My Thymectomy and Me
It was January 2021, a new year. My first neurologist appointment of the year, my doctor and I decided that the next step was a thymectomy surgery. I was a little apprehensive at first, as I’m sure anyone would be. But I knew it was worth trying to possibly get my myasthenia gravis (MG) better controlled.
In early March, I met with a cardiothoracic surgeon who was extremely knowledgeable and experienced with thymectomy surgery. He told me the risks, but he also helped ease my anxieties and was patient with me about all the questions I had. We scheduled the surgery for April and all that was left to do was show up that morning.
During the time before my surgery, my symptoms got a little worse. I started to have trouble talking for longer than 5 minutes. The muscles in my tongue would get fatigued and I started getting what I called "mush mouth." Luckily, I was close enough to my surgery that I was hopeful it wouldn't persist long-term.
Time for surgery
Thursday, April 8, 2021, thymectomy day! Due to COVID, no one was allowed to come into the hospital with me until after surgery. That was a little nerve wracking, but I stayed positive and powered through.
I checked in at the front desk and was escorted to the surgery waiting area. I was on the phone with different family members and friends calling me before I went into the operating room which helped calm my nerves.
While waiting, my surgeon came in to check on me, told me what was going to happen, and reassured me that everything was going to be okay. Then, the nurse came to tell me it was my turn.
A few hours later, I woke up. I was a little groggy at first, but when I realized that everything was done I felt so happy. Everything went great! Even the surgeon said it went better than expected. I was unsure how my symptoms would change or if they would at all, but I all I could do was feel happy.
The first thing I did was called my parents. Even though I was still a little fuzzy I just knew we needed to hear each other's voices. My mom was waiting to come visit me once my room was ready. Unfortunately, it ready until late that night so I told her not to come. Thankfully our phones can do so much that I got to video chat with everyone which made me feel better.
The next morning, I woke up and was ready to be sent home. While I was waiting for the doctor to come and discharge me, I was reflecting on how my symptoms already weren't as present as they were prior to surgery. Knowing this isn't an overnight recovery type of process, I didn't get my hopes up too high. The doctor came in and told me all the dos and don'ts and I was discharged.
When I finally got home, I needed help with a few things like stairs, but nothing too bad. Immediately the most noticeable improvement I had was my speech. I had no trouble with it at all since I woke up from my surgery. A few days later, I was getting around better and even back to driving.
A month after my surgery, my symptoms were still on the upswing. My symptoms were barely there and I could tell I could be more active without my muscles getting fatigued. I had my follow-ups with my neurologist and with the surgeon.
The surgeon said everything was healing well and looked good. One out of 2 down. My neurologist was impressed with how I've been feeling, and even saw improvements with my physical tests I had to complete. Usually, thymectomy patients don't show signs of improvement until at least 6 months, so I can understand his shock. He said at my next appointment I might be able to adjust my medication frequency and/or dosage. How exciting is that?
Seven month check-up
November 2021, 7 months post-op, I was feeling great! I returned back to work in June and hadn't worked since the pandemic hit. Mentally, I was feeling strong and so was my body.
I had another neurologist appointment. He was even more impressed with how much I've improved than at my follow-up appointment. These were all good signs. He then gave me some delightful news. I can go from taking Mestinon from 4 times a day to 3 times a day. That was amazing to hear.
One year post-op
Fast forward to May 2022, a whole year post surgery. Still feeling good, not many flare ups to write home about. Only 3 flare ups that did not last long within the whole year. I went from having symptoms daily, to 3 in a year.
I had another neurologist appointment and get more great news that not only can I go down to 2 times a day with my medication, but I am also going down in dosage as well. I was speechless.
Currently, I have been on 30 MG of Mestinon twice a day for 2 months. I'm feeling great and staying confident that I will keep improving.
Have you made any MG-friendly adaptations to your home?