Hi Abby,
I had a robotic thymectomy back in December, 6 months post diagnosis via SFEMG and 2.5 years post symptoms start. I am seronegative. I too asked if they could abort the operation if it turned out they couldn't do it robotically. A nurse told me that they would only change to the transcervical method if it became a life/death situation, and that she only recalled it happening once in the previous 5 years or so. I don't feel improvement from the surgery yet, and have actually added imuran since then. My neuro in Chicago told me that most research done on the effectiveness of thymectomy is done on antibody positive folks and so might not be reflective of seronegative patients. I was in hospital 4 days, at work after 2 weeks, could've used more rest but oh well. Best wishes to you!
Quote:
Originally Posted by Stellatum
OK, I have come to a tentative decision. I think it is reasonable for me to have a thymectomy if it can be done transcervically. I do not expect it to cure my MG, or even to put me into remission, but there is a good chance that I will see some improvement.
One reason there are no conclusive studies is that "remission" means different things to different people. Some define it as no symptoms and no drugs. Others define it as no symptoms with continuing drugs. But it seems clear that there is good reason to hope for improvement, even for an older, seronegative patient who's had this disease a while. No guarantee, but reasonable hope.
I am going to see if I can meet with the surgeon and ask him:
1) Will imaging studies before the thymectomy help you determine whether mine can be done transcervically?
2) Are you willing to go into this with the agreement that if you begin and find that it can only be done transsternally, you will abort the procedure? For me, the transsternal thing is a deal-breaker.
3) Can this be done with some sort of anesthesia that doesn't involve muscle relaxants?
If he says yes to all three, then I think this is a reasonable gamble for me. I don't expect a remission, but the level of my symptoms right now is such that a noticeable improvement is all I need to live pretty normally. I'm going to call my neuro now and ask for a referral for a consultation.
Thanks, everyone, for talking this out with me.
Abby
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