My Transsternal Thymectomy Was a Positive Experience

Retha De Wet avatar

by Retha De Wet |

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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.

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Thymectomy

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.

A black and white image of Retha in a low-cut, V-neck top that reveals her transsternal thymectomy scar.

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.

***

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.

Comments

nancy k locurcio avatar

nancy k locurcio

I just had the same operation but had robot 4 holes on left side my age is much higher went thru 3 different neurologist now im happy. I told my surgeon if you can do robot stop no other I just had it done mid june. good luck

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Hilda Edwards avatar

Hilda Edwards

Thank you for those very interesting articles on ‘thymectomy’. It is good to know about this surgery. I’ve had my exray and having not heard any more, presume that everything is okay. Although it is interesting to see how many people change their neurologist and their different opinions.

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Thomas L Clark avatar

Thomas L Clark

Retha, I hope your thymo was as successful as was mine. The word refractory used in your bio is manifold in use and definition. One of the definitions was stubborn and mule-headed. That is me. The surgeon that did mine was old school and the only one my little, gutsy, lady Syrian Neuro doctor approved to perform the operation. She was pilot in command! He cracked my sternum, dug out the gland, (she specified every speck of the gland removed ) wired me together and sewed me up. Then went for a smoke, hardly broke his chain smoking routine. This was about 15 years back. My wife has had both knees replaced robotically, very successful. Her scars are remarkable, mine is a thin white line but I can feel the wire under the scar area. And I do not need to hold my head up thumb under chin. I am so blessed. Loved you story.

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Ari Maayan avatar

Ari Maayan

I am delighted to read stories from people who got positive results from their thymectomy. It gives me hope for my friends on this discussion. I wish that everyone who could be helped by a thymectomy could get one. My thymectomy unfortunately didn’t produce any positive changes in my MG symptoms. It was transdermal but, hey I can’t complain because I got a 3-fer. I had a heart valve replacement (which was badly needed) and a MAZE procedure done on my cardiac atrium, which turned out to be curative for my atrial fibrillation. So who am I too complain about not getting the benefits from a thymectomy. And my transdermal incision scar joins it cousins from 5 bullet wounds and surgery for stage 3 esophageal adenocarcinoma. All in all about 6 feet of scars. I never take my shirt off at the beach or pool because I don’t want to frighten the children. But hey, I just celebrated my 78th birthday. Blessings to you all my MG community.

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Amanda Manemann avatar

Amanda Manemann

I have generalized mg and ocular mg.. I had the ct with contrast done and I have a thyamoma 8cm. I've seen the surgeon 3 times now and says I need to get my mg under control. I've just cried because it seems impossible with severe fibromyalgia and myofascial pain syndrome. He said he's afraid im not going to make it as I lost 19% muscle function. I've been getting ivigs every month besides the last 2 months and im in severe pain and can barely feel my arms. I feel like im stuck in a rock and a hard place. Im 28 years old diagnosed at 26 years old. I lost my vision completely while driving and happened to be 2 blocks from my eye doctor... he said my nerves detached from my eyes an sent me to the ER! It has been quite the last few years struggling as im 90 years old!

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