Hydrocephalus Support Group

my name is danielle i am new to the group i have hydrocephalus and would like to hear from others with their experiences. I was diagnosed at 13 months old and i am now 23. I have had no shunt revisions since 2004 but i am feeling like its coming soon i have been getting headaches and mood changes and nausea.

Hi sugarcookie , i am now 38 years old I was born with hydrocepalous myself . I w3as never shuntted as my mother was told it resolved itself. little did i know years later at the age of 34 i had an MRI

low and behold there was fluid still there . although i do get ocassional headaches and suffered enlarge ventricles . I wwas told there eas not point now in having a shunt placed at my age . what complicates matter is i have had 3 brain aneurysms in total . i had 2 fixed and still watching the other . There is always a eisk for me when they go in and repair them that he may aggervate my hydrocephalus . I wish you well and hope things work out for you

Post edited by: grafxbydiane, at: 12/16/2008 13:21

Hi Danielle,

I'm 44 years old and the mother of 3. I was dx'ed with hydro at age 37. It was believed that I had undetected hydro since birth and compensated for it for YEARS!

I had an endoscopic 3rd ventriculostomy (ETV) in 2002 and a shunt placed in 2004. I suffer from occasional "brain fog", confusion, and mild vertigo, but I'm pretty much functional. Sometimes my kids do get the best of me if I'm tired though.

I read that you have a son with autism. I have a son with congnitive delays. Caused me many tears, but he is such a joy! My prayers go with you.

Welcome to the group!

Mary

hey i friend requested you so your bf has bp so do i. I was diagnosed when i 16 its been a struggle but im on the right meds now and i see a counsler, once a week. how has your hydrocephalus been have you had any surgery. I cant tell you how many i have had

thankyou for your prayers your family will be in my prayers also.

Hi Danielle,

I would also like to welcome you to our group and pleased to answer any questions you may have. You say that you are experiencing problems with your shunt well so am I and only after 23+ years.lol So what are some of the things going wrong up in that nooggin of yours?

How is your balance & memory. Have you experience any confusion of forgetting your surroundings.etc anything even if you think it may seem stupid it may not be but you have to let me know.

Hope to hear from you soon. Now while you are here if you could on some spare time go headhunting for me and find another headcase like us that would be great.

Just the other day I was talking to my mother and I made a joke about having Hydrocephalus and she didn't think I should be joking. I told her I have had this 47 years all my life if I don't joke about I would probably cry I perfer the humor what about you?

Glad to have you aboard. Ron