thymectomy survery
 

1. Who has had one?
2. Was your thymus enlarged or have a tumor?
3. did you have DaVinci
4. did it help?

Just met with surgeon... CT scan shows normal, although he says that it may not be. Just trying to decide if I should have it removed or not....it would be daVinci. No huge rush unless my symptoms take a rapid turn for the worse.

Thank you all!!!
:):):)

What is DaVinci?

thymectomy survey
 

i have not had surgery, ct showed no problems, however, im 75 yrs old and i don't think it is highly recommended, for my age.
once neuro say no problems, it was not mentioned again.

FREDH

Only saw the neuromuscular specialist 1 month ago. Ct scan was normal of thymus. I want thymectomy anyway- best chance of a remission. I will discus it at the next visit in July. They would go in through the ribs. I will let you know how it goes. I am not comfortable staying in my limited capacity for the rest of my life.

kathie

thmectomy
 

I had the robotic thymectomy done in December 2011 in Chicago. I had an enlarged thymus, no tumor. I am seronegative, so the docs honestly left it up to me to decide, as they didn't really have the research to back up that it would work for me. To my understanding the statistics on success are generally from those who test positive for the antibodies.

Anyway, the surgery went fine, I was in 4 days instead of 1-2 due to breathing tube stuff, and back at work in 2 weeks.

18 months later, I am a bit better with my MG, but I tend to give credit to my meds rather than the thymectomy. I'm on prednisone, mestinon, and imuran. I have mild-moderate generalized MG which began in 2009, diagnosed in 2011, with ocular symptoms starting about a year ago.

1) ...raising my hand
2)....thymus appeared normal
3)....I had a sternotomy (there are other names for this method)
4)....I "believe" it did :)

Hello Celeste, "DaVinci" is a robot...:eek: :D

thanks...I am 48, but I have children that are three and six years old..I need strength!!!

Dr. is leaving it up to me. I tested positive for MG...started as occular and we were on old ....6 months after occular started...generalized appeared. I want to nip this as soon as possible, but don't want to have surgery that won't help. Dr. "SAID" ....2/3s of MG patients in my stage get better. But, I also wonder where in the world he got this number/stastic?????? The DaVinci seems pretty "easy"...but, as I said....I have two little kids and don't want to have a surgery that will disable me for awhile and in the end...do not good....

Just a tough decision.....:(

I so appreciate any and all advice I can get from all of you!!! THX:)

what is sternotomy....how does that work??? DaVinci is a robot that goes in with dr. assistance to remove thymus. thanks!!!

a dr. with a robot does the removal of the thymus...less invasive.... less healing.

1. Had mine at the age of 51 1/2, 9 weeks after first MG symptom (ptosis).
2. My CAT scan showed hyperplasia but size not known.
3. Had full sternal thymectomy, not many cardiothoracic surgeons in Orlando will do Davinici/robotic. My thymus was 9 1/2 cm by 9 1/2 cm, very erratic shape, no thymomas.
4. Ptosis disappeared within a couple of weeks, stopped Mestinon a few weeks later, and have been symptom free every since.
I've met a couple of people whose CAT scan results were a bit different than the surgery result. (One of the men I met at a local support group had his out this past February, his thymus was 11cm by 27 cm, twice as big as CAT scan showed).
My sternum pain was easily controlled with painkillers. I was in the hospital post surgery for 4 days, would have been out in 3 if I hadn't developed heart arrythmias which went away a couple of weeks later. The worst part of recovery, for me, because of the sternum pain, was not being able to sleep on my side.

Sternotomy is where they crack your breastbone (or sternum) and open you up - just like open heart surgery.

1. Yes
2. Malignant tumor - Stage II - FYI, scan didn't show any problems with thymus.
3. Sternotomy
4. Hard to say if it helped or not - was under a lot of stress at the time and had to go throuh radiation, etc. Am doing okay now with other meds, but it has been almost 8 years.

Good luck - it's a decision only you can make.

