I have been reading several stories within the various sites in this Forum regarding the outset of MVD procedures.
I realize that everyone’s medical history differs to a degree in severity, the length of time that the symptoms have been problematic and the previous modalities of care one has tried.
Those that have gone through the “BIG one” MVD, I have noticed sadly that some haven’t been helped as much as the statistics show. 87% favorable outcome.
I am wondering have some of you seen total or close to, this pain eradicated, and have you seen that this sometimes takes weeks,months or years to diminish.
Have you been able to get off the Tegretol, Gabapentine after a period of time.
Those of you that found that the procedure didn’t do squat, did your surgeon give you an explanation even after pulling those vessels off the nerve. ?
These questions may be weird but would like to get an idea of how everyone feels about this ONE procedure that is suppose to provide the best outcome in eliminating TN pain for good.
I have been reading several stories within the various sites in this Forum regarding the outset of MVD procedures.
I’m having the BIG ONE done in two weeks and I also wonder if this is as successful as they claim it to be. If you read all over this site I have read few that have had a great outcome. So why am I going ahead you may ask? Lol! We’ll I really don’t see that I have a choice…the meds have damaged my liver and I am maxed out on the amount I can take. So I am going to go for it in hopes that I am the one that comes back on here with a wonderful story. May 30th is my surgery date…so after that I will come back on and let you all know my experience.
I had a MVD in Jan 2015, I found full relief for 8 months and then the pain came back even worse (I have Geniculate Neuralgia, the pain in both ears) and I had to go back on Gapapentin then Lyrica. It didn’t help so I had another surgery to have the motor cortex stimulator implanted, that was 3 weeks ago. I am having relief in my right ear but I still take Gapapentin for left ear pain. It took me 6 weeks to fully recover from the MVD as the vertigo and pain was absolutely horrible!! The stimulator has been amazing so far!
Geez Louise… These stories are so sad. I wish each of you that had had this procedure, were doing better. It may take a bit longer for the symptoms to finally take the hiway.
For those slated to have the procedure, I wish everyone a successful outcome.
I had written a similar post this am asking the same question as you Barberchick .
Can it be a misdiagnosis and although the nerve shows compression. Can it possibly be something else that isn’t been thoroughly ruled out, tested, or considered.
I have understood from my reading and discussions with neuro surgeons, that after an accurate Contrast MRI that shows the nerve is being Compressed, whether by direct contact, or otherwise, that the MVD should be the best route in eliminating the pain at the source. Am I wrong …?
I wish we all had the “Bewitched nose” to wiggle the pain away. Best to everyone. BB
The more likely explanation is that people posting on Support boards are what we "mathematicians/statisticians" call outliers. There used to be a lot made that there were 7000+ folks here. There isn't. There are that many registered. people come to these boards when they first get a DX or are looking for a DX. They get the information and move on never to be heard from again. Others have DX but are receiving great treatment and are busy living life and pop in occasionally (not often enough IMO, its nice to know there is hope isn't it?)
Then there are the outliers. These are the folks who are are having a tough time and continue to have a tough time. They are not part of the 70%+ whos TN is controlled or mostly controlled by medication so they are here seeking (and hopefully getting) support. There are those who are surgical patients. Successful MVD patients leave pretty quickly too. They things to do places to be etc. They don't need much support either. So we have more folks with surgical problems than one would expect. It doesn't surprise me a bit. after all they are the ones needing support.
So climbing on my soapbox.... This site is free for all (although we are dependent on donations to keep the lights on) That's the official and correct stance. HOWEVER I personally believe that anyone who has received support, information, help should feel at least a bit of obligation to pay it forward. We hear way too much of the bad and not near enough of the good.
Thanks for that… I am hoping for a good outcome tomorrow with the MVD procedure. Friday the 13th seemed to be a reasonable day for brain surgery.
I do promise to keep you all posted on how things fair with me. We are truly blessed to have the medical technology available today to combat these rough medical issues.
This support board as wonderfully explained by Mod Support is correct. We that do well with what ever procedure we decide, must try to remember to check in, and encourage those that are dealing with this extreme pain with positive and long lasting results.
I realize not all of us will do as well as the next person for what ever reason. Each of us has different health issues, medical histories, and age differences.
I do think we all are in agreement that any less pain provided by what ever intervention we choose, is a “Positive”.
A return to a basic Quality of Life again, is all I am hoping for tomorrow.
To kiss my wife again without pain, to eat using both sides of my jaw, to blow my nose without dropping to my knees, to brush my teeth
( all of them ), to sleep soundly without fear of moving wrong. It goes on and on.
I wish everyone the best of the best, BB
I had MVD back in Sept 2014. I was advised I would have approx 5 years pain free. Was also told healing was to take 2 years. Yesterday I started feeling numbness in lower right jaw area. If it continues I will be calling neurologist.
After MVD I continued on 1 Carbamazepine per day as a precautionary measure. Glad I did. I am now up to 2 per day. I am hoping this is temporary.
MVD has provided me with relief and I am thankful for the time without pain
Chippy, hope your 5 years goes for another 25.
I am thinking about asking the surgeon to insert two teflons per site instead of one, or maybe some of that super water tite tape I got at the fair, might do better…
An MVD procedure lasting 5 years with a 2 year time period to see improvement, seems a bit short. It’s sort of like saying Today’s Special, we are offering the standard 10 year 3 tab roof covering in Sahara Mist, or our 30 year roof which includes our patented leaf protector.
You know which one I am going with.
