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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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New Member
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Thymectomy is Tuesday, June 19. Full sternotomy, surgery is necessary to remove large thymoma. I have plasmapheresis Friday and Monday (first time). Had IVIG for the first time a couple of weeks ago.
Surgeon's estimate is one week in hospital and two months before I can go back to work, assuming no complications. I'm hoping to do that or better, but I will take it easy and do what seems reasonable. I'm recently diagnosed with MG - first symptoms were in April, diagnosed and put on mestinon in May. I'm a 33-year-old male with symptoms which have been so far on the milder end: double vision in left field of vision (somewhat moderated by mestinon), droopy right eyelid (alleviated by mestinon), periodic weakness of front shoulder muscles, especially right, and periodic general tiredness. So far no issues breathing, speaking, or with other muscle groups. Obviously I'm hopeful that the surgery and recovery won't be too awful and the MG symptoms will go into remission or become less severe, although I know that the thymectomy could severely aggravate the MG. I'll try to update from time to time once I'm out of the hospital. |
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#2 | ||
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Member
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Wishing you all the best with your surg and recovery! Pls let us know how you are doing as you are able.
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#3 | ||
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Member
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Best of luck! I hope everything goes smoothly for you.
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#4 | ||
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Junior Member
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good luck! I'm heading in the same direction sometime in july, would love to hear how it goes for you. are you on prednisone too? sending good thoughts.
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#5 | ||
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Junior Member
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Wish you all the best.
That's great that your Drs doing all "right " things- PE and IVIG BEFORE surgery - looks like they understand the MG,and want to make you stronger MG wise.Because if they didn't ( I know that first hand),it could be a problem. So,good luck and keep us posted! |
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#6 | ||
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Junior Member
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Best wishes for a very speedy recovery....I had my thymectomy 8 weeks ago today and honestly, the recovery was much easier than anticipated.
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#7 | ||
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Junior Member
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did you have the transsternal Lurleen ? I'm scheduled for one too and wondering about recovery. is planning vacation for three weeks after to sit on the beach a bad idea?
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#8 | ||
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Junior Member
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I had a full median sternotomy although my incision starts 'lower' than expected, which is wonderful i.e. not at the base of my throat. I felt well enough for a few 'guest appearances' at work @ 21 days post surgery. I went back to work full time 5 weeks post surgery. As for the beach, my surgeon did say, with apologies, that he does not want me on the beach this summer because he does want the incision to be in the sun and become darker/sunburned/uncomfortable during the healing process. Also, I had a bit of weeping along the incision line; turns out I was in the 5% of folks that have an allergic reaction to the dissolvable stitches used. (Minor detail). Not sure if blowing sand etc would be good for a healing incision... You don't want to risk any infection. Please realize I'm not trying to be negative about your trip to the beach, just cautious... I understand completely w/ having an attainable goal after surgery though!! I wish you the best, please post and let us know how you are doing!
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#9 | ||
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Member
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Quote:
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#10 | ||
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New Member
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Thanks for the kind wishes. I was released from hospital today (six days after surgery) and can happily report that the surgery and recovery so far have been good. The surgeon had to remove some pericardium to safely remove the thymoma, but that hasn't complicated the recovery and there were no other significant issues. The days immediately after surgery were difficult, of course, but I gained in strength steadily and the nursing staff and surgical team at my hospital did a fantastic job and took great care of me.
I haven't had any MG flare-ups, the relatively minor symptoms are unchanged from immediately before surgery. My neurologist is adopting a wait-and-see approach so I can regain strength (we had discussed starting on prednisone but I'm sticking with just mestinon for now). So now I'm home, moving around although some things are still awkward or impossible. All in all as good as good have been hoped at this point - I'll keep my fingers crossed and obey the doctor's orders! |
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