I had my MVD 7 months ago on Dec. 5, 2013. It took until April 1 to totally wean off all meds (800 mg. Tegretol & 30 mg. Baclofen). Since then, I have had intermittent, mostly mild, pain. It wouldn't be every day, and might only happen 2-3 times per day. Occasionally, I would have a 2-3 day period of more frequent & intense pain. But it was still tolerable. A few weeks ago, as I was getting ready to go on vacation, I started having pains when I would lie down at night. After 2 nights, it became intolerable. 5 min. after I would lie down, my jaw would start exploding with pain. I ended up sleeping sitting up for a couple of nights. I finally called my doctor and had her call in a script for Tegretol. I was so upset to have to go back on it. I'm taking 200 mg. once a day. Now, I'm back to having just occasional, mild pains a few times on some days. I had a neurology appt. yesterday, and he wants to add 10 mg. of Baclofen once or twice a day. I told him I was in a constant fog when I was on the meds before. Yesterday was the first time I felt he did not have a good understanding of TN based on the questions he was asking me about the pain. Anyway, I don't know if there's still a possibility that things are still healing and the pain may still go away, or am I just one of those unfortunate people for whom the MVD is unsuccessful? Any thought, ideas, suggestions? Thanks! Suzanne
I'm in the exact same scenario as you…..I had mine January 7,2014…started getting twinges from eating and sometimes talking, coughing and sneezing in mid May…went back on Meds and finally got to a good dose where I haven't had any incidents for almost 2 weeks…...
My face gets red and feels funny off and on everyday too on the TN side….I haven't had any twinges from touching my face so maybe that is a sign it is healing, there is no definites with TN thats what is so scary…..
I don't know what else to do other than wait it out…hear it can take 6 months-year for things to settle down (6 months for me is in a few days)
I am back in that fog, tired and bummed out figured I'd be good for a few years at least…I dunno we'll see?
Tunetokyo - it's always good to know you're not alone. Misery loves company?? Lol But you're so right about no definites with TN. I, too, have heard 6 months to a year for healing. That's why I'm not totally discouraged. I just wish there was a way of knowing. Let's hope we both have a positive outcome in another 6 months.
Hi there - Just something to mention from my experience. I had my surgery on Oct 30, 2013, and am pain and med free :). I weaned off my meds completely by late January and had little, really painless, zaps here and there (nerve needed to settle down according to my neurosurgeon). But then, a few weeks later in Feb, I go really bad pain that centered in my upper teeth area. It was mostly localized to a single tooth but did spread out and also that one tooth happened to be near where one of my main trigger points was from before MVD. It was very painful, especially when I laid my head down at night. I was terrified that my TN was back but . . . the pain was a little different. It was more constant and even though very painful, wasn't as bad as my TN before surgery. Also, when I took one of my Vicoprofens (left over from surgery), it actually made the pain better, which was never the case with my TN pain.
This all happened on a Saturday so on Monday, I decided to go to my dentist because maybe (hopefully) it was a tooth thing and not a TN thing. I trust my dentist because they are very knowledgeable on TN. They had workshops for their staff during my ordeal to educate everyone and even wore the teal TN ribbons the entire month of October for TN awareness and because I was having surgery. Well, they took an X-ray and it was very obvious that a cracked filling had lead to deep decay and a root canal was in order. Apparently, I had not felt the pain of the decay since I was on a super high dose of Tegretol. Also, as we all know, dental care suffers a bit during painful days with TN. So I had that root canal back in February and haven't had a twinge or anything since. So in my case it was just an awful coincidence that I happened to have needed a bona fide root canal a few months after surgery. I was actually overjoyed when they said I needed one and then I knew it was not TN! They laughed because patients are never happy for that news :).
Sorry to hear you are getting enough pain back that you have to resume the medication, I had my MVD last September 17 so I about 9-1/2 months out, I have not been able to completely get off my medication, I am taking roughly 1 /2 of meds, that I was taking before the surgery, and about 25% of the time I will need to take extra pill.
