Hi all,
I would like to have had all the details laid out before I had the surgery, so here it goes. If it is too much information, sorry.
On the day I was diagnosed (Nov. 11/08) my neurologist said that he would make a referral for the thymectomy. He said that it was ultimately my decision but because of my age (36) and because I have generalized myasthenia gravis he felt that it would benefit me. I had a crisis in Jan. /09 where I could not swallow and was having severe shortness of breath. From the time of diagnosis I had done a lot of research on the surgery and had many discussions with my family. After the crisis I got the appointment with the surgeon fairly quick.
I met the thoracic surgeon on Feb. 5/09. He said that it was his belief that doing the full sternotomy was the best way to ensure that all the thymic tissue could be removed. He explained the surgery itself and just asked that I not take any aspirin prior to surgery. He also wanted me to have plasma exchange done just before surgery. After the surgeon consulted with my neurologist it was agreed that I would have IVIG the day before my surgery.
On Feb.18/09 I arrived at the hospital at 6:30 am and was taken in to get prepared for surgery. The main thing was finding a good vein because I have such a difficult time with the IV. At 8:45 am I was wheeled into the operating room and I made it clear that I have myasthenia gravis and that anesthesia is a big concern. The anesthesiologist was very reassuring and the surgery got under way at 9:00am.
The surgery lasted two hours. I woke up in recovery at about 1:30pm. I was in a LOT of pain when I woke up. The nurse did her on a scale of one to ten thing, I said "I am pretty sure I am at 10." I was given more pain meds and taken to the surgical step down unit. From this point I slept until 6:00pm. When I woke up I was not in as much pain but was still groggy. I had an epidural for the pain (which I had no control over), a catheter, two drainage tubes in the chest, oxygen and IV's. The nurse brought a supper tray but I had no desire to eat because I felt so groggy.
The next morning I was awakened at 6:00am because the x-ray machine was wheeled in to give me a chest x-ray (this happened each morning). After I had managed to "freshen up" it was time for physio to come in and get me out of bed. You have to get out of bed and move to reduce the chance of developing blood clots. It is painful to get out of bed that very first time. The nurses were very good at helping to move everything along with me. I sat up in a chair while I had breakfast. The physiotherapist went over the breathing and coughing exercises. A pillow will be your best friend for a while.
I was given heparin shots in my stomach daily to prevent blood clots.
On Feb. 21/09 the chest tubes were removed, the catheter was removed and the epidural was removed. The IV stayed in for meds. The gauze was removed from the incision and this was my first chance to see what I was left with. I have a 6 and a half inch scar in the center of my chest and two 1 inch scars underneath that from the chest tubes. I had twenty staples in the main incision and stitches in the tube incisions. (From others that I have talked to staples are not common at all, most surgeons use dissolving stitches.)
On Feb. 22/09 I was sent home. My only concern was that I was given a narcotic for pain management and felt very "out of it" when taking these pills. At home I only used tylenol and advil for pain and I managed just fine. Sleeping was the biggest issue for me. I slept in a sitting up position with pillows propped all around me. I found that the first 7 -10 days were the most difficult because I was having such a hard time sleeping. I am not sure if it was because of the meds or surgery but I had to get up several times a night to use the bathroom. Coughing and laughing were painful and it always helped to have the pillow handy. Sneezing is in a category all it's own, lets just say it brought tears to my eyes.
Ten days after surgery my staples came out and yes this was also painful but it went fairly quickly. My symptoms are decreased but I am still on Azathioprine 100mg 1x/day, Mestinon 60 mg 5x/day and Prednisone 15 mg 1/day.
At about the three week mark I started to feel normal. I made supper and did dishes without feeling too weak. I am still not really lifting anything. My doctor said not to lift anything over 10lbs. for 6 weeks.
Prior to surgery I had limb weakness, fatigue, eyelids drooping, neck and face weakness, difficulty swallowing and shortness of breath. Since the surgery I have only been dealing with limb weakness. I have noticed a great improvement in my droopy eyelids, everyone mentions how good my eyes look. I must have looked horrible before.
I am on meds, I have had IVIG and I have had the thymectomy. I don't know exactly what is working on my MG at this time. What I do know is that I am grateful for my current health and I hope that it is long lasting. I am confident that having the surgery was the best choice for me and I have absolutley no regrets.

Rezmommy, that is a very well done "picture" of a very difficult surgical experience...I applaud you for that & agree that anyone considering it should read this....(have to say that I may be a little bit glad that my age will rule out this one, lol)....J/K, good job!!

Dottie

At least we can say it's finally over!!! After weeks of having this dark cloud loom over you, at last you can find some relief! I have also just had a thymectomy (see Thymectomy what to expect ( in detail) Part Deux) and it's great to be able to share the experience. At least others will be helped by your experience. Congrats!!

Rezmommy, Congratulations and I raise my glass to you! You are progressing beautifully it sounds like, and we all look forward to your speedy recovery and that shining goal of remission!

YEAH!

Rezmommy, your description sounds similar to my experience. I had a thymectomy in Aug. 2008. I completely agreee with you on the sneezing part. It did bring me to tears. After that first sneeze, I had to always make sure I had a pillow with me to hold up to my chest when I sneezed.

Rez, So glad you are doing so well after your Thymectomy, It is at the top of the list of Life experiences ! Thats for sure, I hope you get good results from it.
You did a fantastic job breaking the proceedure down for people.
Take Care, Mary

Great job! You laid it out perfectly! I wish someone would have told me what to expect when I was going in.........

Erin

Yes, you summed it up well. I had mine done 18 years ago this month Didn't have people to talk to about it like we do today via internet groups like this. Your post should help many who are facing this now. Hope it does you well, I went into remission from mine for over 15 years.

I am scheduled for this procedure next week, and it was so comforting to read your description. The doctors tend to be rather brief in their synopsis, plus they've never actually been through it. You've made me feel much more relaxed about what I've got ahead of me. I'm 39, female, 3 kids, diagnosed 3 weeks ago. Symptoms began as paralyzed vocal cord 5 months ago. Fatigue was waved off as "I've got 3 kids, husband recently operated on and requiring care, other assorted family crises: all chalked up to stress. Didn't notice until Mestinon how much better I felt...wow, I must have been bad off. Looking forward to/ dreading surgery. I'll be in hospital for plasmapheresis on Mother's Day (boo hoo). If I can find the strength (lol) I'll try to post my outcome. Doubt I'll be as helpful, though.......Definitely NOT too much information, Rezmommy. Thanks again.

Good luck with your surgery next week. We'll all be thinking of you and sending good thoughts your way.