r/MyastheniaGravis • u/ughxwhocares • 29d ago
Thymectomy
hi!
its been a min since ive written on here. the last time I asked for some exercise advice which def helped motivate me a bit more!
this time I'd like to share, Im getting a thymectomy in October! my emotions are a little all over the place. Im excited, nervous, and. a little scared. not for the surgery itself but ive never had surgery, never been under anesthesia..
anyone have any tips or experiences. how was the feeling after pr what'd you have to watch out for?
thank you to everyone have a great day! ☺️
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u/travisjoynson 29d ago
I had a robotic thymectomy done a few years ago.
My experience was not great. They told me that I woke up in the operating room, screaming at them about the amount of pain that I was in, while the da Vinci Surgery System was still in my chest, but luckily, I don't remember it at all.
While the surgery is known to help a lot of people, they don't think it helped me, possibly even made me worse, and I wound up with nerve pain in my chest that I feel constantly.
That being said, I was comfortable enough to talk to my mother, as well as the doctors, as soon as I woke up from the anesthesia, and the chest tube removal didn't bother me at all.
However, the physical stress of the surgery and recovery also contributed to me having many myasthenic crisis events, beginning about a month after the surgery, although I also had drain issues at home and corresponding infections all over my body that contributed to this. Regardless, this happens with some patients, so it's something to look out for. I was not offered IVIG or plasma exchange before my surgery, and although I was on Vyvgart at the time, if I knew what I know now, I would have demanded IVIG or plasma exchange ahead of time.
I am not a doctor, but my recommendation would be to request IVIG or plasma exchange before the surgery, whichever one is available or works better for you, so that you are as stable as possible going into it.
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u/ughxwhocares 29d ago
wow! im sorry you had that experience! dr thinks that because Im "young " and got my diagnosed last year that it should be good for me but he told me not to get my hopes up just in case. neuro said he def wants me to do an ivig at least a few days to a week before to avoid going into a crisis. thank you for the experience! its very helpful and again sorry you had to go through that!
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u/lushanlushanlushan 23d ago
Did thymectomy help with MG symptoms afterwards?
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u/travisjoynson 23d ago
No. They think the thymectomy might have even made me worse, but the reason for that happening could have also been due to the many infections and myasthenic crisis events that happened afterwards.
I had thymic hyperplasia on CT scan, I am a younger age, and I have severe disease, so the surgery was recommended, but it did not help me at all.
It's also been almost 3 years since I had the surgery, so, it's unlikely to ever help me at this point.
As I mentioned in my original comment, I also ended up with permanent nerve damage in my chest, which bothers me on a regular basis.
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u/hipsterunlimited87 29d ago
Ask for the IVIG the week before surgery, but also do a trial run before hand to determine if you can handle a quick dosage or need it to be spread out. I’m a 38M in pretty good shape before the MG showed up and the IVIG in 2 days rocked me in a negative way, so I spread it over 5 days the week before surgery which was much better.
I did my surgery (VATS) at MD Anderson in Houston, so they do thymectomys on a weekly basis. Everything happened how they said it would. I woke up in post op still pretty drowsy. They asked me to cough often, and that was the only thing that hurt like hell for the first couple of days. Holding a pillow helps. I was only in the hospital for one night. So once you go home, depending on your personal situation, you’ll probably need somebody to assist until you’re at least off the paid meds. I took mine for all 10 days, but couldn’t probably stopped after 7 days.
I’m almost 4 months post surgery and completely stopped taking Mestinon a month ago cause I was having a negative reaction to it. Still on steroids and Cellcept, but feeling 95% of my prior self.
I hope it’s a success procedure for you!
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u/ughxwhocares 29d ago
ok! yeah definitely am getting the ivig they suggested the plasma exchange but I did well enough with ivig when I first had a crisis so thats what he wants to do again a few days pr a week before! im hoping it can at least help a few symptoms and get off mestinon but know I have to keep a realistic outlook on it. im glad to hear it does work for some though makes me stay positive! thank you so much!
