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

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

Okay Abby, I'm going to be a bit of a wet blanket on the thymectomy idea.

You have a bunch of symptoms that align well with MG. But you also have many that do not. Until you have investigated the ion channel stuff that was mentioned in another post, I would suggest the invasive surgery (without guarantees) can wait. It can always be done later.

Perhaps it is time for you to seek another opinion - from yes - another neuro. Perhaps someone who has experience with channel voltage irregularities. At least consider that your episodic weakness is the major limitation on your life - - and ask yourself if it is likely to be positively impacted by a thymectomey?

I don't mean to offend...but I can't help thinking that there is more to discover before any kind of surgery.

If I have offended you, please accept my apologies in advance.

I kind of agree with Suev. It has always been my understanding that t-ectomy only works in ACHR positive MG.

As for the surgery itself, why would you want to do the transcervical when there are VATT and robotic surgeries available? Transcervical, altho not sternum-splitting, is quite painful and has a fairly long recovery period as well.

There is no general anesthetic that doesn't involve muscle relaxers to my knowledge. They must have you paralyzed so they can work, especially during chest surgery, when the lungs must be absolutely controlled while they work.

I think a new set of eyes (as in neuro) on the situation is a fine idea. You are being burdened with way too much of your treatment plan being left up to you.