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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OCMomma 07/30/2019

I am a newly diagnosed 41 yr old with antibody positive MG. I do not have a thymoma and my symptoms have been mainly ocular with some weakness in my face and jaw as well. I have decided, after discussions with my dr and reading the research, that I will get the thymectomy done. I feel like it is worth the relatively minor risks involved with the surgery. The hope is that I will then be able to taper off prednisone (30 mg a day right now) and keep any further flare-ups away. Has anyone had a left side VATS thymectomy? How was your recovery? Did your symptoms improve?

Rhanson 07/30/2019

Hi, Welcome to the group!
Many discussions have been held in this group about thymectomy for MG. Recent research says that it does help some folks cut down on prednisone and some go into remission. As you have decided to have it done, you can search our site for VATS and find out more. Just click the link below to get a list of discussions with VATS included.

https://www.google.com/search?safe=strict&rlz=1CAPPDO_enUS760US760&ei=SoRAXaO9I6CD9PwPrJuqwA8&q=myasthenia+vats+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&oq=myasthenia+vats+site%3Ahttps%3A%2F%2Fwww.dailystrength.org%2F&gs_l=psy-ab.3...6150.9510..11558...0.0..0.101.1079.9j2......0....1..gws-wiz.s9qjbsLv6mQ&ved=0ahUKEwijiuyUm93jAhWgAZ0JHayNCvgQ4dUDCAo&uact=5

The link above is the result of a "site search" of dailystrength
I typed this line into my browser search window without the quotes

"myasthenia vats site:https://www.dailystrength.org/" (everything in quotes) and it searches the whole site back to 2009 or so for a topic, The dailystrength built in search is not very complete.

Good Luck
Russ

Alton 08/20/2019

I had a sternal Thymectomy last November I am doing well almost off all my medicine!
I was 63 yers old when my MG flared up took 3 months to be diagnosed!
Drove 4 hours to University of Kansas medical center
Where they were awesome!
I was not a candidate for the non invasive surgery!
Well worth the risk!!!

Alton 08/20/2019

Myasthenia Gravis
In myasthenia gravis, surgery to remove thymus gland provides benefits even years later

OCMomma 08/20/2019

Thanks for sharing your experience, Alton. I had searched for past topics as Rhanson suggested, but the ones I found were all quite old and as they make more advances in surgery I figured it’d be good to here something more recent. I am now a week post op from a robotic VATS thymectomy. I am healing well and so happy I didn’t have to do a sternectomy. I went to NY Presbyterian/Weill Cornell in Manhattan and they were amazing. I’m sorry to hear you weren’t a candidate for the less invasive surgery but I’m glad to hear you’re doing well. My neurologist has already started tapering me off prednisone so I’ll just have to wait and see how it goes. Fingers crossed.

Rhanson 08/20/2019

Great that the surgery went well!
Good Luck
Russ

PeterL 08/20/2019

Good to hear all went well. More to the point have confirmation that it was indeed beneficial to a patient with MG.

Peter

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