Hi to all, I just watched a video on you tube with Dr. Neil Martin of USCA Neurosurgery, as a patient who underwent MVD surgery over 7 years ago, it is worrying to hear from him that this surgery affects can last from 5 up to 10 years. So here is my question, is there anyone who remains pain and meds free after MVD even after 10 years or longer? I am trying to find a way to ask this question directly to the Doctor, but so far I have not found a way, as I live on a Caribbean island of St. Maarten. So after thinking about it, I would like to hear from any MVD patients who are still living their lives pain free 10 years or more after their surgery. I know it can be a tough question, but I believe that knowledge is important to everyone who has had great results from this decease and this can help others like me who has limited options in case of a recurrence. I send greetings and Blessings from my home to yours and wish all affected by this pain relief asap.
i have had this surgery. it may be that it is hard to find someone and you are not getting a direct answer because: 1) people often build scar tissue over time and this starts pushing on the TN nerve. 2) TN pain grows worse in most patients over time but also can go into remissions of weeks and months. i wish you success and peace.
Have one member in here told me pain free 18 years after operation or MVD. I thought 18 years old may be not have MVD. It’s the same Operation and MVD?
No, I did not mean to imply that MVD does not work well for done and forever.
The operation they had 18 years ago is the same operation of today.
Good luck!
Jean-Marie
Please excuse typos and brevity as this was sent from my iPhone and honor my request for confidentiality if written. Thank you.
I had the MVD surgery and I got relief for one month I had it back in 2009 I have talked to several people and I haven’t heard of anybody not having pain after while The most I heard was somebody didn’t have pain for one year and then it came back I hope there are some of them out there that have had not had pain for a long time five years or more I wish it was me I have had gamma knife twice 4 or 5 different injections stents put in my face I don’t know what more to get rid of this pain besides medication
I’m almost at the 4 year mark since my successful MVD surgery (10/30/13) and have been pain free and med free since. I know that I’m not at the 10 year mark but I do fully expect to reach that and even into 20 or more years. I had a top TN surgeon and he told me that research shows a good success rate up to 17 years but that there is just not must research beyond that time period. I have met someone who is close to 15 years pain/med free and once met someone more than 20 years. I had my MVD just 9 months after my first pain began. I have read and been told that MVDs are more successful when there has been a shorter duration of pain. I’m hoping that is on my side. I promise to still post on here when I reach my 10 year mark and beyond. Before my surgery, it helped me to hear about the surgery successes.
I had my MVD back in 1996 and awoke pain free. Meds free by the time I left the hospital. However, my pain came back after 4 years. Back on Tegretol, Baclofen and Neurontin (now Gabapentin) for some years. Then around 2004-2005 I went into remission. Some minor breakthroughs but am still in remission. I attribute to staying in remission to the the 5000 mcg of V-B12 I take daily, sublingually. The V-B-12 has been indicated, but not proven, to help rebuild myelin. By the way, I am a TN/FP Support Group Leader and have 2 others in my group that are in remission and also take V-B12. Coincidence? maybe but it works for us.
Well Thank You kindly, I have since found quite some research on you tube that gives me great encouragement, I certainly hope you make it all the way pain and Meds free.
I wish you Blessings every day
Al
Interesting–I can’t take B vitamin supplements, they give me insomnia. But I’m going to work harder at eating liver once a week. Anyone here trying to get B12 through diet?
I had my first MVD in January of 1998 with a recurrence in 2006. Then I had a repeat MVD in August 2006 and was pain free until recurrence in June 2007. I had a failed stereotactic procedure in early 2008 and since then have just been managing pain with meds.
This was brought up for me and then the guy said I wasn’t a candidate due to time passing and jaw breaking. I hope they bring it back up for me. I’d have to have two. My damaged nerves are in my chin. Where the dentist puts shots in to numb you.
I don’t know why in time these don’t stay working. I’ve read about the teflon sponge being used maybe that disingrates over time? That’s the only thing I can think of. Sometimes when people stop hurting they stop coming here to talk about it. Do all of you have 1 one or type 2?