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I know something is not right i feel it

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Unread 03-20-2012, 01:35 PM   #1
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Unhappy I know something is not right i feel it

I have had a shunt for my entire life 24 years. In those 24 years I have had 45 revisions full of pain and infections. Feels like I am going down that same scary road again. I have always been a complicated case for I have a rare form of Hydrocephalus. I have what they call slit ventricles meaning they stay small always making it hard to pinpoint when things go wrong! Normal CT scans are almost always out though they always want to do them, they never show anything... I was in the ER Friday night to do a shunt tap to check my pressure. that turned out to be very low, I am a person who does not handle any kind of major pressure change low or high :/ so what is the next step?? I am going in for a shunogram tomorrow and my biggest fear is that they see no blockage on the shuntogram and brush me off, when I know my body and I know something is not right. About two years I had to go through over a year of pain before they started listening to what I was saying..... I can't go through that again and my husband bless his heart just does not get why I went from being fine for four year and why now ??? Just in pain and want answers
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Twinkletoes (03-28-2012)
Unread 03-29-2012, 08:05 PM   #2
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Default Programmable shunt?

Spaintay- What about a programmable shunt? I too have slit ventricles and have had a lot of procedures bc of it. Finally my neurosurgeon decided on a programmable shunt to see if this would help w some of the high and low pressure symptoms. It definitely has. I have had the pressure changed quite a few times because it was less invasive then a tap or guessing game. Also- mine has a reservoir; I can sometimes feel whether I am high or low by the way the reservoir feels. Hope you feel better!
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Unread 04-11-2012, 12:16 PM   #3
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Default When somethings not right...convince people otherwise

I went to my Neurosurgeon yesterday...the second one in almost 3 years. I had been trying to convince doctors for the longest time there was something wrong with my shunt! So, yesterday I went to my 2nd appoint with my new neurosurgeon and he finally tells me after looking at the most recent MRI's and looking at the spinal tap results there is something wrong with my shunt. I have known this for a long time now. Anyways, I have to have surgery on a shunt that's 27 years old. The nuero is unsure if he want's to just completely replace the shunt or put a 2nd one in. The condition has gotten so severe the ventricles are starting to swell and that's what's causing increased headaches, vertigo, and seizure activity. My shunt is over 27 years old i have had it since i was 9 months of age. Never had a revision. So this is something I'm not anticipating. I've never even had a surgery in my whole life. When something doesn't feel right...it isn't. Trust your gut.
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