This month I celebrate my 1-year thymectomy anniversary. Most myasthenia gravis (MG) patients will hear or read about thymectomy surgery not long after diagnosis. Removing the thymus can be one of the only long-term solutions to managing MG, and some even go into remission after.
The thymus has a role in MG onset, and deciding to get a thymectomy is a serious decision for many MG patients. Some patients even have thymomas, noncancerous or cancerous tumors, on their thymus that trigger their disease. It can be one of the last options for refractory patients like me. But it is a major surgery that requires careful consideration.
My journey to get a thymectomy was long and complicated. My condition was not stable enough to have the surgery for many years. It’s a complex surgery. The thymus is not easy to remove. It’s underneath the sternum above the heart, and there can be serious complications during and after the surgery.
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I was scheduled to have the surgery in 2019, but it was canceled less than 24 hours before the surgery as I was in the hospital preparing for it. The surgical team I worked with then realized I was not going to get the care I needed at that hospital and decided to cancel it. It was devastating at the time, but it was the right decision. I was dealing with constant myasthenic crises during that time. My body could not handle major surgery; I was just desperate to have the surgery then. I needed better MG treatment and more specialized care to finally have the surgery.
In 2020, I started treatment that helped stabilize my condition, relearned to walk, and got some strength back. I finally stopped living in a perpetual cycle of hospitalizations and barely hanging on in between. I met with a surgeon at a research hospital who agreed to do the surgery for me. In September 2021 I had the video-assisted version of the thymectomy.
The most important point MG patients and their families need to know about thymectomy is that it’s not a quick fix. My doctor explained it could take years to know if the surgery helped improve my symptoms. For some, the surgery does not help at all. For some, they are able to go into remission eventually. It takes time to know how the surgery will help each patient. It may seem strange to have such a serious surgery without even knowing if it will help, but there are a few long-term treatment options for MG that offer sustained improvement. A thymectomy can. For me, the risk was worth it.
But honestly, the surgery and recovery were much more painful and difficult than I expected. It took me about 4 to 5 months to feel recovered, which isn’t typical. The nerve pain around all the incisions in my ribs took considerable time to improve. I think the severity of my condition contributed to that. I found limited information about how other patients did with their recovery, and most of what I read was how quickly other patients recovered, even with the sternotomy version. That made it more difficult for me to cope with how long my recovery took.
My surgeon’s team told me early in the process that the version I got was the most painful because of the trauma to so many nerves in that part of the body. They also told me afterward “there is no timeline for when the pain improves.” That was incredibly helpful to hear. Patient experiences can be so varied with rare diseases, especially with the trauma of surgery. It’s important to hear that each body has its own timeline for recovery.
Even knowing how difficult it was, I still wake up every day relieved that the thymectomy is finally done. It took me so many years to get one, and I continue to hope in the future it will improve my symptoms. The goal is to improve my symptoms enough that I can reduce treatment and have a better quality of life. Other MG patients out there having conversations with their doctors about a thymectomy should know this is an opportunity for disease improvement, but it is a serious decision. Talk to your doctors and your loved ones about your decision and weigh the risks.
I am so grateful I finally had the surgery with such an incredible surgical team. I gave my surgeon a card with my artwork on it the last time I saw her. She changed my life, no matter what the outcome will be in the years to come.