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Old 05-03-2015, 04:24 PM #1
paul1983 paul1983 is offline
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paul1983 paul1983 is offline
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Question VP shunts never changed?

Hi All, I'm new to the forum, I was diagnosed with Hydrocephalus at the age of ten days old and was operated to have a VP shunt in, still to this day I am with the same shunt (32 years) and have previously had bad headaches, I was discharged in 2010 and when asked if the shunt could be removed we were told that it would be too risky because I didn't have the change at ages 7/14/21.

Over the past Few years (well since I was 3 years old) I had a lazy eye which carried onto poor vision then slowly deteriorated, after number and number of tests the eye hospital said that it must be down to the hydrocephalus due to the pressure on the eyes.......... I am now registered partially sighted and my other eye is now deteriorating because of this.

Do any of you as old as me or older still have your 1st shunt still placed?
If so, have you asked why a new one has not been inserted?
Have you had any loss of vision?

I would really appreciate anyone's feedback on this. TIA
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Old 05-04-2015, 02:53 AM #2
Merl1n Merl1n is offline
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Originally Posted by paul1983 View Post
Hi All, I'm new to the forum, I was diagnosed with Hydrocephalus at the age of ten days old and was operated to have a VP shunt in, still to this day I am with the same shunt (32 years) and have previously had bad headaches, I was discharged in 2010 and when asked if the shunt could be removed we were told that it would be too risky because I didn't have the change at ages 7/14/21.

Over the past Few years (well since I was 3 years old) I had a lazy eye which carried onto poor vision then slowly deteriorated, after number and number of tests the eye hospital said that it must be down to the hydrocephalus due to the pressure on the eyes.......... I am now registered partially sighted and my other eye is now deteriorating because of this.

Do any of you as old as me or older still have your 1st shunt still placed?
If so, have you asked why a new one has not been inserted?
Have you had any loss of vision?

I would really appreciate anyone's feedback on this. TIA
Hey Paul
My first lasted 13yr and then fractured, they didn't remove the old one. Just inserted a whole new shunt. The valve died on the new one within 6mths. Then they just replaced the valve. It was explained to me that after 10 yrs the original one would have had structures (blood vessels etc) adhere to it so removing it after that length of time could have caused major bleeding. So they cut it off level with the outside of my skull and left the brain catheter in place. The distal end that fractured was also left and is now floating in my belly somewhere. Occasionally I feel something odd, painful, but the dr's are less than reluctant to go looking for it.
I have some bloody awful pain behind my eyes since my last revision. It was my vision that finally made the medicos investigate in the first place. I was driving down the road and the lights went out, which was bloody scary to say the least. I've seen an ophthalmologist about it and he tells me it could be a result of scar tissue after the 5 surgeries Ive had. But to remove the old shunt and the scar tissue is going to need further surgery meaning further scar tissue. So for me its a case of putting up with what I know or having further surgery resulting in ?????
So although mine wasn't as old as yours, they still wouldn't remove it.
Merl1n
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Old 11-27-2015, 01:15 PM #3
Iforgotmypassword Iforgotmypassword is offline
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Quote:
Originally Posted by paul1983 View Post
Hi All, I'm new to the forum, I was diagnosed with Hydrocephalus at the age of ten days old and was operated to have a VP shunt in, still to this day I am with the same shunt (32 years) and have previously had bad headaches, I was discharged in 2010 and when asked if the shunt could be removed we were told that it would be too risky because I didn't have the change at ages 7/14/21.

Over the past Few years (well since I was 3 years old) I had a lazy eye which carried onto poor vision then slowly deteriorated, after number and number of tests the eye hospital said that it must be down to the hydrocephalus due to the pressure on the eyes.......... I am now registered partially sighted and my other eye is now deteriorating because of this.

Do any of you as old as me or older still have your 1st shunt still placed?
If so, have you asked why a new one has not been inserted?
Have you had any loss of vision?

I would really appreciate anyone's feedback on this. TIA
I am 32 years old as well and I am on my second one. I have this one in since I was 3 years old when the first one had collapsed into my skull. When it comes to my vision, I've always had a small issue with it. I'm not able to look at people or if I look at something very small for long periods I start to get a headache. When I was a child I went to eye doctors and I had glasses and no real explanation. Doctors say "it's due to the shunt they just aren't sure to what extent." My vision hasn't gotten any worse or better over my life. When I last seen a specialist I asked him about it. He told me that to fix something so minor would be a big risk being that my shut has been there for almost 30 years. So I took it as that I am going to have to live with it, which I am okay with. I can do everything else a normal person can, just not able to make eye contact.
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Old 05-22-2018, 04:53 PM #4
SoSoConfused!?! SoSoConfused!?! is offline
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I literally joined looking for someone else in the same situation as my husband!! He's 33 with same vp shunt as when he was a few months old-cant get exact date or info from his mother as she's not sure.hes having severe headache along w an array of other problems due to this shunt not working properly but the surgeon told us its too risky to operate unless he's in a life/death situation. He's miserable always.not sure if your still on here but if so I'd love to chat with you to maybe compare notes??the Drs look at us like they have no idea what were talking about.its a very frustrating situation.
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