Community Views: Having a Thymectomy

One treatment for myasthenia gravis (MG) is a thymectomy. A thymectomy is a surgery on your chest. The surgery removes the thymus gland, which is near the heart. For many, removing the thymus gland leads to MG remission. Remission is when you do not have MG-related weakness, even without medicine.¹

People have thymectomies to remove thymomas (tumors of the thymus) and to combat MG-related weakness. Candidates for surgery are younger than 60. It is not a treatment that is right for everyone.¹

We recently asked members of the MG community on Facebook, "What would you say to others considering a thymectomy?"

Here are some of the responses and the experiences they shared.

Do it!

Responses from those who had the procedure were mainly positive! It profoundly impacted respondents’ quality of life. Many ultimately achieved multiple-year remission.

"My son has been in complete remission after his thymectomy. Make sure you have MG experienced doctors before, during, and after."

"I would do it again! Not in remission, but better than I was pre-surgery."

"Do it. My mom had MG for several years. After she had the thymus gland taken out, she was gradually taken off steroids and Mestinon. She’s been in remission for 38 years."

"Best decision I ever made!! It gave me my life back."

"I had it 20 years ago, and I can say it was one of the best things I did for myself."

Surgery recovery

Recovering from a thymectomy is painful. There are several ways the surgeon can get to the thymus. An "open chest" cuts through the breastbone (sternum) to access the area near the heart. A cervical incision cuts across the lower neck.^1,2

Robotic surgery is less invasive. That is, it uses smaller cuts and smaller instruments to perform the surgery. But it is also more likely to damage the tissues near the thymus gland.^1,2

"My recovery was long and quite painful, and I have an almost 12-inch scar (from open chest surgery)."

"If you do it, stay on the pain med schedule because if not, it’s very hard to get comfortable again once the pain starts."

"Telling everyone the scar (from open chest surgery) wasn’t heart surgery over and over was tedious, but it’s worth the pain to have a normal life without MG symptoms."

Working toward remission

After surgery, remission is not immediate or guaranteed. Respondents continued MG drug treatments for several years. Slowly reducing their dose often led to remission.

"Two years after surgery, I went into remission and am still there."

"Within another year (after surgery), I was off steroids and Mestinon. I have been feeling good for the last 16 years."

"My sister had a thymectomy in 1985. She went into remission about 2 years later. She was off steroids in a few months and off Mestinon in about 4 years."

"I did it in December last year (2021). I’m not in remission, but I’m close. Off all meds, but take a Mestinon once in a while."

"It took 3 years to see the improvement, but it was all worth it for me."

Surgery complications

All surgeries come with risk. Some respondents had serious problems after surgery. More than one respondent mentioned having damage to their phrenic nerve. The phrenic nerve controls your diaphragm and assists with breathing.³

Weighing risk with potential benefit is critical when considering a thymectomy. Talk in detail with the surgeon and MG doctor to make a good decision.^2-4

"I got the (robotic) operation last November (2021); they damaged the phrenic nerve, which is a risk with the operation. As a result, I am only working off 1 fully operational lung. I haven’t had any MG symptoms since, so as it stands, it is fix one thing and break something else."

"Thymectomy was fine and helped my MG, but I would not recommend [robotic] keyhole surgery. It damaged nerves under my left breast and has left me with nerve pain which is always there."

"It did not help me at all. It actually caused me to go into crisis after surgery."

"I didn’t respond well to the thymectomy, although there were signs of dysplasia (abnormal cells)."

Thank you

We appreciate everyone who shared their insights and experiences with thymectomy. Hearing from others may be helpful for anyone thinking about this surgery.