Has anyone had success with MVD and no side effects, such as facial numbness, hearing loss, loss of sensitivity and muscle control on the side of face affected? I have heard mostly negative stories so far. As a performing musician, I am trying to decide whether to undergo the surgery.
Gary,
I'm glad you posted this I was thinking about posting a similar question. I'm meeting with a neurosurgeon next week to talk about MVD. Interested to hear the responses.
Liz did mention something to me though in a message, that there are success stories and they are out living there life not spending time on our site.
Hopefully one day we will all be able to live like that :)
Jen B.
Well here I am..a success story. Hi Gary! I was diagnosed 3 yrs. ago with typical TN. My pain was electric shocks in the jaw area of my face. I had MVD surgery 7 weeks ago in Pittsburgh with Dr. Sekula, and have been completely shock free since waking up from the surgery. I do still have some soreness in my jaw area from it being strained while I was intubated and take Ibuprofen daily for it. That should eventually go away. I do not have any of the side effects you mentioned & didn't even have the fullness in the ears that many people have.
If you read my blog, I have all the details about the surgery. My only regret is that I waited 3 years to finally have the MVD. It's the best decision I could have made!
All my best & if I can be of any more help...just ask,
Judy
Hi Judy,
Did you ever read the letter I sent to Dr. Sekula, staff, and Quality Control? It was a doozy huh? How are you feeling? I am still having issues, especially with my neck, teeth, jaw, and headaches. I wente to see a Neurologist, and she is sending me to physical therapy. I had an MRI done on my neck, and I will be getting Botox in my jaw. I haven't gotten all the results back from my tests yet. It takes 2-3 months to get an appointment with a Neurologist here in Jacksonville. It's crazy! Diane had her surgery on the 6th. I hope all went well. My husband and I have been praying for her. I think my symptoms are all being caused by two nerves in my neck. I still feel like my neck was injured during the surgery.
Though unsuccessful, my MVD produced nothing other than a numbness about the 7 inch incision (neck area only) and a snare drum sensation at the hole they drilled.
I was suppose to have a stereotactic radiosurgery, that became an MVD. A long story in a complicated case.
For the most part, Liz is right. People DO get better and many move on. One person in particular who so kindly returns, having had a successful MVD is Ella, she shares here -
http://braintalkcommunities.org/forums/showthread.php?t=2028
I'll stop in when I'm better...bob
Hi Stelle,
Yes, sorry I didn't get back about the letter...thanks for sending it. I'm doing really well now except for the soreness that has remained in my jaw. Still completely shock free though. I may be giving Dr. Sekula another call soon if there is no improvement with the soreness. It actually hurts when I push on my face in the spot on my jaw! I hope you're able to get relief for all the issues you're having.
Take care...Judy
Gary,
I’m the Liz who has reminded several that success stories are not generally posted on our site unless one was already a member and then he may post a success story.
If I had to do it over again, I wished I had researched TN when I first got the pain. But the pain was managed on so little medication. But my neuro warned me that there was a chance that it would get progressively worse. But it didn’t. I had 3 periods when my pain increased but it was for a very short time, within 1 to 3 weeks it was controlled and I was able to go back to a minimum amount of meds. But mine became uncontrollable one day out of the blue just like the time it started only thousands of times worse and I could never get it controlled. That is when I started researching and I found this site. I truly believe that if I had had surgery earlier, I would not have as much pain as I have today.
But making a decision is very difficult. When my pain got so much worse, making the decision was very easy. But now that I have a lot of good days, making the decision to have repeat surgery is much more difficult. But I have an appt with my surgeon in Feb.
I wish you the best and hope you make the right decision for you. And should you decide to have surgery, I pray it is very successful.
Liz
Hi Gary, I had mvd last august and I feel blessed and wonderful! little things that have taken time to work out that were from having surgery but went away after a few weeks or so, nothing big at all. I started my activities fully about 5 weeks post surgery. Now that it’s been four months, I feel like I did before the tn hit me last year…what a relief. My incision site is still numb, but I don’t even notice it…I am so happy I chose to have mvd, would do it again if I had too. An mvd success story for sure! Blessings, janet