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Thymoma and myasthenia gravis: timing of surgery and MG stability
For some people with myasthenia gravis (MG), a thymoma (tumor on the thymus gland) is discovered by chance, during the MG diagnostic process, or later in their MG journey. Surgery is often recommended, but the timing can vary depending on how stable a person’s MG symptoms are and how quickly the thymoma was found.
If you were diagnosed with a thymoma, how soon after discovery did you have surgery? How stable was your MG at the time of your procedure?
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6 Replies
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I was diagnosed in 2012 but it took over a year to stabilize. My Neurologist suggested I have a Thymectomy in 2014 since I was doing better but not really completely stable. My Thymus was very enlarged so it was a good thing they removed it. I still had a few bouts that required IVIG treatments over the next 4-5 years but I finally stabilized just using Mestinon and I’m doing well now as long as I watch my fatigue symptoms and don’t over do it.
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Taking over a year to stabilize, going through IVIG rounds, and then a thymectomy is a lot for anyone to manage.
It’s encouraging to hear that the thymectomy ended up being the right call for you and that things improved gradually over time. Many people wonder what recovery and long-term stability look like after surgery, so your experience adds something really useful to the conversation.
-Jodi, Patient Advocate
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Mine was discovered in early July (2025) and my surgery was in early September. At the time of surgery, my MG was well-controlled with 180mg Mestinon and 5mg Prednisone. Primary symptoms were double vision, fatigue, mild problems chewing/swallowing and some paralysis in my right hand. About a month after surgery, my double vision returned, but through trial and error with meds, it is back under control. I upped my Mestinon to 300mg/day. I have worse eye fatigue now, for whatever reason. One caveat is that about two weeks after surgery, I started taking Gabapentin for Restless Leg – double vision returned about two weeks later. So I don’t know if that was a trigger or not. I stopped taking the Gabapentin fairly quickly after the new onset of double vision.
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Thank you for sharing all of this. It sounds like your timeline moved very quickly. It’s encouraging that you were able to get your double vision back under control, even though it took some back and forth with your meds. Your note about Gabapentin is important too. MG can react unpredictably to new medications, and sorting out whether something is a trigger is often unclear until you step back and look at the pattern. Here is a Gabapentin discussion you may want to check out: https://myastheniagravisnews.com/forums/forums/topic/gabapentin-for-nerve-damage-myasthenia-gravis/.
-Jodi, Patient Advocate
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I was diagnosed with a 7.5 cm anterior mediastinal tumor which was removed in August 2020. This baseball sized tumor was pulled through a 1” incision using da Vinci robot surgery, which resulted in the tumor popping and seeding my chest with tumor cells. Even though I learned later that 90% of anterior mediastinal tumors are thymomas, my surgeon said he didn’t know what it was prior to surgery so he didn’t remove my thymus as is standard practice during thymoma removal.
Subsequently, I had chest radiation therapy to “clean up” any thymoma cells spilled into my chest. This was 10 weeks after surgery, and also when I was diagnosed with MG. I woke up one morning with double vision and unable to smile. A trip to the ER ruled out a stroke, and I had read about the connection between Thymoma and MG, and mentioned this to the ER doc. The ER workup diagnosed me with seropositive MG in November 2020.
I went to Stanford University Med Center for a 2nd opinion with a thoracic surgeon who I had seen give lectures on YouTube for the International Thymoma Malignancy Interest Group. (ITMIG) He had said that thymus removal is one of the treatments for MG. I relayed my previous surgery experience to him, and while I was there he contacted my surgeon on the phone to verify my thymus had not been removed. Unfortunately, he said, due to the chest radiation there would be too much scarring and adhesions to remove my thymus now.
My MG treatment consisted of a year of prednisone, first tapering up, then off, and Mestinon. I was able to discontinue the Mestinon around 2024 as my MG symptoms subsided and my neurologist stated my MG is in remission.
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My wife was diagnosed with MG in May 2022, first with ocular MG, then general MG. She went into crisis in August, and spent 4 weeks in the neurological ICU on a ventilator. Plasmapheresis saved her, and after time in a physical therapy hospital, she returned home. In the hospital, they found a thymoma, a small one, and told her that she would need to have it and her thymus removed at a later date. Initially taking 60 mg/daily of prednisone, the surgeon told her that it would need to get down to 20 mg/daily before he could operate. She was serum-positive with high levels of ACHR antibodies. By January 2023, she was down to the needed 20 mg/daily level, and the surgery was done on Feb. 1, 2023, using the DaVinci method. It was a success, the thymoma tumor was contained, and she required no chemo or radiation, post-op. Her condition steadily improved, with Vyvgart providing excellent reduction in symptoms. She got down to 2 mg/every other day of prednisone. She did have a small relapse this summer, and needed mestinon (taking 60 mg as needed for double vision) and a boost to 10 mg/daily of prednisone, along with Vyvgart. But she is doing well and looking forward to eliminating mestinon and reducing the steroid doses.
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