Debbie210
4 posts
Jun 30, 2009
8:04 AM
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Hi everyone. I just wanted to know if anyone has a success story regarding his/her Thymectomy. They say there's an 80% chance of full recovery over a period of 8-12 months. I'm curious if anyone has experienced this, if so, can you tell me your story.
I am due to have a Thymectomy in a few weeks and I would love to hear from anyone who's had the operation.
Thanks
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sally1louiselouise
771 posts
Jun 30, 2009
8:33 AM
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Hi Debbie, I had a thymectomy in August 2005, after suffering a a very bad MG crisis, which needed intubation in ICU for 17 days.(this occured only two weeks after diagnosis of MG). I received Iv/Ig duing that time and was very closely monitored and very well cared for. I would say I am a success story for a thymectomy, I have been steroid free for two years, I still take Mestinon and Azathiaprine, I am asymptomatic with the meds, I have an (insignigficant) ptosis of the left eyelid(neurologists description of it) but I am doing very well at the moment, I don't class myself as being in remission but I have had an excellent quality of life and have been virtually symptom free since the thymectomy. Everyone though is different in their responses to meds and surgery, this is just my experience. This has been discussed many times on this forum and you will find very many posts and histories on here. SALLY
---------- Margaret
South Wales
UK
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JanS
24 posts
Jun 30, 2009
11:17 PM
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I had a Thymectomy within months of my diagnosis of MG in 1991 and after the surgery and healing I was able to go off all medications. I was in what I feel was close to remission for almost 17 years. I did have some symptoms, weakness and double vision but didn't need meds. Before the surgery, I couldn't hold my head up. But just recently my MG became active again and I am working on balancing meds and activity all over again. But I am not nearly as bad as I was before the thymectomy. So I would say it helped me tremendously.
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gerry
72 posts
Jul 01, 2009
5:07 AM
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Hi Debbie My son had a thymectomy in November 2007 aged 13. He was told it can take up to 2 years to see the full effect of the operation, but he was also told that there is only a 30% chance of the operation being a success. for him within 6 months he had reduced his mestinon. Today he takes no medication at all. Most of the time he is sympton free. On the odd occassion he has a droopy eyelid but this has only been during the hot weather. i keep my fingers crossed that he is a successful case and hope that he will continue to be medication free for a long time to come. Gerry
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