Thymectomy is a very personal decision and an educated guess. I would not be satisfied with an educated guess, if I could wait for the thymectomy study to be finished (or be in it, if it were not closed and I qualified, which it is and I don't). When treatment options are limited, thymectomy looks more attractive. In general, I would hate to have any organ removed, especially the more poorly understood ones, not only for the known benefits, but the unknown ones. One consideration that is seldom mentioned and should be, especially for younger MG patients, is that having an intact thymus may be necessary for future (better) treatment. It's these unknowns that make the recommendations and decisions so difficult. b.

Thanks Judith, it's great to know a member had experience at MGH. I live in NH, but work at MIT so I know where it is at am in Boston frequently.

Judith since your surgery do you notice that it helped your MG? Have you had problems with infections or have had more colds or flu since your thymectomy?

Joe

What I posted is opinion based on my understanding of information from various sources, including testimonies over the years. We've all had decisions to make and that is my take on thymectomy. It doesn't mean it is the best advice for everyone. If you google key phrases in what I said, you should get to some links with info. I am posting from my Kindle and when I get more time I can look into finding you links to information. What I said should be pretty common findings on thymectomy and MG. I would like to see what you are reading also. I had never heard such things about men and thymectomy.

I had my Thymus Gland removed at age 45. I also had half my thyroid out at the same time so it was all done through the chest. My MG symptoms were way worse before the surgery but it did take a long time to recover and to see a lessening of the symptoms.. However, due to complications from the surgery I ended up with different set of problems. Keep in mind that all surgery has its risks.

At the time of surgery I was not on any medication for my MG.

Like I said I had my thymus out 3 years ago. I had got worse after my surgery and that's when I had to start taking prednisone, Imuran

Ok Judith, thanks !!

How much time passed from the time of diagnosis to thymectomy?

Joe

Sorry Cassy....I accidentally addressed you as Judith, I wish there were a way to correct errors on a post here.

I do want to thank all here for the responses and I'm sorry I'm dominating this thread. It seems that thymectomy is an option that I am being offered and as mentioned there are no real large studies regarding the procedure, I simply want to make the right decision....besides that surgery scares me quite a bit.

Thanks for all of the answers and guidance, I really do appreciate it.

Joe

I found out that I had MG in may of 2010 and by Aug I found out I had a thymoma tomor and had that removed in September. I was only taken Meston at the time but after Surgry I was put on prednisone and Imuran. After surgery I had gotten worse. It was hard to eat and talk. I did try to come off my prednisone once but got worse again. I have had IVIG treatments but I don't do very well. My bleed pressure goes up. I haven't had a treatments in 2 years .

Cassy and Joe,
Things were a little different for me. I was diagnosed with mg 3 months after my thymectomy. So it's hard to say if things improved because I had no symptoms before surgery. Mg has gone into pharmaceutical remission 3 or 4 times in the last 4 years.I've also had 3 crisis's, so it's a roller coaster. My thymoma has recurred twice and went from stage 1 to stage 4 in that time. The strange thing is my mg has always been good right after surgery, which is not what you would expect from the trauma of such an invasive surgery. ( although maybe it's from removing the cancer.) I just had ivig 3 weeks ago, am on 1500 mil of celcept and have weaned down to 5 mg of pred Right now, I am doing great. My neuro thinks my mg has been hard to treat because of my thymoma, but I don't think they really have a clue.

Thanks for all of your replies, I'm still quite new to MG and was diagnosed just last April, but have had symtoms for a little over a year. In late March of this year I got a bug that really caused some respiratory problems and seems to be the trigger for MG to kick into high gear.

I was already on Imuran for about 4 years for Crohns and Colits. I am serum positive and found that Mestinon really really helped. Between the blood tests and the response to Mestinon the Dx of MG was pretty clear.

So far my symptoms have been weakness in my legs, hips and hands and occasionally my neck. I have had significant problems breathing several times which an extra dose of Mestinon helped, it did scare me though. I also have almost constant problems swallowing and have had several occasions of not being able to chew too long and have had slurred or thick speech.

Before the Mestinon I would often be out of breath while talking and I still have problems talking for more than about 15 minutes as my voice just gives out.

I'll have to admit MG has turned my life upside down, I used to be so active and have seemingly endless energy, now it's a matter of carefully budgeting my energy and learning how to read my daily symptoms. On most days I Caen only stand or walk for about 20 minutes and then I need to rest.

The reason I am considering a thymectomy is to get a bit of my life back, as has been mentioned here there is no guarantee of improvement and things may get worse. Certainly this is a big decision and is major surgery no matter how you look at it.

Thanks to all here on this site for your help and very generous support as I find my way through this...cassynchris thank you for sharing your experiences and answering my many questions.

Are any of the Massachusetts or New England members coming to the snowflake get together tomorrow up in Burlington Vt? I know I'm heading up, I think it will be a great time to get together and share our experiences.

12:30 in Burlington Vermont at Panera's.

Thanks again for all of information and your personal experiences.

Take care

Joe

Wish I could make it but have to work... We need to try again on a weekend. It would be great to meet people that are going through the same thing you are going through.

I had mine removed 4 years ago. I am better not cured.
Ann

http://www.ncbi.nlm.nih.gov/m/pubmed/11465178/

I found something on odds less favorable for men. There have been trials over the years and some were not in our country.

TJ

Here is another

http://www.ncbi.nlm.nih.gov/m/pubmed/15825704/?i=2&from=/11465178/related