Hello,
I am very very sorry to hear abt your troubles and I definitely sympathize. While I’ve never had mvd I totally understand the emotional aspect of dealing with the pain and sometimes I think it’s even worse.
I’ve had TN for abt 11 yrs now and while I know the usual triggers, what I’ve realized is that stress is one of the biggest ones. So when I’m angry tired depressed etc it comes on more frequently and more severely.
It’s a very difficult thing to keep your mood up on bad days esp since the majority of the public even family can’t understand the degree of pain you’re in and why u can’t do simple things like chewing, brushing your teeth etc but I’ve found this community to be extremely helpful in providing support and encouragement.
I wish you all the best and just remember you’re never alone in this fight!
Tc
I am coming out of the relapse since adding Lamactal, 100mg and 30 mg of Baclofen. I also had a wisdom removed on the left side in hopes that it might help relieve pressure. My MVD is on the right side, so I thought that was odd. I’ve had this wisdom tooth since I was 20. I had a removal bridge attached to it so the surgeon felt the pressure of chewing was forcing the tooth closer to the nerves. I had the surgery Wednesday and it’s Friday. Spent Wednesday up all night with facial pain although I was put to sleep during its removal. All the pressure I’m sure was traumatic to the right side. So we will see. I am a bit more comfortable. One day at a time.
I had my MVD surgery in 2009 and it worked for me about 4 to 6 weeks and then the pain came back like it never left full force I hear so many people talk about having remission on this disease and that was the only time I ever got any relief at least my pain is controlled at this time with medication of OxyContin and oxycodone I have tried so many other medications the ones that are supposed to work for it and I always had adverse reactions With this new law I’ve had nothing but headaches because doctors believe that nobody should be on OxyContin unless maybe they have cancer so I do understand their concern but they should be going after the doctor rather than so much after the patients that have been on it for years and have it under control l have TN 2 and I have looked it up and the funny thing is that Oxycodone is the best thing for someone who has TN2 But try tell an ER Dr that I’m glad that I got to a great pain Dr and she has known me for about 10 years so she knows what has kept me in control The thing is their are people worst than we are it is hard to say that when you are having the pain but I just have to say I’m lucky that I do have this under control and I may have 3-4 attacks a day most of the days are good l pray that others can feel a little better
I had my 1st MVD work for 3 1/2 years. Went back on meds then found a neurosurgeon that specialized in TN & was going to do the gamma knife. Got freaked out about the mask & procedure & he agreed to do an MVD & that was almost 8 years ago (11/15/12). He “ pondered” stopping because a lot of scar tissue but so glad he didn’t. To me he is a miracle dr. No pain since. From what I learned at the time the results are less successful at 5 years & beyond. I call home every year on the anniversary ( sibpnce year 5) to say thank you & let him know it’s still successful. I would do another surgery in the future if I could & needed it.
Who was your doctor and where is he located because I know I had MVD surgery and that was in 09 and I still have pain 3 to 4 times a day and I am on OxyContin and oxycodone and I hate the medication and I really hate the pain it keeps me from doing things with my grandkids and great granddaughter I love my grandkids and great grandsChild and I enjoy being with them and doing different activities with them but this pain stops me from enjoying time with them so I would love to know the name of your doctor and where he or she is located so maybe I could have the surgery again and be relieved of this pain even a little bit I already lost the hearing in my right ear from the 1st MVD surgery I’ve had 6 - 7 different injections, gamma rays in back of my neck and right cheek, electric stents in right side of face and Acupuncture nothing seems to work even a little bit and the only thing left for me to do besides meds is to have my nerve cut but I’ve been told that there’s a 50/50 chance that my right side will no longer have any expression and since it was only a 1% chance that I would lose my hearing I’m not quite ready to lose my expressions in my face maybe when I’m in my 80 I might try that so yes I’m ready to take a chance with MVD again