I am considering MVD after suffering with TN since 1997 at the age of 21.i have tried epilepsy medicines different kinds that were working well for a while but now are giving me very bad side effects.,chiropractor,upper cervical chiropractic,acupuncture,nutrition and vitamins therapy.I just met with a neurosurgeon this last Friday and I am considering MVD.Any advice opinions,or questions I should ask before making this surgery decision are welcome.Thank you very much.
Hi Sparkles
I had MVD on both my right and left sides in 2013. ( I have bilateral ATN 1 and Tn2) and am very pleased that I did. I would suggest that the neurosurgeon that you use for surgery is a true expert in MVD, as this can affect the out come. I traveled from Georgia to NY for all my surgeries as I could not find a surgeon locally that had a lot of experience. Be sure to ask what the recuperation time will be like, and what the surgeon expects your outcome to be.
Please ask any questions you have, I would be happy to share my experience.
Best of luck
Christine
Get THE best and travel if you have to.
Look at doctors tab here for our favorites!
Thank you Kc Dancer,I am confident with the doctor I talked to.It has taken me a long time to even consider this because I never felt or found a doctor I can trust or believe to perform my surgery.Now is just taking that step and coming to reality that once I go surgery route no coming back.So are you pain free now?How long did you have the pain before the surgery?did you know your blood vessel was offending your nerve prior to surgery?thanks.
Christine said:
Hi Sparkles
I had MVD on both my right and left sides in 2013. ( I have bilateral ATN 1 and Tn2) and am very pleased that I did. I would suggest that the neurosurgeon that you use for surgery is a true expert in MVD, as this can affect the out come. I traveled from Georgia to NY for all my surgeries as I could not find a surgeon locally that had a lot of experience. Be sure to ask what the recuperation time will be like, and what the surgeon expects your outcome to be.
Please ask any questions you have, I would be happy to share my experience.
Best of luck
Christine
sparkles said:
Christine said:Hi Sparkles
I had MVD on both my right and left sides in 2013. ( I have bilateral ATN 1 and Tn2) and am very pleased that I did. I would suggest that the neurosurgeon that you use for surgery is a true expert in MVD, as this can affect the out come. I traveled from Georgia to NY for all my surgeries as I could not find a surgeon locally that had a lot of experience. Be sure to ask what the recuperation time will be like, and what the surgeon expects your outcome to be.
Please ask any questions you have, I would be happy to share my experience.
Best of luck
ChristineHi Christine,Thank you Christine.I am just feeling a little cold feet to take step of surgery.I have meet the surgeon and he is open for me to ask any questions I might have.Are you pain free and no medications?Are you able to exercise(I enjoy jogging when I can),go on your business with no problem.The surgeon assured me I should be able to do my normal day to day things in about 6 weeks which will be after seeing him and he can let me know it is ok.Any experience you are willing to share I would love to hear.Again Thank you very much Christine.
Hello Sparkles,
I am just past the 6th month mark since I had my MVD last October. I am 100% pain free and med free :). I was diagnosed with TN 10 months before my surgery (last January and had only had symptoms for 4 days before my diagnosis - LUCKY). I traveled out of state for one of the best neurosurgeons to do the surgery . . . Dr. Ken Casey. I consulted with 2 other neurosurgeons locally first as well as 2 neurologists, and 1 pain doctor. None of those doctors saw the compression on my MRI/MRA but Dr. Casey found it easily. I had 2 arteries compressing my nerve. One was actually wrapped around. My recovery was not nearly as difficult as I had expected. I did follow an anti-inflammatory diet for 8 weeks before my surgery, which helped a ton. I teach spin classes as a job and was back at teaching classes 8 weeks after surgery (could have done if much sooner). I was walking right after surgery and jogging, slowly, at 3 weeks after. I am so thankful that I made the decision to have an MVD and that I took the time to get as much information as I could and see multiple neurosurgeons before choosing the best one for me. Prayers for you!!
sparkles said:
sparkles said:
Christine said:Hi Sparkles
I had MVD on both my right and left sides in 2013. ( I have bilateral ATN 1 and Tn2) and am very pleased that I did. I would suggest that the neurosurgeon that you use for surgery is a true expert in MVD, as this can affect the out come. I traveled from Georgia to NY for all my surgeries as I could not find a surgeon locally that had a lot of experience. Be sure to ask what the recuperation time will be like, and what the surgeon expects your outcome to be.
