I am getting really nervous....I am going to for my thymectomy next month...and I know I need this....and I just know in my heart that it is going to help me....

But how painful is it? How long does it take you to recover? I am having it done Thoracoscopic Thymectomy. How long were you in the hospital.
I am sooooo scared.....I have complete trust in the doctor and surgeon at MG clinic at Baltimore. I am just scared that it is going to hurt really bad.....

If anyone could share some personal experiences regarding this...so I can have a better feel for what will be happening to me

I need some advice and encouragement.....

Stephanie- I understand your anxiousness towards the procedure 100%. I didnt have the thorascopic, i had the sternoatmy which is breaking the breastbone completely apart. And at that, It really wasnt tooo painful, with the medication that was administered while in the hospital, and even out of the hospital.
I cant tell you how long youll be in the hospital, yet I assume if everything goes well, maybe 2-3 days?

I was in for a week or little longer, my lungs started to collapse for some reason, dont really remember.

Yet Im sure youll do fine! And it wont be as painful as you think, just make sure if you are in pain, you tell the nurse, and she will help you out.

Do you know if you have a thymoma? It should be worth it, if you do. I never knew i did, and i even had a CT scan, and it didnt show, yet when my surgeon went in, it was huge.

So i wish you luck, and dont be nervous, which i know is easier said than done for sure..


Good luck!

Hi Stephanie,

I know what you mean, I to was scared, terrified in fact.

I had a partial sternotomy(sp), with an epidural as pain management, which was stopped the day after surgery by my surgeon!!, I was in pain, my gorgeous nurses called the pain team, and got it started again!!!!!! they were wonderful and looked after me so well.
Yes it was painful after I left hospital, but nothing I couldn't cope with, I've had period pain that was worse, but I get bad periods!!!
just remember if you need to cough, use a pillow to brace your chest. Don't lift anything, or do anything to strenuous,
Rest lots, I aslo did short walks, I mean short, around the pool, which was tiny, so maybe 2 minutes 3 times a day. My physio's told me to do some exercise, but not to overdo it!!!!!
This is all I think of at the moment, but if I think of anything else I will let you know, and I'm sure other people will be along with their thoughts.
take care,
Kate

It is scary, we all know that. I, just like Tyson had the old fashioned surgery, they went through my neck and through my chest so I have the open heart surgery scar..LOL

I was in the hospital for a month, but that was me and that was 19 years ago, they have come a long way since then.

The most pain for me was when I needed to cough and I would hold a folded up sheet or firm pillow against my chest. You will be back on your feet before you know it and to me, I really can't remember the pain, almost like childbirth, when it is over, it's over

I wish you luck and will keep you in my thoughts, please keep us updated.

Stephanie,

I believe the thorascopic thymectomy is similar to what I had done in December 09. Mine was done robotically with 3 small (about 1 inch) incisions at the top and right side of my right breast. My cardio-thoracic surgeon is the director of the robotics program at one of Cincinnati's largest hospitals. I was just getting over a MG crisis for which I was hospitalized and had completed 4 plasma exchanges, when they moved up my surgery to do it while I was in the hospital rather than send me home and do it a couple weeks later. I had surgery on a Friday and went home the following Monday. Little to no pain after the drainage tube was removed within 24 hours of surgery. As a matter of fact, I didn't need any pain medication after that dang tube was removed. No stitches, just tape over the 3 small incisions. I'm having my final post-op visit with the surgeon later this week (almost 9 weeks since surgery).

If your surgery is similar to this, you will be just fine. It is way less invasive than trans-sternal. How severe are your MG symptoms at the present time?

Kathy

Kathy,
Right now....with the monthly IVIG treatments....I am only having minor symptoms....weakness in the afternoon/ evenings after a long day at work....and double vision only if I have overdone it on the computer. I can get so irritated when I am tired if I have overdone it......(my poor husband)

I have learned to really pace myself...and know when my body has had enough...One thing that I have really noticed lately is that I have had some trouble swallowing...and heartburn....not sure if heartburn is related to MG...I am eating small meals but sometimes this does not always help.

I am totally off caffeine per doctor's orders...have been for about 4 months....and boy, do I miss it for the quick energy...but, I was crashing off the caffeine and had to have more and more.

I am hoping that this surgery is the answer to my remission

Kate,
I will have to bring my koft-a-lot pillow. Many moons ago...with my c-section, a friend gave me the cutest "bear" pillow and called it Mr. Koft-a-lot. I had forgotten about that until I read your post!

HI Wish you the best

I had mine last Thursday but my doctor used the robot (as a tech guy kinda cool) The day of was kinda rough for me. The DR. put in a chest tube for drainage (by far the worst part) was removed the next and and my pain level went down 75% still real sore but no longer hitting the Morphine every 2 hours. When home that afternoon. Took is easy back to work today, very tired now and sore but had a good day. Don't be scared you will get through it.

God Bless you

John