aftèr MVD the high BP results in failure of operation.
So v must keep that under control. I m on medication for high BP and it has helped me control pain of TN.
I feel if ur friend is repeating MVD, she must have a good experienced surgeon.
I pray for your friends relief.
Jackie said:I have heard of more ops than two Elaine. Red says a second can be more successful. My friend is of course depressed that her pain is so bad. I won't give personal details without permission but it does break my heart. Her life is very bad just now.
Ally thank you!
I will pass all this on to her and I know it will gladden her that so many of you have tried to help her. Thank you everyone!
hi Jackie ,there are a number of people on the tnauk website who have had a second MVD and a discussion about it right now www.tna.org.uk love Lyn
Thanks Lyn, you are a sweetie xx
lynda brown said:
hi Jackie ,there are a number of people on the tnauk website who have had a second MVD and a discussion about it right now www.tna.org.uk love Lyn
I am on the fence about pursuing a second mvd. I read that the risks are more likely to happen, ie. Hearing loss, facial numbness, etc. I am more afraid for second time around than the first.
Hi Jackie
I had a second MVD one year after the first. And unfortunately it was Unsucessfull.
I am due to have a Rhizotomy soon.
Saying that I have heard great success stories also.
I truly hope your friend finds relief soon.
Take care
Collette
Hi Colette
Ask the surgeon if he is going to clipp all the three branches while performing rhizotomy or spare the 1st branch (opthalmic) because Mine was spared & there is no pain in it for 45 years. I was told by my neurosurgeon that the 1st division never gets pain when alone.
Yakub
Collette said:
Hi Jackie I had a second MVD one year after the first. And unfortunately it was Unsucessfull.
I am due to have a Rhizotomy soon.
Saying that I have heard great success stories also.
I truly hope your friend finds relief soon.Take care
Collette
Again guys, thank you so much for all your replies. I am still wishing for better for all of you and of course my dear friend. I have told her about the discussion. You are all amazing, the best!
I have had 3 MVD's. None have helped. Has she tried Lyrica? Only thing that has helped me, and doesn't always do that. Good luck with your friend, she's in my prayers, and I feel her pain.
That is a dreadful shame to have endured three difficult surgeries with nothing to show for it. My friend has to take quite a cocktail with massive side effects. I think of her every hard day of her life. I hope you find lasting relief very soon.