[rezmommy]

I am newly diagnosed and am trying to get as much information about the surgery before I make a decision. I am thinking that it has to help a little anyways right? Has anyone had an experience where it made things worse?
Thanks for any input.

[erinhermes]

Well, I waited to see if anyone would comment on this and since no one has yet, I thought I'd put in my 5 cents worth...........

I also had a thymectomy right after I was diagnosed and for me I think it was the right decision. My antibody level was @ 600 when I was diagnosed and after my thymectomy, it went down a bit. Granted, I am still 7 months out from mine, but I was told it was my last, best chance at regaining my "former" life so I went for it. It hurt like heck and I was scared all the time after the surgery, but the pain did go away and so did the scar.

A girl in my support group has hers out and has been in remission for 11 years! 11 years! I am happy for her and jealous at the same time!

You never know. You may be one of the lucky ones and having your thymus removed may put you into permanent remission.

Whatever you decide, please know that I will be thinking about you and praying for you! Hang in there and let us know what you decide!

Erin

Originally Posted by rezmommy

I am newly diagnosed and am trying to get as much information about the surgery before I make a decision. I am thinking that it has to help a little anyways right? Has anyone had an experience where it made things worse?
Thanks for any input.

[erinhermes]

Hopefully others will come forward and share their experiences. I thought I was one of the few that had my thymus removed, but it seems like everyone on this site has had theirs removed, so there is a lot of experience and knowledge out there!
Erin

[MissyGirl]

I got markedly worse after mine. Turns out, years later I discovered I have MuSK MG, and thymectomy isn't really indicated for us.... sigh. I will add, too, that a couple of years after the thymectomy, I did become symptom free, altho I was on several meds. That lasted 2.5 years. Just recently, I've had a vast improvement in my symptoms and I'm cautiously hopeful that maybe another "symptom free phase" is on the way. Time will tell.

Erin, that woman with 11 years remission? Is she med free?

Missy

[erinhermes]

Oh Missy! I am so glad to hear that you are feeling better! That is wonderful!!!!

This may sound dumb, but how many people have the MuSK MG? It was really scary when the NURSES in the ICU didn't know about it! What the heck?!? I couldn't believe people in the medical community had no idea what I was talking about - in fact they looked @ me like I was crazy!

Yep, the girl claims to be drug free- no steroids, nothing! I know it sounds petty, but I'm still jealous b/c I haven't been quite so lucky! Stupid, huh?

ERin

Originally Posted by MissyGirl

I got markedly worse after mine. Turns out, years later I discovered I have MuSK MG, and thymectomy isn't really indicated for us.... sigh. I will add, too, that a couple of years after the thymectomy, I did become symptom free, altho I was on several meds. That lasted 2.5 years. Just recently, I've had a vast improvement in my symptoms and I'm cautiously hopeful that maybe another "symptom free phase" is on the way. Time will tell.

Erin, that woman with 11 years remission? Is she med free?

Missy

[MissyGirl]

LOL, Heck, I wouldn't be jealous of her. Eleven years with drug free remission and she still goes to meetings??? That girl has no life!!!!