Thymectomy or not
 

:) wHAT WOULD SOME OF YOU MORE EXPERIENCED FOLKS SAY ABOUT A THYECTOMTY OR NOT. DIAGNOSED WITH MG ABOUT 2 MOS AGO. HAD SYMTOMS OF DROOPY EYELIDS, SOME SPEECH PROBLEMS, CHEWING PROBLEMS, AND SOME SHOULDER WEAKNESS. MESTINON WORKED A MIRACLE FROM 1ST PILL ON. LAST WEEK HAD CT-SCAN, EVERYTHING NORMAL, I AM 74 YEARS OLD AND NOT MUCH IN FAVOR OF SURGERY.
WOULD BE INTERESTED IN YOUR OPINION. THANKS

FREDH

Hi Fred,

Good question. At your age, and given the fact that you respond so well to mestinon, I think I'd be very hesitant to mess with things right now! However, if you decide you want a chance (and it's a pretty small one) of being "pill free" some day, I'd definitely look into a video assisted thorascopic thymectomy (VATT) or some other minimally invasive one. I know a man who had it done at age 69 and did OK.

Also, if you are seronegative or MuSK positive, the chances of having relief of symptoms from thymectomy are not really good at all. Only those who are ACHR positive seem to get that benefit.

Good luck making your decision. Surgery becomes a little more of a "big deal" with every passing decade, so take your time!

I'm 72 and pretty sure it is NOT recommended for our age. Plus at our age everything I have read I would not recommend it.
Mike

:)that was what i had read about it also. Now my count on antibodies was very high (over 500 ), however, i have read here that that high count is not necessary a symptom of a more servere case. Thanks so much fred

I feel the same way. I feel to good to do surgery at least if the mestinon continues to work thanks fred

I hope Im posting a thank you to all that answered me. Not too familiar with the site yet, thought I wrote a thank you, but havent seen it show up. Anyway, if this does post, thanks tom all, sure you will more from me.
Hope I can be helpful also someday for someone.
Thanks
FredH

You are correct, antibody count has nothing to do with severity of symptoms. There are people walking around right now with high counts and zero symptoms and others with barely a positive and incapaciting disease. It's just a marker, not a "severity scale."

Hi Fred,

Given the circumstances of age and no thymoma I definitely would not consider the surgery right now. There are definite surgical risks associated mostly with anesthesia and since you are new to MG you don't know how this disease is going to react. Your response to Mestinon is good - wait it out and see where this goes. I assume you are not on any other immunomodulating drugs which might be a consideration eventually. Work closely iwth your neuro and I'm sure he will keep a close eye on you for increased weakness and treat accordingly. Always weigh the benefits of any treatment considered against the side effects or risks involved - your doctor needs to help you do this - and then make your decisions. Read all you can and use the MG boards for questions - most of us have been through various treatment modalities with our MG and you will learn a lot from us. Good luck with your decisions.

thymectomy or not
 

:)Thanks Robocar,

My thinking now is not to have surgey for this, as I have stated, I am so lucky that the Mestinon has been so effective. I am aware that it might not always be this effective, so dosage may change. Also Neuro said he has other meds if this didn't work.
Very interesting Disease, You really just don,t know where its going I guess.
One last thing, I saw a Neuro about 4 years ago for same symptoms, and she missed it. Ran every test except for this. Had same symptoms, understand this MG usually shows most symptoms in the 1st 3 yrs, is this true?
Thanks so much
FREDH
.

There is no way that I would do surgery if there is no tumor and the mestinon is working well. You can always do it later if you need to. The stress of the surgery may make you much worse.