I kind of get bored saying it, and people no doubt get bored listening. MVD is THE last answer, and never the answer. You go to a neurologist/ surgeon , his tools in the box; needle, knife, drill, saw what’s his opinion going to be? If he didn’t and he should have, mentioned the downside of MVD, which can be fairly catastrophic.
Microvascular compression has not been proven to cause TN, in the words of the main man conducting genetic research, “there is something missing”, in my mind common sense. These folk know there are so many questions unanswered by the theory of vascular compression, but they carry on regardless, maybe results orientated,but the questions are not asked or ignored. Why is the FPassociation even funding genetic research if MVD is the answer, it clearly isn’t and as a parent, I wouldn’t subject my child to said procedure bearing in mind the above and possible outcomes.
My dad had the surgery and he is cured !!! I’d say go for it . I have GN , it’s similar, I’m 34 I want the surgery if my pain comes back . I spent 3 years on the meds , still in pain and thinking about killing myself every day with lit even realizing that wasn’t right . It was the pills . Good luck
once again, I’m with 'moth – MVD should be the absolute last resort, if it even should be a consideration at all. The stats for it are terrible, it only works (maybe) if there’s a clear issue on a MRI, it typically holds about 5 years, and it has catastrophic possible side effects.
In my opinion you do not volunteer for brain surgery.
I’d still like to see a comparison/ study MVD procedure versus just general anesthetic, bearing in mind the latter relaxes skeletal muscle including the neck. I’ve been told it’s unethical (but drilling holes in heads is ok, go figure).
Dandy, pioneer (open to argument) of MVD, wasn’t even aware of the trigeminal cervical nucleus at the time.
A study on these lines I feel would debunk MVD, but who would conduct it?
Kind of why it takes a generation for thought processes to change. Get rid of a generation and no egos are hurt.
'moth I know what you’re talking about with being unethical to provide anesthetic. Years ago when this all just started for me and I still had almost constant pain I had dental work done with novocaine and my face felt better than it had in months and months. I tried to find a dentist to give me novocaine again and absolutely no one would even discuss it. I even offered to sign some sort of medical waiver or something acknowledging it was a voluntary shot of novocaine for non-dental work. No takers. In fact, they clearly thought I was crazy and could even have been working undercover to try and catch them doing something wrong!
If I had the choice again I would do the MVD. They only offered me the glycerol injection when I was 34 saying I was too young. MVD is your only chance for a “cure” as it attacks the cause of the pain. If you can, go.
Also, not to negate anyone’s experience but people who have successful procedures move on with their lives and don’t stay in support groups. My glycerol injection that gave me Anesthesia Dolorosa was over 31 years ago. My doctor wouldn’t give me the MVD, scared me out of it. You can get AD from the MVD but it’s less likely that from the glycerol injection. Any of the operations can end with AD.
My advise to you is YES! I found out I had this disease when I was 24, then it was called Tic Della Rue. Meds didn’t work for me. I had the MVD. I am now 66. There are issues with the MVD, but much better than that Pain! The MVD will make it feel like your face is always novacained, but over the years that has become normal for me and the feeling is relevant. I have lived over 40 years with this disease without meds and without that Pain. The MVD was one of the best decisions I made. There is nothing worse than that Pain. When it happens it is all consuming. The MVD was the right choice for me all those years ago. Good luck to you I your journey!
Hi Olivia.
I went through 5 years before we figured out what TN was and my symptoms matched, and were similar to yours. As with most, it started out fairly mild and eventually was in the unbearable stage. I’m much older than you, but I want you to know I opted for MVD and had a successful operation and have been pain-free for 3 years and counting.
I was very aggressive in managing my own approach. I live in Nevada and the neurologists here were essentially useless. MRIs showed nothing. I got an appointment at Johns Hopkins in Maryland and got much better MRIs and a good surgeon experienced in TN and MVD. San Francisco also has a good reputation.
Find yourself a GOOD doctor and get professional advice. Everyone’s situation is different even tough much is similar. I know a lot of people have not found success with MVD. I did. I opted for it because all of the other treatments were known not to last long. Meds eventually won’t work. Even MVD MIGHT need to be repeated. All I can repeat is that it has worked for me and no matter what happens next, I’m grateful for the last three years not to be on meds, etc.
Good luck. Alicia
Hiya, i haven’t been on this forum in such a long time but i wanted to reach out after seeing your post in an email i received from the site.