According to my surgeon, he expects this procedure to last many many years. I am 61 now and another 25-30 should work just fine. I have no clue if his many many years, is any where close to what I am hoping for. Ha! I hope things get sorted out for you and that jaw settles down. BB
Accidently posted this twice… Am sorry…
I agree with ModSupport. Those that come to a support line are the people that are living with the devil. Once they find complete relief from TN, They may only pop in to read what is going on but no real need for support. They're probably better!
I had TN on the left side of my face 12 years ago. I managed with a medication regime for 2 years and then decided I had enough. I opted for any ablation, which is minimally invasive but leaves you with numbness. I woke up in recovery without pain and discontinued my medication. It was a complete success story. Presently I have no pain on my Right side and the numbness is Absolutely tolerable. Its amazing how our brain adapts.
I am on this site because unfortunately I now have TN on my Left side. I'm in the process of figuring out what meds work and what doesn't. I am the kind of person that will attempt to figure out my next move because I will not live with this devil. Because I'm numb on my right side the ablation may not be an option for my left and I will move forward with the MVD. Scary? yes. But the odds are in your favor. If it doesn't work (which it probably will) your option could be the ablation.
I wish you a pain free life!
I have bilateral ATN, with both the shocks and the burning boring pain, and all three branches involved, and have had MVD on both the right and left sides. My right side had been affected for 10 years before the surgery. The shocking pains were completely resolved by surgery, but the burning boring pain returned within 6 months. I had a peripheral nerve stimulator implanted on that side to manage the pain, and it works very well. The surgery on my left side, which had on,y been affected for 1 year, was a complete success. I was off medication within two months. All my surgeries were done in 2013, and I have no regrets about choosing these surgeries.
Unfortunately, I have recently been experiencing symptoms of either glossopharyngeal or genticulate neuralgia, so I will be returning to my neurosurgeon to see what my options are.
Best of luck to you!
I had my 1st MVD in December of 2010. I was pain free for about 1 day. I had my end MVD in April of 2011. Yup. About 5 months time span. When I look back, I thought my ORIGINAL pain was the worst pain imagineable.
I was wrong.
I have tried just about every non-narcotic medication in the Veterans Medical Admin Centers formulary.
I’ve tried acupuncture.
I rarely sleep because of the pain.
I can barely swallow at times.
I’m now considering having the entire nerve removed within the next month. This will be performed by the same neurosurgeon.
As if the pain isn’t enough, I have to deal with the red tape and politics of the VA Hospital here in Cincinnati, OH.
I’ve been on the verge of suicide and ended up on the psych ward.
There are times when i feel uttterly useless as a spouse as well as a mom to my 11 year old daughter.
I keep trying though…because my daughter is so young.
I honestly doubt I’d still be here if she were already grown.
I’m willing to give up ALL FEELING ON THE RIGHT SIDE OF MY FACE AS WELL AS THE EVENTUAL DECREASE IN VISION IN MY RIGHT EYE…if only a slight edge could be taken off.
Just take the edge off is all that ask.
I had my first MVD in 2010 and it only lasted 4 months, when pain came back, I rarely slept because of the pain, I barely at times ate and lost 34 lbs. because I could no longer eat, I could only open my mouth the size of a straw and drink some liquids when the pain allowed.
It was the worse pain imaginable, on the verge of suicide, ready to end the pain, with all my pill bottles and a glass of water sitting at my desk and thinking that it was the only solution.
These thoughts of who was going to take care of my parents and my fur babies popped into my head out of nowhere, I turned around and saw them sitting on my bed and knew I could not do that to them or my parents and I went for a second MVD.
The second MVD in 2012, only lasted 14 months… and to this day I am on medication that takes the edge off, but I still do have bad days and nights, but not as bad as before.
I am hoping a cure is found before I get too old.
I’m so sorry this happened to you and I hope you are doing well. I’m at a point where I really need surgery now, but I’m really scared because I’ve heard so many stories like yours. We really do need someone to find a cure, do we ?!
I hope you are feeling better. I’m so sorry your pain can be so bad. I comp,Evelyn understand. If my pain comes back to as bad as it was I’m totally ready to commit suicide because there is no way I’m living like that- except I can’t do that to my son, so I have to have surgery, I just pray it will be a success, and or at least not make it worse. I pray that you are doing well too.
I had my MVD some time ago in 1992. Immediate, upon waking from anesthesia, 100% pain relief. Unfortunately, only lasted 4 years. Back on Tegretol, Neurotin and Baclofen for years. At a TNA International Conference I asked the neurosurgeon’s panel why it had occurred after 4 pain free years? Immediate answer by the late Dr. Jannetta and Dr. Casey that if pain returns more quickly than the neurosurgeon missed a vessel. If after 4 years, like mine, probably another vessel. For some reason, in 2005 I went into remission and gradually eliminated all meds and am now pain free. To help I take 5000 mcg of V-B12, sublingually( under the tongue), daily. V-B12 is thought to help rebuild myelin and I will keep using it although I can’t prove anything.
I had my MVD almost 3 years ago (10/30/13) and I have been 100% pain free since surgery. I weaned off the high dose of Tegretol I was taking slowly after surgery and haven’t taken anything since. I had my surgery just 9 months after my TN1 symptoms started. I was fortunate in that my symptoms were classic and I was diagnosed in just 4 days. I traveled out of state to have my surgery done by one of the best after extensive research on my part. I hope that more will come here to share their success stories. Praying too that each and every one on here finds a success story and relief from the horrific pain.