I just had a really inconclusive visit with my neuro. I asked about a thymectomy, and he said, pretty much, I can have one if I want. So? How do I decide? I appreciate it that he's not paternalistic, but I would like a bit more guidance here.

I'm 46. I understand they work better in younger patients. I've had myasthenia almost three years. I understand they work better in the beginning.

I don't want to have my sternum split. There's a surgeon in the area who does them robotically, but sometimes he starts and discovers he can't do it that way, so he splits the sternum. My neuro says I can talk to him and see if he's willing to just wake me up if it can't be done robotically, but he says "surgeons don't like to do that."

My impression about thymectomies is that in the absence of any pathology of the thymus (mine's normal) the jury is out on the effectiveness of the surgery. I'd welcome thoughts and information.

Abby

Can you get a biopsy of your thymus tissue done (or have you)? find out if you have hyper-plastia? My understanding is that unless the thymus is hyper-plastic you'll not see any improvement from a thymectomy.

Brian.

I thought thymic hyperplasia was something the CT-scan could reveal.

Abby

Some relatively recent research is showing that you can have micro-hyperplasia... that is small areas inside the thymus are hyperplastic but the thymus mass doesn't show itself as being hyperplastic. I don't know if this can be located via CT scan or not.

http://chestjournal.chestpubs.org/co...3/847.full.pdf

Brian

Very tuff decision to make. I had a Thymoma removed in '94 and again in '99 both split sternum and I can tell you it's no fun. At the time I did not have MG so removal had no affect on me, I ended up with MG anyway. Unless your symptoms are quite severe you might want to just let it be. Robotic removal though is less invasive and might be worth a shot. Tuff choices.
Al

Abby, I don't think any of us can say one way or the other. There's so much more to consider than your MG. Surgery is very stressful on the body. Some people can get another AI after it.

Do you have enough support for the recovery time it takes?

I could point to this study or that one but the fact is that there is no definitive answer to whether or not a thymectomy will help. Most studies do say that a thymectomy in someone younger and done within the first year of the disease tends to be more successful.

I know you want to get better but at what cost? Only you can answer that.

Good luck with the decision.

Annie

Tricky decision. My husband is a high school teacher, so he's home in the summer, so now would be the time. These decisions are so hard to make. In the end, it's a gamble. I'm almost at three years, and I'm 46. Those are not in my favor. But I'm female, which is, and my symptoms are relatively mild. My doctor says he doesn't have an info on the effect of thymectomy on atypical MG, and he seemed to think that's relevant info. On top of it all, I'm still questioning my diagnosis. Brother.

Thanks for responding.

Abby

I had my CT scan the 2nd week in November at which time my thymus was "mildly hyperplastic", but apparently big enough to have it removed. At that time I was only 3 weeks post 1st ocular symptom. When it was removed transternally on December 20th, it was 4 1/2" by 4 1/2". I would assume that it didn't grow that much in a month, it's just that the scans are not always accurate. As for pain, yes it hurt, but the painkillers did their job to make it manageable. The worst part was not sleeping on my side for 10 weeks. One month after surgery my ocular symptoms went away, and I stopped the mestinon about 2 months later.

I was 50 at the time of surgery and I'm female. Oh and the CT scan showed no thymoma as did pathology report after the surgery.

Get a 2nd or 3rd opinion???

My surgeon wouldn't have done the robotic anyway, doesn't like it because he doesn't know how big and involved the thymus is until he gets in there.

I would say go for it if 2nd opinion Dr okays it.

OK, I have come to a tentative decision. I think it is reasonable for me to have a thymectomy if it can be done transcervically. I do not expect it to cure my MG, or even to put me into remission, but there is a good chance that I will see some improvement.

One reason there are no conclusive studies is that "remission" means different things to different people. Some define it as no symptoms and no drugs. Others define it as no symptoms with continuing drugs. But it seems clear that there is good reason to hope for improvement, even for an older, seronegative patient who's had this disease a while. No guarantee, but reasonable hope.

I am going to see if I can meet with the surgeon and ask him:

1) Will imaging studies before the thymectomy help you determine whether mine can be done transcervically?
2) Are you willing to go into this with the agreement that if you begin and find that it can only be done transsternally, you will abort the procedure? For me, the transsternal thing is a deal-breaker.
3) Can this be done with some sort of anesthesia that doesn't involve muscle relaxants?

If he says yes to all three, then I think this is a reasonable gamble for me. I don't expect a remission, but the level of my symptoms right now is such that a noticeable improvement is all I need to live pretty normally. I'm going to call my neuro now and ask for a referral for a consultation.

Thanks, everyone, for talking this out with me.

Abby

Regarding #3 - I'd not worry about them using muscle relaxants so long as they can assure you that you're out before they go in. They can do this easily, they just need to know before hand.

Brian