Patient Comments: Hydrocephalus - Causes


What was the cause of your hydrocephalus? Submit Your Comment

Comment from: Grizz1y, 55-64 Male (Patient) Published: June 27

I suffered a traumatic brain injury just from slipping while cleaning my driveway of snow, it was very slick from an earlier freezing rain then snow on top. It had a slope to it so standing was almost impossible. So I was shoveling away and my feet all of a sudden were not where they were supposed to be and I landed on my head, bam! Oh well, I shook it off, finished my job and went for dinner. Besides I had hit my head many times, either from bad car accidents or skiing. Five years later (2007) it was noticed I could not walk in a straight line and I was shuffling my feet a lot. I was experiencing many aches and pains so I saw a therapist for that, she felt there was another issue and asked my doctor to have an MRI of my head done. Bingo! They found the problem and it was a big one; hydrocephalus (water on the brain). I thought ok, just have the surgery and I will be ok. Well, all that happened in 2008 in the prime of my life, 48 and raising a family in a nice small town. It was told to me that it would be best if I retired as my symptoms were getting bad, I had plans to fly to a wedding in Vegas. My neurologist told me I needed to retire and not fly, if I had got on that plane I for sure would have died due to the pressure changing. So instead I chose the operation. Yes it saved my life, however that was about 30 brain surgeries ago (lost count) it has been about 3 and a half years since my last but not because I’m fixed, there are only 1 or 2 doctors that perform these operations in the city close to me and he felt the job he did was working, may be not perfectly, but working. So he cut me loose. I am slowly learning all the things I could not do before like walking. But it has taken a while, I still use a walker in the morning and at night when I’m tired, headaches at the level of 8/10 is normal and almost constant.

Comment from: Sera W., 0-2 Female (Caregiver) Published: February 09

Useful tips that the doctor gave me was to gargle with 3 percent hydrogen peroxide and minimize dairy intake.

Comment from: Saba, 3-6 Male (Caregiver) Published: November 04

I inherited this eczema from my mom. It gets worse if I eat black pepper seafood, chicken, beef, eggplant, coffee jaggery, etc. I used different ointments but no use. I am currently using urine, it is better than costly ointments.

Comment from: Lynn Marie, 13-18 Female (Caregiver) Published: September 09

Hydrocephalus is caused by dehydration. The cure is not shunting, the cure is water. My teenager has a shunt and now I am educated. She was a typical teen with no health concerns. She never drank water, drinking fountains at school did not work, no water bottles were allowed in class and at lunch she was offered the same size carton of milk that a kindergartner gets. We didn't know any better either and we trusted doctors who just repeat the shunting process because that's what's always been done. Bottom line is, hydrocephalus is the result of prolonged dehydration. The cure is water. When your body is dehydrated it sends any water it can to the brain, heart and lungs that's why you get tremendous headaches, that's why you get coughing or sniffly nose, you are off balance and can't open your eyes.

Comment from: Dr. D, 55-64 Male (Patient) Published: November 14

I had colloid cyst of the 3rd ventricle and VP (ventriculoperitoneal) shunt was placed. I had onset of symptoms of confusion, excessive somnolence and gait problem. One month later a large 3 + cm colloid cyst was excised successfully and there has been good improvement and full recovery is anticipated.

Comment from: SHAHRUKH B., 55-64 Female (Patient) Published: May 12

When I am hungry I can’t see any light, or focus. When I sleep in the night suddenly I get migraine headaches. I can’t tolerate more sun light.

Comment from: HOPE, 19-24 Female (Patient) Published: September 24

I am 23 years old and I had hydrocephalus when I was born but I already underwent a surgery when I was 1 month old. Everything is fine now except for one thing, I have been experiencing incontinence since I was a child causing me to wear diaper and never been able to urinate on my own; It will just go out whenever my bladder is full and I have no control of it.

Comment from: cintrone, 25-34 Female (Patient) Published: December 19

My name is Vangie. I'm in my twenties and I was born with hydrocephalus. I wasn’t shunted until I was two months old. I have had over 12 surgeries throughout my entire life. My last two surgeries were in 2001. The first one in 2001 I almost died but God is great. I haven’t has any surgeries ever since. Now, God has given me the chance to be a mother to a son. He is one years old. My son wasn't born with hydrocephalus. So have been very blessed. If I can do it so can you. Thanks for reading.

