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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-02-2015, 07:44 PM | #1 | ||
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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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09-08-2015, 10:31 PM | #2 | ||
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Junior Member
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It wasn't until around May I started to feel better and by June I was off IVIg treatment that I was getting every two weeks. Now almost two years after my surgery I'm off all Mestinon and am tapering down from a high of 60 mg daily of Prednisone to 55 mg every other day. |
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"Thanks for this!" says: | violet4941 (09-09-2015) |
09-09-2015, 08:12 PM | #3 | ||
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I don't understand why there is an immediate improvement and then things get really bad before getting better again. It's like a roller coaster. |
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09-09-2015, 09:53 PM | #4 | |||
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I felt much better after my thymectomy for a few days. When I started to decline, I asked the nurse why (I was in ICU because of problem coming off the vent after surgery) and she told me I was feeling the benefit of IV steroids they gave me during surgery to help reduce swelling. She told me it affects everyone that way, but most people don't realize the benefit is from the solumedrol. It took me several months to feel a benefit from the thymectomy. Hope this helps.
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"Thanks for this!" says: | violet4941 (09-12-2015) |
10-07-2015, 11:29 PM | #5 | ||
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10-08-2015, 11:40 PM | #6 | ||
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Junior Member
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I had a trans-sternal thymectomy and the removal of a thymoma about 18 years ago. The best I can say is I haven't gotten any worse. I've experienced one brief remission and several flair-ups over the years. Having been on this forum for a number of years I can tell you there have been many folks that have had the surgery, experienced remission and have moved on. Try searching "thymectomy" on this forum and see if you can find more success stories. Jim
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