New here - looking for information about thymectomy/median sternotomy
 

Hello guys,

First of all I am sorry as I write here and I do not have MG. I am 25 years old, and I have mutliple disabling/severe conditions.
Recently, a thymic mass was discovered and surgery is recoemmended due to the unknwon nature of the mass. They cannot tell by means if radiological findings if it is a thymoma, thymic hyperplasia or another mediastinal tumor.
Given some of my new issues (extremeley painful neuropathy) a paraneoplastic syndrome could be going on which could improve after tumor removal.
Anyway, I am going to have this mass with my thymus removed via a median sternotomy.

I dont find much information about thymectomy outside the MG world, thats why I came here.

So here are my questions and I would be very gratfeul if I could get some answers.

1. how long does thymectomy via sternotomy usually last? I was told something about 1-2 hours - is this true?

2. most important: if you felt improvement of your MG symptoms after surgery - how long did it take for you to notice first improvements?
And how much have you been improving after surgery overall?

3. was there any problems with your GI system/intestines? as I have a severe intestinal dysmotility disease this question is quite important as well.

Thanks so much.

Sarah

Hi Sarah,

Welcome and don't be sorry about posting a question to a group that's most likely to be able to answer you.

1. I have no idea how long the surgery actually lasted. I was put out at 9ish in the morning and didn't fully wake up in recovery until around 7pm. I'd not be surprised to hear it was a couple of hours though. They've got to cut the bone, remove the thymus and any masses they find around it and then wire up the bone...

2. I noticed very rapid improvement in some symptoms and very slow in others. Two years later I'm still seeing some improvements.

3. not me, sorry I can't help here.

Cheers,

Brian

Hey Brian

thanks so much for taking time to answer my question. Can you specify the answer above? did those symptoms you had suffered from quite long (3 years + ) improve slowly and pretty recent symptoms (1 year) improved rather quickly?
What do you mean exactly with "rapid improvement"? are we talking amout a time frame immediately after surgery?

thanks so much again!

My symptoms were all relatively rapid. I was about 6 months from the first onset of any symptoms to having a thymectomy. In my case, I had a thymoma about the size of a softball. My oldest noticeable symptoms recovered fastest; but none of the symptoms were noticeably present for very long before I had my surgery.

First symptom noticed was slurred speech at the end of long days of working overtime ... and this one was the quickest to recover. An almost atrophied look to my tongue cleared up entirely and immediately (within days of the surgery). My eyelid droop mostly cleared up right away (as in within weeks of the surgery.) This hasn't cleared completely yet but it isn't bad enough that anybody who didn't know me would notice any longer.

I'm still noticing improvement in larger muscles as time goes on. I don't know how much more improvement to expect two years out from the surgery, but I'll take every little bit I get :)

Brian.