Well crew looks like I'm getting railroad tracks / zipper: radical thymectomy on Tuesday.

Anyone gone thru it and have advice?

I had my done in 2005 - same approach. Just take it easy and don't expect miracles. You mentioned Tordal in your other post - it is given IV and is really an amped up aspirin. I get it before an IVIG treatment as a pre-treatment to prevent a headache and it does work for that!

They will probably also give you steriods during and after the surgery to help with the swelling. They used an IV version and I can't remember the name right now. Once the pain abated pretty much (3 days for me), I had a lot of energy (for me) and I mentioned it to the ICU nurse - she told me it was probably the steriod I was receiving - and she was right!

You will probably be in ICU because they will want to keep a close watch on your breathing and overall strength. Just take it easy - this too will pass!

Haven't been through it, but you'll be in my thoughts and prayers!

I wish you the best of luck.

I am sure that your sense of humor and the support of your family will help you get through this and back to yourself.

But, do give yourself time to heal.

Keep us posted.

Alice

Make good friends with your "heart pillow" Coughing without it *hurts*.

Make sure your anesthetist knows you have MG - there's an order to the cocktail they give you to put you out if you get it in the wrong order it is quite unpleasant. There are muscle relaxants included in the cocktail, if they know you have MG they'll send those in after your out rather than before (I was put out for a different procedure before my thymectomy and they had the order reversed... felt like I was drowning.)

If you're hooked up to a patient controlled pain management system, don't wait until it hurts before you press the button. Keep your pain as well managed as possible during post-op.

Follow the orders regarding lifting/moving stuff, you don't want to knock your sternum out of alignment while it is stitching.

Get a wedge or something similar... you'll want to sleep propped up at least partially for a while when you're healing.

I really hope your surgery goes well. I haven't had it done.

One thing they might want to consider to intubate is Sevoflurane. They may not need to use a muscle relaxer with that. It all depends upon the anesthesiologist. With all of your complications, I sure hope they are careful and ready for any "what ifs."

http://www.mayoclinic.com/health/dru...ation/DR601235

Well, if you are "plated" then they can give you a letter saying so to bring with you on any airplane flights! Yeah, you'd set off the alarms for sure.

Brian gave you good advice. Like Juanitad said, communicating with the nurses and doctors really helps to make your stay a good one.

Be cautious with the pain meds. Some are hard to withdraw from.

I really hope it goes well for you! Lots of TLC, rest and good food helps too. Laughter helps but it won't help your stitches for the first few weeks.

Annie

Do they mostly only do it on young people? I'm 50 and wondering if it's an option or something I should try and push for. I do not have a tumor but do have residual thymic tissue. I'm getting desperate for some quality of life.

Good luck to you! I'll be praying.

Ravenred,
My thymectomy surgery was July 2010. The surgery was a partial upper sternotomy, no complications, no tumor(just hyperplasia) and I was out of the hospital the following day. I'm not going to lie, that first week was the most pain I've ever experienced in my life. You don't realize that you use your chest for every move your body makes. At the hospital they should give you a small pillow, carry it with you everywhere, hug it to your chest when you cough or sneeze. I went back to work after a month and that was probably too soon. Definitely no driving for 3 weeks.
Let me know if you have any more concerns or questions and I"ll try to help!

Tracy,

There are different methods of performing a thymectomy and if they're not going in to remove a tumour there's no reason to break the sternum. There are minimally invasive techniques that result in a very small scar and quite quick healing. I think that you should at least discuss with your neurologist. Here's some light reading... http://chestjournal.chestpubs.org/co...28/5/3454.full

You can also google "thymectomy techniques" for a few more days worth of reading

Just so you know, it is not a guarantee for reduction in MG symptoms. From my understanding reduction in symptoms are only seen if your thymus is hyperplastic.

My thymectomy was for cancer so this wasn't even a point of consideration for me.

Hi! This is Tinna ...... I am hopeful that someone has had this type of surgery and is able to give me some info. What meds did u take, recovery time, and any other info. This would really be helpful!!!


Thank-you!!!