Hey,
Does anyone know what this is? I've googled and it isn't what I would have thought but can't get a clear answer. My neuro just did a Chest CT scan and my result refers to this (secretary read it to me over phone) but he is moving to CA tomorrow! He comes back next month for a week so I'll see him then...but I'm wondering what this is and if it is an indication for surgery.

Did you have a thymectomy already (sorry, I can't remember!)? If so. I would think it would be thymic tissue that was missed when the original surgery was done. Does that sound like what you found in your research?

I know if you have a thymus with hyperplasia (tissue that has spread outside of the thymus gland itself, some may be missed during the thymectomy, depending on the procedure and the thoroughness of the surgeon.

Here's hoping you get your answer soon.

Tracy, Thymic hyperplasia refers to an enlargement of the thymus gland not usual for the particular age you are. The thymus tends to shrink as we grow older and is not necessarily visible as an adult. Those with MG often have thymic hyperplasia. I do.

Did you get copies of your Acetylcholine Antibody tests? If not, do. Do you know if your modulating antibody was elevated and, if so, how high. It's shown in a percentage, like 30%. The higher the percentage, the higher risk of it relating to a thymoma.

Some doctors also run the striated muscle antibody, which has also been shown to be related to a thymoma. Not always but quite a bit. You could ask your primary doctor to run that test.

Thymic hyperplasia does not mean you have a thymoma or need surgery. There are some people with it that end up having a thymoma. Sometimes it can't be seen via CT.

The decision to have a thymectomy is dependent on a lot of variables such as age. And it's a highly personal decision that needs to be made after a great deal of thought and research.

Sometimes, after thymectomy, the thymus can "grow back." That would still be thymic hyperplasia . . . of the odd kind! Like Juanitad said, it can come back.

Does that answer your question? I hope you can find a good neuro around there.

Annie

I have a thymic hyperplasia, and I was not given the option of having it removed.

It is kind of freaky that it is a gland that be removed and still find a way to rejuvenate.

AnnieB3, thank you so much, that's very helpful. I'm generally of the mindset that I will do anything that might help. I will return to the MDA clinic but also looking for another neuro. I think I may be able to find one at UMass in Worcester. My hem/onc doc is looking for me.

I have not had a thymectomy; this chest CT was to see if I might need one.

I will check on getting those test results, also. I only got a final report that said "positive." Though the MDA clinic just ran another test; haven't gotten those results yet.

Okay so I did some research and if hyperplasia is definitely the same thing as residual thymic tissue it does look as though surgery is indicated. Who makes the decision? Your neuro or a cardiothoracic surgeon? Does your neuro just refer you then they do it? My neuro is about to move to CA but I see him in a month when he returns to do one follow up.

OH I can't stand not knowing; I can take anything but hate being in limbo. I'm not sure if he'll make the call without a clear thymoma. However one of the articles I read was authored by a neuro who is at UMass, so if he is still there or has colleagues (I worked there for ten years) they should know.

Tracy,

Your doc is only going to give you a recommendation. It is going to be your decision.

In my case, I have severe, generalized MG that is very unstable and my thymus looked to be 1x3cm on 2 scans, an MRI and a CT w/o contrast. I decided to have the surgery since meds were not working to stabilize me, even at high doses(PRED) and frequencies (IVIG). When they removed it, it was actually 6x10cm!! Very surprising and very abnormal. I am glad I did it since a gigantic thymus spitting out antibodies is not going to be helpful for my MG.

It is unusual for a thymus to grow back from what I have heard and getting it totally removed via the sternum is your best bet to cover all your bases if you are really worried about residual tissue since the thymus is spread out like a butterfly and they really don't know what they are dealing with until they get in there. Doctors who perform thymectomies 3-5/year are said to be very well experienced since it is an uncommon surgery. My surgeon does 15/year and she still found mine to be surprising....

Every case is different so look at what is going on for you to help you decide...debra

Residual thymic tissue means that there is still visible thymic tissue from when you were born.

Thymic hyperplasia implies that what was there is growing. And there are different definitions of hyperplasia, different "types" of it, if you will.

So they are not the same thing. Being able to determine the difference is not so easy. But for those of us with MG, the little sucker can indeed "grow" or be hyperplastic due to autoimmune issues in our bodies.

Tracy, You may not know what the difference is. Usually you need to consult with a cardiothoracic surgeon, the ones who actually do the thymectomies. They will go over your particular history, any complications you might have, etc. Then they often send a report to your neurologist and then you can discuss it further with them.

This is nothing to jump into. You have to take a calm and reasoned approach. Surgery is no small thing when you have MG and it alone can trigger a crisis. Not to mention that the drugs used can tank MG.

I hope you can take some time to let it sink in. It's good that they didn't see a thymoma. Like I said, that does not rule one out. CT's only see so much.

Debra, there are a lot of cells in the body - especially those that are hyperplastic - that can grow back. Sad but true.

Annie

So that means, there is still a thymus there? So surgery is an option? No, not jumping into anything. I need to get hooked up with a new neuro now and all this will take time. I am having a lot of problems with Mestinon so concerned about exploring all the options. Thank you so much for all the feedback!