Myasthenia Gravis

[liddyann]

I've decided to have a thymectomy. I met with the surgeon a few weeks ago and I felt very comfortable with him. I went in with my list of questions and by the time he went over everything, he'd answered all but one of my questions. I will go in for a plasmapheresis Tuesday, so I'll be in prime shape prior to the surgery. July 28th, I will have a partial sternotomy. They will break the upper portion of my breastbone and remove the thymus and the fatty tissue surrounding it. He said the surgery will take 1 1/2 - 2 hours and I will wake up with an ice pack on my chest. When I'm fully awake, I will have to get up and walk, so I don't get blood clots in my legs. He did tell me to walk 3 miles daily before surgery, but I muster 1 mile or swim for 1-2 hours. He took me off work for 2 months, but because my job is clerical, he said I should be able to go back after 2 weeks. Also, they told me that I should see good results from the surgery because I'm a young woman and I have no tumor.

I'm nervous and excited...I just want to be "normal" again!! I'll post again after surgery.

[liddyann]

I had my partial sternotomy thymectomy on Monday in the early morning. I was pretty much out of my "sleep" by 11 am and talking to the surgeon and nurses. I was in a regular hospital room by noon and standing by early afternoon. The breathing exercises have been the hardest for me because it's painful to take a deep breath. I was released from the hospital Tuesday by noon. I'm only on ibuprofen for pain and my regular mg meds. Tomorrow, I can remove the bandages and shower...thankfully!! In 2 weeks, the sutures can be removed. The hospital sent home a "do it yourself" removal kit, so my mom will be able to remove them. The surgeon called me at home last night to check on me...I was so suprised!! Ice packs feel good, so I do that as needed. Overall, it hasn't been bad. Hopefully, I'll see the results...no mg...soon!!

[amm34]

I hope that you are doing well, and that it is successful. How long are you limited? I am 23 and in dental school. I dismissed the option b/c I am unable to take more than a week off. It is not strenuous labor, but I do have to have full mobility of my arms. Do you think that is possible? I am happy with my current regime of IVIg, but despite it being used in pregnancy, it is class C. That makes me nervous as I plan to get pregnant in 3 yrs or so, so I am starting to think longterm. What convinced you to do it? I have been looking at numbers, which show less of a success rate than IVIg or immunosuppression, but does offer the hope of a "cure," if it works. What were the compelling factors for you? Thanks for sharing.

[liddyann]

Tomorrow will be a week and other than being sore, I am doing great. The only med I've taken for pain is Ibuprofen, even right after surgery. The factors that made me decide to try the surgery are:
I'm 37 years old
Monthly IVIG's since Aug 2007 have been harder on me (great at first, but now longer recovery time)
Want/need to get off Prednisone (been on fairly high dose for a year)
My neurologist has been encouraging it since I was diagnosed 4 years ago
My IVIG doctor encouraged it because of the steroids long term side effects
and
When I met the surgeon, I felt very comfortable and positive this was my next step...seriously, I felt I had nothing to lose. I was tired of being tired and not up to going out with friends after work, walking my dog...walking, period, unable to help around the house without resting, etc...etc....

The surgeon recommened I have a plasmapheresis a week before the surgery, so I'd be in shape for the procedure. I did have an episode an hour into it...my heart stopped for 17 seconds. Luckily, I had a heart monitor on. I told the nurse that I felt weird. I had a "fog" or "haze" across my eyes and I just felt strange...I closed my eyes and that was it. They stopped the plasma exchange and I felt ok an hour later, but they kept me for another 24 hours to observe. I had 5 plasma exchanges in 9 days a year ago and had no problems.

I will probably be off work for 2 weeks because my job is clerical. My only restriction is not lifting over 10 pounds.

I pray this will be the end of mg as before. You have to choose what works for you...I had no other meds or procedures to try.

[amm34]

I am so glad that it went so well. Thank you for sharing your experience. That makes me feel better if I do decide to try it, or if IgG stops working so well. I have been lucky to avoid prednisone/ refused to take it -- I have used higher doses of cellcept with IVIg to control it, but that too has its disruptions. I think the notion of surgery w/o 100% cure is scary, but I do appreciate hearing good things. I wish you a speedy recovery and a life w/o MG. Did you have anti-striational antibodies? Thanks!! Take care.

[melkov]

Good for you! I waited 15 years to have it done because I didn't want to look like a centerfold (staples in the chest, ha ha). That was a big mistake. By the time I had the thymectomy I had lost a lot of muscle and tone that does not come back. You should have this procedure as soon as you are able. I do think it is important to understand that this is not a silver bullet. It will relieve most of your symptoms, but is not a cure.

[liddyann]

I've been doing quite well, so far!! I had one day that my legs were weak, but mostly it's been droopy eyes and weak right hand. Even these come and go quicker than before. I've been able to walk my dogs again, which has been great!! Tonight, I walked a mile. Even with setbacks, I feel good!!

[liddyann]

I can't believe a month has passed since my surgery!! Life has been good!! I went back to work after 2 1/2 weeks. My co-workers make sure I'm not over-doing it. I actually leave the office on my lunch hour...I have no fear of falling or needing to rest on my lunch hour (I use to sleep everyday on my lunch hour just to get through the rest of the day). I still have minor droopiness in my face and right hand, but I bounce back so much better. My knees ache, so I take glucosamine and that seems to help. I had that prior to surgery. Last night was the first night I felt completely exhausted, but it was from a busy week...not mg. Tuesday, I go back to the surgeon, for my follow-up with him and a Xray on my chest. Hopefully, the sternom is coming together. I can tell if I've lifted something too heavy...it hurts the next day.

If I could go back in time, I would have had the thymectomy 4 years ago when my neurologist recommended it.

[liddyann]

Another follw up...

Today was a little rougher than my days since surgery. My eyes were very droopy and my arms/hands were weak. It was very difficult to drive home from work. Fridays, I am generally tired after a full work week. Still, I feel better overall. I'm going out at lunchtime instead of napping...that's a plus!! I know tomorrow will be better.

Have a good restful weekend...