Would you all please describe what it was like before and after having a thymectomy including what your recovery was like? I am most likely going to have one but I am so very scared about the whole thing. Thanks
Hi there, I was pretty nervous too. But am very glad I was able to do it. Preparing beforehand in my case involved starting IVIG infusion a few months beforehand b/c I didn't tolerate prednisone. I had a robotic assisted procedure. There was alot of pain for a week afterwards but as long as I took the pain medicine on time, it was very manageable. I had to take 3 months off work b/c my job was physical and required lifting. I worked during that time to restore the range of motion in my arm and rib cage, increase my walking stamina, and lots of breathing exercises !
I have not had a thymectomy but I have my own question = are they now doing thymectomies for MG without a thymoma?
Yes, even without thymoma it may still be recommended. In my case the biopsy afterwards revealed thymic cell hyperplasia, basically abnormal cells indicating some dysfunction and probably a precursor to a thymoma.
hi there I had a thymectomy in April last year to remove a thymoma. The thymoma had attached itself to my pericardial sac which caused a rapid heart beat. The operation was however a success and my heart beat settled down over a couple of days. The thymoma was however suspicious so two weeks later i was discharged and then had five weeks of radiotherapy and I am pleased to say that I have had two ct scans and they have both been clear. My advice is look forward to the operation as I have noticed a significant improvement in my condition and I have been clear of any symptoms now for over two years. I take mestinon 60mg four times a day and mycophenolate 750mg twice a day. I wish you the best of luck. Bill from Sleaford in england
Mallory San Nicolas Moderator
I had a thymectomy a couple months after diagnosis which was in 2015. It was terrifying not knowing what to expect. I did get a couple of different opinions (3 to be exact) to make sure I had all my questions answered, explored my options as far as what type of thymectomy to have and chose the doctor I felt most comfortable with. Feeling confident with who’s care you’re under can be so reassuring! From personal experience, I’m so glad I had it done because I believe it has helped me tremendously. The biggest piece of advice I can offer is to make sure all of your doctors are on board about Myasthenia Gravis. That includes everyone from the nurses pre and post recovery to the anesthesiologist (especially them) since they are in charge of your medications and with surgeries, there are a few we definitely can’t have or that should be used with caution. It did take me awhile to recover since it’s a major surgery so make sure to allow yourself plenty of time to rest after! If you have any other questions, I’m always happy to help share more of my experience too! In the meantime, I wish you the very best of luck! -Mallory (Myasthenia-Gravis Team Member)