Awaiting MVD for Trigeminal Neuralgia

Thank you.

I'll come back to the site when I get a chance and let people know how my surgery worked out.

I know I found it helpful looking on here.x

I live in the US so things may be very different but TN is not different anywhere. I wrote the post about having TN for over30 years. I am 56 yrs. old and it's hard to remember when I didn't have it. I relate to your fears of surgery . I've had mvd and 2 rounds of gamma knife surgery. Unfortunately the nerves regenerated and the TN came back worse than before. I pray for all of you that your surgeries are successful and your results are permanent and you live long pain free lives. I just keep looking for the new treatments and trusting my doctors to stay on top of things. He is the best and we work together and I trust him completely. Life is hard but I manage. I appreciate being in your discussion group and hoping I may hear something helpful or be able to help some of you.

Good luck.

Hi Bob from the US,

I have heard that Dr Raymond Sekula at the Neurology Department of University of Pittsburgh has performed over 1000 mvd surgeries for both TN and HFS sufferers with a very high success rate. Have you considered consulting him?

Best wishes,

Leon

London

I have been to that clinic and tried their best. Thanks for your help. I have checked with the best all over and my only surgical hope would be to sever and cauterize the nerve. Even then branches can regenerate and the side effects would be awful. Drooping of the face, drooling, inability to close my eye, difficulty hearing and the list goes on.... It seems like my options will be pharmaceutical. My ketamine shots, gel and nasal spray along with my other drugs are helping for now. I must maintain my stress level as we all must and keep my mind busy. I have a lot of problems that prevent me from keeping my body busy but I have found a lot of things to do to keep my mind active. Do those things help you? I think we can all do things to help each other. Finding this site was great. The site here is pretty inactive. I'm enjoying the people here who are so active in asking questions but even more so in their willingness to help others. It's wonderful.

Thanks again for your info. Have a great weekend.

Hi Mrs S 

just wondered red how you are doing now ? My mum has been offered the op but is very scared.Initially she was very keen as the pain was as described by everyone as excruciating to say the least. She has suffered for almost 6 years and has had glycerol injections and the pads that stick to your face. She has taken levels of drugs so high that she was either zombie like or like she had been out on the lash all night. It's so difficult to watch her suffering and watch my dad feel so helpless for his life partner of 53 years. My mum is 73, and led a full and active life and worked as a healthcare professional for many years; this pain and illness has been so debilitating. I'm wondering if there's anyone more mature that has had the op and can offer any testimony. I've read many of the comments on here to her, some of them reducing her to tears. I just want mum to have some quality of life for her remaining years xx

I have suffered from TN since 2004. However, long story short, I had the balloon decompression operations two and a half years ago and I'm still going strong. Initially, totally numb from the top of my head down the right hand side of my face and it was very strange indeed for a long time as even your eye is numb along with half of your mouth and tongue. Drank through a straw for a while until I got used to drinking liquids and always have a napkin to hand as after more than 2 and a half years, the numbness is still there, but I'm so used to it although I can still 'miss my mouth with food!!'.  The operation was very easy to go through. A sever headache as I came out of anysthetic which the Anethatist took care of immediately, and I had a small 'scratch' to the right hand side of my cheek which healed up in a week. I was in for just one night, went back after two weeks for a check-up and then again a year later. My surgeon was delighted with my progression.  Coming off that awful medication was the best experience ever. No more zombie'ness, and your head really does clear, memory retention back to normal, back to driving and even my eye sight improved by .25 !  I was 56 at the time and I'd definately have this done all over again.  This operation is so well worth it for me.  Hope this helps.