Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
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Thyectomy

carolela
carolela
I just had my appointment with the MG Specialist. He said I am doing fine. I am off of Prednisone. Still on Mestinon and Imuran. We discuss the chance of having a Thyectomy, even though I am 67 years old. As you all probably know this is usually not done on anyone over 60 years old. He said that is because most people who get Mg after the age of 60 only have ocular Mg. Mine is full blown Mg. I have had it since 7/2012.

I am looking for any information and/or advise regarding a Thyectomy. I know there are no guarantees on the outcome, but would like to hear from any of you who have had a Thyectomy and how you are doing, what kind of surgery you had and how long it took you to see any significant results.

Any input would be greatly appreciated!!

Thanks, Carole
ShanAlis
ShanAlis
Hi Carolela,

Im guessing that your fairly stable right now considering you got off the prednisone successfully? Or were there other reasons?

I had a robotic surgery last February so its almost been a year. I am doing far far better now then i was doing last year but still not in remission. Ive also been on imuran for a year and prednisone so its kind of hard to say whats really helping?

Good luck to you :)
Busybath
Busybath
I had robotic thymectomy in April 2013 and have "ocular" MG, with some progression of symptoms in my arms and hands. I still am not sure if the surgery helped, but I have been able to taper to 2.5 of prednisone and I take no mestinon. It still feels like I am waiting for the other foot to come down though. The double vision so far has not returned, and my quality of life is much better than last year. My philosophy was that I would rather be aggressive treating and fight this disease than have later regrets of not doing everything possible. It is all a gamble.
Annie128
Annie128
hello carole,

I had transternal (through the ribcage) thymectomy in june of this passed summer. I am 16 and was diagnosed in January of 2013. two weeks following my surgery I did incredibly well and finally came out of the flare I had been in since basically diagnosis. however I had a major set back and fell back into a flare after we tried to cut my prednisone too hastily. now, Im doing quite well. ive made tremendous improvement since having the surgery. I have cut down my prednisone by almost half and am continuing to cut. I am also on mestinon and cellcept and get plasmapheresis once a week. my symptoms are managed but I am nowhere near remission. I have faith, however, that remission isn't too far away and certainly not out of reach for me!.
good luck with everything
Annie
carolela
carolela
ShanAlis- Yes I am stable right now. I started tapering off of the Prednisone in March 2013 and finished in December. Feeling good!!

Busybath- A gamble it is! I guess I have to decide to take it or not.

Annie- You sound like a very strong young lady. Best wishes for a complete remission!!!
carolela
carolela
Oops forgot the "m" in THYMECTOMY!!!!