I was told before my surgery by my surgeon that if I was able to cut my meds in half, and had mangable pain levels he would consider the surgery a success. Even though I have not been able to get of the meds and I feel the pain everyday, I consider the surgery a success, i am better off then I was before -both in pain levels and the side effects of the meds. Best wishes.
John
John.
I had my surgery 7/11/11. Prior to my surgery the pain was excruciating. No amount of medication alleviated the pain, not even a little bit. I was on my knees screaming with pain scaring the hell out of everyone. I had a rough go of surgery including needing an I&D of the wound and a long ICU stay. Recovery was not easy including loss of hearing on the affected side. I am still on meds but quite happy that the pain has been controlled and I was able to endure dental procedures that included the drill. I was worried that the pain I had prior to surgery would return but it has not… In fact when the meds are wearing off, I may feel a small shock or tightness on the affected side but if I take the meds, which include oxycarmazepine 300mg and 200mg of gabapentin. Infrequently, I will take 150mg of oxycarmazepine if the discomfort escalates. I have my life back. It is not perfect but better than before the surgery so I have to call MVD successful in the grand scope of things in my life. I hope this helps.
Hope you feel better. Can’t offer any suggestions since I have not had an mvd. Going for a consult in 2 weeks and hoping for the best.
Thanks to all who commented. Besides the obvious of hoping the MVD would get rid of the pain, I also hoped to be med free. I had some trouble with Tegretol lowering my sodium to a dangerous level. It's good to know I'm not the only one still on meds. I do not regret the surgery at all. It's just that the surgeon seemed so confident that he had corrected all the compressions of the nerve that I expected better results. I'll just keep hoping and praying for continued improvement as time goes on. Again, thanks for sharing your stories with me. Knowing you're not alone means so much!
This goes back to something that my neuro told me many years ago after my first MVD. He said that when he was looking for the compression during the surgery, at first he only found one small one, but knowing how much pain I had been having he suspected there could be more and decided to keep looking, and he said it took him a long time as he painstakingly and determinedly kept looking, finally finding a further large one and another - so three compressions in total. After that surgery I was IMMEDIATELY and COMPLETELY pain free - and stayed that way for seven years.
I have supposed many times since, the probability of 'failed' or only partially successful MVDs being caused by the surgeons not finding all the compressions. If you have TN you know you have at least one, but there could be more. Perhaps some surgeons stop looking after they find just one, leaving others to continue to cause you pain post op.
I think if anyone is going to have an MVD, this is a point worth discussing in advance with their surgeons. I can imagine no more crushing disappointment than coming out of surgery and STILL having the pain of TN.
Suzanne, I am so very sorry for you having to go through this.
All the best
Thank you for your response, Maur. I have wondered this same thing. The surgeon said he found 3 compressions immediately and resolved them I've wondered if he looked for any others, or if he assumed that was it. I'm trying to reconcile myself to the fact that I may always need some meds, while at the same time holding out hope that the nerve is still healing.
I know what you are going through. I had a MVD in May of 2013- I am back on Tegrital and I feel it is what it is...A failed MVD
Never the less, in your case it could be the nerve can be settling down. Give it some time and beef up your support system and perhaps Lidocaine cream a topical that can help a bit
How awful Suzanne,
I'm wondering if you had TN1? I noticed other people responded with simular results and some successful results. How many of the rest of you had TN1 or some other version? I'm wondering if that is still the way to go now....
Yes, Bonnie, I did/do have TN1 - electric shock-like pains to my jaw. I don't regret having had the MVD. I am definitely better than before. I just had hoped for total "cure". I saw my regular MD today, and she said it really does take a long time for nerves to heal, so I still have some hope. Also, I'm going to try decreasing the Tegretol to 100 mg per day from the 200 I currently take.
My only other option was gamma knife and that simply does not last very long. Both surgeons I saw said the MVD was a better option because I was so "young" (I was 55. Gotta love neurosurgeons!).
Wishing you the best!