While I was being infused yesterday, a nurse came to visit from another one of their locations and told me she was treating a MG patient that had his thymus gland removed. She said he did not have a tumor.

Has anyone had a Thymectomy that did not have a tumor?

Tony

I had a thymectomy, but I had a growth.

I do know that at least 2 men in our local MG support group had a thymectomy eventhough there was no irregularity with their thymus.

Their neuros advised them there was a possibility of remission or less severe symptoms if they had their thymus removed. Both pondered their decision for a long time, but in the end the possibility (even slight) that it might help their symptoms won out.

What does your neuro say?

Yep I had my thymus removed and didn't have a tumor.
I am glad I had it removed, cos I often wonder if I hadn't would I be worse, or the same. Who knows, its very much a thing to discuss with your Dr, going over all the pros and cons.
Kate

I keep hearing the rule of thumb is to leave the thymus alone, but if it is causing respiratory issues or has a tumor to consider removing it.

I'll go to the doctor tomorrow.

So far, he just wants to take pictures of my thymus.

Because I did not have a growth at the time, my neuro did not recommend it. That was in March of 2009. We never talked about it since.

Kate, did you see improvement after surgery?

KathyV, Did the 2 men you mentioned see improvement?

Tony

Scrubbs,

A good rule of practice is to monitor the thymus if it's enlarged.

FYI: It does not necessarily have to have a tumor to be enlarged. In my case, it's the tissue of the thymus gland that is enlarge.

At one point, my doctor wanted to remove mine, but after I had another round of MRIs he changed his mind.

Go figure.

I recently had a CT scan of thymus which showed hyperplasia of thymus and now have to go and get the MRI of chest done.

There is infiltrationfrom the thymus ??? into the area connecting the two lungs - which is probably why I have these crazy "gasping" attacks as if I have been drowning and now desperately need air.

I've done alot of researching and apparently, after a thymectomy it can take years before a person feels any real benefit. Most dont have much problems recovering from a thymectomy (much to my surprise)

So, I guess I will consent to have one done if it is even still a viable option due to the infiltration into other organs.

I'm a 66 year old male that came down with MG about a year ago, but looking back believe I had symptoms before that, maybe a year or two with some problems with blurred vision. In any event I had a CT scan and it showed no problems with My thymus gland, but as part of the therapy for MG I wanted a thymectomy and had a VATS thymectomy performed at Columbia U. last May. To date I have not noticed any significant difference in my symptoms (blurred vision and problems eating, talking, etc), but from everyting I have read it takes at least a year to see some results. Currently I'm on 6x60mg of mestinon and getting by.
Chris

Tony,
I believe the one man who had it done just about a year ago did see some improvement. He is in his early 30s and finally decided to do it in hopes that it would improve his quality of life since he has young children.

The other man who is in his late 50s just had his done less than 3 months ago. I do know he had to be hospitalized recently for another crisis.

Both travelled out of state to go to the Mayo Clinic in Minnesota to have their surgery done. They had minimally invasive surgery which goes through the base of the neck.

I stayed at home and had mine done by the cardio-thoracic surgeon who heads up the robotics program at one of our local hospitals. He used the DaVinci robot machine to do the surgery (3 one-inch incisions on the side of my right breast). It's been 11 months since my surgery and I still have some occular symptoms, mainly droopy eyelid and off and on double vision. I only takes Mestinon.