should I have a thymectomy?

suev · 05-30-2012, 02:56 PM

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.

4-eyes · 05-30-2012, 03:28 PM

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.

Stellatum · 05-30-2012, 04:01 PM

Thanks, suev and 4-eyes. Oh my gosh, certainly no offense taken. I greatly appreciate the input. I guess it makes sense to look into the ion channel stuff. I think I was assuming that the testing would be inconclusive, even if they caught me during an episode.

I didn't realize that transcervical and robotic were different. I'm pretty sure my neuro said that the surgeon in the area does them robotically. So, that's good.

My neurologist leaves all the decisions up to me. He runs down the list and tells me the pros and cons. Actually, he tells me the cons. So the decision always seems to be just leaving things as they are. Which isn't necessarily the wrong decision...

Anyway, thank you both. I will keep thinking. Maybe I'll ask my neuro to either investigate the ion channelopathy idea or refer me to someone who will. When I was undiagnosed, he sent me to a different neuro in Boston, who diagnosed me, so we've done this before.

Abby

Juanitad · 05-30-2012, 05:33 PM

On #2, my thinking would be the opposite. If he starts the less invasive procedure and finds your thymus is so large or spread out, etc., he needs to do the sternum route, I would want it out even more because I might gain more benefit from having it removed. Just a thought!

Stellatum · 05-30-2012, 06:22 PM

Quote:

Originally Posted by Juanitad

On #2, my thinking would be the opposite. If he starts the less invasive procedure and finds your thymus is so large or spread out, etc., he needs to do the sternum route, I would want it out even more because I might gain more benefit from having it removed. Just a thought!

Hmm...that makes sense, and I have a feeling that the surgeon will not be willing to agree to the "just wake me up if you can't do it robotically" idea. But ho boy, I really don't want to wake up to find I just had a sternotomy, especially because of what it might do to my MG.

I am reading some more about ion channelopathies, and it looks like if there's a real possibility that I have some form of periodic paralysis, anesthesia could be very dangerous for me.

Abby

schavarria · 05-30-2012, 09:54 PM

Hi Abby,
I had a robotic thymectomy back in December, 6 months post diagnosis via SFEMG and 2.5 years post symptoms start. I am seronegative. I too asked if they could abort the operation if it turned out they couldn't do it robotically. A nurse told me that they would only change to the transcervical method if it became a life/death situation, and that she only recalled it happening once in the previous 5 years or so. I don't feel improvement from the surgery yet, and have actually added imuran since then. My neuro in Chicago told me that most research done on the effectiveness of thymectomy is done on antibody positive folks and so might not be reflective of seronegative patients. I was in hospital 4 days, at work after 2 weeks, could've used more rest but oh well. Best wishes to you!

Quote:

Originally Posted by Stellatum

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

TexasRose · 05-31-2012, 07:06 AM

I am 52 and have mild MG for probably years, but was diagnosed last year. Don't let age stop you from considering surgery - you're as young as you'll ever be!

My surgeon also told me he would try (robotically) via the right side, then the left and and if that didn't work, do the surgery via sternum. I didn't have a thymoma (according to CT scan), but the thymus was slightly enlarged when he took it out. I have a DVD of the procedure, so I can see how he removed the whole thymus at one time. It is amazing what they can see via robotics; it is magnified x 10 and the robotic arms make the surgeon's hands more steady. I would recommend at least talking to the robotic surgeon.

Everyone is different (of course), but my neuro thinks most people with MG should have a thymectomy because it can cause so much trouble down the road. I put it off, but decided I would have surgery before I got weaker.

Stellatum · 05-31-2012, 03:07 PM

OK! I am very pleased with myself and grateful for everyone's help. I just talked to my neurologist and I told him I didn't think I have emphasized my "episodes" enough--how they come on quite suddenly and how severe they are. I explained that they're really becoming the salient feature of my illness. And I asked him if he'd be willing to look into the possibility of ion channelopathies, at the very least to set that possibility to rest before I have a thymectomy. And he said yes. He said that he doesn't think they present with the SFEMG results I got, but he'd talk to his partner and look into it.

Abby

Brennan068 · 05-31-2012, 05:23 PM

Quote:

Originally Posted by Stellatum

OK! I am very pleased with myself and grateful for everyone's help. I just talked to my neurologist and I told him I didn't think I have emphasized my "episodes" enough--how they come on quite suddenly and how severe they are. I explained that they're really becoming the salient feature of my illness. And I asked him if he'd be willing to look into the possibility of ion channelopathies, at the very least to set that possibility to rest before I have a thymectomy. And he said yes. He said that he doesn't think they present with the SFEMG results I got, but he'd talk to his partner and look into it.

Abby

Good on you chasing down this possibly Abby. Hope you find the answer you're looking for.

Best.

Brian

TexasRose · 05-31-2012, 07:26 PM

Mine was done without muscle relaxants.

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