If you have myasthenia gravis, one of the treatments your doctor may suggest is a thymectomy.
Just six months into my diagnosis I was faced with the decision of whether to have a thymectomy or not.
At that time, I’d never had surgery before. Of course, many people had opinions and most were against the decision.
But this was possibly the first of many decisions I had to make for myself as it pertained to my health. It required me to connect with my body and trust myself to do what was in my best interest.
Spoiler alert: I had the surgery.
Fast forward four years later and I fully stand by my decision to have a thymectomy.
If you’re faced with this choice in your myasthenia gravis journey, here’s some info to help you make an informed decision for yourself.
What is a Thymectomy?
Simply put, a thymectomy is a surgery to remove your thymus gland.
The thymus makes white blood cells called T lymphocytes (aka T cells) which function as part of the body’s immune system to helps us fight infections.
Since the thymus is located between your sternum and lungs, the surgery is performed by a thoracic surgeon.
This surgery was once only an option for those with thymomas but is now considered for mild to moderate generalized MG patients without.
Why is a Thymectomy done?
Your thymus plays a huge role in your childhood, after all, it’s helping you to build a strong immune system and keep you healthy. However, once you hit puberty, the thymus is supposed to shrink. By then you typically have all the T cells your need.
In some cases, the thymus doesn’t shrink, is enlarged or overactive. Removing the thymus gland stops the production of the antibodies that seem to be attacking the muscle nerve connections in MG patients.
Thymectomies are suggested to be most effective when it is performed six to 12 months after the onset of symptoms. I had my surgery right around the 6-month mark.
How do they remove the thymus gland?
There are quite a few types of thymectomy:
The most invasive is the transsternal thymectomy. An incision is made over the breastbone, and the breastbone is divided (sternotomy) to expose the thymus.
The surgeon removes the thymus and any surrounding fat in the center of the chest that may have active T-cells. This approach (similar to what they do for heart surgery) is commonly used when the patient has a thymoma.
In this transcervical thymectomy, the incision is made across the lower part of the neck. The surgeon removes the thymus through this incision without dividing the sternum. This is mostly used in patients without thymoma with certain body-types.
Robotic thymectomy and Video-assisted thoracoscopic thymectomy (VATS):
These thymectomies use minimally invasive techniques through several tiny incisions and a camera.
A camera is inserted through one of the incisions and the surgery is performed with video guidance. The surgeon removes the thymus by using special surgical tools or robotic arms inserted into the other incisions
The goal is to provide the same result as the more invasive transsternal approach with less post-operative discomfort and a quicker recovery.
For those interested, I had a VATS!
How long does a thymectomy take?
Typically 1-3 hours.
What happens to the immune system when the thymus is removed?
As I mentioned earlier, your thymus isn’t really needed after puberty. So your immune system should function as normal with the T cells that have been produced up to that point.
How long does it take to heal from a thymectomy?
Healing from a thymectomy largely depends on which technique was used, your age, and overall health.
Clearly the transsternal is more invasive so the healing process will take longer and of course leave a nasty scar down the center of your chest.
The more minimally invasive surgeries have a shorter recovery time. I was out of the hospital the following day and back to normal life within 2 weeks.
Will I see symptom relief immediately after a thymectomy?
Choosing to have a thymectomy is a long-term treatment strategy. You will not wake up after your surgery in remission.
My doctor made it clear to me that it can take up to two years to see the full results of the thymectomy.
My Thymectomy Experience
Even though I’m not the biggest fan of surgery, I feel like this one changed the trajectory of my healing journey.
At the time I decided to have the thymectomy my symptoms were at their worst. I had nothing to lose. Of course, I was nervous but I couldn’t show it. (Hello pride!)
Like I said, I didn’t wake up “healed” but when I woke up I knew something was different.
I had a great surgeon who my specialist recommended. He refers all of his MG patients to her and they have a great working relationship.
Side note: This is why I stress having a great medical team. My trust in my specialist made it easy to trust his recommendation to have surgery and to use that surgeon.
Fast forward to my four-year thymectomy anniversary and here I am: feeling better and stronger than I have in a long time.
I do have scars on 2 out of 3 of my incisions but I believe that’s a small price to pay for gaining my health back.
If you are faced with the decision on whether or not to have a thymectomy to treat your myasthenia gravis, my advice to you is to do your research, talk with your doctor, and spend some quiet time deciding if surgery is the right thing for you.