Thymus removal
 

Hi all
I'm a newbie here. I was just recently diagnosed. It's been quite a journey as it probably has been with all of you.

Anyway my family phys ran the blood test which was positive for MG. I was fortunate to find a great doc in Atlanta/Emory. She is a neurologist as well as a neuro muscular specialist. She has been wonderful.

After she confirmed MG, on July 12th, she started me on Mestinon and I returned in 1 month. My appt was on August 18th. At that appt she also started me on CellCept. She explained that it was important that we treat this disease agressively..Basically she is treating me now with this approach to help me from suffering 20 years from now with possible disability. My MG mainly effects my arms, legs, face and back right now. Then she said that it was important for me to remove my thymus....(ct scan in July did not show thyoma). I am going on 9/1 to talk to a surgeon.

I am really scared about this. I had been really ok because she is a really good doc, until I spoke with an elderly lady at my church who was diagnosed in 1969. (she had her surgery in the 70"s) She asked me what the doc said and I told her and she freaked....Basically telling me....oh no, you need to get another opinion...it's too soon....are you sure you want to do that......it's so bad of a surgery....it's terrible....maybe you need too find another doctor...

Needless to say, i was a mess after that conversation.

I guess my question is.....did many of you guys have your doc's suggest the surgery this soon? Did any of you doc's use the same approach?? Would you get another opinion?

Mine did,as soon as I was diagnosed, I had mine removed as soon a possible, after a couple weeks, it helped my breathing getting around the house !
What a releif to get rid of it!
Mary

Hello and welcome to the best site for MGers like us. Yes I had my thymus removed right away, and I had no tumor, my thymus was spread throughout my chest like fatty tissue. I had my surgery in 1991 and yes it is major surgery but it put me into remission for 17 years, and I mean complete drug free remission. Now remember surgery has come a long way since the 70's. I understand your fear but try to relax and remember Drs today know sooo much more than they did 40 years ago. {I can't believe I am referring to the 70's as 40 yrs ago} :eek:

Hi,
I had my thymus removed (full sternotomy) in Feb. 09, I did not have a thymoma. I will tell you that the recovery went very smoothly because I was very concerned how I would cope with three kids. My breathing and swallowing issues have improved greatly since having the surgery. It is important for you to do your own research and get people's experinces (everyone loves to share on this site) and then make the decision that is best for you. Take care ~ Melanie

Hi JCPA,

Welcome to the group! My neuro suggested that I start thinking about having the surgery right from the start. I waited a year and had it done in 02. It took 4 years to see the full beneifits, but I'm much better than I was. Good luck with your appt. Take care.;)

Hugs,
Pat

Thanks to all of you for your kind words. I will keep you up to date after my appt next week.:)

Hi JCPA!
 

Hi JCPA,

I was also diagnosed in July of this year. My symptoms were just ocular -- double vision and droopy eyelid. Neurologist put me on Mestinon and Prednisone. Saw a major improvement the first day on the meds. Had a CT scan which showed growth on thymus. Last week I saw the neuro for the second time and he said I should have thymus removed, but it is not something which has to be done immediately. He said there have been major advancements in the surgery and luckily in Cincinnati we have several cardio-thoracic surgeons who do the procedure using the DaVinci robotic assisted method. Two of our hospitals have the machine. Way less invasive (couple small incisions) and the recuperation time is greatly reduced. I asked if I could wait til after the first of the year and he said yes. I'm going to schedule an appointment with the surgeon in the next month or two to talk the procedure.

So my advice to you since you live in a major metropolitan area is to check out if yours can be done this way.

Good luck.

I, too, had a CT scan with normal results and have been recently diagnosed with MG. My doctor said the operation is not necessary or even helpful in my situation since my thymus is normal.

Why the different opinions among doctors about removing the thymus?

I think there are alot of different opinions by doctors. I meet with the surgeon on Sept 1st and I'm wondering what he is going to recommend. I'm just very confused about which procedure to do. I have read alot on these boards about the less invasive procedures but some of those people said they wound up having to go back in again so I really don't know which way to go. This new Davinci method sounds good so I'm going to do some research on it.