Myasthenia Gravis Support Group

I'm 20 years old and I was recently diagnosed with myasthenia gravis. I take 60mg of mestinon every 4 hours and 20mg of prednisone once a day. It seems to be controlling my symptoms fairly well, I only have occasional trouble, typically towards the end of the day. My doctor recommended that I look into getting a thymectomy in the near future (within the next few months to a year). I don't have a thymoma but he said that the surgery may be beneficial anyways. I plan on having the surgery but I'm having difficulty deciding which procedure to have done. Does anyone have any recommendations about the different types of procedures and whether the more invasive ones are any more effective? Also, how much time should I have set aside to get this done? I only have a 3 week break for Christmas (I'm an undergrad at Georgetown). Would that be enough time for the pre-surgery procedures and recovery?

Hello CnyPumpkin, I see that you've chosen to opt for a thymectomy--congratulations! While it may not be for everyone, I am a proponent of this procedure. It's confusing because there are so many labels for the thymectomy, so I'll give you the basics and you can investigate from there. It's my belief that every MGer needs to be aware of the worst and best case scenarios of this condition.

Generally speaking...

The Transsternal Thymectomy continues to be the favoured method at this time likely because this method has been used for over 70ish years and, the surgeon is able to see every discernible piece of tissue. You'll see that it is invasive.

Coming in second (but getting closer) statistically speaking, is the Video-Assisted Thymectomy (VATS) which is "said to be" far less invasive.

Whether one is more 'effective' than the other is still open to debate--there are so many variables.

The concensus is the younger (not including children) the better, and the sooner post-diagnosis the better.

As to recovery time, I can't speak to that because we are all different. You'll be talking to the surgeon and he or she might be able to tell you their patients' average recovery time. The expectation of recovering within a three week time frame may put a great deal of stress on you because that is a rather short period of time, however, anything is possible.

There are a good number of students on the forum so I hope you'll hear from them. Welcome to the forum...

Post edited by: MGCanada, at: 07/15/2011 06:49 PM

Hi CnyPumpkin. I've found that most of the people on the forum have had a thymectomy shortly after they've been diagnosed with MG. You will probably get a lot of good feedback on this.(and MGCanada did a nice job of explaining the various procedures). I was diagnosed with MG 6yrs ago and really procrastinated on having the thymectomy. Fear of the unknown. I had the Transsternal procedure, which is invasive but I believe it's the only method that enables the surgeon to remove all of the thymus tissue. Recovery time for me was about 8 wks. My symptoms were a little worse after the surgery but eventually things got better. Symptoms decreased, medicine decreased, and now I'm still on some meds but no symptoms for several months. I was also a full-time student and worked part-time when I had this done between semesters-not a good idea. (note: also much older than you)If you can, clear your calander for at least six wks after the surgery. As you've probably already found out, rest is crucial to relieving the symptoms of Myasthenia.

Thank you for the advice. I'm hoping that one type of procedure will start to make better sense for me as I research more. Timing seems to be the critical decision that needs to be made at this point and honestly, the best timing for me seems to be never! I'm juggling whether to take a semester off of college (which I would REALLY rather avoid doing) or to put the surgery off another year til next summer (which was not recommended by the first cardiothoracic surgeon I saw). Does anyone have a suggestion about finding surgeons who specialize in thymectomies or minimally invasive thoracic surgery? I'm having some trouble locating any specialists.

Not sure what you have for ins. coverage but when I was shopping for a surgeon I found a group of surgeons at the University of Maryland that also has a neurologist on staff that specializes in MG. It's been a while,but I was impressed when I researched them. I scheduled a consult w/them but my ins. wouldn't cover anything out of state. I no longer have that info but I'm sure you could Google them. Good Luck.