so, 45 years after my BT operation

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jester
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so, 45 years after my BT operation

Post by jester » Thu Jun 02, 2011 6:06 pm

Back in 1964, at age 11, I had a malignant brain tumor. I am 58 now and in good health. Life is good!

The radiation levels used back then were significantly higher than current levels. I have balance and hearing issues now as the radiation was focused
just behind my ears. Problems began about 45 years after the radiation.

My Doctors treat the symptoms (hearing aids, skin cancer checks on my
scalp, CAT scans to confirm that my balance issues are not the result of another tumor), and they agree that these issues are all probably related to the excessive radiation 45 years ago.

They also suggest that people with my conditions and medical history represent a very limited pool of people so there is no research, diagnostic protocol, or medical outlook. I think there must be other childhood BT survivors out there with similar symptoms that occur 40+ years after the radiation.

So, if anyone has similar symptoms and medical history. Ideas for a medical, dietary, or holistic treatment of these symptoms, then please
share your thoughts. Steve

Gliomadude
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Post by Gliomadude » Thu Apr 05, 2012 11:41 am

Hi, I just read your post and it sounds familiar. I had my surgery and treatments at Stanford in 1974. Also at age 11. For 35 years I had very little difficulty. Then I started having stroke-like symptoms (balance, tremors, etc.). I am a teacher and dad. I now walk with a cane and have DP parking but I still work and keep life as normal as possible. Sounds like you are doing well! Keep it up. Take care and drop me a line when you can.

Tony

Gliomadude
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Post by Gliomadude » Thu Apr 05, 2012 11:42 am

Hi, I just read your post and it sounds familiar. I had my surgery and treatments at Stanford in 1974. Also at age 11. For 35 years I had very little difficulty. Then I started having stroke-like symptoms (balance, tremors, etc.). I am a teacher and dad. I now walk with a cane and have DP parking but I still work and keep life as normal as possible. Sounds like you are doing well! Keep it up. Take care and drop me a line when you can.

Tony

jester
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Post by jester » Fri Apr 06, 2012 3:17 pm

Tony, our conditions seem similar yet different. Balance (or lack thereof) is
my main concern and I trying discover ways to improve it. Swimming is my
best trick so far. I'm balanced for awhile ( perhaps an hour) once I am out
of the pool. If there is a mind over matter control that I can unleash I will be
a happy guy. There is no medical assistance here, so I am trying to be resourceful.
Do you have any resources that helped with your mobility? Is your condition
stable or degenerating? My condition seems stable.
Your the first person I have meet with a story similar to mine. It is comforting to not be alone in this. If I ever discover a treatment that work for me I'll certainly get that info down to you. You do the same please. Steve

Gliomadude
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Post by Gliomadude » Sat Apr 07, 2012 1:44 am

Hey Steve, I now live in Washington State and I have been going to Dr. Marc Chambrlain at Univ. of Washington and Seattle Cancer Care Alliance. A couple years ago I started having lots of falls due to balance problems and a strong tremor on my left arm/hand....later I started having trouble walking. My left toes drag when I walk. Now I use a walking stick and I'm getting used to doing everything right handed ( I am right handed so that is good news). I go to physical therapy twice a week as well. It turns out that the radiation I received at Stanford has resulted in a cavernoma in my midbrain. My doc thinks it is too risky to do anything about it. Some days are better than others but I continue to teach, which is a work of passion. Life is good but I have concerns about my future ability to walk and work. As you know, there are no guarantees so we'll carry on. Take care and keep in touch. Tony
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kenobewan
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Post by kenobewan » Sun Jun 24, 2012 7:20 am

Great survival story, even though you have bad side effects.

Have you tried taking vitamin D3 or getting extra sunshine? Not sure that it will help, but as it is natural and as long as you don't get too much worth a try :).

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kenobewan
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Re: so, 45 years after my BT operation

Post by kenobewan » Sun Sep 09, 2012 8:47 am

I guess its difficult for us to believe that we are the fortunate ones :).

I have a friend who has been in hospital the last 7 months since her diagnosis, apart from two home visits!

All things that increase your energy are good as are healthy lifestyle changes.

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