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

Hi Sophiesmom and welcome to NeuroTalk. I admit to being unable to find a forum here for Dandy-Walker w/Orthostatic Headaches so am unable to direct you anywhere. I'm so sorry for your daughters condition.

You might try posting this in our Rare Disorders Forum and see if you get any responses.

Here is that link...http://neurotalk.psychcentral.com/forum2.html

These forums are wonderful for exchanging information and finding support. :hug:

Hi there sophiesmom96, and welcome to NeuroTalk, although I'm very sorry that you're daughter's been through such a tough time. :hug:

I did a quick search here for you to see if we've had other people posting about the same condition, and came up with the following:

http://neurotalk.psychcentral.com/se...andy-Walker%22

Have a read through those. Not all members who've posted about the condition are still active members, but some are ... so I do hope they will see your thread, and come give you some help.

I have Dandy-Walker variant, but I don't have a shunt, so I can't really help you there. There must still be problems with the shunt, maybe not draining properly, to still have constant headaches. I hope she can find some answers soon!
~Jaime~