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06-27-2011, 12:50 PM | #1 | ||
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I have a few questions for those that maybe able to help. I don't know much about my hydro only that There was some kind of injury around birth to 3months. and a VP shunt was needed.
from what my mother tells me, my shunt no longer functions, but has been inside me now for 24 years with no revision. ever. I am wondering if the functionality of this shunt is true. If its not working. is it possible to have a non functioning shunt inside for this long? if anything, Id think that it is working, if an obstruction has been created to disturb the flow of CSF then a shunt would certainly be needed for life am I right? and if not then how does this occur? I've had no problems with my shunt until recently I've gained some weight. I've noticed tenderness around my shunt on my neck and my neck seems a bit stiff. Oddly enough I had an odd side stitch that lasted for more than an hour. I thought it might be nothing related to the shunt, but then that night I was awoken from sleep at around 2am with a side stitch like pain in my abdomen where the shunt lies. the pain persisted every time I took a breath. Later I was able to fall asleep and it hasn't occurred again. I know very little about my condition, I've tried to get a hold of my old medical records and its been a run around. if anyone has had any of these experiences, or any advice, opinions, would gladly be welcomed. thank you. |
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06-27-2011, 01:38 PM | #2 | ||
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I've had hydrocephalus since I was 2 months old. I had 2 shunts at one point in my life and like you one of them stopped working along the way (probably around 8 or 9 years old is when they think it stopped working. I had a revision on my working shunt when I was 13. Since I've been ok with just the one shunt. The dr's didn't want to replace that 2nd shunt since I was showing no symptoms. From my understanding they have the idea "if it's not broke, don't fix it." So, I've been living for about 15 years now with that non working shunt. So, it is possible. Recently I've been having some symptoms with my working shunt and they've been doing all kinds of test to prevent having to replace the whole shunt. Just trying to figure out if there are blockages in a certain place so maybe they can just replace the valve or the tubing. Maybe your body has been able to handle the CSF for all this time but now it's getting to where it cannot sustain it anymore. I suggest you see a neurosurgeon just to get it checked out. Throughout the years i had CT scans and a dr checkup once a year to make sure all was working. I can tell you from experience when that shunt stops working and your body cannot function without it that you are SICK!! Last time I had to get a revision I was vomiting, had a headache that would not go away with any kind of pain med, and wanted to sleep all the time. I feel that my shunt is still working right now but is just slowing down. I really hope you are able to figure this out. Sorry, if I havent' been much help to you.
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06-27-2011, 06:37 PM | #3 | ||
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I was shunted near birth and had a few revisions, but nothing for 30 years. I often wondered if mine was still even necessary, particularly since that would make it likely I could get health insurance and life insurance if it were no longer needed. Then, after about a 30 year layoff, those familiar symptoms appeared. I went to a clinic, got a scan. The neurosurgeon's intern was amazed at how full my ventricles were, and they got me into surgery immediately. Your mother might be telling you this as a way to assuage any fears or developmental, social impediments she might think she notices (mothers can be so wonderful that way..) but don't take her advice. Assume you still need it and it is still working bec these conditions to not just go away.
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