MRI not clear
 

My mri scan results came back showing a growth but impossible to tell if it's malignant or benign. Has anyone else here had their thymus gland removed? The specialists have still to decide whether to operate before or after the baby is born

The MG Manual has a section on thymectomy: The "Quality Standards Subcommittee of the American Academy of Neurology concluded that MG patients undergoing thymectomy are twice as likely to attain medication-free remission, 1.6 times as likely to become asymptomatic and 1.7 times as likely to improve."


Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 18


-Mark-

I'm so sorry, Heather. I am sure the doctors will carefully weigh all the options for what is safest for all involved. Listen to your heart about deciding what to do. Keep us posted.

Heather, There's been a fair amount of discussion on this topic. Some people hope for a thymectomy because it offers a chance for remission, improvement or elimination of all MG symptoms (for a small percent). In many cases, the MG symptoms lessen or disappear a few months after a thymectomy.

As far as the question of malignant vs benign, it may not be that important. I think thymus tumors typically start out as benign but can change over time to become a malignancy. As long as the tumor is confined to the thymus itself, it's a low risk event and the cure rates are very, very high whether malignant or not. Several types of cancer can unfold this way. An example is 'pre-cancerous' polyp that can develop into colon cancer. If it is removed, it never develops into cancer, but if it goes undetected, it can be a big problem.

It's possible your MG symptoms served as a warning to catch a problem with your thymus early and before it can ever become malignant. I believe this often is the case. If so, they will likely offer a thymectomy and you will have a good chance of reducing MG symptoms and a very, very good chance of never having to worry about a future malignancy. Thymus tumors, when detected early, are reliably cured.

If they do offer a thymectomy, you should ask about different options to perform the procedure. Several people on this forum have said good things about a minimally invasive method called VATS where the procedure is done with a robot through small incisions in the chest. A thymectomy is major surgery but the VATS method offers a much faster recovery.

I wish you didn't have to worry about this during your pregnancy. It doesn't seem fair at all. Wishing you strength to make the best of it. Keep us posted.

Thank you all so much for your responses it's encouraging to read information others hold and although it's unfortunate it's happening especially during my pregnancy the important thing is it's now been detected and can be dealt with. It's more or less decided the op will happen after the birth just waiting on final word as to exactly when. xx

Heather,

Here is a link to the descriptions of the different types of thymectomy procedures, along with an idea of what to expect during and after the operation:

http://umm.edu/programs/myasthenia-g...vices/surgical

"The transcervical approach to thymectomy is the least invasive method. A small horizontal incision is made across the lower part of the neck. The thymus gland is visualized with a scope, which is placed under the sternum. The surgeon works with the scope and small instruments to carefully remove the entire thymus gland. A very small drain is left in the incision for up to 24-36 hours. This technique is associated with the least postoperative pain and has the shortest recovery period; however, it may not be ideal for every patient. Your surgeon will discuss with you whether or not you are a candidate for a transcervical thymectomy."

Source: Surgical Treatments | University of Maryland Medical Center University of Maryland Medical Center

Best wishes,

-Mark-

I had the VATT procedure done in 2000. Relatively pain free and very quick recovery. I had an almost 3 year old at the time and was pleased that there were no lifting restrictions. The surgeon just said to do what felt OK to me. That would be a plus for you with a little one!

By the way, if I'm not being too nosey, can you share the sex of the baby, if you know it? The due date? We don't have happy things like babies being born on here very often, and I think we should enjoy this process! Are you feeling well--uh, besides the MG?

:hug:

Thank you for all the info on different techniques used!
Of course I don't mind sharing I'm having a surprise :) same as last time! My date is June 10th and I cannot wait!! The baby will be born in Lancashire-England xx

I'm liking this even more-a surprise! My daughter was a surprise and I don't think anything can top the feeling when the baby is born. Maybe we can play a friendly guessing game here on the forum. I am terrible at guessing-even thought my daughter was going to be a boy!

Keep us posted on things.

I had a full sternotomy on dec 4 a few months ago. I did not have a tumor but my dr recommended it because of the chances of it helping. The recovery was wayyyyy easier than expected it to be.. the soreness is still occasional but barely noticeable. One of the reasons my recovery may have been super easy was because I am only 23. I was out of the hospital on the third day and stopped taking my actual pain meds on the fifth, using only tylenol to help me sleep comfortably.

I wish you luck with both your surgery options and your baby! how exciting!!!