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A copy of the current financial statement of the Dandy-Walker Alliance, Inc. is available by writing to: Dandy-Walker Alliance, Inc. 10325 Kensington Pkwy Suite 384 Kensington, MD 20895 or by calling 1-877-Dandy-Walker. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Maryland Secretary of State, State House, Annapolis MD 21401, 410-974-5534.
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looking for answers

My daughter is 3 years old and has had an MRI some time ago before she was 1 and was diagnosed with Dandy- Walkers Variant.I do not understand a lot about this nor do I have a support chain for this… My question is this does every person that has been diagnosed with DWV have a shunt? They say she is like a “water head baby” without the water…Has anyone ever heard of this and then my last question …How do you get around to finding out if you can have a child retested? where as I feel like she has been misdiagnosed ..thanks for all your help with these questions….

February 19th, 2010 | Category: General

3 comments to looking for answers

  • Eric
    February 22nd, 2010 at 9:04 am

    Great question. No, not everyone with DW will be shunted. Shunts are used to treat a condition called hydrocephalus. The statistics I’ve seen suggest that somewhere between 70% to 90% of individuals with the DW Malformation will be shunted at some point.

    If your daughter has has a CT or MRI your doctors will be able to advise you on whether hydrocephalus may be a concern or not. All that said, over 1 million American’s have hydrocephalus, many with shunts and are doing really well. While any new diagnosis is scary hydrocephalus is treatable.

    I’m happy to speak with you more about our experience with DW, hydrocephalus and VP shunts if you like.
    Thanks,
    Eric
    301-919-2653

  • Maxinepink
    February 25th, 2010 at 3:08 pm

    Hi…My daughter is 21 months old, born with DW Malformation.. at 3 weeks old she had a shunt put in to help drain the cyst that she has..the neurosurgeon told me that Gracie’s hydro is secondary to the DW. so basically when the cyst is controlled she doesn’t have the hydro and vice versa..and the shunt that she has in is called a CP shunt which is inserted straight into the cyst.. anyways Gracie had 6 shunt ops to date and she is doing really well…reaching milestones for her age and to top it all off she started walking by herself yesterday…she is such a pleasure to have..

    I would be very happy to help in any way i can
    Thanks
    Maxine

  • geena
    March 1st, 2010 at 2:52 am

    My daughter was born with DW but did not need a shunt. At the age of five, we learned she had developed very high pressure in her brain because the CSF was not draining properly. We are not sure how long she had the high pressure but she began to complain of headaches so we took her for a CT scan where it was discovered. Instead of a shunt, she had a cyst fenestration and has been doing very well since then. It is now over two years and we are praying that she continues to do well.

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