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Unread 04-14-2012, 10:04 AM   #1
Rob_S
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Join Date: Apr 2012
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Hello,

Glad to see there are others who have issues that I am having (well not really, I feel for you) and a community that can voice our concerns. My story...

I had a benign brain tumor (Pilocytic Astrocytoma) at the age of 12 on my brain stem, had surgery to remove it and enjoyed 17 great years from that date. I really didn't know how blessed I was until now.

This year at age 29, I went to have an MRI and they noticed that the very small peice of tumor that was left started to grow again. It was approximately 1.5cm or about the size of a lima bean. My NS recommended we put in a VP Shunt and use the Gamma Knife procedure. I would have pretty good odds that the tumor will completely die and not recur and the shunt would help if I developed hydrocephalus. I didn't want to have it done but the thought of tumor free was great, so we had the surgery and I did great. I noticed when I was in the hospital though, the nurse would touch my arm and I would feel a sensation in my right leg or just strange sensations like my tongue going numb. As time went on, I got worse and worse, having problems looking around and adjusting, tons of pressure behind my nose and eyes, balance issues, pains in my side, ect. Well I had the gamma knife procedure done 3 weeks after the shunt, and I have had my shunt adjusted (it's programmable) 2 times since then. I've been miserable, emotional and all I can say is I feel for those of you who have shunts and hydrocephalus. If you know me I am far from the type of person who feels sorry for myself, but this shunt (WHICH WAS A PREVENTATIVE MEASURE) has completely ruined my life. I can't life weights, I can't golf, I can't even walk around the neighborhood without getting cramps or my side hurting to the point I have to stop.

This past week I convinced my NS to adjust the setting to 8 which is off, and that was Monday. I was so happy I got this thing cut off. I went to sleep sore in my stomach due to the CSF and tubing down in there but was happy I wouldn't be draining anymore. I wake up TUESDAY night in the hospital and don't remember anything. Apparently I developed hydro and was throwing up and then just went in a coma like state. They drained CSF out of the shunt and I became concious and I finally remember things around 8pm. They are leaving the setting on 6.

My theory? I think my body became accustomed to the shunt and isn't draining CSF normally itself. This is so frustrating, I just want to be able to live the life of a 70 year old man, and I can't do that right now. I went from 192lbs @ 11% bf to 170 at no telling I've just lost faith it seems like nothing will go my way. I'm sure many of you have felt this way before.

I have a few questions? Does your body ever get used to the CSF? Do many of you have IBS from this? If so what medicine do you take?
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Unread 04-17-2012, 10:06 AM   #2
TMOORE
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Join Date: Oct 2010
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Cool Gets Better

Quote:
Originally Posted by Rob_S View Post
Hello,

Glad to see there are others who have issues that I am having (well not really, I feel for you) and a community that can voice our concerns. My story...

I had a benign brain tumor (Pilocytic Astrocytoma) at the age of 12 on my brain stem, had surgery to remove it and enjoyed 17 great years from that date. I really didn't know how blessed I was until now.

This year at age 29, I went to have an MRI and they noticed that the very small peice of tumor that was left started to grow again. It was approximately 1.5cm or about the size of a lima bean. My NS recommended we put in a VP Shunt and use the Gamma Knife procedure. I would have pretty good odds that the tumor will completely die and not recur and the shunt would help if I developed hydrocephalus. I didn't want to have it done but the thought of tumor free was great, so we had the surgery and I did great. I noticed when I was in the hospital though, the nurse would touch my arm and I would feel a sensation in my right leg or just strange sensations like my tongue going numb. As time went on, I got worse and worse, having problems looking around and adjusting, tons of pressure behind my nose and eyes, balance issues, pains in my side, ect. Well I had the gamma knife procedure done 3 weeks after the shunt, and I have had my shunt adjusted (it's programmable) 2 times since then. I've been miserable, emotional and all I can say is I feel for those of you who have shunts and hydrocephalus. If you know me I am far from the type of person who feels sorry for myself, but this shunt (WHICH WAS A PREVENTATIVE MEASURE) has completely ruined my life. I can't life weights, I can't golf, I can't even walk around the neighborhood without getting cramps or my side hurting to the point I have to stop.

