Myasthenia Gravis News Forums Forums Healthcare and Treatments Did you have a thymoma? – Myasthenia gravis

  • Michelle

    June 4, 2023 at 4:00 pm

    I did have a thymoma which just “happened” to be found on a chest x-ray during a visit to the ER for MG symptoms.

    I had been diagnosed with MG about a year earlier. I asked my neurologist if we should look to see if there was a thymoma, she replied that it would not be necessary as they were very rare.

    I began developing severe MG symptoms and went to the ER having difficulty walking, seeing and having spasms in my arms. That is when the chest x-ray was done, although it wasn’t because of the MG. It was simply the routine followed for anyone at the ER potentially have a stroke.

    I was also told at one point that thymectomy should not be done for someone 60 or older. I was 61.

    Once the thymoma was found, I underwent all of the examination and preparation for surgery and had a thymectomy within 4 months.

    Since that time, my symptoms were reduced to only ocular myasthenia which has also subsided and I am now symptom free.

    • paul spychalski

      August 15, 2023 at 2:52 pm

      Was it a large tumor or just small spots? I was told by the VA doctor that I had small spots on my Thymus but it woulnd not “probable” cause MG?

  • Barbara A.

    June 7, 2023 at 2:42 pm

    At age 65, during a cardiac work up, a large thymoma was discovered on me. I underwent a robotic thymectomy, followed by radiation since it was invasive.  Approximately two months later I began having symptoms of myasthenia gravis. This was confirmed by the neurologist with positive anti-ACH levels. I have had moderate generalized myasthenia gravis for the past 3 years, and have been on steroids, Mestinon, IVIg, Imuran, Rituxan, but I am down to just Mestinon and Vyvgart infusions. I get yearly chest CT scans to check for recurrence of the tumor. So yes, you can get MG after removal of a thymoma.

  • Carrie McDade

    August 16, 2023 at 4:55 pm

    I had a 7.2 cm thymoma removed via robotic surgery through a 1 inch incision in August 2020. The thymoma ruptured while being removed, resulting in 27 chest radiation treatments. Thymectomy was not done, and is unable to be done now due to adhesions and scarring from the radiation.

    2 months after the thymoma was removed I was diagnosed with AcHR and MUSK positive generalized late onset MG. I was on prednisone for a year, very gradually weaning off. My MG symptoms have been mild, and I continue to take 60 mg Mestinon twice a day.

    • Debbie sandwra

      August 31, 2023 at 9:01 am

      I also had a thymectomy. Found it after my mg symptoms started and I diagnosed. It’s been over 3 years. Unfortunately the thymectomy did nothing to help my symptoms. I’ve tried every drug and infusion available. I’m now on weekly plasma exchange. And hoping for new drugs.

Log in to reply.