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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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Member
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Can you get a biopsy of your thymus tissue done (or have you)? find out if you have hyper-plastia? My understanding is that unless the thymus is hyper-plastic you'll not see any improvement from a thymectomy.
Brian. |
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#2 | ||
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Senior Member
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I thought thymic hyperplasia was something the CT-scan could reveal.
Abby |
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#3 | ||
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Member
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Quote:
http://chestjournal.chestpubs.org/co...3/847.full.pdf Brian Last edited by Brennan068; 05-29-2012 at 12:29 PM. Reason: added link |
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"Thanks for this!" says: | Stellatum (05-29-2012) |
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#4 | ||
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Junior Member
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Very tuff decision to make. I had a Thymoma removed in '94 and again in '99 both split sternum and I can tell you it's no fun. At the time I did not have MG so removal had no affect on me, I ended up with MG anyway. Unless your symptoms are quite severe you might want to just let it be. Robotic removal though is less invasive and might be worth a shot. Tuff choices.
Al |
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"Thanks for this!" says: | Stellatum (05-29-2012) |
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#5 | ||
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Grand Magnate
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Abby, I don't think any of us can say one way or the other. There's so much more to consider than your MG. Surgery is very stressful on the body. Some people can get another AI after it.
Do you have enough support for the recovery time it takes? I could point to this study or that one but the fact is that there is no definitive answer to whether or not a thymectomy will help. Most studies do say that a thymectomy in someone younger and done within the first year of the disease tends to be more successful. I know you want to get better but at what cost? Only you can answer that. Good luck with the decision. Annie |
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#6 | ||
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Senior Member
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Tricky decision. My husband is a high school teacher, so he's home in the summer, so now would be the time. These decisions are so hard to make. In the end, it's a gamble. I'm almost at three years, and I'm 46. Those are not in my favor. But I'm female, which is, and my symptoms are relatively mild. My doctor says he doesn't have an info on the effect of thymectomy on atypical MG, and he seemed to think that's relevant info. On top of it all, I'm still questioning my diagnosis. Brother.
Thanks for responding. Abby Quote:
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#7 | ||
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Junior Member
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I had my CT scan the 2nd week in November at which time my thymus was "mildly hyperplastic", but apparently big enough to have it removed. At that time I was only 3 weeks post 1st ocular symptom. When it was removed transternally on December 20th, it was 4 1/2" by 4 1/2". I would assume that it didn't grow that much in a month, it's just that the scans are not always accurate. As for pain, yes it hurt, but the painkillers did their job to make it manageable. The worst part was not sleeping on my side for 10 weeks. One month after surgery my ocular symptoms went away, and I stopped the mestinon about 2 months later.
I was 50 at the time of surgery and I'm female. Oh and the CT scan showed no thymoma as did pathology report after the surgery. Get a 2nd or 3rd opinion??? My surgeon wouldn't have done the robotic anyway, doesn't like it because he doesn't know how big and involved the thymus is until he gets in there. I would say go for it if 2nd opinion Dr okays it. |
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"Thanks for this!" says: | Bipedal Primate (04-03-2014), Stellatum (05-30-2012) |
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