After the kiddos went to bed last night I decided to read up on MVD. I was wondering...for those of you that have had an MVD how long had you had TN? I have only had since August of last year, but was thinking about asking my neurologist his thoughts at my next appt. My husband says he wants me to have the MVD. I, on the other hand, am not quite sure. It would be nice to possibly be pain free and no longer have to take meds, but I worry about the side effects, the down time, and the cost (I have insurance, but a very high deductible.)
I have just been diagnosed since August after thinking it was dental related. Then after dental procedures, it got WAY worse! The tegretol keeps me under control most of the time, but then it will quit working after about 5 weeks and I will have another attack and have to increase. I am up to 1200mg a day now and I don't think I can function if I have to up it again. I hope the neurosurgeon can change me to something else, or lower this and add something else or give me something to counteract the tiredness and forgetfulness. I want to wait another year or so before I do the MVD if I can. Let me know how things go for you, what you decide, etc....
I have had TN for almost 10yrs. Drugs have worked and not worked over that period. I am very happy I finally made the decision to have a MVD. I ws scared and kept saying no. but it was time...way past time. The attacts were getting closer together and I am on a stupid amount of drugs. the side effects from th drugs were effecting my quality of life. My suggestion would be not too let it get that far before you think about a MVD, especially with children.
Linda
Hi, Donna...
My situation is the same. Horrible pain that we thought was dental related (worst pain of my entire life). Had the tooth pulled because the dentist had already performed the root canal and the pain never stopped. I was on tegretol for a few weeks until I had an allergic reaction. Now I am on Lyrica. I just hate being on medicine...it makes me feel stupid and forgetful. One day I was waiting for my daughter to get home from school and I watch her bus just drive by. I almost had a heart attack, but thankfully remembered that I had to pick her up from a club meeting and I still had 30 mins. So now I obsessively check my dry erase calendar hourly to make sure I don't forget anything related to my kids. I feel like it is still kind of early in the game for me. That maybe I should do the meds for a while, but it does scare me that the longer I do the meds the more meds I will have to be on for the pain to stop. I think I will at least bring up the idea to my dr. and see what he thinks.
Hi, Linda...
My kids are the driving force behind the idea of surgery. They are still young (10, 4, and 2) and I don't want to miss a minute of their childhood. When I was first diagnosed with TN I spent hours crying about how it would affect my 3 kids, not the pain it would cause me. Reading about MVD...it sounds kind of scarey. Of course, the only surgery I have ever had in my life was having my tubes tied. 10 minute procedure, wake up in recovery, and go home. MVD is pretty major. May I ask about your experience with MVD? I have read the medical aspect of it, but I am curious to know how it affected you on a personal level...your experience in the hospital, your recovery time. I read you can't lift anything over 5lbs including children. That's a hard one for me.
I have had TN for almost 10yrs. Drugs have worked and not worked over that period. I am very happy I finally made the decision to have a MVD. I ws scared and kept saying no. but it was time...way past time. The attacts were getting closer together and I am on a stupid amount of drugs. the side effects from th drugs were effecting my quality of life. My suggestion would be not too let it get that far before you think about a MVD, especially with children.
Linda
I was terrified before I went for the MVD. They booked it really quick for or on me whichever you want to look at it. I had three weeks to prepare myself. Yes it is major, two hours long. I got to go home the next day though. I come out of anesthetic very well, didn't even have to go to the ICU. The first week was pretty rough, soooo tired and just weak feeling. My family were great and my mother-in-law(actually ex but is my mom now) stayed with us for the week. I would suggest that but by the end of the week it was ok, getting there except I did have a complication, a CSF leak so back to surgery I went to have that fixed(don't let that scare you). Now I go back to work in two weeks but am feeling good. Silly things are happening, like teeth at the front sensitive and tongue like pins and needles but just annyances more then anything. Starting to wean off my drugs..two pills a dose now...excited about that. Don't worry with a little help you will get through it, look back and realize it was all worth it.