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In my last column, I discussed how thymectomy surgery is an important part of myasthenia gravis (MG) diagnosis and treatment. Not all patients will need a thymectomy or have to go through the diagnostic process to see if a thymectomy is necessary, but it is still important to know what it entails. I want to share some of the processes that lead to a thymectomy and how MG patients and their medical team decide one is needed. 

Depending on the severity of a patient’s symptoms, whether they are responding well to treatment, or even just as an early part of the testing process, decisions will be made about looking at the thymus. 

Getting a computed tomography (CT) scan of the thymus is a common experience for MG patients. A CT scan can show if a patient has a thymoma (cancerous or noncancerous thymus growth) or if the thymus is enlarged, both of which can be contributing factors to disease onset. 

The findings of the CT scan can determine whether a patient needs the surgery immediately or if it’s just added as a later option to the treatment plan. I have talked to patients who have had “normal” thymus scans, but during surgery, they discover there were problems with their thymus. The scans are one of the first steps in the thymectomy process. I have had multiple thymus scans over the years, and thankfully the scans and the surgery showed no thymomas.

I had the surgery because my disease is refractory and my symptoms are severe. The goal of removing my thymus was to hopefully reduce the many other treatments. Since a thymectomy is such a serious surgery, it is often not discussed as one of the first treatment options. There will usually be other contributing factors. When surgery is discussed as an option, the patient and their family need to weigh the risks. Getting a referral to a thoracic surgeon will be one of the next steps. Finding a surgeon who will answer all the questions a patient may have and who will help walk them through the process is important. 

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The surgeon will look at the thymus scans and decide which version of the surgery will be best for removing the thymus and for the patient’s recovery. Initially, my surgeon wanted me to have the sternotomy version because of my respiratory weakness. But in the end, I had the VATS version and had 4 incisions in my ribs where they deflated my left lung and removed the thymus.

The hospital the surgeon is affiliated with will also be part of the decision process. I had my surgery about three hours from home. My husband had to stay in a hotel during the days after my surgery. Since I have a severe form of the disease, I needed to have the surgery at a research hospital. I had to do other testing and meetings at the hospital before the surgery so that included a lot of travel for us before and after the surgery. The amount of travel needed could be part of the decision-making for patients who need the surgery.

Patients and families will need to plan before the surgery about how to manage the recovery process. I mentioned in my last article that my recovery process was much longer and more difficult than we expected. My husband took about a month off work, and we made preparations before to help my recovery at home. Coordinating other treatments like infusions around the surgery will also be part of the process. Planning for support from family and a patient’s medical team during the recovery process is essential. 

The process to get a thymectomy can be complicated but since the surgery is such a common part of MG management and advances have been made to improve the surgery and outcomes, patients should know they are not alone in making this decision, and there is support as they go through the process. Once the surgery is done, all that’s left is the recovery, waiting, and relief it is done.