New to MG and scared. Questions about Thymus removal
 

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!:confused:

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

Thanks for replying Brian!! One other question for you.... After your surgery did you still have to take the meds or did they take you off of them?

I still take Mestinon and likely will for the rest of my life. My thymectomy was because of the cancer that I had (9cm tumour... about the size of a baseball give or take). I believe it was the trigger that gave me MG. My symptoms are pretty much completely controlled with only the Mestinon (I don't have to take steroids/immunosupressants or go in for regular IVIG/Plasma exchange.)

Brian.

Hi. Welcome to the forum. First, don't be scared! Many of us have had MG a long time and are fine. Yes, it does change your life but it doesn't have to define you!

An MG diagnosis can be very overwhelming. There's a big learning curve, including all the things that can make it worse like certain drugs, infections, stress, hot and cold weather, etc.

First, No one can "require" you to have a thymectomy! Did they do the CT scan of your chest to look for a thymoma (tumor of the gland)? That should come first. And the Iodine contrast they use can make MG worse. You do no have to have the contrast either. Patients need to think about these things and decide if they want to say no or not!

There is no definitive study saying that a thymectomy will make MG better or put you into remission. How old are you, if you don't mind my asking. Age can sometimes be a factor since some studies show that it's more effective on younger patients. But, again, it's your decision and needs to be made after lots of thought, research, talking to family, etc.

Mestinon is not a "cure" and only deals with MG symptoms. It is a "helper" drug. If you get worse on Mestinon only, you need to call your neuro. Were they an MG expert? What tests were positive?

What I'm most concerned about right now is the symptoms you're talking about. If you get short of breath, cannot breathe well, cannot swallow or are generally much weaker, it's time to dial 911. Don't be shy about doing that if you are really bad! You can't predict how bad MG can get or how quickly if you are really weak. Don't be scared - just have a plan in place.

Until you get a handle on this disease, you may need to pull back on activities. You also may need to nap or sleep more. Alternating activities with rest is a good idea too.

What else can we help with? MG is not a fun disease but you'll get used to it. The one thing that I hate the most is the unpredictable nature of it. I can go out one day and get weaker afterwards. Then weaker the next day and then get what I lovingly refer to as "2 day payback." ;)

Hang in there. And call your neurologist. You do NOT want to go into an MG crisis (when you get so weak it's life threatening). I wish you the best with figuring out what you want to do with the thymectomy. Brian's given you some great information.

Annie

When I diagnosed last year, I was against having thymus surgery! But, my neurologist was adamant about having it removed. He said it wasn't doing my body any good and my acetylcholine receptor count was very high. He said I would probably have the trans-sternal or trans-cervical approach. I decided I wasn't helping my body by waiting for surgery.

I kept looking for a robotic surgeon and finally found a highly recommended doctor in Houston. He said I was a good candidate for robotic surgery. I had the surgery last month and am doing very well. I was discharged the day after surgery and the 3 small scars on my right side are already fading. I would highly recommend looking into robotic surgery!! Less stress on your body and faster healing. I have more energy now and actually feel like doing home improvement projects that I haven't been able to do for years. Surgery doesn't help everyone, but my chances were 80% that I would improve.

My neuro wasn't too familiar with robotics, so I had to do the research.

Good luck!