I beat ya, Rezmommy! I had my thymectomy 5 days ago! We must both be on the same wavelength because I have been trying to muster up the energy to write my memoir of a thymectomy today too!

One of the things that gave me the courage to face this thing head on was the experiences of others shared on forums like these. The ones that stood out and the ones I kept repeating to myself said, "It's not that bad", and "Maintain your pain management and you'll be ok". Boy what a crock of bull that was! Understatements of the century!!!

I agree with Rezmommy. It was absolute pain during those first couple of days and no amount of Morphine seemed to keep the pain at bay. But I'm ahead of myself. Let's start at the beginning. Just six weeks after giving birth to my third child, I began to have persistent double vision. I went to the emergency room. The doc said I might have to see a neurologist at which point I began to cry. I was only 28 years old and relatively healthy and couldn't imagine what could possible be wrong with me. He suggested I see an eye doctor first, then a primary care doc, and finally a neuro. I followed his orders and by the end of Nov 2008, after an EMG, it was determined that I had MG. My neuro scheduled a CT Scan which detected a thymoma. Again, I cried. It just seemed to be getting worse and worse with no end in sight. The neuro prescribed Mestinon which took about six weeks to work. By then, the double vision had subsided and the only other symptom of a weak tongue when talking had started to disappear as well.

I was supposed to have my thymectomy at the end of Jan 2009 but it was quickly postponed when it was determined that my thyroid was out of wack and my body wasn't producing any TSH. After a couple of tests, I was in the clear for the thymectomy but eventually I will need to have an oblation treatment to have my thyroid stop working. My thymectomy was rescheduled for Apr 6, 2009. I went in at 6 am. The anesthesiologist set up 2 IVs, the second which was more painful than the first (an arterial line). I don't remember falling asleep, but by 9 am the procedure was well under way. I was awakened around 1pm in ICU and all I could feel was pain. I was still groggy from the anesthesia but I could feel people lifting me to try to put a bra support on so that my breasts wouldn't pull on the incision. I was asked what level my pain was, at it was clearly a 10. I've had 2 c-sections in the past and this pain I was feeling was nothing like it. They set up a Morphine pump where I could press a button an receive a dose every 10 minutes but after seeing the surgeon and telling him of my pain that didn't seem to diminish, he increased the dosage and shortened the time to 6 minutes. I spent the rest of the day trying to press that Morphine pump button and get that heavy chest pain to go away. I also tried to sleep as much as possible in between being checked by nurses.

The next day, Day 2, was slightly better than the previous. I learned that I had a chest tube draining any fluid or clots that may be in my chest. I was receiving daily doses of heparin to avoid clots as well. The doc said he would try to let me go home on Day 3 if the chest tube stopped draining. I also had a chest xray. I started a liquid diet. My morning was spent with my nurse trying to prepare orders to send me to a regular room. By noon I was sent to a regular floor. I had to switch from the ICU bed to a transportation bed and that was awful. I inched my way over all the while still in a lot of pain. Neither the nurse nor the pair of transportation people offered any real help until I was almost completely on the transportation bed. I don't know why because I certainly didn't want to do it all on my own. By the time I was sent to my private room, I know I must not have been very friendly because I was still in a lot of pain and didn't have the energy to be all that nice. By that afternoon I had developed my first fever and was given aspirin. The doc said I would have to stay another day. I also sat in a chair today and took my first walk.

Day 3 was much of the same, sitting up, walking, and getting a couple of fevers. My departure was delayed again and my chest tube stayed in another day.

On Day 4 I was finally released. I did not develop a fever that day and the chest tube was removed.

Today is Day 5. I feel better as the days go by. I sleep very little and lay propped up on a mountain of pillows for support. I take percocet every 4 hours but it makes me feel dizzy some. I am able to help my kids a little, like take my 3 year old to the bathroom as long as she does most of the work herself.

Sorry for the long post...I will post again to keep you all updated on my progress.

Nickel5,
Good for you! posting after only five days. This week I am coming up on my eight week mark and feel very well and I am sure you will too. I have three kids 8, 4 and 2. My two year old got overly excited when I was up one day (about 1 week in) and bumped into my chest. The pain was something else, so please keep that pillow handy around the little ones.

Hey there! Yep, the docs lie when they say it won't hurt - "minor discomfort" my eye! I had that morphine machine going @ 5 min clips in the recovery room.........LOL!

It has been a year since my thymectomy - best decision I ever made -in my opinion - b/c it our chance @ REMISSION!

I think it is wonderful to let others know what the sternectomy entails - knowledege is power!

You must be really tough to be posting so soon after your surgery........how are you? What meds are you on? Have you had IV IG yet? How/when were you diagnosed? Do you have a good neuro? A support group? How are YOU coping with this?

As I said, it has been a WILD year - I was diagnosed March 6th and had my thymus removed on April 22nd...........

Still, the thought of remission never leaves my mind. A girl in my support group here in SA had the thymus removed and has been in remission for 11 years! How great is that?

Can't wait to hear from you!
Erin