Yes, I had a full sternal thymo-thymectomy in April 2012. Long story short, went on an out of state vaction July 2011, wasn't feeling well and had difficulty catching my breath. Thought it was bronchitis. (I did not have any MG symptoms). ER xray showed a large anterior mediastinal mass the size of a navel orange. Thoracentis also performed to remove 470 ml of fluid from my lung. Drove back home and was referred to a local hospital and had a biopsy Aug 2011. Results of biopsy after 5 weeks of waiting was an 'chronic, smouldering inflammatory mass' of unknown origin;not lymphoma or thymoma. Decision was to 'watch and see what it would do'. December 2011, presented to ER of a different hospital slurring words and could not control my right hand. Admitted and diagnosed in hospital with MG. Had plasmapheresis done pre-surgery. I had a 11.5 x 13.5 thymoma removed along with 20 lymph nodes. No cancer detected. Left phrenic nerve also removed because mass was wrapped around it. I still have bad days mixed in with the good. Would my bad days be worse without the surgery? I don't know for sure. I am very glad that I had the surgery. The recovery was humbling, but I felt well enough to go back to work full time at the end of a 5 week recovery period.

From all my research, I have always been very decisive that I want a thymectomy. From reading these post, I am more convinced than ever that I will insist on a thymectomy.

Thanks for all your feedback, it has been invaluable

kathie

I am in Orlando too (Maitland):)... Who are your doctors? I am seeing Dr. Boyer to possibly do the surgery. He said they haven't been doing it very long. My neuro is Dr. Isa in Maitland. Thanks for the encouragement!!!

My neurologist is Dr Jacobs and my cardiothoracic surgeon was Dr Alan Johnston at MD Anderson, ORMC. I'm not sure if he is currently practicing, he went on sick leave shortly after my surgery. He was great, I'd highly suggest you see him if he's still practicing.

I had a thymectomy a year ago with VATs surgery. I had a thymoa which had opened up and I was advised to have radiation which I did. I started at 75 mg of pred and now tapering down to 10mg. I am relatively symptom free (so far). I haven't taken mestonin for nearly a year. So far so good! :)

Same here.
It's normal but I'm a patient in "that" group; young, female, anti achr.
So some docs say it's no use because it's normal, others say it's a good thing to try since I have severe mg and tried many other things already.
Me, I'm still not sure. But, to be honest, I'm way to afraid to do it.

They can't say for sure it will help. And because it appears to be normal (small, no hyperplasia or tumor) on scan's there's no harm in leaving it there (I mean, it's no cancer). And, I have multiple other health problems so surgery is crazy scary for me.

I hate some docs give me the feeling I "haven't tried it all" or something, just because I don't want it. Not just yet anyway.

Good luck with making up your mind!

If I had the option of going through a surgery that would cure me, I'd do it in a minute. My doctor has shown no interest in it since I don't have a thymoma.

I had a sternotomy in 2009. After 12 days of progressive symptoms, I ended up in the ER. An X-ray showed a large mass in my chest, then a CT scan indicated that it was a large thymoma. Next came a MRI which showed a thymoma that was so large it was attached to my lung sack on one side and my heart sack on the other. There was no question I was headed for surgery.

I really don't remember much of the time frame that happened. First because once they said chest surgery I have to admit my brain shut down, and then I not only have MG but also SPS so removal of the thymoma hasn't helped my physical condition. I have never been in the hospital in my life at 54 years old. I do remember that I was in incredible pain after surgery to the point that the nurses told me I was using the morphine pump too much which you can't do.

Also because the thymoma was so large it was considered a stage 5 which is almost always cancerous. They had not completed the pathology report nor had I recovered from the surgery when they wanted to start radiation treatment. Thankfully my husband would not allow that until a full pathology study was finished. It was not cancerous after all.

All this to say if you decide not to have the surgery now, please keep a check on your thymus gland to make sure it doesn't start growing. Mine seemed to have grown in such a short period of time. I have had a physical every two years which included a chest X-ray and it has never shown anything questionable.

Good luck.

Southern Bell
:grouphug:

1. Me
2. Yes, tumor
3. No, thoracic surgeon was not confident he could get it all with a minimally invasive method. We discussed it, he said that while he is on board with the robotic method he felt the right decision in my case was a full sternotomy.
4. Not sure. It certainly needed to be done in my case (tumor the size of a softball). I believe my ptosis is not as bad, my bulbar symptoms are definitely not as bad. I have advanced to a more generalized MG since (but my MG is still very well controlled by mestinon only.)

Good luck in making your decision.