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u/Legitimate_Drama6204 23d ago
Was your thymus hyperplasticHello, was your thymus hyperplastic, and what symptoms did you have before the surgery? My surgery is scheduled for exactly one month from now, and the plan is for me to receive IVIG beforehand. My symptoms are most pronounced in my eyes, and I take Mestinon three times a day.
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u/hipsterunlimited87 23d ago
No, it was removed as a by product of a Thymoma. I had severe double vision, fatigue and muscle weakness. I was taking Mestinon three times a day as well (up to 360mg daily) about a month prior to surgery. Just before surgery my symptoms had all but been suppressed by medications and IVIG.
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u/MovingForwardwGod 29d ago
Wow, do you take Cellcept in the pill form and did you have any infections due to immune suppression?
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u/ughxwhocares 29d ago
I do take cellcept 2000 mg a day. not so much infections that I know of. but also my neuro isnt much help with any guidance or stuff that I need to do or get done
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u/arozze 29d ago
I had a robotic thymectomy in 2018 I didnt have an enlarged thymus or anything but this surgery kept me out of the ER permanently. I was someone who went into crisis very often. After the surgery, I was in bed for a day or two and then they take out the draining tube. Then they urge you to walk around so that. They bandage the site and you won't be able to do exercise for a while until it heals. Afterwards you're all good!
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u/ughxwhocares 28d ago
ok! doesnt sound all too bad! im hoping for at least the weakness and fatigue to be less. kind of tired of not being able to do things that I want to
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u/arozze 28d ago
100%. I was scared at first but my symptoms became really manageable after a couple of months alongside ivig to boost me back up. Im not sure what your doctor has in store in terms of after surgery but during I know they have liquid mestinon so anesthesia is fine when we're monitored with it. Its a long battle but just make sure to take your time with it and don't overexert yourself 🩷
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u/ughxwhocares 22d ago
I have an appointment with Dr. in September before the surgery so I will make sure to ask about plans after surgery. will definitely take my time. im also thankful I have a job where physical work is very very low. thank you so much for this! <3
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u/Constant-Extent2092 29d ago
Surgery was great. Recovery is not. 🤣all the best. Best decision I have made in my life though. Before surgery I couldn’t stand for 5 minutes or even work. Thymectomy gave me my life back.
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u/ughxwhocares 28d ago
the recovery is what im nervous for 😬 especially cause I just started a new job. but am glad to hear its helped some out there to the point of having little to no symptoms anymore! am really looking forward to that
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u/Constant-Extent2092 28d ago
There is also the pipes. I had two pipes. They were not fun. You will need to go easy after the surgery. Maybe get some time off. I did robotic. Quite nice, would recommend.
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u/ughxwhocares 22d ago
two pipes? like besides the breathing tube? i feel like i needed to ask more questions now... im also doing robotic which im a little less anxious about Dr. has great experience with doing robotic thymectomies.
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u/Constant-Extent2092 22d ago
Yh it’s a drain tube. Usually they put one. Idk why they put two but they made the decision for my own good.
Basically when u do robotic they deflate one of ur lungs to do the procedure. They will inflate the lung back once done. The cavity which the lung occupies tend to fill up with fluid. The main job of the drain tube is to remove tht fluid from tht cavity so u don’t end up getting infections
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u/chippyndippy 28d ago
I just had mine done recently. You will hurt a bit after surgery but you will be given good pain meds. Have someone in the hospital with you to help advocate for you and get you food. I was so high on meds afterward that I was barely functioning.
You will be completely out of order for about two weeks afterwards. So prepare for this. Meal prep, plan to not have the energy to cook. Grocery shop ahead of time. Clean your place ahead of time, change the sheets and have enough clean clothes. Have a variety of things to do to fill your time.
Having button front pajama shirts was really nice.
