Thymectomy at Walter Reed...advise???
 

I am scheduled for a Thymectomy on the 5th of December at Walter Reed Army Hospital. Does anyone have any advise??? Or things I should before and after the procedure. Background: I first diagnosed with generalized MG in 2000 and was able to control it with meds and when into remission for several years. Over the past three years my out breaks increased in frequency. Well after returning home from my last deployment my MG became uncontrollable with medication and finally I decided on the thymectomy.

Do you know how your surgeon plans to perform the thymectomy? There're 4 general approaches that I'm aware of ( http://www.umm.edu/mg/surgery.htm ) and any advice provided would be different depending on how they perform the procedure...

Hello!
 

Hello and welcome! You will love this site! Everyone here has been so amazing and supportive!:D

I am 34 yrs old and had my thymectomy done 1 month after I was diagnosed. It was a transsternal thymectomy b/c there were hundreds of "spots" on my lungs and they needed a biopsy to rule out cancer, etc.

I won't lie to you. It really hurt. Really, really hurt. My thymus was not abnormal @ all - if anything, it was really small - no thymoma @ all, but I was told by all of my docs that this was the last best chance @ regaining my formal life, so I did it!:D

A girl in my support group here in SA had hers done and has been in remission ever since - 11 years and counting! I have not been quite so lucky, but am still glad I did everything humanly possible to help myself.........

I still take meds every day (20+ pills) and need IV IG every 3-4 months, but the QUALITY of my life has gone through the roof! :D

I am now able to work most days and have been decorating my home for the holidays.

I don't know if this helped @ all, but am wishing you all the best and would love to hear from you when you have some time!!!

Erin

Thymectomy at Walter Reed...
 

Sorry forgot to mention the approach. Partial Sternotomy and Full if he sees or suspected thymoma.

Sorry about all of the type O's. I have my eye-patch on now. LOL. :) Thanks all.

When you have some time..........
 

Hello again!

When you have some time and the inclination, I'd love to hear your story.

As you know, we all have different symptoms, problems, etc. and I would love to hear what's been going on with you!!!!

Hang in there and take care!!!

Have a wonderful Thanksgiving!

Erin

Best advice I can give you is:

Get any heavy lifting you need to do for the next few months done now.

I had full sternotomy (I had a 9cm/3.5" thymoma) in May. I was not allowed to lift/pull/push anything greater than 5lbs for 6 weeks and then was allowed to gradually increase weight. A car door is too heavy, you'll need someone to open the door for you (I cheated after the first week and just used my feet/legs for moving the door). Mall doors are too heavy, you'll need to use the auto-open or have someone open the door for you. Partial sternotomy may have less stringent rules with respect to weight limits etc.

They will probably provide you with a heart pillow (open heart surgery is done through full sternotomy too) - always keep that within easy reach. You will cough. If you don't have the pillow to hug and stabilize your sternum it will hurt.

Did you have any specific questions?

Cheers,

Brian

Amen to that!
 

Brian is right on! You will not be able to lift anything for a good long while!

THe pain is awful, but it does go away in time.......right after my surgery, I was going through 6-7 pain pills a DAY - a DAY - for a few weeks and even asked to have another x ray to make sure I was OK. My surgeon was great, but he did set my chest a little "off" so it does hurt a little sometimes.

You will really need that pillow! I slept in an upright position for 3 months after my surgery and still do from time to time. Hold that little pillow to your chest all the time and you will feel better very soon............:D

You will really need to rest and the hospital will want you to cough to make sure you are able to get any phlegm up (to avoid pneumonia) and they will amke you do breathing exercises 4-5 times a day, plus you will get shots in your tummy to insure you don;t get any blood clots. Any shortness of breath needs to be reported immediately!!!!!!

The chest tubes do "sting" a bit when they are removed and you may be intubated just to make sure you can breathe and you may have IV IG b/4 your surgery - kind of a make ready.................

Hang in there! People have gone into remission after they have their thymuses removed. I pray you are one of them!

Erin

Take care!
Erin

Hi and welcome,

yep I also agree with what Brian said. I think the only thing I can add is keep up the pain killers. My nurses told me to keep up paracetamol for a couple of weeks, which I did, I tried to stop it after a couple of days, but the pain started again. They certainly helped keep the pain at bay, not stop it completely tho. Hope this helps a little, and if you think of any specific questions I'm sure one of us can help
take care
redtail

Thanks for all of the good information. I didn't know about the heart pillow. I already have a BedLounger pillow with arms so I'll be able to sleep sitting up. Here is my story....I've been in the Marine Corps for 21.5 years, and I first developed MG back in 2000. Previously, each time I would have a bout with it, I've been given prednisone, gain 20 pounds, then spend the rest of the year trying to get back to the Marine Corps weight standards for my height. The last time I've been on prednisone was this summer, and I stopped taking it in July. In late August, early September, I began having symptoms again, this time worse than ever, with really bad muscle weakness and double vision constantly. I got a new neuro and I've been given mestinon. I'm having to take anywhere between 2-4 60mg pills every 2 to 3 hours. I'm 6'2" and 235lbs. The mestinon is having the results of baby tylenol for me--its not doing a darn thing. And I have a 4 year old daughter and 6 month old daughter, plus my wife of 17 years. I am worried about how I'll be able to take care of my daughters after the surgery, especially the baby, because I usually take her to and from daycare each day. How long do you guys think it will be before I can drive a car again? My wife is concerned about my healing from the sternotomy, she has been reading about the approach through the neck, but my neuro does not want to do it that way.