Thymectomy
Hello, I know there's previously been discussions about this from various people in various forms but couldn't find anything for this year or more recent.
I'm having my appointment with surgeon in the next few weeks regarding having a thymectomy. I do not have a thymoma but my achr abs are high. The current recommendation as I understand it is that even in those without thymoma on CT if achr abs are positive then there's a 30-70% chance of remission after thymoma (those are wide ranges aren't they).
I'm clinical myself and have read a lot of papers on this so I feel I have a good grasp 'objectively' I know the surgeon will be factual and clinical, and I'm happy to ask him all those questions, but they're not so great at the personal stuff, understandably, only the people who have had it know that in depth, you know how it affects you day to day... The little things.
As I do not have a thymoma and my symptoms are currently reasonably controlled on 30mg Prednisolone (been on for 5 weeks only so far). I haven't felt this 'able' in years and I just don't know what to do really. I know it's a personal decision and I'm not asking for medical advice obviously, but I'd really just like to hear people's experiences about having a thymectomy. The good the bad and the ugly . The immediately afterwards, those who have gone into remission and those who it's perhaps been less helpful for if anyone would care to share , or updates if previously posted about it in the past on here. I would really appreciate it 😀
Hey there! I had a thymectomy, transsternal, in 2021 with no thymoma except for what the surgeon called residual matter/tissue (I don't remember the exact phrasing) seen from the CT. I am also AChR positive. Here is an article about my recovery experience and detailed advice: https://myasthenia-gravis.com/living/thymectomy-recovery-tips. I had just been able to stop my pyridostigmine (mestinon) a month before surgery, as my symptoms were finally controlled with just prednisone and CellCept. After my surgery, I forget how many months after I started weaning off the prednisone, which took over a year if not two. Then, I started weaning the CellCept after successfully tapering off the prednisone. I just finished the CellCept taper in April this year. So, for me, the transsternal thymectomy a year after the start of my MG symptoms allowed me to successfully taper off all MG treatments, and I haven't had a flare of symptoms since the surgery. I only notice MG symptoms when I really overdo it, and even then, they're not limiting. These Facebook posts are from 2022 but have lots of experiences and advice in the comments: https://www.facebook.com/share/p/Ed4osmZVAWwX623h/, https://l.facebook.com/l.php?u=https%3A%2F%2Fmyasthenia-gravis.com%2F%3Fp%3D1753&h=AT0O_j9QA946sIneOXMh7hAZMDHTWgO5qAYZkBMKyywQ7dH517U7n0Df9IRh90ZxLojcI0oxjFJYuQIOk-OGWw3RDMavPzzoBDnNcvdHJ4voKtVPu1aBCd4AorObVIlxR-6lgTC7DJpN21WLIcaH&s=1, https://www.facebook.com/share/p/8s2H1GYd7joruP1d/
- Jodi, Team Member
thank you for the update. I knew you'd posted before about yours glad to hear your pretty much off everything now 😀 I hope it continues. Onward and upwards. I'm sorry I don't use facebook really I tend to avoid it but thank you anyway.
What I really need is a magic crystal ball haha.
