Well....after lots of emails...and lots of research..Ive decided to have the thyectomy!!..Im still scared outa my witts but I want to feel better. Thanks to everyone that has replyed to my posts. Its made a diffrence...and to erin...thank you for sharing your exsperiance. I will be back to update!!!

Hopefully Brennan and Rezmommy will be on soon with their 2 cents - they have had their thymus' removed.......Redtail too!

You hang in there! It does get better!

Big hugs!
Erin

Hi confused12,

Its great that you have come to a decision.

I can understand you being scared to, I was terrified to before mine, which was about 6 years ago. All went well, and I'm glad I had it done.

Keep us up to date and take care.

Which type did you decide on? Is it scheduled yet? Once you get it behind you, you will be able to move forward - I'm sure just making the decision will help by releaving some stress about what to do!

Best of luck to you - it'll be just fine, I'm sure.

We'll be watching for your updates!

Hi everyone...I have an appt. with a Thoracic surgeon on Monday...30th in Morgantown WV. (at one of the best hospitals in the state). He wants to do some tests and explain the transsternal thyectomy. Ill know more after my appt. Meanwhile Im still reading alot about it..and I have lots of support from my family and of course all of you!! Ill keep ya updated...!!

Thymectomy is virtually useless and unecessary. Why go through the misery of getting cut from neck to belly, having your sternum "cracked," as they say, for the slim liklihood you will see a slight benefit? Makes no sense. I'm an expert in MG, having gone through the pits of hell with it. Lingered near death for a week in a coma with it. Couldn't talk, eat, walk or anything at times, but determination and prednisone got me through it.

Unless you have a malignancy, keep your thymus right where it is!

Hi hcmiller92,

wow, sounds like you went through a really bad time with your thymectomy.

As I said I had no troubles with my thymectomy, just pain. I am glad I had it, because I often think, well if I didn't had it would i be worse off???

At the moment I'm struggling with what the tablets are doing to me, as the side effects are often worse than the mg, and make me feel horrid some of the time. It seems that mg affects us all in different ways as does the side effects of the treatments.
But comming here and talking to everyone certainly helps alot, as we are all so different and have lots to offer each other.
take care
redtail

HCMiller hasn't had a thymectomy, according to his post stating that they're BS he hasn't even had a CT scan of his thymus. He really seems to like his steroids though...

Confused, please don't get frustrated with the conflicting information you're hearing here. We're not neurologists, merely other people who're going through similar illness. Discuss your issues with your healthcare team, get your final answers from them and don't be afraid to ask for second opinions of other health care professionals if you're not satisfied with the answers you get.

The research supports that removal of your thymus may help you with your symptoms. It is not a guarantee though, there are people who show no improvement after having their thymus removed. It can also take several years to improvement as your body repairs the damage done by the disease.

Medication may be the correct course of action for you; or a thymectomy may be. That is not for anyone here to say though. You need to discuss with your health care team and have the tests done to determine what the right course of action for you and your situation is.

Best of luck to you

Brian

I know for ME that that my thymectomy was the only course of action that made sense......I too was very, very ill and needed relief...........No one wants this awful disease, and everyone seems to have differing opinions on it, but I was told that @ hat point if I wanted my life back removal of my thymus was the only option.......

I had lots of opinions - all the same response...........

Granted I still take meds - and I may be on them the rest of my life, but I am (and will always be) hopeful that remission is right around the corner - after all, what do you hav if you don't have hope?

My thoughts and prayers are with you!
Erin

I had my thymectomy (full sternotomy) on Feb. 18, 2009. I am very glad that I decided to have the surgery. I did a lot of research and went through a range of emotions before I decided to have the surgery. Before surgery I could not keep my eyelids open, walk up a flight of stairs or carry my little girl. Now I can do all of those things. I had this disease for fifteen months before I was eventually diagnosed in Nov. 2009. During that time I got progressively worse. It started with limb weakness, then onto eyelid drooping, then onto difficulty swallowing and severe shortness of breath. I was glad to have a diagnosis and know that I wasn't just plain crazy. I had a crisis in January 2009 and that really made it clear to me that the surgery was the next step. I KNOW that there are no quarantees with this surgery but really there are no quarantees with anything in life. I wish you all the best with your surgery!