Quote:
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 VAT thymectomy in January 2014 and saw some improvement after the surgery, but a month later symptoms were back and I even fell down some steps when my legs gave out.
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.