I began suffering TN when i was 27 and underwent a MVD 4 years ago this July at 31, i just could not cope any longer, i was up to 600mg of Lyrica daily, 100mg sertraline to combat the depression and 20mg of endep also.
I have been pain free since the MVD, the surgery was a walk in the park compared to the withdrawal from the drugs (not my surgeons fault). I too was petrified of everything you have listed, the burden, the time off work, the operation itself and my recovery but it has been by far the best thing i could have done, i could not survive on the drugs any longer.
My neurosurgeon was incredibly understanding, he just said you call me when you can’t do this anymore and wee will make the MVD happen, that we are too young to be living in this much pain.
My savior as well as my neurosurgeon was a fantastic support group who meet once a month, they put me in touch with the best of the best - although i am lucky to be in Australia with private health cover.
It hasn’t been easy but it has been worth it, i now have permanent numbness on my TN side but that is by far better than what i was living with before.
Wishing you all the best, Face Ache is the worst.
Hello Olivia. Sorry to hear about your problem. I had a very similar problem but with gloss pharyngeal nerve rather than the Trigeminal. I am a physician, Head and Neck surgeon and diagnosed my own problem after several misdiagnosis. The pain came and went and then finally did not go away. I underwent MVD endoscopicly in Orlando Florida and have not had pain since I awakened from the surgery 4 years ago. Small Teflon pads were placed to separate the nerve from the blood vessel and I was out of the hospital in about 3 days. I would without question do it again if it were to recur. Mikell
I feel guilty because I promised I would post yearly after having my MVD. I never took the amount of drugs you are taking and suffered with TN for well over a decade before it became too much. I decided having the MVD or dying was better than dealing with the pain.
For me, it was an amazing transformation. Turns out that it was veins and not arteries strangling my nerve. In fact, it was being pinched by 4 veins and ironically, that’s the maximum number that can be cut and cauterized (arteries lead into the brain so can’t). My neurosurgeon cut all 4 and while I can have some pulling sensation and itchiness especially on cold and windy days I’ve only had pain once in the 5+ years since my surgery - when my blood pressure went over 170!
Best of luck to you.
Hi Olivia
I’ve had 2 MVD’s. First lasted 3 years & blessed that I’ve been pain free for 6 years as of 11/15/18. I suggest to find a neurosurgeon that is a higgly experienced in the procedure if you choose to consider it. I was going to do the Gamma Knife after the pain came back. Started the fittings for the mask & freaked out. So much radiation & an enclosed mask wasn’t for me. Dr Abhay Sanan in Tucson AZ is my miracle doctor. He did my 2nd procedure & I feel I’m so lucky that I’ve been pain free for 6+ years & call him on each anniversary of the surgery to say thank you. I know the effectiveness declines after 3-5 years & so grateful to him. He had a lot of scar tissue to go through & pondered stopping & bless him that he didn’t stop. He does massage the nerve or something like that & has a great track record of success. Nausea was awful after surgery. Drugs didn’t help me too much but it passes. My recoveries were not too hard or long once the nausea subsided. I’d do it again in a heartbeat to be pain free.
I had 4+ years & several surgeries that turned out unrelated & 16 doctors till it was finally diagnosed so you are lucky! Medication was working but the dosages were increased & almost fell asleep while driving. Support groups are amazing , either online or in person both help a lot. I’ve been told I’m a different person post surgeries & I am. It was painful to talk & chose when I did or when I could. I suggest to consider the surgery & might or not be for you. Also don’t worry about the scar & I don’t set off anything st airports!
The mvd is the only procedure I would repeat. The meds all stopped working for me and the gamma knife left my left side numb. It has been 8 years since my MVD and I’m still pain free. I’m 65. I would not suggest anyone have the gamma knife procedure.
I can totally relate right down to the looking for a root canal. Mine started when i was 40. I lived in boston so i found the dept. at massachusetts general hospital. I too was on tegretal for 10 years until i started experiencing side effects. They work if you don’t miss a pill but i didnt want to be tied to pills and i had painful breakthroughs with them. I had an MVD which totally relieved the pain for 8 months. Then it was back. I then had a rysotomy at mass general which lasted for 2 years. I never stopped the tegretol. I had the gamma knife at tufts med center. It provided no pain relief. Then i moved to california and had the cyberknife at stanford university medical center and the pain was gone and for the first time was able to stop taking tegretol. I’m pain free. I have some numbness on my left side but no more pain for 12 years. I still find very few neurologists eho are
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