Hello
I have had two mvds came out of remission within 2 years. Then 3 more rhizolosis…threw the ear and trying to basically burn the trigeminal nerve. This was not effective. I have TN type 2B…which would be atypical…so basically all 3 branches. Constant. So initally during the first MVD he found a huge vessell that was elongated and actually embedded in 3 places in my trigeminal nerve. 2 weeks later I had another MVD because of leaking csf. Almost total remission for a yr and a half. Then slowly but surely it was there again. So I KNEW what it was. Surgeon said lets do rhizolosis. …then 3 more…then i basically screamed…IT IS SCAR TISSUE…OK MY VESSEL WAS EMBEDDED…WHICH IS AN OPEN WOUND THEN MY ENTIRE NERVE WAS WRAPPED IN THE PATCH. SCAR TISSUE HAS ATTACHED THE PATCH TO MY TRIGEMINAL NERVE. I just knew it. So exploritory MVD. And my trigeminal nerve had scarred over with tissue and we all know the rest. I have never heard many drs especially surgeons apologize. However I recieved a huge apology and an actual you knew the whole time and I didnt listen and Im sorry!. He cut my nerve as far back as he could so I have mostly no feeling at all…which is so nice…except for a strip that starts at my temple all the way to my jaw. I will have TN for the rest of my life…hopefully we have some type of advance. I am only 38 and have 3 small childrrn. The reason I am writing this is bcuz Iam suprised that I never see anyone talk about scar tissue. I would hope this at least would help one person on this site.
I'm so sorry for all you've been through Amy..
So maybe this accounts for a good deal of those who have MVD and pain relief for a while, but then it returns! Thanks, Amynay.
Thank you so much min…I am so sorry for what we all go through. …every min of every day.
Thanks for sharing your experiences, Amy. Sorry you have had to go through so much.Rissmal
Am ignorant in the Mvd, so can you explain it briefly?
Stephanie said:
Am ignorant in the Mvd, so can you explain it briefly?
Hello Stephanie I would be glad to. An MVD stands for micro vascular decompression. Whatever side you TN is on or if your TN is on both sides. A surgeon will demove the skull and get to your Trigeminal Nerve…this is not an easy task because your nerve is way deep . Most people have a blood vessel that is hitting the nerve or laying atop tye nerve. The surgeon will then place a teplon patch on that part of the trigeminal nerve so that the vessel will not affect that nerve any longer. My case is different bcuz i had a vessel embedded in the trigem nerve in 6 places. So my nerve is permanently damaged. However this does help most at least have some quality of life. I hope this explains it better.