Quote:
Originally Posted by Panorama
Samantha,
Did your CT Scan reveal a problem with the thymus? Was there a thymoma. What was the reason your doctors ordered the thymectomy?
How well did you handle the Prednisone?
-Mark-
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Well I didn't have a tumor, but I did have an extra growth of tissue and it was slightly enlarged according to my neurologist. They kept pushing for me to get the thymectomy because I am young and generally strong/healthy, but I kept saying no because I wanted to attempt getting the condition under control with just meds first and I was severly afraid of surgery. It was after my breathing crisis in 2012 and other mini scares that I decided to go ahead and do it. I'm glad I did, because I conquered a major fear of mine--but I just hope it pays off. I'm trying to stay positive about it. I know it takes time, but it's hard. I'm handling the Prednisone okay, but I'm only on 30mg daily. After my recent swallowing crisis in December 2013, they put me on low dose Immuran to see if that will work better than the Prednisone. None of us want me to stay on Prednisone forever d/t all the risks...I'm not such a fan of the Immuran either but I need to seek other options as the Prednisone alone doesn't seem to be cutting it. So we'll see. ://
Quote:
Originally Posted by southblues
I have read that thymectomy can be curative even in the absence of a tumor, especially in young people. It can, however, take a couple of years to work. I think that it takes that long for all the defective immune cells to die off.
It sucks to be so young and have this stuff. I am 56 years old and it sucks. It sucks worse if you are young. Your chances of improving from your surgery are much better than mine would be if I had the same surgery.
This is a good place to learn stuff and to talk.
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Hello there. The waiting is the hardest part! To see whether or not the surgery worked, I mean. I'm trying to do more than just wait by making sure I'm staying well rested, healthy, etc etc so as to maximize my immune system and my chances; and by extension, my life. I hope this works. It makes sense that it could take that long for the cells to die off; do you think there is research on this? My husband gets frustrated b/c he'll state the surgery was supposed to work, and I start to feel the same way as well. It's had for us to remember that it's going to take a while. It's all still so new in so many ways. I do agree, it does suck a lot. It may suck now, but I worry about how I'll be when I get older because aging is complicated in and of itself. I'll do anything I can to optimize my chances while I still can. :/