When newly diagnosed patients with myasthenia gravis (MG) read about this rare disease, one of the first treatment options they’ll see is thymectomy surgery. Realizing you might need major surgery is shocking and daunting. Also, it can be confusing to learn that thymectomies can lead to remission for some patients and not help others at all.
It usually takes a year or more for the surgery to take effect. Why would anyone have major surgery without knowing for certain it will offer any benefit?
This is one of the more perplexing questions many patients with MG will face. For patients like me, who have a severe, refractory form of the disease, thymectomy surgery is usually recommended. September marked my five-year anniversary since I had the surgery, and, thankfully, it did provide some benefit.
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Around 65% to 70% of people with MG have an enlarged thymus gland or a tumor on the thymus (a thymoma), and many patients will need a thymectomy. A CT scan of the thymus can be a normal part of MG diagnosis and treatment. My CT scans showed a normal thymus, but my condition was severe, so doctors still recommended the surgery.
After my diagnosis, I lived in the hospital part time for many years; I was in a perpetual myasthenic crisis, never fully able to recover after each hospitalization. I couldn’t walk and was dependent on my ventilator nearly all the time. I saw doctors for years who would recommend the surgery, but they refused to make it happen.
Getting the surgery
In 2020, I moved my care to a different research hospital, and my new neuromuscular doctor started me on a complement inhibitor. That helped stabilize my condition enough to have the surgery. The risks associated with thymectomy surgery are real: It can trigger a prolonged myasthenic crisis, and there’s the risk of infection. But, at that point, I had discussed everything with my doctor and felt ready to face the risks.
Learn more: Your guide to a thymectomy for myasthenia gravis
I met with a thoracic surgeon, and she told me because my condition was so advanced, the prospect of remission was unlikely. She said the surgery’s goal would be to have few to no more myasthenic crisis hospitalizations.
I had the surgery during the COVID-19 pandemic in September 2021. I had more complications than expected, and it took a couple months to recover. The severity of my condition made it difficult to bounce back quickly.
Noticing improvement
About a year after my thymectomy, I began to notice a difference. Before surgery, when I had flares, my condition would decline quickly. I would end up in the hospital in a matter of days or hours. After the thymectomy, my flares progressed less quickly. I was able to make it through flares and between my regular infusion treatments better.
Five years later, this remains true. I still experience flares, but I don’t decline as quickly as I once did. Also, I haven’t had a myasthenic crisis hospitalization, which is incredible compared to how life used to be.
What made all the difference for me was switching my care to a doctor who believed me and wanted to treat me, being on multiple treatments to manage my MG, and finding a surgeon who had faith I could do the surgery.
A positive outcome
A thymectomy doesn’t provide any guarantees, and it isn’t a quick fix. It requires knowledge of calculated risks, a good care team and a careful plan. For refractory patients like me, it can offer some of us real hope.
The surgery was difficult and more painful than I expected. However, I have no regrets. I’m eternally grateful for my care team. They gave me the opportunity and I took it, and I know that’s part of why I’m still here today.
