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Name: chris0212 | Date: Jul 1st, 2010 3:03 AM
My daughter is three, she is on her second shunt. Got the first shunt when she was three months old. 

Name: Jasmine | Date: Jul 30th, 2010 4:19 AM
I recently found out that my 1 month old has been diagnosed with hydrocephalic. I am so scared that he is not going to be able to live having a normal life. He has to have a shunt for the rest of his life and it can always fail, but will my son either die from it or have mental retardation in the future to come for him? 

Name: rjbrown910 | Date: Sep 23rd, 2010 12:13 AM
We live in NC. My grand daughter has Dandy-walker, vater, & hydrocephalus. She is almost 8mths old and is our biggest joy, our little angel. For all her birth defects, we are blessed that she has the least symptoms or signs..she had a shunt placed at 1 day old with a revision and then infection, having to have a new shunt placement. But she is a fighter. We were so terrified and felt so alone when we found out at my daughters 5 mth ultrasound. It seems like we've been holding our breath for all these months & now we can breath. So if anyone ever needs to talk or have any questions, feel free to email [email protected] 

Name: Pascella | Date: Dec 6th, 2010 2:07 PM
I am 19 yr old girl born with hydrochephalis i live in namibia i hav trouble walking and i have a vp shunt 

Name: Pasy | Date: Dec 6th, 2010 2:07 PM
I am 19 yr old girl born with hydrochephalis i live in namibia i hav trouble walking and i have a vp shunt 

Name: shaunz77 | Date: Jan 20th, 2011 10:03 PM
My child was not diagnosed with it but his Neurologist has mentioned it as well as he said the reasons for his problems is because of his small head.

I have a 4 year old child with mild Cerebral Palsy as well as seizures and global developmental delays.

Please check out my blog:
With a Child With Special Needs

Please pass it on if you know anyone interested.

Thank You,
Shauna Johnson 

Name: Sam | Date: Jan 26th, 2011 6:03 PM
anyone here? 

Name: sm syeda | Date: Feb 12th, 2011 7:11 PM
hello my daughter who is ten yrs old now has a hydrocaphlus due to mengites does anyone like to share thier story with me here 

Name: ben johnson | Date: Apr 13th, 2011 8:50 PM
hey my name is ben i am 21 and got hydrocephalus wood love to meet people with hydrocephalus my msn is [email protected] 

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Name: infinitepain | Date: May 8th, 2011 12:59 PM
I was born with hydrocephalus and I am 29 years old. I have to shunts and had constant pressure in my head for four yeards .has anyone heard of having three shunts in the skull at the same time? (One outside the cyst and two shunts inside the cyst) the doc said the cyst is so big it needs two shunts to drain it. I had two shunts replaced 16 years ago and never had a problem until 2007. 

Name: betty boop | Date: May 14th, 2011 6:04 PM
hi all, i hve a 18 yr old daughter with sp,she is at collage studying health & social care, mathematics,english . beind in a wheelchair has not stopped her doing what she wants, she now wants to start a basketball team. 

Name: Lelethu | Date: Jun 21st, 2011 8:44 AM
hi there,my 6 month old was born with myelomeningocele(spina bifida),as a result had hydrocephalus.he had a VP shunt at 2 days &thereafter 4 revisions.had menengitis&seizures at some stage.now after the last op,his vision was impaired.please help,how best can we care for him&what can be done to make his life easier? 

Name: Wicky | Date: Aug 8th, 2011 5:11 PM
I was born with hydrocephalus and had two shunts put in the back of my head. I went back to the hospital last august and they said I needed a thirs shunt because the cyst is so big. My eyes hurt bad for four years and the new shunt is in. Why is my eyes still hurting so bad? And why do I feel ill and irritable like I'm dying? I don't understand because the doctor keeps telling me I'm ok when something doesn't seem right with me 

Name: cruz | Date: Nov 17th, 2011 3:30 AM
hi i have hydrocephalus would love to chat with people that have the same i am 13 

Name: cheergirlcolee | Date: Feb 7th, 2012 3:42 AM
I've had hydrocephalus ever since i was born and I'm 12 now and I'm very healthy and happy. to anyonewith this, its going to be ok. i promise. it may seem like its not, but it is. 

