Has anyone had a thymectomy?
 

I am having a CT scan next week. If you have experienced a thymectomy, could you please walk me through your CT scan and f/u visit and onto and through the surgery. Thanks a lot!

Thymectomy
 

My experience, and my opinion.

The CT scan is looking for an enlarged thymus (hyperplasia) or a thymoma (a tumor or mass in the thymus)

The CT scan is quick and painless. Results will be sent to your neurologist. If it’s determined to be abnormal, you will be sent to a cardio thoracic surgeon. Each surgeon has their preferred methods - trans sternal, trans cervical, and robotic. Each method has obvious different pain and recovery times.
A lot of information Is going to be thrown at you, most of it medical gibberish. Bring someone with you to absorb the info you’re given. Ask a lot of questions, research as much as you can. And it’s ok to feel overwhelmed and scared.

I had my trans sternal thymectomy 7 weeks after my first symptom. Luckily and blessedly, my symptoms went away about 3 weeks after my surgery and 7+ years later I’m still MG symptom and medication free.

More importantly, please try to remember that while online in MG support groups, you are reading about many MGers that are struggling and very symptomatic . You aren’t going to be reading about those that are doing okay because they are not going to be searching for help and support online. It took me quite a while to realize this. (Hope that makes sense).

Lisa

My CT is scheduled for Tuesday. Very mixed feelings between wanting something "fixable" and not wanting surgery.

My suggestion is take your time and keep asking questions until you are satisfied. There's also time to make your decision if you want to walk out of the doctor's office and ponder it.

Thank-you Lisa. Excellent response and most helpful!:hug:

I had a thymectomy in 1976 at 16 yo. My ct scan showed a tumor in my chest that the doctors recommend removing. I was one of the first people diagnosed with MG using the tension test. The recovery process is long, but with God you will get through it.

I am now 58 and still on mestizos and prednisone. My f/u's with neurology are about every six months and I still get regular ct scans to make sure the tumor hasn't returned because it is a possibility. My scar from the thymectomy is from the breastbone down to above my stomach, not very attractive but I've had it so long that it's become a part of me.

All my prayers are with you.

I did not have an enlarged thymus, so on to meds and IVIG infusion. I've had my loading dose 100Gms x2 days and my first follow up infusion of 100Gms. I guess it will take about 6 months to see how I will sort out.

I had my Thymectomy 11/28/18
My first symptom of Ocular MG 5/13/18
I was tested positive in August 2018.
They originally thought i had a stroke.
After my diagnosis, CT scans showed
no abnormalities on my thymus gland.
I was then prescribed Mestinon for the
symptoms and finally referred to University
of Kansas medical center. (They have
specialized & studied MG.). There I was further
Prescribed prednisone & referred for a
Thymectomy. Although i am only a week
out of surgery, I am feeling better & feel
As though this was my best option for
remission.
Good luck !

If your Thymus was not enlarged then why on earth did they subject you to that surgery?!!!! I am confused.

Because the latest research ( New England journal of Medicine ) indicates surgery gives you a 70% chance of putting MG in remission. After meeting with a team of doctors who are on the cutting edge of this disease, this
was the best option for me!

Awesome information! As a retired surgical nurse, I would not want to go through a thymectomy unless absolutely necessary; but I'm going to look this up!