Please ask any questions you have, I would be happy to share my experience.
Best of luck
ChristineHi Christine,Thank you Christine.I am just feeling a little cold feet to take step of surgery.I have meet the surgeon and he is open for me to ask any questions I might have.Are you pain free and no medications?Are you able to exercise(I enjoy jogging when I can),go on your business with no problem.The surgeon assured me I should be able to do my normal day to day things in about 6 weeks which will be after seeing him and he can let me know it is ok.Any experience you are willing to share I would love to hear.Again Thank you very much Christine.Hi Sparkles,
I am pain and med free! My case was a little more involved, since I had burning boring pain on and off for ten years before it became chronic , and the shocks started. That was when I sought a diagnosis, and after trying meds for almost a year, I went to see the surgeon. I had my right side MVD in January 2013, and although it stopped the shocks, the burning remained. In July I went back to the surgeon, and had a peripheral nerve stimulator implanted to control my right side pain. I had MVD on my left side, (which had only been affected for one year) in October , and that was a complete success.
In both cases, I had veins pressing on my nerve. This was not seen on regular MRIs, but was seen by my neurosurgeon who uses a higher resolution MRI. My surgeon is Dr. Jeffrey Brown in NY, who is a leading expert in the treatment of TN. I spent two nights in the hospital after each MVD, and flew home five days later. I used a wheelchair in the airport, as I was a bit weak and wobbly, and did nothing but rest for the first two weeks. I work for myself,from home, mostly on my computer, and was able to work within two days of the surgeries.
Good luck to you!
Christine
No…dr casey …nor an MRI
Presented that i had to have two places where he
put the teflon.
Dr casey is the best … I have no meds and no pain for 2.5 years
I only had symptoms for one year before researching and ran to surgery…because the fog of the meds ruined my life for a year.
Whatever you do …do not do any gamma or other nerve damage procedure…or MVD outcome is not as good.
Keep posting!
Look above at success stories tab…most who are well dont come here anymore!
mybell said:
Hello Sparkles,
I am just past the 6th month mark since I had my MVD last October. I am 100% pain free and med free :). I was diagnosed with TN 10 months before my surgery (last January and had only had symptoms for 4 days before my diagnosis - LUCKY). I traveled out of state for one of the best neurosurgeons to do the surgery . . . Dr. Ken Casey. I consulted with 2 other neurosurgeons locally first as well as 2 neurologists, and 1 pain doctor. None of those doctors saw the compression on my MRI/MRA but Dr. Casey found it easily. I had 2 arteries compressing my nerve. One was actually wrapped around. My recovery was not nearly as difficult as I had expected. I did follow an anti-inflammatory diet for 8 weeks before my surgery, which helped a ton. I teach spin classes as a job and was back at teaching classes 8 weeks after surgery (could have done if much sooner). I was walking right after surgery and jogging, slowly, at 3 weeks after. I am so thankful that I made the decision to have an MVD and that I took the time to get as much information as I could and see multiple neurosurgeons before choosing the best one for me. Prayers for you!!
i hope your nerve is not too jacked up for the surgery to fix at this point, but i still say go for it. picking my surgeon was like this, the insurance told me the ones i could use under my plan and i looked them all up. luckily one of them was on this site so i went to him and asked point blank how many he had done (mvd) and what the outcomes were. he told me after looking at the mri that i would be healed and he was right, though he said i would be working in ten days, and that did not workout too well, but that was nothing to do with him or the surgery, my body did not like the titanium mesh, but after that was removed, i was like a new man.
I have an appointment June 19 God willing.thanks for replays and all the success stories.