Your experiences

[barbjo]

Hi all! 
I have read alot of these posts in this section this morning.  Maybe I have missed or just wanted to miss the information I am looking for.  I had my 2nd opinion yesterday and was happy with the doc & his nurse practioner.  Went to Duke University, long drive but worth time and effort.  The opinion the Dr had was that there is a tumor, but not a new one but "leftovers" from the original surgery.  It hasn't grown alot and he wants to re-check in a year....Unless I am having more symptons.  He says surgery to remove is not a good option for me as there will be too much scare tissue that will cause more problems.  So he is wanting to go in the direction of radiosurgery. 
You all seem so experienced in this; so any thoughts, more reality stories and experiences would be fabulous.  Alot of articles on the web, and truthfully they have scared the "bejeebers" out of me!
I thought I was a brave person, but this has me beyond.   
Thank you all and all my best!!!!!!
Barb

[ceeceek]

Hey Barb Jo...
Hang in there,,,,,it is scary at first but then you learn to live with...that being the key phrase here...
Humor is always a good thing and you will lots on this board....second opinions are great,,,,,and I always advise the least invasive treatment first..why not give it a shot..surgery is definately risky..even if you are just getting a toenail pulled there are risks,,and this is near, around and affecting YOUR BRAIN!!!!,,,,so less invasive always wins by me. you can always try something more drastic later if you need to..but I do believe that radiosurgery is the wave of the future as more and more neurosurgeons are learning and using a variety of radiation treatments that so far seem relatively safe and effective rather than just going for the slice..I compare it to the beginning of endoscopic surgery that is now performed all over for knee replacements etc..when it first came out..not everyone did it,,,,Drs were afraid of the technology etc....but now you never ever see anyone having thier whole knee sliced up to fix a torn ligament....so I think the treatment of all brain tumors is in a similar growth pattern..
Good luck,,you will always find lots of info here and feel free to just join in when fustrated..keep us posted on your progress.
Ceeceek

[sgerrard]

  Hi Barb, I am not experienced in the sense of having had radiation, but I have done some research on it, in this forum and on the web. I'm not sure what information you are looking for, but here are a few thoughts.

  Watch and wait is always a sensible choice if there is no reason to take action now. If what you have is some regrowth, and it is small, not growing fast, and not causing a lot of symptoms, that makes good sense.

  Radiation seems scary, but the results have been very good in the last 5 years or so. There are a few exceptions, but most people seem to have the usual 6 months of annoying symptoms that all AN treatments seem to cause, followed by a good final outcome, with no more tumor growth, and no major nerve problems.

  Since you have some time, you can start looking into the main choices in radiation treatment, which are Gammaknife (GK), Cyberknife (CK), and systems like Trilogy. I would suggest the Cyberknife site in particular. There is a good forum, several doctors who will answer questions and emails directly, and links to other information sources. Go to http://www.cyberknifesupport.org/, and click on the 'Message Boards' and 'About the Doctors' links in particular.

Jim Scott in this forum reports a good experience having a large tumor first treated by surgery, followed by radiation treatments. In some ways it is similar to what you might end up having, although in his case it was planned due to the size and placement of the AN.

But first, lets hope the little regrowth just stays put, and doesn't require anything at all.

Steve