My mother had it for 10 years. She just had surgery back in April and has been doing really well since. If you message me I can pass on her email addy to you. She is connected with quite a few support groups etc. you may be interested in. My experience as a family member, it was horrible to watch her in pain and not be able to do anything about it. I felt so helpless. The amount of medications and experimental meds at that she had to take were insane. She couldn't do anything most of the time because she was so drugged up. I was scared for her to have the surgery because brain surgery sounds so WOW but I am really glad she finally did it.
at 3:28 PM on Nov. 6, 2008