Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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How did Thymectomy help you?

sachin89
sachin89

My Neurologist has diagnosed me with Myasthenia Gravis based on these symptoms.

1. Double vision, facial muscles around eyes feels lot of strain and fatigue as I use them more to counter diplopia.

2. Jaw fatigue after continuous chewing / talking

3. Throat feels slightly blocked after continuous swallowing

4. Neck fatigue upon some active work, feels like "I need to support the neck"

Test Results

1. RNS (Nerve Stimulation) negative.

2. AChR Antibody test negative.

3. MuSK and LRP4 Antibody test - awaiting results.

The contrast CT scan of chest shows an enlarged thymus (Thymic Hyperplasia). Doctor suggested to do thymectomy as it would help remission.

I would like to know if anyone has done thymectomy and if it helped in improving the condition.

Rhanson
Rhanson
That sure sounds like MG!
My thymus was normal for an older man (almost non-existent), so surgery wasn't an option. However if you thymus has problems, it certainly is suspect in MG. A big research trial over many years has just been completed. It says that three years after thymectomy, the average MG patient takes less prednisone (or other medications) than those who haven't had it.
Over the years, this has been discussed often on this forum. You can read what other folks have said by doing a google "site" search. Here is the results
https://www.google.com/search?q=thymectomy+site%3Adailystrength.org%2Fgroup%2Fmyasthenia-gravis&oq=thymectomy+site%3Adailystrength.org%2Fgroup%2Fmyasthenia-gravis&aqs=chrome..69i57.12496j0j7&sourceid=chrome&ie=UTF-8

Good Luck, Russ
megancortes
megancortes
i had a thymectomy last 2015 and it was actually the 2 year anniversary of my surgery last week. After my surgery my condition drastically improved over the months that i went from 50mg prednisone and 4 x a day mestinon to only 1 mestinon. But recently ive been having flare ups so after 2 years, i was back on prednisone and my mestinon is at 4 x a day again.

My neuro says that its normal though, a lot of his patients that had thymectomys experienced improvement after 3-5 years. He also said that he had a patient that only went on remission after 10 years. I guess it just depends on the person.
J_Allen87
J_Allen87
I was diagnosed with MG in Sept 2016 and had my thymectomy (full transternal) on March 7 2017- it was hyperplastic (enlarged). Before surgery I was getting worse and worse (MG was progressively getting bad) was taking Mestonin at my full dose and was almost about to start Prednisone but tried to hang tight till the surgery. I then had thymectomy and overall seem to be much better. Have to take the odd Mestonin here and there but overall doing well just under three months post-surg. I was so scared of the surgery but if there was a chance it would help, I needed to try (and did). At least it rules out my thymus gland growing even bigger and bigger and impacting areas around it.
nnyguy1960
nnyguy1960
I had my thymectomy 4 weeks ago so it is too early too tell how it is going to effect me. My surgeon did a full transsternal thymectomy to make sure he got it all out. He said he was very successful, and now we just need to see how it works out. My feeling is that my long term outlook will be better with the thymectomy. Whatever my condition ends up being, I believe it will be incrementaly better as a result of the surgery. I am very happy I chose to do it, but I am glad it is over.