10 1/2 year Pilocytic Astrocytoma survivor

Personal stories from survivors
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Brookie1980
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Joined: Sun Feb 27, 2011 7:58 am

10 1/2 year Pilocytic Astrocytoma survivor

Post by Brookie1980 » Sun Feb 27, 2011 9:00 am

I am new to this site and would like to share my story in hopes of finding people I can relate to. I was diagnosed with a low grade pilocytic astrocytoma in the year 2000 when I was 19 years old. At that time, I was a straight-A college freshman with an active social life and few symptoms. I felt optimistic that the removal of the tumor would make me better than ever. I had surgery to remove the tumor in the summer of 2000. Since the tumor was so large (about the size of an orange), there was a lot of damage done to my brain during the surgery. When I was in the ICU after the surgery, I had a stroke and a midline shift of my brain and almost died. I had to spend 6 weeks in rehabilitation after that. I had forgotten the previous year of my life including that I had been in college. I did not remember any of the people that I had met in college either. I also had difficulty remembering things that had just happened. I was paralyzed on my left side and had to begin taking medication to control my blood pressure which was elevated by my brain damage. My doctors said that I would never return to school, drive, or walk normally again. Since then, I have earned both a B.A. and an M.A., returned to driving normally, and regained my ability to walk and jog. I am grateful for all that I have been able to do, but doing these things has made people perceive me as normal. They do not realize how much effort I had to put into school because of my short-term memory loss. I had to study constantly and do nothing else. And I had to rest often because of my fatigue. I gained about 30 pounds from always sitting and eating to stay awake. School was easier for me than doing everyday things because I could go at my own pace and work in a quiet environment. Despite my success in school, I still have fatigue, memmory problems, weakness in my left side, and blood pressure problems. People still expect a lot from me, but I have compromised my health trying to meet those expectations and don't want to do that anymore. Even close friends and family who were there through my surgery and recovery don't seem to understand how difficult everyday tasks are for me. It can be very lonely so that is why I am joining this forum. I hope that I can meet simmilar people and help others with my story.

stacy
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Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

Post by stacy » Wed Mar 02, 2011 9:40 am

Hi Brookie,
Another inperational story of survivourship to add to this forum, Fantastic!!!!!!!!!
Stacy

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ashony
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Joined: Mon Dec 24, 2012 1:14 pm
Location: Syd, AUS

Re: 10 1/2 year Pilocytic Astrocytoma survivor

Post by ashony » Thu Jan 10, 2013 9:22 am

Thank you for sharing :)

My partner has a 7 year pilocytic astrocytoma but was not offered surgery at the time of diagnosis as the tumor was diffuse and the neurosurgeon at the time was highly hesitant.

We are considering surgery in the coming weeks as we have found a dr who is willing to take on his case. In your case, were you happy with your decision of having the surgery? What were your chances of surviving? I am so confused and scared for my partner.

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