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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Grand Magnate
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Perrym, Wow, that must've been hard to hear that you have a tumor. I'm sorry you are dealing with this.
In some people, when the tumor is removed, the MG goes away. Although, there have only been a few incidents of that recorded. I hope you are consulting with a hematologist/oncologist, too, about all of this, and coming up with a post-surgical protocol. You might need some sort of radiation or chemo. They have to biopsy the tumor first, though, and "stage" it. http://www.jthoracdis.com/article/view/890/html I hope you have a good support system. This is a lot to take in! Hey, you have MG. Hey, you have a tumor. Geez. What else can we do to help? Are you confident in your knowledge of MG? I did not have the thymectomy, so I can't help you there. Obviously, when there is a tumor, they often want to split you open! ![]() http://onlinelibrary.wiley.com/doi/1...nticated=false http://www.nmh.org/nm/chest-treatments-thymectomy I hope that the surgery goes really well, and that your recovery is quick. There are a lot of past posts on thymectomies here, and a lot of great advice from everyone on them. ![]() Annie |
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#2 | ||
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Junior Member
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Thanks for the replies. I have an appointment with a surgeon Wednesday. I plan on asking expected tiime for hospital stay, recovery. Also how many thymectomies he has preformed. Anything else I should ask?
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#3 | |||
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Member
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I had the full "split your chest open" (sounds gross doesn't it - but I can never remember the correct name!) to remove my thymus in 2005. I had a malignant tumor and was glad I had it done that way. It wasn't any fun, but it wasn't the worst thing I've ever gone through either. My mg affects my breathing quite a bit so I was in ICU for about 4 days after surgery and in a regular room for a couple more days. I was out of work for 8 weeks, but probably could have gone back at 6 if I hadn't been going through radiation. Didn't have to have chemo because they got clean margins when they removed the thymus which is the greatest benefit of having the full surgery, especially when you have a tumor!
I used pain meds for about 2 weeks, but was fine after that. The hardest thing was raising up from a lying position because until the bones knit completely, they kinda rubbed on each other. Again, nothing I couldn't handle, just a different feeling. When you talk to surgeon, I advise asking a lot of questions. My surgeon was mainly a heart surgeon and I don't think he had ever removed a thymus. However, he did a good job and I am fine today. I never did go into remission, but at my age (55 at time of surgery), I didn't really expect to. My understanding is that the younger you are when you have the surgery, the better chance of remission. However, I was in a fast downward slide with the mg when I had the surgery, and I am doing much better today, 9 years later. Good luck with your decision. Juanita |
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#4 | ||
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Junior Member
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Thank you all for the replies and support. My wife is more worried than I am especially when she found out about splitting my chest. We also care for my Mom who has dementia but my best friend for close to 30 years said he will rally the troops to give what ever support we need.
Thanks, Perry |
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#5 | |||
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Member
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Ask about his surgical approach he will take and expected treatments ans medications afterwards.
Good luck kathie |
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