Im 13 and thinking about Myasthenia gravis surgery?

Question

Have anyone had the surgery? i havent yet talked to my doctor about it....but i did alot of research on the computer and if i do get the surgery 70 percent of mg would be cleared...Is it true?

Answer 1

Wow at 35, just found out a month ago, and I'm having trouble with the whole surgery idea.

I don't care what anyone else tells you this is YOUR call. It will effect your life not theirs. Discuss the pros and cons with your Doctor, though it seems from what I read so far for the most part it's all pros. I have read that it doesn't always help and less likely to help with Ocular MG. I'll probably do it because from what I've read so far it seems the most logical route. I wish you many long remissions or hopefully a remission that lasts forever.

Answer 2

Myasthenia gravis is an autoimmune disorder in which muscle fatigue results from impaired transmission. Multiple clinical symptoms are associated with this disorder, affecting any muscle that is under voluntary control. Muscles that are more frequently involved include those that control eye movements, eyelids, chewing, swallowing, coughing and facial expression.

Muscles that control breathing and movements of the arms and legs may also be affected. Weakness of the muscles needed for breathing may cause shortness of breath and difficulty taking a deep breath or coughing. This disorder is characterized by periods of worsening and periods of improvement.


Myasthenia gravis may be associated with various abnormalities of the thymus gland. The thymus gland lies behind the breastbone and is an important part of the immune system in infancy and early childhood. The relationship between the thymus gland and myasthenia gravis has led to the medical recommendation that the gland be removed (thymectomy). About 10 percent of myasthenia gravis patients have a tumor of the gland (thymoma) and are treated with surgical removal, or thymectomy, as well.



Thymectomy
The history of thymectomy dates back to 1901 when a thymoma in a patient with MG was described and the association between the thymus gland and MG was first suggested. But it wasn't till 1911, that the ist thymectomy was performed 2 years by Sauerbruch.


Outcome
The exact mechanism by which thymectomy improves the symptoms of myasthenia gravis is not completely understood. Nevertheless, MG patients who undergo thymectomy do experience fewer exacerbations ("flare-ups"), have milder symptoms, require lower medication doses and have a higher chance of complete remission. It takes 6 months to a year for patients to notice significant improvement in their symptoms.


Various types of thymectomy procedures are performed at the University of Maryland Medical Center, a world-renowned teaching institution at the forefront of medical education and research. The Medical Center has recently installed state-of-the-art operating rooms outfitted with the newest videoscopic equipment, earning the title: "OR of the Future." The University of Maryland Medical Center is located at 22 S. Greene Street, Baltimore, MD.


For more information on Myasthenia gravis, you may wish to contact:

Myasthenia Gravis Foundation of America, Inc.
1821 University Ave W, Ste S256
St. Paul, MN 55104-2897

[e-mail]
http://www.myasthenia.org

Telephone: [phone] or 651-917-6256
Fax: [phone]

I found a forum site from people who are against thymectomy. This is a classical example. I am not sure whether or not the surgery is beneficial. Since my neuro and surgeon were pretty sure that I had a thymoma, the choice of surgery wasn't a question. If there isn't a thymoma, I don't know if I would have had the thymectomy because I was feeling so well. Since the MG relationship to the thymus is only a hypothesis, one cannot be sure that the thymectomy will definitely be helpful. It is only speculative at best. There haven't been any blind studies done.


When you ask you neuro about the about the benefits of thymectomies, I think that what you will get is anecdotal and not "scientific." I find this funny because if you talk about "special diet" with doctors, they will ask about where is the scientific proof.


My main point is that each choice for a thymectomy is that it is individual and what is on your plate. I was very against thymectomies and as I said before, if I didn't have a thymoma I would not have had one.

STill another commented: I have met too many people in the support groups who years after their thymectomies, still produce the ACHR antibodies and still have to take Prednisone, Imuran, Mestinon, etc. to control their MG. Many have had severe relapses, years after their thymectomies.


Finally, another testimonial; there is another of our members who had a thymectomy when she was about 14 - she is in complete remisssion of her MG and is now into tertiary education and leading a perfectly normal life

The standard approach to remove the thymus is through the breast bone.This trans-sternal method allows for removal of the greatest amount of tissue. However, this does produce a scar along the length of the breast bone.

Answer 3

You are so young to be making this type of decision on your own. It's not the best thing to ask others about such a serious decision, especially when they are not doctors, nor know about the specifics of your case.

Talk with your parents and doctor together. Be sure things are explained completely so you understand the risks and benefits of all the different types of treatment. Follow their advice and remember...all surgery has inherent risks that must be considered very carefully.

Good luck and to good health! The following link gives you more information that you may want to discuss with family and physician.

Answer 4

ditto