Name: donna | Date: Mar 6th, 2012 10:46 AM
hi my name is donna i have a baby with hydrocefulas and she is neaerly 1 in april she is not sitting up yet she was 11 weeks prem and is useing one side of her body more could any body tell me weather its a clue that she has a disabilaty 

Name: K. Wright | Date: Apr 10th, 2012 2:05 AM
My son passed away and I wondered if there is a support group that helps with that? 

Name: Courtney | Date: Jul 17th, 2012 8:07 PM
Hi moms, i need advice/help/support! I have a 3 year old boy that has Hydrocephalus w/ a vp shunt. it was placed when he was 3months old. We (Thank god) have had no revisions no complications. My concerns as of now are phycological and emotional. We just had a visit with our neurosurgoen and he recomended seeing a neorologist. Im confused as to why now? Yes i feel he does need to be properly evaluated being he is very emotional and angry but i dont understand why it took so long? or what is different now that made this necessary? Secondly i am Left at a blank when trying to explain to a 3year old why he has a lump on his head when his 4year old sister does not? Very frustrating and confusing when your 3 and 4 year olds are fighting over wanting the lump on their head. Another question is should i start explaining to him what he has or atleast why we go and take so many "pictures" of his head and belly? if so how do you tell a 3 year old he has a vp shunt? Any help would be great i feel alone and frustrated and tired and my engine is running out of steam here. 

Name: cmattson | Date: Sep 24th, 2012 9:35 PM
My little man was diagnosed in utero with hydrocephalus at 35 weeks. He had a ventricularostomy at three weeks and then a shunt placed in at three weeks.we recently found out he has left visual field loss in his eyes and is not curable.He also has left sided weakness. we told today he may have autism and be having seizures as well. I feel so alone if there is anyone that could chat to to help me cope please contact me. 

Name: Holly | Date: Jun 30th, 2013 11:43 PM
I was born with Hydrocephalus and had a shunt replaced ar 2 days old. I have a lazy eye that was caused from the bleed. Yet it is only noticed when I am tired. I have terrible depth preception when driving,Along with ADD. Causing me to have severe problems paying attention. As well as fine motor skills. It is very hard to work and do small tasks with my hands. Does anyone else have or know anyone who has these problems? I would love to talk. 

Name: Kitty | Date: Feb 1st, 2014 9:34 PM
I know how you feel, those with children with this condition, or adults still living with it. Hi, I hope this is okay, but I wanted to share with you. Today is the birthday for my late son, Robert Joshua-Lee. My Robbie was a sweet boy, who never asked for his condition but was given it anyway. Hydrocephalus is out there and it is real. My son, was born on this day, 2nd Feb. 2005 with this condition, and lived with it for a good stretch of 22 months. Such a meager life for a boy that should been able to run around in the yard with his sisters, but never got that chance. Not a day goes by, that Robbie isn't on my mind. I miss my special little boy, and for those that know what it's like to lose a family member, let alone one of your own kids. the pain hits all too hard on their birthday. So excuse me for crying, and being upset today, but this is going to be how I deal with today, becos it has been 9 years, since my little guy was born, and would be celebrating his 9th birthday if he were still alive. I miss you son, Why did you have to leave me? 

Name: Kiana | Date: Feb 3rd, 2014 5:36 AM
Ive had hydrocephalus since birth.And my shunt broke back in 2007 and im fine.i haven't gotten it removed either.im 15 

Name: IzzyMommy | Date: Mar 13th, 2014 3:32 AM
Hi my son was diagnosed in Oct of 2013 with a massive hydrocephalus with Chiari malformation and Syrinx. They are not running tests to see if he has Multiple Sclerosis as well. 

Name: douglas knight | Date: Mar 29th, 2014 8:54 PM
my name is douglas knight i was born 4 months early i was born with hydrocephalus i am 22 now and want to chat with people who know what i am going through 

Name: holly | Date: Jun 12th, 2014 5:06 PM
I hade a vp shunt put in when I was12 weeks old I just a few days ago hit my head hard right near the sight my head on that same sude has hurt realy bad why 

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