Has anyone here had a thymectomy because of their MG? I just had one on the 30th of september, and am finding it really hard to not excersize, but im a very active person. I know I can walk, as the doctor said, but its not enough for me and was wondering if anyone had any tips for it.
Im 17, and otherwise very healthy, but my MG was controling my life, I had days when my lungs would shut down, i couldnt even make it up the stairs or to brush my teeth at night. My legs would not even lift up when i needed them to at points because they were so fatiuged. Anyone else out there with these symptoms?

Thanks

First let me say welcome to the best place for support. You should take the time to read the postings here and you will learn a lot.

I was in my 20's when I had my thymectomy and like you I was very active, it takes time but you will be able to get around again. I went into remission for 17 years so there IS hope.

Read the posts and if you have any questions there are many here, including myself that can and will help you.

Hi there!...and welcome

Gald you found this site. Many here have had a thymectomy. And the group has a wide range of 'degree of severity' with their MG whether or not they have had a thymectomy.

It is very hard to restrict activity - especially at your age. But if you take it slow now, I'll bet it pays off big in time.

Sue

Hello and welcome to the group! It takes a long time to fully heal after a Thymectomy. When I had mine there was a man in the next ICU room who against his doctor's orders, lifted something heavy and snapped a wire in his chest. He had to have another surgery to have it repaired. So, my 'tip' to you would be listen to your doctor. Sounds like you are recovering nicely and already see improvements...good to hear. Be patient and you'll be back to your normal routine in no time. Take care and let us know how you're doing.

Hugs,
Pat

I had mine 14 months ago and I still am afraid I am going to snap a wire in my chest. I was talking to a chiropractor about this. He said by this point and with all of that wire holding it together it is stronger than it was before.

After my thymectomy, it took me a couple of weeks to be able to tolerate a walk of a few blocks. I currently don't do any strenuous exercise because I can't. I don't have the energy. I do go on walks, use the Wii Fit, and play catch with my daughter. This summer I did some long bike rides with my kids.

Good luck with your recovery.

You're 17 though and I hope you can get back to full speed.

I have the same heavy leg feeling you are describing. I sometimes felt as if I had no quadricep muscles. Now that I have been on CellCept for 3 months, my leg strength is coming back. After the bike rides my legs felt like jello, I had to walk up most hills and my legs could not support me after the ride.

Hello and WELCOME to the BESt site on the net for MG!

You are going to love it here!

You are too young to really have to deal with this awful disease.......but it sounds like you have GREAT outlook!

Please do not over do it! I was up and around 9 days after my thymectomy and quite frankly did waaaay too much...after that it was kind of downhill. I truly believe that my overdoing it set my remission back.

I was sick like you. I got to the point that I was bed bound for a month and had 3 "crisis" situations until I was admitted to the ICU for 8 days. It was awful!

On the positive side, there is ALWAYS a chance for remission! Always keep that in mind!

Can't wait to hear from you!

Erin

Thanks guys for letting me know that there are alot of people out there who have had a thymectomy. It is super tough at any age getting this rough disease, its truly tragic for those who get it to any degree, yet more so when it affects many parts of your body.

I'll definetly not lift heavy objects, the most ive done is my computer, which isnt 5 lbs. But ill keep that in mind at all times, i dont want to end up back in the hospital.

Though i do have an appointment with my surgeon at UNC on Tuesday which im sort of excited about, getting a chest x ray and seeing how i am healing. I havent been in the clear about going to school yet, and he thinks yet another week. making it 4 weeks out of school. Though im dealing.

I still have an airpocket around my lungs, which the chest tube was supposed to take out, though it didnt. Allowing me not to breathe that well, but its getting better. I had a catheter put in to drain the air my 5th day in the hospital, though it didnt take it all out. But it should soon disperse.

I had my surgery the 30th of september, and all went well, except for that minor complication. UNC is truly a wonderful hospital.

The hardest thing for me is dealing with holding back and taking it easy. I love hanging out with my friends, everyday. I was the varsity soccer captain at my school, and still am, yet i cant play. Its been hard, but im sort of dealing.
Other than that, im doing great.


Thanks everyone for your support!

Good luck with your appt. on Tuesday. It must be hard not being able to play soccer and hang out with your friends at school. You're young, otherwise healthy and strong. All these things will help you in your recovery. Just hang in there...we're all pulling for you.

Hugs,
Pat

UNC? Do you live in North Carolina? If so you have a neighbor here!

Welcome to the group!

I had a thymectomy on July 14th. It's definately good to hear that you're coping with the pain well- that's a very good sign! My surgeon told me not to do any heavy lifting for at least a couple of months, but maybe more depending on how I feel. He gave me an information pamphlet on activities that I could do. I'm pretty sure that swimming is safe after a couple of months, and as a matter of fact, I think that this activity would be great because it's low-impact and strengthens the upper body gently which I think might help with the pain. In terms of activities that mainly use the lower body, those should be okay, but with something where there's a lot of close contact (like soccer, football, etc.), you might want to be a bit careful for a bit. But you're young and it sounds like you were pretty active prior, so things should go much faster for you, which is great!

Recently, because summer was ending, we decided to take out the air conditioner. I took it out and didn't have any problems, although my mom was a bit worried. One thing I'd make sure of is that you're getting enough calcium and vitamin D to strengthen your bones so that when things do heal, they're nice and strong.

Good luck with everything!