Worsening symptoms 8 weeks post thymectomy
 

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.

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.

Thanks so much for your reply. I am so worried. Need to get her to the neurologist, but wanted some reassurance.
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.

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.

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.

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