thymectomy opinions wanted
 

Ken, I'm giving your question its own thread so that it can attract the attention of people who have knowledge or experience in this area. You can also click on "search this forum" in the upper right, and type "thymectomy" into the box. Welcome, and we wish you the best.

Thank you for the help with that. Take care!!

Ken, I am seronegative too sorry to hear ur struggling w this. I was diagnosed at Unc, and had my thymectomy there as well. My neurologist thought the thymectomy would be a smart decision as well..but I got very weak after, my mg seemed to worsen from the surgery. I was on no medication and had a few symptoms then it turned into not being able to breathe/eat/chew/swallow a few months after surgery. (not to scare you, but to help with your decision). most neuros will tell you, you may get worse before you get better w the thymectomy. it's up to you and your neuro. i am a year and a half post thymectomy and still need ivig every month, prednisone and imuran and I still
get symptoms.

please don't hesitate to ask any/all questions.

Ken,
most important thing,in my opinion now- you have to be PREPARE,or I put it this way -doctors have to prepare you for the surgery,if you decide to go for it.They need to make sure that MG is somewhat under control,if you need IVIG or Plasma- they need to do it BEFORE surgery.All that should make your POST- op period less or not complicated.I think, good doctors should know that,but you need to be as much informed as possible.
I know that,because drs failed to "prepare" my daughter before surgery,and they did all this AFTER ,to get her out of crisis....
Also,if you do not have tumor of the thymus, you should probably consider VAC (video assisted surgery- through the neck)- this should be muuuuch easier,than sternotomy.
Just my two cents......Good luck!

my husband had a thymectomy did very well post-op easy recovery for him (of course i am a nurse and sat on him so did everything by the book) MG symptoms actually improved immed post op for several months..then some setbacks...hoping for the long term benefits of it

There is nothing really confirming that getting your thymus removed will work. but there is also nothing saying it wont. I think you should talk to your neuro and really go with your gut feeling. I never had mine removed and have been in remission for about a year now. I think alot of it matters on the person and how severe your disease is.

Actually it has to do with the thymus itself. If your thymus is hyperplastic you can expect good results from a thymectomy; if not then a thymectomy is unlikely to improve your MG symptoms.

Yes I agree if there is some sort of obvious deformity on the thymus like a growth then yes it should be removed. But if the thymus shows no sign of that it isnt really proven if taking it out will help. There has been not data really taken to prove if it is helpful or not. The old school method is that everyone has their thymus taken out. Now and days this method has come into question. I am currently in a study in san antonio tx that is dealing with that. The study was suppose to be over this year but now they are extending the time of the study. I hope for positive results from it.