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| General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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08-29-2008, 11:02 PM
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I'm just wondering, if there is anyone else here who has Dandy-Walker Syndrome, or malformation, or variant?
I was diagnosed this year (Confirmed this year, but suspected years ago!) with Dandy-Walker Variant, I was told it was a mild variant, but it explains a lot of my past medical history. It's diagnosed early in infancy or before birth, these days, but it wasn't heard of 40+ years ago, except in extreme cases. Just curious if there is anyone who knows what I'm talking about!  lol~Jaime~
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09-27-2008, 02:18 PM
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Hi Jaime!
I'm sorry I'm just now seeing this... My niece is almost two years was diagnosed with Dandy-Walker's about 4 months prior to her birth. She is a cool little girl with no noticible problems from the Dandy-Walkers... We know things might develop as she get's older... but it's just a wait and see for now. Just wanted to let you know that you are not alone.  Abbie
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My avatar pic is my beautiful niece Ashley! . Rest in Peace 3/8/90 ~~ 4/2/12
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| "Thanks for this!" says: | Jaime_S (10-01-2008) |
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06-10-2010, 02:42 PM
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I'm a new member. I have a 22 year old son who was diagnosed with a Dandy Walker cyst at age 9 mo. At age 7 he had his first shunt...he now has had 14? (somewhere around there) revisions and is having another next week. He had 5 revisions since November 2009. His distal tibing was placed from his peritoneal cavity into his gall bladder in May...it is now going to be placed in his pleural cavity. He's ready to be pain free.....
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06-10-2010, 02:50 PM
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I have a 22 year old son who was diagnosed with a Dandy Walker cyst at age 9 mo. He had his first shunt placed at age 7. During the next 7 years he had 9 revisions. Then he has had no problems until Nov. 2009. In the last 7 months he has had 6 revisions, moving the distal tubing from his peritoneal cavity to his gall bladder and next week to his pleural cavity. He is so frustrated and in such pain. Don't know what to expect with this new procedure...
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06-11-2010, 10:56 PM
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I was diagnosed as an adult. I don't have a shunt, thankfully, I had fenestration surgery on my large cyst, and I don't need a shunt at this stage. So, I don't know what it would be like to have so many shunt revisions.
 Hope your son's shunt re-placement goes well, and he doesn't need too many more revisions.  ~Jaime~
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