CT results
 

I had a CT scan yesterday. I had been drinking water but guess I was still a little dehydrated due to diarrhea and they had a hard time with my veins. The first time when starting the contrast it started leaking into my arm. The second time it went OK.
My neuro called me this morning and said I have a tumor on my thymus and is referring me to a surgeon. Not sure how to feel. The chances of remission sound good but not looking forward to the surgery since it would be the more invasive due to the thymoma.
I'm going to research to see what I am in for but has anyone else on here that has gone through the Trans sternal Thymectomy that can give me some insight?

Sorry you are going through this. Keep focused on the good statistics showing improvement and remission after thymectomy. Let us know what surgical approach they decide I will be sending some prayer your way.

kathie

Perrym, Wow, that must've been hard to hear that you have a tumor. I'm sorry you are dealing with this.

In some people, when the tumor is removed, the MG goes away. Although, there have only been a few incidents of that recorded. I hope you are consulting with a hematologist/oncologist, too, about all of this, and coming up with a post-surgical protocol. You might need some sort of radiation or chemo. They have to biopsy the tumor first, though, and "stage" it.

http://www.jthoracdis.com/article/view/890/html

I hope you have a good support system. This is a lot to take in! Hey, you have MG. Hey, you have a tumor. Geez.

What else can we do to help? Are you confident in your knowledge of MG?

I did not have the thymectomy, so I can't help you there. Obviously, when there is a tumor, they often want to split you open! ;) Imaging such as CTs help but actually looking around in there to make sure they get it all is essential, too.

http://onlinelibrary.wiley.com/doi/1...nticated=false

http://www.nmh.org/nm/chest-treatments-thymectomy

I hope that the surgery goes really well, and that your recovery is quick. There are a lot of past posts on thymectomies here, and a lot of great advice from everyone on them.

:hug:
Annie

Thanks for the replies. I have an appointment with a surgeon Wednesday. I plan on asking expected tiime for hospital stay, recovery. Also how many thymectomies he has preformed. Anything else I should ask?

I had the full "split your chest open" (sounds gross doesn't it - but I can never remember the correct name!) to remove my thymus in 2005. I had a malignant tumor and was glad I had it done that way. It wasn't any fun, but it wasn't the worst thing I've ever gone through either. My mg affects my breathing quite a bit so I was in ICU for about 4 days after surgery and in a regular room for a couple more days. I was out of work for 8 weeks, but probably could have gone back at 6 if I hadn't been going through radiation. Didn't have to have chemo because they got clean margins when they removed the thymus which is the greatest benefit of having the full surgery, especially when you have a tumor!

I used pain meds for about 2 weeks, but was fine after that. The hardest thing was raising up from a lying position because until the bones knit completely, they kinda rubbed on each other. Again, nothing I couldn't handle, just a different feeling.

When you talk to surgeon, I advise asking a lot of questions. My surgeon was mainly a heart surgeon and I don't think he had ever removed a thymus. However, he did a good job and I am fine today. I never did go into remission, but at my age (55 at time of surgery), I didn't really expect to. My understanding is that the younger you are when you have the surgery, the better chance of remission. However, I was in a fast downward slide with the mg when I had the surgery, and I am doing much better today, 9 years later.

Good luck with your decision.

Juanita

Thank you all for the replies and support. My wife is more worried than I am especially when she found out about splitting my chest. We also care for my Mom who has dementia but my best friend for close to 30 years said he will rally the troops to give what ever support we need.
Thanks, Perry

Ask about his surgical approach he will take and expected treatments ans medications afterwards.

Good luck
kathie

I had a thymectomy in February and my surgeon used the VATS procedure, which is one of the least invasive procedures. From my research there was no evidence I could find that made a case for one procedure over another.

I had my surgery on a Thursday morning and was out on Monday morning, but could have been out sooner if I didn't have some weakness issues that required an IVIg treatment and return to the ICU after leaving it the day after surgery.

I'd inquire in the different methods and understand why your surgeon prefers one over the other. There are lots of videos on YouTube of the various procedures you can check out.

For reference, I had a 5 cm thymoma that was tangled around my phrenic nerve that had to be cut, which required some extra work to push my diaphragm down on that side as to not interfere with my lung function.

Good evening!
I had a trans sternal thymectomy 2+ years ago, no thymoma but my thymus was enlarged (9cm by 11cm).
You're going to hear and read all sorts of opinions about thymectomy procedures. If it were me and I possibly had a tumor I'd want to be opened wide to make sure they see and get everything (yes, I know the less invasive methods are supposed to be just as reliable.)
I have not had any MG symptoms since a couple weeks after surgery and haven't taken any meds since then. I am a 53 year old female.
Yes, it hurt, but the pain meds did their job. For me, the absolute worst part of the recovery was not being able to sleep on my side for 9 weeks due to the sternum pain, but that also varies from person to person.
I'd be happy to answer any questions you have about the surgery either here on the board or message me.

I was actually disappointed that my thymus CT did not show any abnormalities. I was hoping for a surgical cure. I really hope you find your cure in this.

My appointment with my surgeon is tomorrow afternoon. Thanks for the advice on questions to ask. I have also been seeing what I can find about about him ahead of time. He specializes in Thoracic surgery so that is a plus. I have also been reading that he has a great bedside manner. What concerns my wife though is his age. He graduated med school in 1964. I haven't found anything negative on him. everything has been good. Will know more tomorrow.

With age comes experience. My thoracic surgeon was in his late 60's and had done many trans sternal thymectomies. For me, bedside manner is very important in a doctor, not everyone feels that way.

Had my appointment with my surgeon yesterday. He has performed many Thymecotmies. He says he will only need to open up the upper part of my chest after reviewing my CT results. I feel very at ease with his abilities. Should have an actual date soon but should be around 2 1/5 weeks.

Good luck Perry. I'm sure it will work out well for you.