Thymectomy?
 

How is it determined if one should have a Thymectomy or not? My neuro has never mentioned me having one and Im trying to understand how that is decided and if its something that should be considered.
All thoughts appreciated!
Thanks

Hi there- I've been wondering the same. I have residual thymic tissue. The dr is supp to help me sort it out this wk so ill let u know what I learn. And maybe one of our community experts will weigh in.

Thx for the good question :)

Your doctor will order a CT scan with contrast. The contrast is an IV that allows a better images of the thymus. If the images reveal a problem with the thymus, like a tumor or other abnormality, removal may be indicated.

A thymectomy is not a panacea, though. It may takes months or longer to see any lessening of symptoms after the surgery. Sometimes even if there was improvement in the months or years following the thymectomy, symptoms can return.

The MG manual has a section on the thymectomy procedure.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 18

There are three different approaches to a thymectomy. See a recent thread on this topic:

http://neurotalk.psychcentral.com/thread202577.html

-Mark-

Before I had my thymectomy in 2005, my ct scan didn't show any problems. However, I did have a Stage II malignant tumor for which I had 28 radiation treatments. I only had the thymectomy because I had swollen lymph nodes in my chest and they needed a biopsy to rule out Hodgkin's. They could have done it with a less invasive procedure, but I insisted if they were going to put me to sleep and work in my chest, they were going to remove my thymus too. My neuro agreed with me and we went ahead with the fully invasive procedure. I have never been sorry because thymic cancer is aggressive and I may not be alive 9 years later if they had not discovered he tumor.

This type of decision can only be made between you and your doctor. In my case, when I was diagnosed in 2000 at age 50, they told me I was to old for a thymectomy. Times change and I was 55 when I had the surgery and I wasn't to old then!

Good luck with your decision and you're doing the right thing getting all the information you can.

Juanitad-

Wow! That's so amazing and definitely shows you that trusting your instinct matters!

Did you have MG symptoms before removal? Antibodies? What ab now?

Glad you got rid of that. :hug:

Thanks everyone. When I was diagnosed 5 years ago, my CT was normal. I Think i have read that some benefit from having it removed even when it appear normal. My MG isnt very stable and I'm thinking that I should find out if this is something that I should consider. My neuro has never mentioned it.

Something like 15% of newly diagnosed MG patients have an abnormal thymus meaning a tumor or enlargement of some sort. The tumor can be benign or malignant or benign and turning malignant. If you have a thymus tumor, they will probably want to remove it.

When young, we need the thymus to help build an immune system. As we age, the thymus shrinks, turns to fat and becomes less important for good health. The shrunken thymus is often called residual thymus tissue. It is not tumor tissue but the remnants of an unused organ.

There is debate as to whether it is worthwhile to remove a 'normal' thymus to combat MG. Some newer studies say removing a normal thymus is helpful in reducing MG symptoms and some studies say it is not effective.

Removing a tumorous thymus seems to provide a benefit to a majority of MG patients at least for some period of time.

I am trying to learn as much as I can about 'thymectomy without thymoma.'

My CT SCAN, done in February 2014 shows that I have a normal thymus for my age, I do not have a thymoma.

I have read 'online' that for some people under 45, there can be a 30-80% chance of remission for up to 10 years, specifically for MG patients without thymoma.

But, I don't believe everything I'm told or read online :-p lol

I need a lot of evidence to be convinced of anything :-)

Please keep us updated of any new information you learn! :-)

I had full mg symptoms before my thymectomy - part of the reason why I had them remove the thymus. I was moving into my first full mg crisis and had my first IVIG in May 2005 with surgery in Aug 2005. I was still working but had an office job with no manual labor, etc. I was still able to use my hands and fingers to type and was able to put in 8-10 hours per day until the first of 2005 (diagnosed in Aug 2000). I went on a steady downward slide from Jan until May 2005 when I collapsed in my neuro's office - he admitted me that day for IVIG because my ins. would not approve out-patient IVIG that quickly. I was hospitalized for 7 days and became stabilized enough to have the surgery.

MG is unique to all of us and only you know what is best for you. Good luck!