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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Thymectomy Decision

nnyguy1960
nnyguy1960

Well, I had my consultation yesterday regarding a Thymectomy.  Based on the recent randomized study published in the NEJM and my discussion with the surgeon it seems like the right thing to do.  He explained that it isnt a surgery that will have immediate effect, but it will give me a better chance for improved long term outlook with less reliance on drugs.  It would be a full transternal thymectomy to minimize any chance of leaving some of the gland in my body.  My biggest concern with my MG is that it becomes more severe or generalized, so I believe I need to do everything I can to minimize the risk of this happening.  Now I just need to decide whether I do it next month or wait a couple months so I can get some loose ends in my life taken care of first.


nukephotog
nukephotog
I won't presume to give you advice, bit will share a bit of my experience in an effort to help you decide.
I had a thymectomy via sternotomy about a year and a half ago. The main things I can tell you about my experience was that I was VERY weak for several weeks after and that in that time it exacerbated my MG symptoms. When I got discharged from the hospital I couldn't even take a shower without help. It took several more months to get to a good new medicine regimen to better control the symptoms and in-home (followed by out-patient) physical therapy to gain my strength back.
A few things about me.. I'm male in my mid-forties and my thymectomy was necessary due to thymoma (cancerous) .
nnyguy1960
nnyguy1960
Nukephotog I appreciate you sharing your experiences. I know that the fact you had thymoma steered your decision, but that aside how are you doing today? Do you believe the thymectomy helped your long term outlook? I also read some literature from the Cleveland Clinic that said the best results were gotten 6 months to a year after diagnosis. I am a little past a year, but I would want to do the surgery in advance of any worsening of symptoms.
whales86
whales86
Hi. I had mine Robotically. They went through my side under my chest bone. I was in hospital for a bit to get the chest tub out, but after that recovery was very good. I was back to work in 4.5 wks total. The only thing is I did not see and improvement. They did find 3 spot they had to biopsy were turning into tumors (They were all be benine ).
J_Allen87
J_Allen87
This is exactly the same situation I am in.....good luck with everything and keep in touch! I hope to have a surgery date soon. I was supposed to have it Jan 17 2017 but had to postpone. I spent months debating between what type of surgery (transternal or VATS) but I think the transternal will be best for me to ensure it is all out and clear. I don't want this gland growing back if any is left over!
xo
mack0427
mack0427
Just had my robotic thymectomy 2 weeks ago. Surgery lasted almost 5 hours, in the hospital 2.5 days, some pain but nothing unbearable. Thoracic surgeon stated it was huge but feels he got it all. Back to almost all normal activities. Too soon to state any success or failure but after 11 years of progression all parties were convinced it was time to remove the thymus. My suggestions, sleep in a recliner for the first couple nights at home if possible as lying flat seemed very difficult. Avoid stairs as much as possible and have someone available to help change bandages after showering. I am being cautiously optimistic. Be well.