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Old 06-09-2011, 11:10 PM #1
RagahRagah RagahRagah is offline
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RagahRagah RagahRagah is offline
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Hi there. It's difficult to say because it varies by person. You probably won't know your son's limitations until he grows up. Myself, I am only 24 but have had Hydro since I was 11. Luckily I'm more fortunate than others; I had my last revision in 1999 and have been fine since.

The most important thing is identifying a malfunction. Some symptoms seem like warnings with some and no big deal for others (some live with headaches for their whole lives and for some headaches are abnormal, even a warning sign). But a few that should serve a REAL warning are "sundowning" (inability to keep eyes level or raises), blurriness of vision and especially extreme drowsiness. I had all the following on my last malfunction (which was the one I had in 99) and was aware of it.

My own limitations are thankfully not damaging to my intellect but my attention span and short-term memory are very poor. Physically there's no problem other than the obvious higher level of vulnerability than others; I studied martial arts before my diagnosis, but it wasn't long after fully recovering my neurologist ok'd my return (given the circumstances). I'm honestly not aware of many hydro patients that go on to accomplish physical fame of any kind but there are plenty who are successful.

Hope I helped some.
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Old 06-10-2011, 11:38 AM #2
lalahecky lalahecky is offline
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lalahecky lalahecky is offline
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Default Please help me!!

I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
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Old 07-06-2011, 12:10 AM #3
CSF Leak Mary CSF Leak Mary is offline
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CSF Leak Mary CSF Leak Mary is offline
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Quote:
Originally Posted by lalahecky View Post
I have been dealing with horrific headaches, dizziness, nausea and vomitting for nearly 2 weeks. I was told that I have slit ventricle syndrome and now the apparently the ventricle has collapsed on the shunt. My shunt {medtronic strata w/siphon control} cannot depress the resevoir, it's just rock hard. I apparently have very low icp according to the shunt tap, but I had a lp also and they said the pressure was 10.4. I am growing very concerned since everything I read tells me that the shunt not depressing indicates a blockage and now I'm supposed to go in and have the medtronic person reprogram it at a higher pressure. My concerns are two-fold, since my shunt also has an anti siphon device, which clearly did not work, the valve cannot depress indicating blockage, what in the heck would make them think that it could be reprogrammed at this point? I am very concerned, since the possible complications at this point are severe. I do not know what to do??? The neurosurgeon was set to switch out my shunt, but says I'm inoperable since the ventricular collapse...what the heck is going to happen to me? All I can do now is lay down and even at that I still have a headache and nausea. They gave me zofran for nausea, but I'm useless anymore...please any info would help
I wish I had answers but since I do not I'll offer you prayers
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