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hydrocephalus group

DRIVER
0 Recommendations

Many people who have heard my story are amazed, but I have lived it and it seems normal to me. I was born with hydrocephalus and porencephaly. I was very sick for a long time with seizures and being in and out of the hospital. I did not walk until I was 31/2 years old. I have a very large head, but it didn`t seem to affect my thinking or mobility. I do not have a shunt, because shunts were not available when I was born. I graduated from high school and am married for 35 years with 3 stepsons and 1 son of my own. I am now 65 yrs old and retired. Every time I go to a new neurologist , he or she is amazed that I survived this long. Your life expectancy was very short in the 1940`s and 50`s. My wife says I am an anomaly. Have any of you defied the odds? Peter

Explore topics in this discussion:

Porencephaly Surgery Hydrocephalus Stroke Seizures Fever Schizencephaly Pain Memory Spina bifida

13 replies

nornd

Hello driver, your story is interesting. My son was born forty two years ago with severe hydrocephalus. He was treated with a SpitzHolter shunt which came into use only eight years earlier. Have you had recent ultrasound scans? If so what does your brain look like? My son's recent scans show quite a bit of past damage, yet he went through normal school system and lives independently, although he has never married. When you say your head is large, how large? My son's head is large too but looks okay. You are amazing. Cheers.

dfahrenholz

I haved lived with it for 46 years. They were going to operate but the fluid went down on its own the day of the operation shortly after I was born. My head is larger but not too noticeable.
I get headaches but water seems to help. In my case I also had severe ear canal infections which damaged my hearing permanently. These infections lasted for 13 years then stopped even though they removed my tonsils at 6 years old. Luckily my Mother found two doctors who were able to restore most of my hearing through cochlear reconstuctive surgery.
As far as brain damage it seems to had the opposite effect. I have tested quite high. Who knows, perhaps it was higher before the fluid.

nornd

Well done, dfarenholz, sounds as if you have come through it all very well. Have you ever had to have a shunt?

dfahrenholz

No I never had to have a shunt but I have had severe life long headaches. Recently I discovered water helps mitigate them somewhat and exercising my neck muscles helps as well.

When I was born the doctors simply allowed the skull to expand and were waiting on the "right"? moment to insert the shunt. I guess they waited long enough and the fluid was absorbed back into my body. That was in 1963 and I suppose they were still learning the issue.

According to the doctor mine resulted from my mothers illness at the time which was scarlatina (scarlet fever). She was quite ill and was in bed for two weeks after she had me. I am very lucky to be here because my mother's first child was a boy but she lost him when she fell. It also resulted in my ear canal problems. I am very thankful I can hear nearly normal and even fly and swim even though they warned me not to.

I never really researched my condition until recently because of the constant headaches. The headaches have minimized greatly so I feel good about that. I also never realized how prevalent it was. I knew I had a big head because most hats were too small or very tight but luckily my body is a close match, somewhat stocky.


I luckily married a beautiful woman and my son is in the Marines and service in Iraq right now. So all in all I feel very blessed.

bubbitt

Hello there dfahrenholz. I am Nornd's son (refrred to in Nornd's reply to Driver) You have quite an intriquing story
I have congenital hydrocephalus and have a shunt. I started to research my condition some years ago as I started to get very ill with severe headaches, and thought they might be shunt headaches, and knew only a little about shunts and hydrocephalus
. As it turns out , they weren't shunt headaches, they were brain injury related headaches, from doing too much running around!
Luckily , those headaches are pretty much gone these days, thanks to taking things more quietly and slowly
Doing the research was quite a revelation and I learnt a lot. I've not had a shunt revision for many years now, and my hydrocephalus is most probably stopped (arrested)
I work only part time as working full time is too much and I get ill.
Hope you continue you research into hydrocephalus, and your headaches improve some more.

sbhadult

I was born with Spina Bifida. I also had hydrocephalus at birth; nothing was done then. I've completed college and graduate school, with a degree in Special Education.

I finally had a shunt put in at age 19 (revised about 10 years ago), because of neck pain. Turns out it was due to Chiari II malformation, assocated with SB.

DRIVER

MY head size is about81/4 to 81/2 hat size . I don`t know the exact size in inches or centimeters. I have a cyst about 9 1/2 cm which has compressed my brain to the left side of my skull. My son who is 30 just graduated with honors from college with a degree in chemistry . It was paid for by the Air Force, he spent 3 years in the military. He received a scholarship to University of California Davis for graduate school for his masters and doctorate in research. We am so proud of him. All my stepsons are married and doping very well. Peter

nornd

Hello driver. Your son has done well, and your stepsons too. I'm not sure what my son's hat size is, but he does have a larger than usual head. I think all you people with hydocephalus are amazing, with what you do and achieve. Cheers.

nornd

Hello sbhadult, congrats on getting your degree. Keep up the good work. Cheers.

dragonfly1980

Mt son was born 3 months early w/ hydrocephalus. He had a really rough time in the begaining. He had to have 10 brain surgerys befor he was 1 year old. They told me he would never walk or talk, or do anything on his own. They said they would be surpised if he even pulled through it at all and lived. He had a stroke when I was around 3 or 4 months pregent. They told me it was a 1 in a million chances of this happening.

He is 10 years old now and he does suffer from really bad headachs. To the point I have taken him to the hosptail thinking it was shunt failuare. But we ( me and Doctors) have agreeded on Migrains.
He walks with a limp and doesnt use his left hand. He struggles with learning. But over all he is as normal as the rest of the kids. He is very involved in Boy Scouts and does a lot with them. He loves camping and trys really hard to fish. He likes to bowl also. He does struggle but he trys his very best.

It has been a long road but it was all worth it to have him here with me today. He is my little merical baby.
I had him in every theropy I could find in my area. He was in theropy 3 to 4 times a week and I worked with him at home every chance I had.

dragonfly1980

It is amazing your life is a true merical. I think with out the shunt my son would have died. I watched him faded away everyday with out the shunt. I could see a big diffrence when they placed it.

DRIVER

To all,
Keep up your resolve and do the best you can. I did not know my condition when I was younger. My parents refused to admit I was different because I acted normally and was reasonably smart. They ignored the signs of trouble when I came home with bad grades. They would punish me. I was very withdrawn because of the way I was treated in school. I was different and was ridiculed because of it. I was so depressed and ashamed of myself. My parents never went to the school to find out why I had such bad grades.
The situation improved when I entered high school because my body finally became big enough to compensate for he size of my head. My grades also improved . I was accepted into a college, but certain parts of my memory could not absorb the volume of material that was given in college. I still have memory lapses both long term and short term. I have learned to live with them and have lived a productive and joyous life in adulthood.
Peter

Speakingwings

I was so called normal at birth.By the age of 7 months old I had a high fever I was taken to the dr he gave me a shot that isn't on the market anymore.I was down asleep for 3 days when I woke up my left arm was drawn up I was crawling before that time.I was then diagnosed with cp had all the surgies that went with that.My first surgery was at 2 yrs old.By the age of 16 yrs old I was diagnosed with a stoke.They said at the age of 7 months old.At the age of 37 yrs old I was diagnosed with open lip schizencephaly which means clefts in the brain.Also hydrocephalus or water on the brain so I don't have a right brain it rewired itself to the left side.God put me on the earth to teach others I know this.I live without a shunt probably always will.But I drive a van.Have a daughter,walk talk etc it can be done.Have Faith.

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