Hi kimber- i had a thymectomy on aug 23rd - transsternal.. My cardio thoracic surgeon said that he would refer me to a robotic but he felt with the open chest surgery he would get the thymoma and surrounding tissue.my understanding is that it is important to get the tissue to minimize the chance it could grow back. I did TONS of searches. If you have time, you can find lots online,but it is time consuming. All the best to you on this journey.

Kimber,
There is ongoing research about the value of thymectomy and prednisone versus prednisone alone in patients with MG.

elinora found this article in Brain about "seronegative" patients.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442426/

It seems that not only do we respond to treatment like AChR+ patients, but our thymic pathology is similar as well. That thymectomy is at all indicated in seronegative parients without thymoma has not always been believed to be the case.

I have waited so long to be diagnosed and at 66 do not particularly want to go through any long recovery period when I could be doing other things, so I hope my MG will be stable enough for me to at least wait until the data is in. Then I will consider CT of the chest (which I have not had) and possible robotic surgery (because of the shorter recovery time) but those may not be the best options for you. (Then there is binia who had the sternotomy and was posting from the recovery room, only slight exaggeration).
b.

I do have an enlarged thymus but not a thymoma. I will not go through a sternotomy unless there is absolute proof that my odds of going into remission are significantly greater than that of using a robot and going the less invasive and faster healing route.
Kimber

Kimber,
If you have an enlarged thymus, thymectomy if definitely worth considering. Scans don't always show thymoma.

Wish I could point you to an easy to understand article but they are all full of terminology I don't understand so I just muddled through them. I don't save all of the articles/abstracts I read on the subject but there are more and more cases of thymectomies performed on seronegatives.

Meeting with a competent throacic surgeon who has performed many thymectomies will help explain the differences and pros/cons of both types of surgeries. It might help you with your decisions.
Wish there was a definite and easy answer.

I had a modified transsternal thymectomy for thymoma.

hugs
sherry

Consultation is a good idea. One more source of info.

I just was reading some information at myasthenia.org and they are looking for mg patients across the country for a study they are doing on thymectomies. Maybe a phone call to them could provide you with some of the information you are looking for.......Stacey

Stacey,
Like so many studies, those of us who are seronegative "need not apply." You are in our seronegative, too, as I recall. However, there may be someone there with some suggestions as where to look for more information. It's a tough decision and all input is welcome.
b.

as a former computer scientist in medical research, I would highly recommend a robot do the surgery. Those humans might have been out at the bar for a late nighter (you do watch Grey's Anatomy?) and have shaky hands the next day, whereas a robot is the model of good behavior:-)

Actually the advice I have, as an insider in the medical world, is ask the surgeon how many robot assisted thymectomies he or she has done. You want to be number 20 or more. I watched the docs learn laproscopic appendectomies back in the 80s--and practice does make perfect.

Also go to the best and biggest medical center you can find. I had a knee replacement at Mayo Rochester in March and of the many surgeons who do knees, I got the one who specialized in doing right knees of 65 year old men who had damaged their knee in falls from a roof after having previously torn the ACL skiing....

Joking aside I did get assigned to the doctor who did the most complicated cases--and he did it perfectly even though I had a lot of complications from a severe injury a few years earlier. Experience is important for surgeons.

I had the robotic procedure done in November of last year, then dx in January of this year with MG, seropositive. I've maintained very low doses of mestinon & cellcept all year.
Could the outcome have been different for me had I been diagnosed with MG first?
There are so many variables with snowflakes I had to step away months ago from all the research.

I quickly recovered from my surgery; was home after 3 days, so that was certainly a plus. Like Russ I wonder & always ask the surgical team what they did the evening before. They look at me like I have 2 heads.

I'm sorry to hear you are getting worse Kimber. Seeing the thoracic surgeon does not mean you have to agree to surgery but they may be able to provide you with additional answers.
Take care.
Larissa

I did look into the study. The reason they are doing the study is because the study group feels that All currently published studies have serious methodological flaws that prevent definitive conclusions regarding the benefit of thymectomy..
BWeeds is mostly right about seronegatives need not apply. They will take us on a case by case basis if there is other definitive documentation of MG. They want EMG, SFMG etc. as proof.
There is a testing site a few hours away and I seem to fit all of the criteria. Let's see if they call me back.

There is one caveat. They will randomly assign you to one of 2 groups. Thymectomy with Prednisone or just prednisone. They will give you time to think it over and agree. They just didn't mention if the thymectomy was sternotomy or robotic. The follow up is 3 years. This study will provide some good data for us. It is a worldwide study. That should allow for differences in geographical location and other factors.
Kimber

Kimber - I'm afraid the sad truth is that they just don't know if how much it will help you. There aren't enough cases logged to make a definite decision. It sucks for those of us who want some proof before going through a potentially difficult surgery, but you'll just have to go with your gut.

As B mentioned, I had a very easy time with a partial sternotomy, compared to what I was anticipating. You just never know how you'll do, and how much it will help. Hugs!

One more thing... Some of my symptoms went away right away,and now 7 weeks later, I have to remind myself how I too was getting worse by the day, especially swallowing and breathing. . Everything I had read said I would get worse before better. Maybe that is to come, but I can swallow, breathe and lift my head. Just food for thought as you go through your decision process. I wish you well.

P.S. apparently my thymus was exploding with antibodies, and now it's not. Hugs to you.

Kimber -- there are no reliable statistics because you can't do a double-blind study. How do you give someone a placebo thymectomy?

I had the full sternum, but I have a feeling if my hospital had the da vinci robots, I would have had the da vinci robot surgery. I was told they needed to get in there and get a good look around for any stray thymus tissue. So I got the whole thing, was split like a codfish, and still have pain in the sternum from my staples.

Is the da vinci robots better than the full sternectomy? Who knows -- but I will bet you that if your hospital has the da vinci robots, you will get the da vinci robot treatment, as the hospitals needs to pay for them! And if your hospital doesn't have the da vinci robots, you will get the full sternectomy, because your hospital doesn't want to lose you as a customer!

But, of course, when it comes time to make these decisions, your typical MGer is at their weakest. I was in no position to advocate for myself -- and the whole thing happened very quickly. Was I going to rise up out of my hospital bed and drag myself out the door in protest? I was anxious that my surgeon liked me, and saw me as a human, so perhaps they would be extra careful when I was under the knife. I was also anxious to get it over with. It's in the past now, so I don't worry about my decision, such as it was. ~joe

Oh, I see bweeds posted the link I was about to post. It's all so difficult, isn't it? The doctors should seem like our partners. Not like people who have power over us and withhold information. I'm sorry you are getting worse.