I've just been put on the waiting list for the MVD surgery (3-6 months) I'm currently taking 2100mg Gabapentin daily which is controlling the pain to a tolerable level but things like chewing especially are unpleasant - A far cry from how bad it CAN get, but still enough for me to think the surgery is a good idea. I've been through 4 medications in the 10 months since my TN began, also making me think it's a good idea. My mother and my boyfriend also think this. I'm 28 and have been told that it can last 5 years or more if you are lucky, which also appeals to me, as it's hard having my life taken over. My question is, can anybody give me any thoughts on MVD?
Have you had it done? Did it work/still working?
Any tips on coping after surgery/what to expect etc?
For my age should this be the option I go for? I hate being so reliant on medication.
I had a second MVD on July 9, 2012 and I am still on Tegretol and Gabapentin. I felt fine after the surgery and started to ween myself off the Tegretol first. I was completely off the Tegretol after about three weeks and for the next week I still felt fine. Then the electric shock pain gradually started to return even worse than before the surgery. I am now back on my full dose of Tegretol and Gabapentin and wondering where do I go from here?
I was good for about a year after my first MVD in 2009 and then it gradually returned.
The surgery is not as bad as you might think and if TN has taken over your life I would give it a try, you have nothing to lose. But remember there is no gaurantee that it will work of it it does how long it will last. But any relief from the pain of TN is worth it and better than being medicated.
Good luck and best wishes for a successful outcome.
I had MVD June 30th of this year and woke up from anesthesia free of the shocking nerve pain that had plagued me on and off for four years. I have not had the pain since. My advice would be to research your surgeon thoroughly and make sure they have a lot of experience and success with MVD. I was fortunate that the procedure my surgeon used required only a 3 inch incision and no staples. My incision was actually closed with glue. I, like you, did not tolerate the meds well and after much research was confident that MVD was worth the risk. I have not regretted it. My surgeon found two compressions on my nerve and was able to fix them both to relieve my pain.
You will find much info here and I would also direct you to the MVD group on this site. Best of luck to you!!
I asked my surgeon who is the Chief Neurosurgeon at the hospital where i had it done how many MVD’s he had done and he said several and had never had to do a second. This was my second and I don’t think I’ll be having a third. I am now considering having a Rhitzotomy done.
I was on both Tegretol and Gabapentin after the surgery and started to slowly ween myself off the Tegretol over a three week period. When I completely stopped the Tegretol I was still taking my regular dose of 1200 Mg of Gabapentin and within a week the lightening strike pain was gradually returning until I was in full blown episodes. The pain I’m experiencing now is so severe that I really don’t think that it’s going to settle down in a few weeks or months from now.
I am now back on 400 Mg of Tegretol twice daily and it is slowly getting the pain under control. I had such high hopes that the second MVD procedure would free me from the pain and medications of TN but I guess it’s just not to be.
I’m now really wondering if the Rhitzotomy is worth pursuing. I don’t mind putting up with a little numbness on my face that will eventually go away but I’m not keen on any permanent after affects from the procedure.
If you’ve had any experience with the Rhitzotomy procedure I would really like to hear from you as to what your results or any after affects were.
I think that we are still in the early days of dealing with TN surgically and no two patients are the same for the same procedure. But without those of us who are willing to undergo an MVD now there will be little help for those diagnosed in the futuer.
how the doctor explains that ? does he say that the blood vessel they saw "Retured" ? or got tight again ?
DieselJimmie said:
I had a second MVD on July 9, 2012 and I am still on Tegretol and Gabapentin. I felt fine after the surgery and started to ween myself off the Tegretol first. I was completely off the Tegretol after about three weeks and for the next week I still felt fine. Then the electric shock pain gradually started to return even worse than before the surgery. I am now back on my full dose of Tegretol and Gabapentin and wondering where do I go from here?
I was good for about a year after my first MVD in 2009 and then it gradually returned.
The surgery is not as bad as you might think and if TN has taken over your life I would give it a try, you have nothing to lose. But remember there is no gaurantee that it will work of it it does how long it will last. But any relief from the pain of TN is worth it and better than being medicated.
Good luck and best wishes for a successful outcome.