Thanks Erin and Deb. It is so comforting to know that there are others who have gone through this successfully. I'm slowly accepting that I must have this surgery. But the thought of having my chest cracked open is still a frightening thought!! I am thankful that I have a close knit group of family and friends who will support me through this ordeal. I keep telling myself that if you all can get through it, I can too! How were those days in the hospital? How did you feel when you first woke up after the surgery??

Hi Nickle -
I had my thymectomy a few years ago - Sternotomy... I was in ICU three days -then a regular unit for a day or so - Once I came home my sisters took turns staying with me and my daughter who was 12 at the time. The surgeon told me that I could not lift anything heavier than my shoes for the first week - then I couldn't lift anything heavier than a gallon of milk - then 10 pounds, 20 pounds and then back to normal.

I would suggest that you talk to your neurologist about getting IVIg before the surgery so that you go into surgery strong and at your best - they did that for me and I did not have any difficulties following surgery with weakness other than that related to the actual surgery. I did not feel miraculously better and it was uncomfortable to sleep for a long time but in retrospect I think it has decreased my overall weakness. They were quite clear with me that thymectomies do not always work quickly and benefits can be seen as far out as ten years after the surgery. I have a long thin scar that is fading with time - but as far as I was concerned the scar was the least of it!

Ask questions of the neurologist - read as much as you can so you are making an informed decision. Good luck!
Gabrielle

Nickel5, Sorry for taking so long to post. I had the same feelings as you before the procedure. Yes, it really does sound bad when the doctors want to open your chest and yes it does hurt but it is not that bad. Really, you will be able to walk a few days out of the hospital and the pain can be managed. When I first awoke from the surgery I really don't remember too much but I was on pain meds that I really did not feel a thing until the next day. But remember they will control your pain with meds just tell your providers. My week in the hospital was not bad except I don't really care for hospitals and it was hard to sleep with all of the monitoring by the providers. Keep the questions coming. I think in the latest person on the forum with a full Thymectomy (2+ weeks and counting)??

I think you're right, you'd be the most recent thymectomy survivor on the comm USMC. Mine was in May.

Did they do the full or partial sternotomy on you? As I recall, they were planning partial and going for full if they saw problems that'd require additional cutting...

How're your little ones dealing with your incapacitation?

Cheers,

Brian

WEll, when I first woke up it hurt like heck! I think I was getting morphine every 5-10 mins or so - but don't remember much in the recovery room - only that I awoke to find my neuro holding my hand - it was very comforting!

Trust me, the pain will pass pretty quickly! You'll need to take it ez for a while, but I know how awful it is to feel helpless (due to MG) and soon you will be feeling GREAT!!!!

You may also want to ask about IV IG b/4 your operation - I had mine for 5 days straight b/4 my surgery - just to keep my strength up!

I was operated on April 22nd and was released April 27th. I was albe to have my niece's birthday party on May 3. I was feeling rough, but it worked out OK!!!

I know how scared you are right now. It's really going to be OK! Your neuro wouldn't recommend this surgery unless he/she thought it would help you!

I was scared out of my mind b/4 my surgery! I sweated through my sheets and cried like a baby, but it all worked out!

If you need to talk anytime, let meknow!!!

Erin

Brennan068, I had the full sternotomy. Just before I went in the DR felt that was the best approach. I have two little girls 4 and 7 months and they are dealing with it well. We had to show my 4 year old the scar and she understands. But I am able to open gifts and play game with them. I just carry them around or pick up heavy stuff. But so far so good. I feel much better than before but not back to normal.

Yeah, 2 weeks is a little soon to be back to normal Glad you're coming along though. I was about 4 to 5 weeks before I started really cheating on my weight restrictions and not waiting on others to open or close my car door for me. I did wait for the full 6 weeks before carrying full grocery loads though.

I was entertaining and carrying platters or meat and grilling.......................May 3rd - surgery April 22nd

I was an IDIOT!!!!! My family was down, so it was great!!!!! I did have one episode after it where Iwas unable to walk and had to sit down and take my liquid mestinon, but felt fine after that!!!!

It does get better! Sleep upright and carry your pillow EVERYWHERE!
Keep it clutched to your chest - it really helps!!!!

Erin

Hi All,

My name is Pat and my 8 year old daughter Leah just had her thymectomy (transternal) on December 9th. She began having ocular MG symptoms last July, diagnosed in August, and we opted to go ahead with the thymectomy as Mestinon isn't doing all we need it to do.

She did so well I couldn't believe it! One thing they did with her to minimize the need for narcotics was an epidural in her upper back. It did seem to help her quite a bit. She had the surgery on a Tuesday, was walking around on Wednesday and released by Friday! Her scar is healing nicely, and they even cleared her to go back to school 6 days after surgery! (We opted to keep her home longer, though.)

One thing I do notice is that her eyes right now look WORSE than they did before. (It's 2 1/2 weeks post-op now.) I read somewhere that this can happen...it gets a little worse before symptoms improve. Has anyone else had that?

Her MG is primarily ocular, although she did have a few weeks of leg weakness back in September. Leah was adopted from China, and the shape of her eyes actually make the ptosis and diplopia look worse than it is. Unfortunately the normal folds of her eyelids can completely mask her iris, making her entire eye look white when she's having a bad MG day. She also has hypothyroidism and a growth hormone deficiency, but these don't seem to affect her other than the need for daily meds.

I can't speak from personal experience about the surgery, but from a mom's perspective it was much better than I could have imagined. I'm glad I found this forum!

Pat from upstate NY

Please be aware that the thymectomy, in reality, only works in a small percentage of patients. It's unrealistic to think there would be any improvement at this point.

I do, however, think the little ones do stand the best chance for recovery. I hope very much that little Leah is one of those.

Missy