Quote:
Originally Posted by Bombastic32
Hello everybody!!
I was diagnosed with MG back in April. Since then i feel as if I have had every test and procedure done under the sun!! I was put on Mestinon and it seemed to work the first week but my eye is back to drooping and the fatigue comes and goes. It is very disturbing when your speech starts to slur or your hands aren't working the way that they should. It started with just double vision but it seems as if the other symptoms came immediately after I was diagnosed. After my appointment on Friday, I was told that I need to see the surgeon to have my Thymus removed. Do they really have to cut your chest open like open heart surgery. I was fine until i was told that and that I may have a scar in the middle of my chest. For you all that have had this done....how do you deal with the scar? How was the surgery? Is it a long scar? How is recovery? And how were your symptoms after surgery.
HELP.....very scared and looking for answers
Thanks!  |
I've got the scar. I deal with it by ignoring it, it is just a scar and they needed to cut me to get the thymus out.
There are three ways they can do it that I'm aware of.
1. full sternum split (like open heart surgery) - this is what they did to me because I had a tumour in my thymus that was too large to get out any other way and they wanted to be certain they got all of the thymus tissue out.
2. Partial split - they still break the sternum but not all the way down
3. "robotic" - this is a minimally invasive procedure where they go in between your ribs and pull out the thymus thoroscopically. It makes a much smaller scar but there are lots of reports of people having to go back again to get the thymus removed again where some tissue gets missed.
So, for me I had the full split. The recovery went well with about 6-8 weeks recovery time. It hurt (of course) but it was manageable with the drugs provided. I took morphine for the first few days post-op, tylenol after that and nothing for the pain after about a week. My scar is the full length of my breast-bone.
My ptosis (eye-droop) cleared up 90% immediately after the surgery. Four years later, I still have a bit of the droop in my left eye. Speach issues (marble-mouth) cleared up probably within a month or so. I have a raspy voice now when I get tired, but nothing like the marble-mouth I had before the operation.
Now for my standard warning: no matter how they go about taking the thymus out for you, make sure your anesthesiologist knows you have MG. There is an order to the cocktail they put in you to put you out, make sure they know to have you out before the muscle relaxants go in. It is quite unpleasant if they get the order wrong.
Best of luck. Don't be worried and don't let a line on your body put you off getting the right treatment. Scars that you can hide under clothing are nothing. Feel free to shout any other questions.
Cheers,
Brian