Hi! My name is Michelle, my son will be three 2 weeks from today and was diagnosed with Dandy Walker Variant today after having an MRI last week. I have never heard of this before and I know nothing about it. I am looking for any information anyone may have. Thanks a bunch.
Hi Michelle, My granddaughter is 15 months old and has Dandy Walker varient too. The varient part of this diagnosis makes things a little confusing, it isn’t classic dws but usually only some parts of the syndrome. Depending on which specific parts will help you figure out a little better what to expect. In our case, Tess has hydrocephalus (too much fluid in her ventricles), a large cisterna magna and a very thin corpus collosum. For us it was easier to take all the different things that together gave her a dwv diagnosis and learn about each of them independently. Hydro for example is present in about 70 percent of dw cases or can be a condition by itself without any of the other stuff. Hydro is the only part of dw that can require surgery if too much fluid builds up and causes too much pressure. Did your Dr. tell you any specifics? What parts of your sons brain are affected and how? May I ask why they did the MRI in the first place? Was he having any problems? Some people go through their whole life and only find out as an adult they have dw by accident, get scanned for another reason and it shows up. The outcome can be very different from person to person. Many patients have proved the “doom and gloom” Dr.s wrong and end up being able to do far more than their parents were told when first diagnosed. Many are college gradutes and have families of their own and do just fine.
If your son is having any developmental delays getting started with early intervention can help that. Pt and Ot is essential to help our kids overcome a lot of this stuff. Another great source for information is the dandy walker alliance. It was founded a few years ago by Eric Cole, who’s son is about the same age as yours. He has done wonderful things for the dw community including being very instrumental in getting a bill passed a couple of months ago in congress to advocate for more research into dws. Their website is full of information. Please feel free to add me as a friend and email me if there are any other questions I can try to answer for you or help in anyway.
I totally agree with you. With something that can affect a person like DW can, it’s hard to imagine that it could just disappear without any residual effects.
My name is Mary and I’m 39. I was just recently diagnosed with having
DW variant. It’s started showing its ugly face and started causing
headaches, dizziness, memory problems, balance problems among other
symptoms. I live in North Carolina along with my husband and our kids. I look forward to getting to know everyone!
Personally, I think whenever there is a problem in or near the brain where they actually have to cut, poke, etc. in the brain tissue, there will be some kind of residual effect.
Medical science acknowledges it does not have a full understanding of what ALL the brain does or even how it can do some of the things it does. Who knows what tiny area got ‘bumped’ during a surgery and is causing effects. Not complaining - it is much better than not doing anything!
I was born with DW variant since I’ve never had any brain surgery either. It does make me wonder what could have caused it though.
Mary, I’m curious to hear more about what’s happening with you. My son was born with DW but it supposedly “repaired itself” by one year. He has misc. odd symptoms on occasion including balance issues, short term memory stuff, occasional head and other body aches.
I’ve had headaches, dizziness, balance problems, lots of memory problems, nausea, body aches, among other symptoms. It sounds like my symptoms are very similar to the ones your son has been having. My doc is in the process of referring me to a neurologist. I’ll definitely let you know what happens.
I would love to know more. It is hard for me to imagine that even though the DW has been fixed, that my son doesn’t have some residual issues from it and he likely other neurological symptoms/issues such as sensory, balance, pins and needles in feet lately and sometimes hands, tummy aches. Hard to know if it is related to the DW, the potential genetic disorder, anxiety or something else.
To: s2adi@msn.com
From: dws-cpt2245@lists.careplace.com
Subject: Re: [dws] Dandy Walker Syndrome Member Introductions
Date: Sat, 18 Oct 2008 11:57:54 -0400
I’m new to this forum having my unborn baby girl just diagnosed with dandy walker variant. According to all of our test results, the baby is developing normally with the exception of a partial vermis (there doesn’t seem to be any other abnormalities to be found). I am currently at a loss with how to deal with this news and what is the likelihood that our child will lead a normal life?
I’d love to hear back from other people who have been through this with a diagnosis similar to ours as i’ve had difficultly finding information regarding our possible outcomes.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
my daughter was diagnosed with dandy walker before she was born, her forehead is slightly misshaped(you have to look really hard to see it), she use to fall off balance often but has improved alot. The two main symptoms now are nausea(about every two months)and developmental delay( vocabulary and emotional is about 2.5 to 3 year old level),she will be 4 in feb 2013. Everything else seems to be normal so far. She is in a regular daycare but they(department of Ed.)want me to consider specialized school. I will have to think long and hard about that because they(department of ed.)are currently not doing a good job(children have been left behind).
hello all i was told at my twenty one week ultra sound that my baby may have dws or the variant. as you all know there isnt much info on it and it seems as if the healthcare providers push for termination and gives worst case scenarios. i did the amniocentisis and the preliminary results came back normal. waiting for the rest of the chromosome results. i have an mri next week and a little nervous. the doc said it appears that my baby has hypoplasia of the vermis and some splaying of the lower cerebral hemispheres. does anyone else have experience with this?
my son 18 years old, dignose dandy walker variant since 5 years, generally normal person, some headeck2-4 days per month, quick temper, no treatment,