Hi All,

My name is Pat and my 8 year old daughter Leah just had her thymectomy (transternal) on December 9th. She began having ocular MG symptoms last July, diagnosed in August, and we opted to go ahead with the thymectomy as Mestinon isn't doing all we need it to do.

She did so well I couldn't believe it! One thing they did with her to minimize the need for narcotics was an epidural in her upper back. It did seem to help her quite a bit. She had the surgery on a Tuesday, was walking around on Wednesday and released by Friday! Her scar is healing nicely, and they even cleared her to go back to school 6 days after surgery! (We opted to keep her home longer, though.)

One thing I do notice is that her eyes right now look WORSE than they did before. (It's 2 1/2 weeks post-op now.) I read somewhere that this can happen...it gets a little worse before symptoms improve. Has anyone else had that?

Her MG is primarily ocular, although she did have a few weeks of leg weakness back in September. Leah was adopted from China, and the shape of her eyes actually make the ptosis and diplopia look worse than it is. Unfortunately the normal folds of her eyelids can completely mask her iris, making her entire eye look white when she's having a bad MG day. She also has hypothyroidism and a growth hormone deficiency, but these don't seem to affect her other than the need for daily meds.

I can't speak from personal experience about the surgery, but from a mom's perspective it was much better than I could have imagined. I'm glad I found this forum!

Pat from upstate NY