thymectomy question
 

I've read quite a few articles about the outcome of a thymectomy. Initially I read something that said it was essentially a path to a MG cure. Then I learned more and it's a whole lot more complicated than that.

One article said:

"In a review of 100 consecutive patients who underwent left-sided robotic thymectomy for MG, Marulli et al demonstrated the safety and efficacy of this approach. No deaths or intraoperative complications occurred. On 5-year clinical follow-up, 28.5% of patients had complete stable remission, and 87.5% showed overall improvement. Remission was significantly more likely in patients with preoperative Myasthenia Gravis Foundation of America class I to II."

and this sounds pretty good.

Is that article wrong? Is there a consensus on this forum regarding thymectomy? Why is there so much apparent controversy?

Hi,

First realize that people posting here or on other message boards are not those who've gone into remission, as those folks are likely busy living their lives (lucky dogs). Secondly, those who are seronegative do not usually benefit at all from a thymectomy and really only need to consider it if they have a thymoma. Seronegative (including MuSK MG) people account for about 20% of all people with MG, so that automatically changes the results if people with seronegative people were included in that study.

Class I and II MG is actually fairly mild. I would guess that most here are in the II to III or greater range.

I do know one person who is in a long term (30 years plus) remission. However, it took about 10 years post-thymectomy for that to happen. She's the only person I know who has done so well, and I've "met" hundreds of people with MG over the years via message boards, forums, etc.

Not sure if this answers any of your questions, but thought I'd throw this out there for you.

I had my first MG symptom (actually, only MG symptom), ptosis, the last week of October, 2011, extremely high off the charts antibody results 2 weeks later and a trans sternal thymectomy on December 20, 2011. Surgery was strongly suggested because of a CT scan showing my thymus to be enlarged. (It ended up being 9cm by 9cm) Within 3 weeks of my surgery my ptosis was gone. I stopped taking Mestinon about a month later. My antibodies stayed extremely high until 3 months ago and now they're just "high". There are some schools of thought that believe that if the thymectomy is done shortly after MG appears, the better chance of remission.

What a lucky dolphin you are. Yes, the thymus needs to come out when the CT shows a problem. With just ptosis, you would have easily fit in the grade I or II that have the best result from thymectomy. Hope the remission continues--FOREVER!

On the flip side, there is a veterinarian in the town where I live who was diagnosed with Stage III thymus cancer about 8 years ago. His thymus was so enlarged it was impairing his breathing and was removed under emergency conditions. Oddly enough, he had no MG symptoms, nor has he ever developed them.

gr8ful, I wish there were more studies on thymectomies. They (doctors/researchers) are trying to figure it all out but it's not that easy. Try to find an MGer not on meds who had a thymectomy. Usually when MG is diagnosed, meds are critically necessary because a person has gotten so weak. Being medication-free is the only way to tell if it's the thymectomy alone putting MGers into remission. Often it's the meds that are putting them into a drug-induced remission.

Some say that the reason a lot of women in their 30's - 40's get MG is due to fluctuations in hormones! There are so many reasons why MG could get worse or better.

Sure, what 4-eyes said is true about statistics, etc., however, seronegative MGers are often undiagnosed so those statistics might be quite incorrect. And seronegative doesn't mean there aren't antibodies causing damage but it could simply mean that those antibodies haven't been discovered yet.

The decision to have a thymectomy is a difficult one. Surgery is also very hard on the body and can take months to recover from. You have to look at your body in total and not the part of it that has MG.

Yes, surgery is supposedly best when you are seropositive, have had MG less than one year, are younger, etc. but there are studies that contradict all of that too.

Sorry, you wanted answers and I'm just mudding up the picture. But that's the reality. There is no simple algorithm for who "should" have a thymectomy and what exactly the outcome will be. There are too many other variables involved to proclaim anything.

Are you going to have the surgery? If you do, I hope it goes really well and that you do benefit from it.

Annie

I am a little upset they have not done a CT scan on my Thymus yet. I see the neuro-optomologist next month and I am going to ask for a CT of the thymus. I had a large tumor removed from my thyroid 30 years ago. i am hoping they offer to take the thymus out. If they do I am going for it. From what I read, it is the best chance for a full remission. The last surgery exaccerbated the MG and I still have not recovered to my pre-surgery state and it has been almost a year. Even so, for me I think it is worth the risk to not have to deal with these symptoms at all.

good luck
kathie

No easy answers. It's possible a free lunch is out as well. Error of commission or mistake from omission. Six of one....

It seems it can help more in some situations than others but there is no certainty. It's not very satisfying being on the frontier of medical knowledge.

Thymectomy
 

I had it done 8 yrs ago and put me in remission for 7 yrs. MG is now back.
I recommend it sooner than later

Well put. It is a little like throwing the dice. Some MGers do benefit from that risk, however. Only you can decide if it's the right thing for you to do.

:hug:
Annie

My son had a thymectomy and a thymoma removed in December via robotic surgery. Everything was successfully removed with no problems. I have read that it is safer to have this type of surgery and certainly easier on the patient. I know there are instances when this type of surgery is not feasible. He is still having muscular weakness, chewing and swallowing problems. However, I have read that remission is more likely when you don't have a thymoma.

This right here. It's something that only you and your doctors can really give you an answer about whether you are a good candidate for it, and if it's worth the trouble of the surgery to get some possible relief. I am in stage I/II and both my pulmonologist and neuromuscular doctor are holding off on it, but it is being watched and scanned every certain amount of months.

Hope it goes ok :hug: If you are unhappy or unsure with the decision, you could always try to get a second opinion.