Still thinking about thyectomy
 

Hi everyone..I been diagnosed with MG for about 5 yrs now and still trying to decide weather to get a thyectomy done. Im thankful for sites like this one...I feel better when I read about other ppl. with the same problems I have. My doc has suggested the surgery a few times now. Im on mestinon (prob. spelled that wrong) 60 mg every 4 hrs and he wants me to start takeing steroids (which I hear horror stories about). Ive had to make some tough decisions in my life but this one tops them all. Im a wife and a mother of 2. My kids are teenagers but still depend on me alot. I want to get better, and the surgery may do just that, although the recovery worries me, like I said...my kids depend on me. I have a very supportive husband who will help and its not like my kids are toddlers but Im so used to "taking care of things". As far as the surgery itself scares me to pieces, everthing about it...being put to sleep, the pain, my chest being split open, will it work, what will change after its done. Ive put a post on another site (which brought me to this one) and ppl were very helpful. Thanks for any info!

I say do it.
 

Thymectomy surgery has come a long way - not everyone has to have their chest split open. They can now do it microscopically for some cases. Unfortunately for me that wasn't an option.

I just had an appt with a new (for me), REALLY knowlegable neuro that lists MG as a specialty (very rare) because I have flared up. She doesn't seem to think the thymectomy got me to remission but she told me the stats. 30% get no relief from the surgery, 30% go into remission and the rest are at least able to be maintained on lower doses of medication which she believes is the group I fit into.

I had about a year with no medication at all and was able to return to full time work, until something triggered me again in January this year.

That tells me that there is a 60% chance of you at least getting some benefit from the surgery, and if they can do the less invasive form on you, there would be no question in my mind that you should do it.

Check online for the different options and which situations require which form of surgery. You didn't mention what condition your thymus is in, but I know that's one of the factors they look at.

Lots of luck to you. It sounds like you are at the same stage of life I was in when MG first showed it's ugly head to me! :hug:

I did it and am glad that I did!
 

Hello there! From the time of my dx to my surgery - one month - I was scared.........they had to split me open to get my thymus out, but realized I had a life to live and a family to take of so I did it!!!!!

Granted, it was the toughest decision of my life, but well worth it in my opinion.

If you have any questions, please feel free to email me @ erinhermes@hotmail.com or pm me .......

Hang in there! It does get better!
Erin:D

Do it, I have.
 

:grouphug: Do the surgery. I too was a mother of 2 sons when I decided to have the surgery and I am so glad I did. I went into remission for over 15 years. I was able to not only watch my sons grow into men but be a part of them growing up and being able to BE involved, go running, going to their graduations, wedding.. all of it and NOT be so weak I felt I was holding them back. Good luck with what you decide and know there are many out there in your shoes.

Make sure you have a great surgeon!
 

Hey there! If you DO decide to do it, just make sure you have a great surgeon! Thymectomies are pretty rare and you want to make sure you have the best of the best!

Big hugs!
Erin:D

Forgot something......
 

One of the reasons I had the transsternal was that if the surgeon misses anything, they have to go back in..............

Erin:D

Don't do it!
 

Stop thinking! Don't do it. Don't even consider it. Get your doc to give you some massive doses of prednisone and your symptoms will be miles behind you! I know, I've been there. And, we ARE ALL THE SAME, as MG sufferers, contrary to what the docs or people around these hallowed halls of wisdom will tell you. They wil say we are all different in our respponse to the drugs. They are wrong.