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Originally Posted by violet4941
Hello, I would love all feedback from those that have had a thymectomy for MG. My 24 y.o. daughter was diagnosed 4 years ago and became quite stable about 6 months ago and her symptoms were well controlled with medication (mestinon, immuran).
8 weeks ago she had a VAT thymectomy. She tolerated the surgery well although she had a lot of pain for a couple of weeks.
Immediately after her surgery she had a significant improvement in her symptoms and didn't even have to take mestinon for 5 days! But now her symptoms are worse (facial bulbar manifestation) than ever and she's taking 8-9 mestinon per day. The P.A. at the neurologist office said this was typical, but I'm still worried. Has this happened to anyone else? Has anyone seen a marked improvement followed by a rapid and worsening decline? What does this mean for her chances for complete remission? I am curious what others experienced in the weeks/months following thymectomy.
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I had a transcervical thymectomy a looong time ago. For me, the thymectomy saw no immediate benefit, but my symptoms stopped getting worse. My original neurologist wasn't that good (IMO) since his treatment was mestinon and steroids (Prednisone). The second Dr weaned me off the prednisone and I started taking cellcept (mycophenolate mofetil). I improved and stabilized, but never got to 100%. Then I had an accident (fell off ladder and that had nothing to do with MG), but it did make me realize i wasn't physically fit. I was heavy (very heavy), i didn't exercise and I didn't eat properly and I drank way too much diet coke. Well, now I feel about as close to 100% as I ever had. I've lost a ton of weight, I exercise regularly, I take a lot of supplements (Fish oil, borage oil, to name just a few). Overall I felt that was the key to my success with MG. Good luck with your daughter.