Re: [hydrocephalus] Porencephaly and hydrocephalus
Hi-
My name is Jill and I was born with Dandy Walker Syndrome Hydrocephalus, and luckily mine was caught when I was barely a week old. I do have a slightly enlarged head, but other than that i don't seem to have any other physical abnormalities aside from misaligned big toes. I have had over a dozen surgeries though. The first shunt that was placed in infancy was a VP. Following that I have had revisions, and tube replacements due to blockage. Until recently my shunt appeared to be working. In 2002 I had my second child and then shortly after had complications which were thought to have been due to a Pituitary tumor. I later had surgery to remove that, and lost peripheral vision in my left eye. After having this surgery my pediatric NS reviewed my scans and was appalled upon realizing that was not the problem. My shunt had malfunctioned, and he called a specialist in SF to review my file, an perform surgery to fix it. During this whole time I was having terrible head pain, and was informed by this surgeon that I would be flown to SF to have the emergency surgery if my symptoms worsened before my scheduled date. Luckily that didn't have to happen, and I was transported to SF in July of 2003 for surgery. My VP shunt, which was found to have disinegrated was replaced with a Programmable one. Since having that surgery though I have been dealing with pain periodically. It has gotten worse in the years since my surgery though, and I fear that it may have malfunctioned as I have read that the expectancy of a shunt is only 3-4 years and I am going on 6 with mine. Aside from that I was originally wanting to let you know that I have had two children with normal pregnancy, and deliveries who do not have any signs of Hydro.
Best Wishes-
Jill
33 yrs old
Ps.... I do have poor eyesight which I am told was due to hydro
In a message dated 2/9/2009 3:05:36 P.M. Pacific Standard Time, monica_thornton2003@... writes:
personally i have hydrocephalus.... my parents found out when i was about 6 months old... they were going to put a shunt in,,, but the next day i didnt need it... i am now going on 33yrs old... i have never had any issues but vertigo, headaches, and of course the big head... i am greatful to be how i am... and my fourth child was also born with mild hydro... though they say its not hereditary.... FYI-my father also has it. --- On Tue, 1/13/09, pjdkmc17 <pjdkmc17@yahoo.com> wrote:
From: pjdkmc17 <pjdkmc17@yahoo.com> Subject: [hydrocephalus] Porencephaly and hydrocephalus To: hydrocephalus@yahoogroups.com Date: Tuesday, January 13, 2009, 1:24 PM
How many of you out there have both conditions or have kin with both conditions? All I get as far as feedback on my condition is a shake of the head and "I don`t know why you survived or are able to function normally." Peter
How many of you out there have both conditions or have kin with both conditions? All I get as far as feedback on my condition is a shake of the head and "I...
personally i have hydrocephalus.... my parents found out when i was about 6 months old... they were going to put a shunt in,,, but the next day i didnt need...
my father, myself and my daughter ... From: monica thornton <monica_thornton2003@...> Subject: Re: [hydrocephalus] Porencephaly and hydrocephalus To:...
Hi- My name is Jill and I was born with Dandy Walker Syndrome Hydrocephalus, and luckily mine was caught when I was barely a week old. I do have a slightly ...
Jill. Long story short with me. Im sally. 30 years old. First shunted under emergency status when I was 23.A doctor did a cat scan and saw that my whole head...
Thank you for all your replies. I don`t know what kind of procedure they would have performed on me when I was an infant because they did not know what to do....
Thank you for all your replies. I don`t know what kind of procedure they would have performed on me when I was an infant because they did not know what to do....
Happy birthday peter! You truly are a miracle walking - and from my little miracle (kaila) to you - may you have many more! Michelle ... From:"PETER...
Sally- Thank you for the information. I am a little confused though, your ns told you that pain in the shunt area was the normal healing process ? Mine was...
Jill, Yes. I just went on friday for a follow up and told him that I was having some headaches and my shunt area was sore.....I just had surgery on Dec 30 so...
Peter- First off, Happy Birthday ! I am overjoyed to know now that life expectancy is not very short as I was led to believe years ago ! Do you have...
Hmmm....NO I have never had the drainage from the ear thing...and whenever I bend over or get up quickly I feel the pressure and i have to take a sec to get my...
I am waiting on my insurance and my primary care to refer me out. Hopefully it is not the same doctor I saw the last time ! He didn't seem to be or want to...
Dear Jill,     I have one child of my own and three step-children. They are not children any more.     My three step-sons are 47,46 and 44. My son...
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