Cutting the Nerve during an MVD?

Hi Claire, I appreciate your wise advise more than you know…I am not going to let a surgeon cut any nerve in my head…I am scared shi…less about having the mvd surgery and cutting a nerve …I will not let it happen…

hi Jamie, once again you speak words of widsom…I am not going to let anyone cut a nerve in my head…no way…I am scared of what I am hoping the surgery will not do then the surgery itself…is this not hell or what?

jamie leigh said:

Vic,
I know a few people personally who had the classic TN symptoms (typical TN) and the MVD worked beautifully for them. I think it’s just iffy for those of us who have atypical TN. I think I remember you saying yours is typical though, so I don’t want to discourage you. A good friend of mine has the typical electric shock pains with a trigger point and he is also contemplating surgery. He has suffered for five years and it just gets worse for him as time passes. The spells become longer with less frequent breaks. If you have a great surgeon whom you trust and you have typical TN I wouldn’t discourage you from the MVD. What does your gut feeling tell you?

Good luck with your decision. I’ll be thinking about you:)

Jamie



Sarah Hobbs said:
My mom always says and I believe in this case it is very good advice, "WHEN IN DOUBT, DO’NT!!! "

Vic Maidhof said:
Hi Jamie…I am doing pretty good the last couple of days…no big attacks…taking tegretol and hoping for another good day. I have been reading all the comments about MVD’s and I am thinking if the meds keep the big attacks away for the next couple of weeks perhaps I should pass on the MVD surgery…it is scary reading about how some of us TN sufferers end up suffering even more after the surgery…it is a tough call for me.

jamie leigh said:
How are you doing today Vic?

I have ATN, and have had it for 4 years. Went through a Gamm Knife and a nerve block. No luck. But a month ago I had a facial nerve stimulator implanted in my face and with my meds the pain is now completely gone.

This is a relatively new procedure and I would be happy to give any one any information they need on it. Email me at ■■■■■■■■■■■■■■■■■■■■.

Vic, my doctor told me that cutting the nerve could bring on a syndrome that cause worse pain.

My husband wrote this article about our ordeal. I apologize that it’s political. But please look past that and I think you’ll see that the FNS is worht looking into.

God bless you all.

Vic,
My neuro told me that if he didn’t find a compression, he would pad the nerve anyway. He did not say he would cut the nerve. Having so many different opinions from surgeons and different treatment options is what makes it so difficult to choose a treatment.
Liz

Hi Julie, thanks so much for responding…I read your husbands article and it was very informative…I agree with his politics 101%…my wife works our private health care plan system maze like a real pro…we are self employed and pay lots of money every month for private health insurance for ourselves and have so for 36 years…we are not rich people, just middle class working stiffs that made a choice over fancy cars to have health insurance instead…Thank God for that…our private health insurance has saved our lives, my wife has had breast cancer…survived…and now I am one of the walking wounded TN sufferers…I am going to learn all I can about the new procedure you have had … I am really happy for you and your family that you are pain free today…God Bless
p.s. I will have my wife read your husbands article too
Julie Nolte said:

I have ATN, and have had it for 4 years. Went through a Gamm Knife and a nerve block. No luck. But a month ago I had a facial nerve stimulator implanted in my face and with my meds the pain is now completely gone.


This is a relatively new procedure and I would be happy to give any one any information they need on it. Email me at jjmnolte@hotmail.com.



Vic, my doctor told me that cutting the nerve could bring on a syndrome that cause worse pain.



My husband wrote this article about our ordeal. I apologize that it’s political. But please look past that and I think you’ll see that the FNS is worht looking into.



God bless you all.

Hi Liz…It is tough to decide…I had gamma knife and four balloon/glercerol treatments…my tri-nerve probably looks like the turf at del mar race track after a day of horse races…now they want to poke a hole in my head…maybe I will just sit back and keep taking drugs for awhile longer…the last several days have been pretty good to me…how about you kid…? You sure help lots of people on this site with your informative comments…you are an angel…

Liz K. said:

Vic,
My neuro told me that if he didn’t find a compression, he would pad the nerve anyway. He did not say he would cut the nerve. Having so many different opinions from surgeons and different treatment options is what makes it so difficult to choose a treatment.

Liz

Hi Vi c, Hope today is a little bit better - don’t be afraid of MVD. I remember trying to answer the “sandman’s” question & the next thing I was in Neuro ICU talking to 2 of my friends. No pain ever from the incision (which was never covered) no nausea, no dizziness - surgery started 8:30am & I was eating a giant fruit plate at 6pm & drinking “Canada Dry” - God I was thirsty Walked around ICU that night & 3 trips around the next day (Thur) Went home Fri morning. Their exact words - We’re not doing anything for you here Do you want to go home? I replied YES. was released right from ICU ( damn near unheard of) Dropped off @ home - talked to my cat for about 30 min & then got in my car & went to see the girls I worked with( neck just a little stiff) Have been doing every & anything I wanted ever since. The morphine withdrawal was the pits (again - 1st time 5years ago) but that’s over too I take nothing related to TN!!!

Hi Claire, you give me more courage then you know…your experience literally brings tears to my eyes as only those of us who experienced tn can relate…I have been on the fence for a few days about the mvd surgery…one day I am going to do it and next Im not…it is really nice to hear a success story like this…now Im ready for the drill bit again…I go in the 23rd at 5 am and they drill me at 7:20am…kindest regards from Vic in San Diego

Claire said:

Hi Vi c, Hope today is a little bit better - don’t be afraid of MVD. I remember trying to answer the “sandman’s” question & the next thing I was in Neuro ICU talking to 2 of my friends. No pain ever from the incision (which was never covered) no nausea, no dizziness - surgery started 8:30am & I was eating a giant fruit plate at 6pm & drinking “Canada Dry” - God I was thirsty Walked around ICU that night & 3 trips around the next day (Thur) Went home Fri morning. Their exact words - We’re not doing anything for you here Do you want to go home? I replied YES. was released right from ICU ( damn near unheard of) Dropped off @ home - talked to my cat for about 30 min & then got in my car & went to see the girls I worked with( neck just a little stiff) Have been doing every & anything I wanted ever since. The morphine withdrawal was the pits (again - 1st time 5years ago) but that’s over too I take nothing related to TN!!!

Hi Vic,
Thanks for your nice comment. Glad your last few days have been better. Some of my days have been “worse.” I don’t want to say bad. But I am getting more of them. I am still considering trying the MVD again. I hope I can wait until the first of the year. I hope you have an outcome just like Claire’s, no complications and pain free. My MVD surgery was also very easy, in and out of the hospital in 48 hours.
Liz

Vic Maidhof said:

Hi Liz…It is tough to decide…I had gamma knife and four balloon/glercerol treatments…my tri-nerve probably looks like the turf at del mar race track after a day of horse races…now they want to poke a hole in my head…maybe I will just sit back and keep taking drugs for awhile longer…the last several days have been pretty good to me…how about you kid…? You sure help lots of people on this site with your informative comments…you are an angel…


Liz K. said:
Vic,
My neuro told me that if he didn’t find a compression, he would pad the nerve anyway. He did not say he would cut the nerve. Having so many different opinions from surgeons and different treatment options is what makes it so difficult to choose a treatment.
Liz

I have heard in some instances when the TN does not involve a blood vessel touching the nerve, that as a last resort they will simple cut the trigeminal nerve itself. I’m not sure if that is the case here, but I have talked to someone who had this procedure and she lost all feeling to that side of her face. She is content with it, as her pain was to the point where she simply could not stand it anymore. I would most definitely get a step by step description and after effects from the surgeon.