New Member
|
|
Join Date: Oct 2010
Posts: 3
|
|
New Member
Join Date: Oct 2010
Posts: 3
|
Desperate for Help Dandy-Walker with Orthostatic Headaches
Hello, My 14 year old daughter was born with Dandy-Walker, and has done amazingly well, IQ of 114, rides a bike, etc.. At age 10 she started having one or two shunt malfunctions a year. The NS put in a Medtronic adjustable shunt in May 2009. She felt fabulous, until October 2009. She came home from school with a terrible headache that only went away when she was flat for several hours. One year later she has had several anti-siphon valves, new strata valves, blood patches (thought they saw a spinal leak) ICP monitoring 14 procedures total and still cannot be up for more than 1 hour without a headache, by 2 hours the pain is severe. It has gotten better since her last surgery in June, at least she can leave the house in a reclining wheelchair. Our new NS says he has never had a patient like her. Has anyone heard of anything like this? Can anyone help? She needs some hope that things will get better. Thanks
|