This past week I convinced my NS to adjust the setting to 8 which is off, and that was Monday. I was so happy I got this thing cut off. I went to sleep sore in my stomach due to the CSF and tubing down in there but was happy I wouldn't be draining anymore. I wake up TUESDAY night in the hospital and don't remember anything. Apparently I developed hydro and was throwing up and then just went in a coma like state. They drained CSF out of the shunt and I became concious and I finally remember things around 8pm. They are leaving the setting on 6.

My theory? I think my body became accustomed to the shunt and isn't draining CSF normally itself. This is so frustrating, I just want to be able to live the life of a 70 year old man, and I can't do that right now. I went from 192lbs @ 11% bf to 170 at no telling I've just lost faith it seems like nothing will go my way. I'm sure many of you have felt this way before.

I have a few questions? Does your body ever get used to the CSF? Do many of you have IBS from this? If so what medicine do you take?
Hey Rob,
I had vp shunt put in 3 yrs ago at age 33. At that time I had terrible headaches, my stomach couldnt get used to the csf at all, and i was off a bit off(like my gait, concentration, eye sight, dizzy). It was prob 6mo to 1 year before i felt even close to myself again. Also i lost my mind However, nowadays my body has acclamated to this ******* thing. im back in the gym, workin, living normal life.
I never had my shunt adjusted, its fixed not programmable. i still have headaches(ibuprofen, tylenol) and upset stomach and abdom pains. i just deal with it. when i go to different docs for my pains and symptoms they all say 'duh' "go see your NS there is prob something wrong with your shunt" and i've been there a million times for ct scans and that arrogant *** (NS) sees me for 2 mins. and says everything is fine. I often wish he would just try to adjust it but he wont. Hope this helps. im 100% sometimes and in pain and miserable sometimes too-but im able to tolerate it

Last edited by Chemar; 04-17-2012 at 10:11 AM. Reason: NT language guidelines
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Unread 04-17-2012, 04:47 PM   #3
Rob_S
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Join Date: Apr 2012
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Quote:
Originally Posted by TMOORE View Post
Hey Rob,
I had vp shunt put in 3 yrs ago at age 33. At that time I had terrible headaches, my stomach couldnt get used to the csf at all, and i was off a bit off(like my gait, concentration, eye sight, dizzy). It was prob 6mo to 1 year before i felt even close to myself again. Also i lost my mind However, nowadays my body has acclamated to this ******* thing. im back in the gym, workin, living normal life.
I never had my shunt adjusted, its fixed not programmable. i still have headaches(ibuprofen, tylenol) and upset stomach and abdom pains. i just deal with it. when i go to different docs for my pains and symptoms they all say 'duh' "go see your NS there is prob something wrong with your shunt" and i've been there a million times for ct scans and that arrogant *** (NS) sees me for 2 mins. and says everything is fine. I often wish he would just try to adjust it but he wont. Hope this helps. im 100% sometimes and in pain and miserable sometimes too-but im able to tolerate it
Thanks TMoore

It's been bothering me a ton in my right side. I've finally been perscribed Levsin and I have some Naproxen left over. I just have a genetically small midsection, I have jeans that are 30" so I don't have alot of space in my abdomen.

Thanks for replying man I've just been holding onto hope that I will eventually be able to resume a normal life, one day it will be here. It's amazing how when you have your health, there's no amount of saying be grateful for your health or don't take your health for granted, it will never prepare you. You will ALWAYS take it for granted until something goes wrong.
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Unread 04-23-2012, 11:27 PM   #4
TMOORE
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Join Date: Oct 2010
Posts: 6
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Rob,
My ab pains are usually leftside really low, usually very painful -they stop me in my tracks. I believe it happens most when i have a full stomach, like there is some kind of pressure put on some nerves or something.
You will be back to normal-I gaurntee it- even though you probably dont believe it!
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