unn o:I met with a new nuero at Northwestern University Hospitals in Chicago today and am meeting a Cardiothoracic surgeon on Wednesday. I am scared and hopeful. I am a mess of emotions. Right now, the neuro changed my Mestinon from 180 mg Time span + 60 mg regular in AM and 60 mg at 2 PM (that is what the first Neuro....to 90 mg regular 3 times a day morning, noon and evening....so I will be actually going DOWN in mg per day...but he does not believe in the time span....He has also added Cellcept....500mg once a day for 5 days and then up to 500 mg Twice a day.

I am scheduled to meet with a surgeon and get evaluated for Thymectomy...with plasmapherisis post-op.

I do not have a thymoma....my antibody number for the AChR test was 249 (which puts me at stage IV on the Osserman scale) This new doctor thinks I may have been misdiagnosed 10 years ago, when they told me I had Fibromyalgia....and over the time things have been getting worse and in the last 1 to 2 years, things are getting really bad FAST!!!!

What do I need to ask surgeon? What do I need to know? I feel so overwhelmed right now....I have read/heard that the best way to go (even without a thymoma) is to have the full sternum opened...to make sure everything is gotten (at least to the best of their ablility)....I will post again soon...I need to rest up some now.

Thanks

Darci......from Chicago

Hi Darci,
You might care to opt for robotic surgery as it is much less invasive especially if there is no thymoma. I had a thymoma removed in '94 and it came back in '99 so even with split sternum there's still a chance of them not getting everything. No point in putting yourself through more than you have to. Try not to stress to much as the MG seems to thrive on it. Hope everything works out for the best.
Al

Hello Darci,

I am curious as to why you would need a thymectomy if you do not have a thymoma. I have experienced a thymectomy in 2009 but only after a CT scan and an MRI confirmed that I did have a very large thymoma which was attached to my lung sack on one side and my heart sack on the other. My AChR readings were normal.

I also think a PET scan would be in order - which is a scan they perform after you drink a dye that would show any cancer in the area.

I think a thymectomy is a very serious operation, especially when they go through your sternum (which is the operation that I had). What are they performing the operation for if not to remove a foreign body. If the object is to see what is there, there are other means of doing that that are not invasive.

I would question why they are in such a rush to perform a thymectomy.

Best of luck with the outcome.

Southern Bell

The Thymectomy is just to remove the thymus and any thymic tissues. There are actual studies that show that removal of the thymus in patients WITHOUT a thymoma actually shows some great remissioin rates and even Complete remission as deemed by MGFA standards. I live in Chicago area, so there are some great teaching hospitals here...and they have some great doctors

Hi Darci...glad you found a doc you really like!

If it were me, I would want to know everything before surg..so I would be asking things like:

1) IVIG or plasmapharesis before surg to boost my strngth?

2) how will anesthesia be handled...read up on this a bit.

3) how will I be monitored / handled after surgery. Will staff how knowledge of what to look for in a post surg MG patient?

4) who will be doing surg (no ghost surgery!)

5) detail post - surg recovery steps (get best and worst case scenarios)

There is a lot of info on internet if you have a bit of time to search around.

I hope they can schedule you fairly quickly...the waiting part can be hard.

Met with surgeon from Northwestern in Chicago...he has a great record for Minimally Invasive VATS...He will do a full trans-sternal if that is my wish. I am not 100% sold on any one way...so I am also going to Mayo in Rochester on Monday the 25th of this month to meet with them...and I am also going to meet with a doctor from UIC - he is also on the board for MGFA so...after all that I hope I can make up my mind...This is scary, but I am also hopeful that I can be somewhat symptom free someday soon...the meds (Mestinon 90 mg 3 times a day and CellCept 500 mg twice a day) are not helping much.

I will update as I move forward....Looking forward to the MG walk in Sept. Gathering my team and raising money for this disease!!!!!

Darci

I just had the VATS Thymectomy 5 weeks ago, I do not have a Thymoma, which helped make the decision to do it the minimally invasive way. Why go through such huge recovery time, pain and scares if you have the option not too.

I was told I would be in the hospital for 4 days, I was released 30 hrs after surgery, with no complications, I didn't even take anything for pain besides tylonel, and I only have 6 small incisions which are on my ribs that no one see's

I asked my surgeon how he knows he got all the thymus, he explained its shape and the tenticles on it, and he's aid he was quite confident he got it all.

Good luck, the process in its self can be quite tiring and emotionally draining