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.

Here's a link to a PDF file for thymectomy via the DaVinci robotic method.

http://www.intuitivesurgical.com/pat...thymectomy.pdf

Not sure where you are in GA but my dr just referred me to Dr. William Mayfield in Marietta since he does the thymus removal laproscopically with only two small incisions and no full chest surgery. I got diagnosed with M/G this summer also. Good luck. I am personally going to try to get them to repeat a scan in a few months and re-evaluate since my symptoms aren't really that severe as of yet and it is only slightly bigger than should be.

[Hello,

I m a new member (i ve joined this great community this month) as well and I ve been sharing the same worries as you regarding the thymectomy . I have an elarged thymus (but they didnt give me enough details about the size they said 4 gr which must be wrong ) and doctors cant say if it is or not thymoma, but they want me to have the surgery.

I asked for a copy of the scan as advised on this site and i m waiting for the copy to come, not sure how long it will take, but than I should be able to see more.

I m scared of the surgery, not sure if it is going to work for me or not.
However, I was recommended the least invasive operation (transcervical approach) but it does have its limitations and the doctor wants to revert to a full strenotomy in the event of a big problem identified down there !

I was thinking that if I go for the surgery I will go for the transcervical approach and than if problems appaer to go for the robotical one Da Vinci (the second invasive in the list?!) but that s just an idea, not sure if I can choose what i want .

That is my last idea, but i m still reluctant to the thought of having my thymus removed.

hope that the appointment with your doc went well

I see you are in the UK, so not sure how things work there. Not all cardio-thoracic surgeons are trained to do the surgery robotically (DaVinci is a brand of robotic equipment). Also, not all hospitals have the equipment. I just had my thymectomy in December 2009 and it was done robotically. I specifically chose a surgeon & hospital that could do it this way. I did have a thymoma -- 4cm in size, so surgery was not an option for me. I just have 3 small incisions (less than 1 inch each) over and to the side of my right breast. No stitches, just tape over them for about a week or so. No pain at all after the drainage tube was removed the day after surgery.

I don't believe my thymus was enlarged, but the pathology report showed that it weighed 60 grams and measured 11 x 7 x 1.0 cm thick.

Good luck with your decision.

thank you , is right the robot doesnt exist in many hospitals, it seems that I will have trouble finding a place and trained professionals.
its great to hear that your recovery was so good

My thymectomy
 

Hey- Just sharing my experience here.

I was diagnosed with a singlefiber EMG August 1st. 2009. I then had a ct scan seeing if I had a thymoma, yet it didnt show anything. Even with that my neurologist thought that I would have a good turn out with a thymectomy, (full, not laprascopic, for it has better chances.) So i did this, i had the surgery maybe a month after he said this at UNC. Even though it was painful, I hope it was worth it.

If your going to have the surgery, why not go all for it, and do the sternotomy, for your getting it taken out anyway, may as well make sure it gets all out.

After going in, the surgeon realized i had a very large thymoma, 7-8cm. And none floating around.

Hope this helps!

Everything helps thank you .
how is your recovery? hope everything goes well for you.

The recovery from surgery was pretty easy, yet hard being in high school, having to miss a month and half. Yet it was a little painful, but hopefully worth it in the long run.

What are you leaning towards?

Im glad I could be of assistance.

I m leaning towards surgery, still not sure what and how , but I m very scared (to be honest)Especially now, when I m dealing with some new sympthoms-cheast pain (since I ve started the immunosupressants) You are very young and brave to put up with so much at such an young age.
I am 35 and i still find it extremly tough.

Hey newmg,

Welcome to the group! The dicision to have the surgery is a very scary one indeed. I had symptoms for almost 3 years before I was diagnosed in 01. My doctors wanted me to have it right away, but I waited just about a year and had a full sternal in Nov. 02. I started to see small improvements after about 2years, but it took 4 years to see the full benefits. Research as much as you can and ask lots of questions. Does your neuro know you are having chest pains? If not, you might want to call and let him/her know. They can be scary too. Take care and keep posting!;)

Hugs,
Pat

Pat, why didnt you want to have a thymectomy straignt away ?WHat were your worries?

Has anyone had a biopsy of his/her thymus? I know is not commun , but is still an option and thought to double check with you guys.
...

Thank you again
newmg

There were many reasons, but I'll make it brief. It was 2001, I was almost 50 and access to excellent medical care and good information was not as it is now.;)

Hi,
Since this was an older thread...I thought I would post an update.

I did have my thymus removed on October 29, 2009. Partial sternal "t" incision about 3.5 to 4 inches down.

Best think I've ever done. Emory University Dr Joseph Miller performed the surgery. Excellent care ever!

Since my surgery....it took about 5 weeks to really get over the incision itself...had a little setback with one part being slow to heal.

I spent 1 day in ICU then I was moved to the floor for 4 additional days. I had an epidural pump in my upper back that administered pain medication for 3 of the 5 days after my surgery. It was not an epidural block but one that helps to manage the pain. I highly recommend it.

I had to sleep in a recliner for just about the whole 5 weeks. You never realize how much you use your chest muscles until you have this done. Keep a pillow close by for any coughing or sneezing as it is pretty painful. Do the deep breathing exercises to keep your lungs full after surgery. I was not told this and I developed some problems with that but nothing major. I had to do some additional breathing exercises to resolve the problem.

But the great news is........ I have went into remission. I know this is very unpredictable from person to person so i am sooooooooo Thankful each day that when my feet hit the floor and I have good muscle strength all throughout most of the day....I am very blessed.

MG is no respector of persons and I know that it could come back at any time with a vengeance but.....I do believe that removal of my thymus has helped this process in my case.

If you had asked me 1 day after my surgery about it...I would have said "What have I done" but now on day 76 I would say "I'm glad that I did it".

Good Luck with your decision.

Jujuan

Wow - that's terrifc. Thanks for the update - - but especially one with such great news!

Sue