Does anyone have any experience with this strange phenomenon called negative/low pressure hydrocephalus? I've been "googleing" it and all I see is normal pressue hydrocephalus and how it affects the elderly. My daughter is 17 has had a shunt since birth. She is multiply disabled and recently developed this after mutiple shunt malfunctions and is now hospitalized for 4 - 6 weeks to try and get her brain to even out the pressure again. I am very puzzled about the treatment for this. Her shunt is currently externalized and the course of treatment is to externalize at negative numbers to "trick" the brain into equalizing the pressure again. I am so confused!!! I'm so afraid that they won't be able to fix this!
Gabriel's Life » General
negative/low pressure hydrocephalus
(4 posts)
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Posted 4 months ago #
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Posted 4 months ago #
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Meggles--
Is this a result of over-drainage by the shunt? Over drainage can be common when shunts are not at the right setting.
Martha
Posted 4 months ago # -
My 14 yr old daughter is currently dealing with this. At first they thought she had a csf leak, but found the leaks were caused by the gadolinium insertion. She has since had two rounds of ICP monitoring which showed low pressure. Last week her strata valve in her Medtronic shunt was replaced and additional shunt assistant was placed under it. She has had a decrease in the severity of pain, but still has a headache when upright. I am still waiting to hear from the neurosurgeon to see what to try now.
Posted 3 months ago #
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