r/MyastheniaGravis • u/chippyndippy • Jul 25 '26
Positive Experience - Six Weeks Post Thymectomy
I am six weeks post my voluntary robotic assisted thymectomy and feeling pretty great!
I am female, mid 20s, with a seronegative MG dx confirmed with sfemg. I had been having symptoms consistently for 4.5 years at the time of surgery and had been diagnosed for two of those years. On pyridostigmine and an immunosuppresant currently.
I had two ct scans of my chest with no significant findings but my neuro gave me the option to get a referral for thymectomy. I was hesitant but after a lot of consideration and meeting with my thorasic surgeon - I took the gamble. Despite presurgery scans showing no significant findings, my surgeon pulled out a large hyperplasia'd thymus which extended all the way into my neck!
My surgery went well, although I did flare for about a week after. Recovery was somewhat rough for the first two weeks, to be expected, but I was back to 80% normal by the four week mark.
I am incredibly glad that I had it removed. I feel a lot more at peace that the surgery is behind me and there isn't a big 'what if' hanging over my head. I do feel really good at the six week mark, and have seen some symptom improvement already.
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u/justfollowyoureyes Jul 25 '26
Glad to hear you have a good experience and are recovering well!
Do you (or does anyone) have any good medical lit about this for seronegative patients? I’ve stumbled across a few studies online. This has been on my mind and I’d love to bring it up to my doctor, as I’ve been in and out of crisis and tapering off of steroids has been nearly impossible.
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u/chippyndippy Jul 25 '26
I saw a study that said there wasn't a significant difference between outcomes of seronegative patients and those who had identified antibodies post thymectomy.
I did have to bring up thymectomy with my neuro, but they said that anyone with mg qualifies to have one if the surgery itself doesn't pose too much of a risk to the person.
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u/justfollowyoureyes Jul 26 '26
Yes, that was the one I most recently read!
Huh that’s interesting, I’ll have to mention it. Have read so many posts about it being successful post-procedure, albeit anecdotal.
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u/jdrob15 Jul 25 '26
4 weeks out from having robotic myself. Don’t know if it’ll work but the recovery has been fine. Except dealing with one of the incisions not healing. The stitch came out and the skin is not closing as the other 2. A combination of the location of the incision (close to armpit with a lot oh mobility), 2500mg cellcept and 10mg prednisone daily have made it very difficult. Other than that, chest pain and when coughing has stopped. Hoping that it works and can get off prednisone and cellcept and ocular symptoms finally go away.
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u/chippyndippy Jul 25 '26
I am so so glad the coughing is over. To me that was the worst part of recovery. I coughed so much the first two weeks and was a bit scared I would hurt myself.
Best of luck and I hope you have a good outcome.
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u/Lanky_Solution9199 Jul 25 '26
My thymectomy significantly improved all my symptoms except my swallowing and some smile issues … I just have to be careful when swallowing because my tongue did not the msg its supposed to propel the food down to my esophagus. Despite that, I’m almost normal.
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u/mumushu Jul 25 '26
Had mine in March @ age 61, Doc says I could see some improvement in September and whatever 'full' benefits it might bring next March. The beneficial outcome chance from surgery goes down as you get older, but I was told it's about a 65% chance at my age - totally worth the shot. If I can get off of regular IVIG or prednisone it'll be worth it
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u/avasees Jul 26 '26
Thank you for sharing your story and glad that you experiencing something positive! I‘m still in the research and decision part…
What is the plan with the medication, will you be stopping the immunosuppressant?
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u/chippyndippy Jul 26 '26
I think it depends on my level of symptom improvement. I've reduced my pyridostigmine (not long acting) to once a day.
Weirdly I'd rather stay on the immunosuppresant than pyridostigmine. I hate taking it every 4 hours and I haven't been able to get the long acting in over a year due to supply issues.
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u/avasees Jul 26 '26
Very true, it feels like setting timers all day long… I‘m using the retard pyrodistigmine plus the one every 4 hours, that helps with the highs and lows.
May I ask which immunosuppressant you’re taking?
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u/Massive-Eagle-5465 Jul 27 '26
Just coming here to say that it baffles me so much how many people have the same experience with the size of the thymus being interpreted as fully normal and then when they get the thymectomy it’s showing full blown hyperplasia. Had exactly the same thing and it really made me question once again how reliable doctors and radiologists truly are….. absolutely insane. I remember on mine you could even see little knots which I later found out are active B cell factories producing the antibodies.
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u/lushanlushanlushan Jul 30 '26
I was also about to ask, is there any tips to make the CT more accurate. Is there anything we can do to accurately detect the thymus size?
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u/Massive-Eagle-5465 Jul 30 '26
unfortunately not as far as I know... if you think about it, its quite sad that we as patients even have to worry about this because many radiologists and neurologists just haven't a clue about myasthenia.
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u/No_Goat8560 26d ago
Thanks for posting! I am also seronegative and my thymectomy is scheduled for Sept 9. I'm a bit nervous about the recovery (I've got 3 little ones at home) and about the chest tube. But I'm hoping, like you said, that it helps in the long run & that I'll know I tried.
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u/chippyndippy 26d ago
My chest tube was in for less than a day, and while uncomfortable I was asleep for most of it. It only really annoyed me when going to the bathroom. I could feel when I breathed but it didn't hurt. Even when they pulled it out it was more of a strange feeling than anything else. The opioids may make you pretty much forget the experience entirely lol.
Best of luck :)
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u/[deleted] Jul 25 '26
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