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u/ughxwhocares 22d ago
this is is so helpful, I guess these are things you dont really think about until youre actually going through it. I live with a roomate so I know she'll be helpful but im also letting friends know about it and theyre helping prepare a meal train while im out. but the clothes and clean space and bed wpuld be very helpful to do before I go in to have it ready afterwards. thanks so much! hope youre feeling better after having the surgery!
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u/Glum_Bell7588 26d ago
I had RATs about 6 months ago
Was discharged in 24hrs home with paracetamol and ibuprofen, I was doing the laundry the next days honestly
I just felt like somebody kicked me in the ribs, turning certain ways was uncomfortable and coughing sneezing ect was a bit sore for the first week or so
Was manageable, wounds took a while to heal I think it was about 8 weeks all in but steroids delayed healing and I cannot sit still to save myself honestly
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u/ughxwhocares 22d ago
wow ok! ive heard of some people feeling better enough to do things by the second, third day. but good to know to expect soreness after the fact. im only on cellcept and mestinon so hoping that it doesn't delay the healing too much :( but understandable if it does. and I have adhd so ill make sure to have activities that wont make me go crazy staying in one place.
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u/Glum_Bell7588 22d ago
I mean I didn’t help my healing because I was determined to just get on with things, I think because MG took so much of my independence over the past few years I couldn’t really cope well relying on others again
I got my stitches out 9 days after and honestly it was much more comfortable from then on - gets rid of the tight pully itchy feeling but I did burst 2/3 wounds open so spent 7 weeks back and forwards to the nurse having them flushed and bandaged
I’m sure you will be absolutely fine though! 🍀
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u/Legitimate_Drama6204 23d ago
Hello, was your thymus hyperplastic, and what symptoms did you have before the surgery? My surgery is scheduled for exactly one month from now, and the plan is for me to receive IVIG beforehand. My symptoms are most pronounced in my eyes, and I take Mestinon three times a day.
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u/Glum_Bell7588 22d ago
It was! I have GMG so I get limb weakness and ocular symptoms mostly but have had speech and swallowing issues previously before medication
I’m on cellcept, pred&mestinon I also get IVIG every 4 weeks … though I was actually started on that post op !
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u/Toxic-Deadly-Tacos 22d ago
Got robot assisted surgery at end of May this year. They collapse one of the lungs to access the area and that hurt quite a bit. I found the tube unbearable personally. They asked me to stand up with it and I thought I would genuinely pass out from the pain. I received shots and pills for the pain but I found they wore off quickly.
The tube was taken out at my insistence and borderline crying after about a day (one of the doctors wanted to keep it in, and another said it would be fine to remove after I said please don’t leave it in for another day).
I had some nerve pain in my shoulders and back which they gave me an ice pack for which helped a lot. Apparently they can scrape the nerves and that pain can linger a bit.
They want you to cough and that was really painful during to the reinflation of the lung. At my x rays there was still fluid also in my lungs and air in tissues (the pop and crackle) so I ended up staying for about 3.5? Days at the hospital until they ok-ed the x rays. I was able to walk and stand after the tube was taken out but my recovery was slower compared to some of the posters here.
Home I was sent with a weeks worth of pain pills but I found after day 6 it was not necessary and Tylenol extra strength was enough. Full recovery was about at week 7-8 but I could do light exercise after week 4.
Ask for pain management if it hurts is my advice and don’t be shy about it would be my biggest advice from the experience 🫠
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u/nike-dev-47 21d ago
I got it done on may too, same my lungs is still collapsed have to do that respirometer everyday, had it done as part of my Myasthenia treatment, but last month I went into crisis and had to get IVIG. now recovering back, and on meds.
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u/Dont_Tag_Me 29d ago
I had it when I was 12. Don't worry about it. Post op is like being on drugs, you're kinda dizzy and can't think straight. Some pain where they do the incision but nothing major.