Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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jstlitlome 10/15/2014

I just met with my surgeon this morning regarding the removal of my thymus. I do have a thymoma, but he feels like he should be able to do it with the Da Vinci Robot instead of having to put a scar on my chest. I am SOOO relieved by this you don't even know. I thought for sure the existence of a thymoma would slate me for a full Sternectomy!

He did, however, tell me that even with the DaVinci, I may hurt as much as or possibly more than the Sternum breaking because of going through the ribs. Said I would be in the hospital for at least 3 days. This all surprised me because I thought of "minimally invasive" surgery to be basically outpatient type stuff.

Anyway, I like the doctor. He has a good bedside manor and seems very intelligent and young enough that I'm sure he can run that robot like a video game. (lol)

Going to do the surgery early December. I have no experience with serious surgery and I am VERY nervous about it today.

Anyone had the Thymectomy with DaVinci? How was the pain? How long was the recovery? Any problems, or side effects?

Leslie

SeattleWriter 10/15/2014

I had a combination VATS and Da Vinci thymectomy in July (they loosened the thymus via VATs on the left side, then removed the thymus via Da Vinci on the right to maximize how much tissue they could remove. They got a good 7 inches of thymus that way!). The pain was pretty significant, and it was 10 weeks before I could return to work full time (but my recovery was slowed by steroids). I'm glad I did it, because I do notice some reduction of MG symptoms already, and am able to taper down my steroids now.

I still have some nerve pain in my chest now, and I'm not 100% back to my normal energy levels, but on the whole I think it was the right choice!

Good luck!

jstlitlome 10/16/2014

Thanks so much. 10 weeks seems like a long time, but glad to hear that you don't regret doing it. I don't have much of a choice because of the thymoma. I'm so ready for this to get over and move on, but I am really afraid of the pain. I'm a bit of a big baby when it comes to that. I am praying for remission. I have too many things that I want to do but can't. I know that many of you feel this way too.

Thanks again!

Leslie

SeattleWriter 10/16/2014

I will say that the first day out of surgery in the ICU was difficult indeed. I was hitting the pain medication pump pretty repeatedly! But after day 1, it wasn't that bad. I'd say my pain was well controlled for the duration of the recovery. If you can get through that one day, you'll be in good shape. :)

MaureenNY 10/16/2014

Hi there, I had a DaVinci and the recovery piece was not so bad. I didn't find the pain to be all that bad. I had the surgery on 7/8. Returned to sitting at my desk at home on 7/25 and was cleared to travel on 8/1. But I waited an additional week or so. Good news is the surgery itself was not as bad as I expected. I did have some post surgical breathing issues that held me back and actualy continue to plague me. I am hopeful that my energy level will increase and that the symptoms will get under control sooner vs later but I am still on the MG roller coaster. They say it takes time, i am not so patient.

To be clear. the pain was not any where near as bad as I expected. The drugs are there.. use them.. :-)

larissam 10/17/2014

I had Da Vinci in 2011. Recovery time for me was about 5 weeks and relatively pain free. Follow post op instructions to a T.

Don't be afraid to share your anxiety with everyone involved in the proceedure. I too am highly anxious before almost any proceedure and find it helpful to hear medical staff reassure me.

Best of luck Leslie.

jstlitlome 10/17/2014

Thank you all, I am feeling much better just hearing your experiences. I wish I could do this earlier to just get it over with. But before long, it will be here, and I will get to celebrate Thanksgiving with everyone this way too.

Take care all!

Leslie

SeattleWriter 10/17/2014

If you have any questions along the way, feel abundantly free to message me--I'm happy to share experiences and whatever advices I've gained over the past months. :)

One of the best pieces of advice I got while I was here was to get a shower chair to use at home while you recover. That was a lifesaver!

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