My Transsternal Thymectomy Was a Positive Experience

Shortly after I was diagnosed with myasthenia gravis (MG), the neurologist suggested I have a contrast CT scan of my chest. This would determine whether or not a thymectomy was necessary. My only memory of the CT scan was that the contrast made me feel like I’d peed my pants.

I do, however, vividly remember opening and reading the report from the radiologist. It stated I had an enlarged thymus gland and recommended I have a thymectomy to remove it.

I was petrified and felt immensely overwhelmed. My first thought was that I had a thymoma. I couldn’t deal with cancer and autoimmune disease at 20!

A few days later, the neurologist asked another radiologist to review the images of my chest CT. The older man said my thymus was just a little big and I wouldn’t need a thymectomy.

When I changed neurologists a few months later, my new doctor said the sooner we removed the gland, the sooner I might start feeling better. She also added that “a little big” was still too big.

Then she booked my transsternal thymectomy following my first infusion of intravenous immunoglobulin.

My neurologist counseled my always present and supportive mother and me before the surgery about the likelihood that I would wake up on a ventilator. We both expected that I would be intubated after the surgery.

When I woke up in intensive care following my surgery, I remember hearing my mother bickering with the nurses about my medication. We were still very new to this hospital admission thing — the good old days — so we didn’t bring my chronic medication in the original packaging. This was very upsetting to my nurse, which I completely understood. I was on an extensive amount of oral medications at that point.

I interrupted them to explain each of my medications and describe what they looked like. Then I realized I wasn’t intubated — I only relied on nasal prongs for oxygen.

When I listen to other people’s intubation stories these days, I realize how much I have to be thankful for. I don’t know whether my experience is the exception or the rule. Regardless, I know that each person with MG is as unique as a snowflake, so I wouldn’t trust a random statistic anyway.

My post-operative recovery was also hassle-free. I had temporarily suspended my undergraduate studies and moved back in with my mother. Again I was lucky because I didn’t have any financial or occupational responsibilities. I was just a 20-year-old dropout adjusting to my new reality involving chronic illness.

Initially, I hated my transsternal surgery scar. It is about 15 centimeters (nearly 6 inches) long, and I have a history of scarring badly. My scar tissue does not completely meet the requirements of keloid tissue, but it definitely deviates from the norm. The color is fading as the years go on, but it is still very visible.

Retha wears a low V-neck top that shows her transsternal thymectomy scar. (Photo by Retha de Wet)

Today I embrace my scar. I no longer want plastic surgery to reduce its appearance. In fact, I enjoy the visibility it adds to my invisible illness. At least now when I start sweating profusely in public, people assume I have a heart condition and may even show a little more empathy and understanding.

It’s also a visible reminder for my harshest critic (me) that I have been through a lot. Sometimes I need a reminder to stop and rest.

Whether you have had a thymectomy or are still considering it, never forget to acknowledge what you’ve been through. Most of us are much tougher than we realize.

Never stop fighting. Life is beautiful.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.