Post Gk continued growth

[LBB]

Ive not been one to post much here, but I have browsed this forum often during my journey. Now I am back in the research mode again after seeing tumor growth again at 18mos.  post GK.  The good thing about my story is that my hearing is preserved.  That makes my decision a little complicted on what to do next.  My group of doctors have agreed to wait until July for another MRI to make sure of the necissity of action.  I know I have seen a couple of people out there who have had GK a second time, or tumor growth post GK and opted for surgery.  There is not much research on GK retreatment, a couple of journal articles.  If anyone has a lead on info about GK retreatment or  AN growth post GK with regards to microsurgry, I would appreciate some insight.

[arizonajack]

A small percentage of AN patients experience regrowth over time but most don't.

Are you sure that your regrowth is not just the expected swelling after GK?

Take a look at the images over a 36 month period and compare them to your MRI images over the last 18 months.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

This tumor swelled while it died and then showed shrinkage at 24 months but still wasn't smaller than the original size. It wasn't until 36 months that the size of the tumor was slightly smaller than the original size.

My suggestion, if you haven't done this already, is get your images from all your MRIs and look at the tumor's progress.

[LBB]

Thanks for the suggestion but yes I have reviewed the images myself and more importantly with the neurosurgeon,physicist and oncologist.  They have specialized software that can layer the images to see at which margin the growth is occuring. And also calculate the volume of the tumor. There are certain characteristics that the tumor will have that can determine if it is new growth or just swelling.

[mesafinn]

Dr. Douglas Kondziolka in NY will review your MRIs for free.  He is widely and extensively published and accessible.  I suggest at least emailing him and explaining your situation and seeing what he has to suggest or direct you to other literature for consideration.   His email is his first name.last name followed by @nyumc.org

Good luck!

[LBB]

Thanks