Comment from: maryslamb2011, 65-74 Female (Patient) Published: April 04

I have hydrocephalus and have had it for many years with a shunt to relieve it. Shortly before I was diagnosed, I had a fall from a 4-foot platform, which the doctor said may have caused it. I was also hit in the head as a child with a baseball bat, which may have also caused it and had it lying dormant for many years. They just do not know. I do know that with the surgery insertion of the shunt to drain the water I have been able to lead a normal life. My symptoms were headaches and being constantly off balance.


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Comment from: DoubleDKY, 35-44 Female Published: January 28

I had sudden onset of severe headache. I never have headaches, but this was the worst you can imagine. This occurred suddenly after I finished a session of the new Zumba video exercises. I had the headache for 3 days and noticed that one of my pupils was dilated. This lasted for about 24 hours. I saw my local MD who ordered a CAT scan of the head that showed "fluid on my brain." I have had no symptoms for the past 3 days but have limited my physical activity to only work. I am a Speech/Language Pathologist with the local school system; I have an MRI scheduled next Tues.

Comment from: amandalake26, 25-34 Female (Caregiver) Published: June 20

My daughter has been having very severe headaches; she would wake up in the middle of the night and would be crying. She is 6 years old. I took her to her pediatrician who sent her to the children’s hospital where they did 2 MRIs. One of the brain and one of the spine. She was diagnosed with Chiari malformation of the brain as well as having hydrocephalus. The doctor did brain surgery on her a week ago. She is doing so much better.

Comment from: See Well, 19-24 Male (Caregiver) Published: May 13

My son was diagnosed with hydrocephalus at the age of 3 months. I personally believe that it could have happened while I was giving birth to him. There was never any surgery performed on him, because the first time they checked him, they said they saw fluid and wanted to operate. But when he went back the second time, they said the fluid had miraculously disappeared on its own. My son will be 23 in July. He doesn't say anything and I was concerned about what I could do to remedy this. When he was younger he used to talk, but he won't say anything now. I would like to know more about the different surgeries or any shots that could possibly help him. He smiles all of the time and it makes me smile. Actually, he lights up the room with his smile. I just want what's best for him. Any suggestions would be appreciated.

Comment from: Norms, 45-54 Female (Patient) Published: April 22

I have just been diagnosed with hydrocephalus. I am 51 years and in the last month or so have had major headaches. They’ve caused me to vomit and have affected my vision. These may last for days, and no matter what pain medicine I would take, it didn't seem to ease the pain – it just kept getting worse. Following a CT scan, they were able to identify the problem. That was two days ago. It’s good to know what is causing the problem, but I am worried because one of my brothers died of this in the 1950s. I have an appointment with a surgeon next week. I’m a little nervous about what can be done and if it will work.

Comment from: 35-44 Female (Patient) Published: April 19

I have had hydrocephalus since birth. I was shunted at 23 months old. At that time, the surgery had only been around for about two years. I was one of a handful of children to have the surgery in 1976. I have had only two surgeries. My first surgery was when I was 23 months, and my last was when I was 10 years old. I've been fine since then.

Comment from: oldfinn, 55-64 Male (Patient) Published: April 16

I am a 63-year-old male. I was born hydrocephalic. The doctor who delivered me never told my parents that he had problems and had to use forceps to assist delivery. From what I was told in later years, he apparently used too much pressure and squeezed my head too much. No one noticed any problems until I was at the age when a child should try walking while holding on to furniture. I never did that. When my dad questioned the doctor, it was then that he was told of the delivery problems. At that time, shunt use was still experimental and the doctor did not advise it. I had some surgeries when I was a child to relieve the spasticity in my legs. The doctor that did those surgeries told me that there would be things that I "never" would be able to do. One being, I would never be able to father children. I wish that doctor was still alive today so I could introduce him to the three children he said I would "never" father. I am now also the proud grandfather of 10 grandkids. I am not saying I have had it easy. I manage the best I can. I have done work that is hard for "normal, able-bodied" people. Now I am experiencing age-related problems because of the hydrocephalus. But I am doing the best I can with what I have.

Comment from: FlowerBomb, 13-18 Female (Patient) Published: January 14

I was diagnosed with obstructive hydrocephalus at the age of 13. It started with horrible headaches, and I could never seem to get enough sleep. Along with the hydrocephalus being on the bottom left side of my head. I also get migraines on my right side. I've been on an off too many medicines to count, and have had more MRI'S and cat-scans then you could imagine. I'm 15 years old now and I still suffer with excruciating headaches and I sleep all the time. I was even taken out of public school and put in online school. The doctors don't know what caused my hydrocephalus, but they say I will eventually require a shunt in my head. This illness scares me to death everyday.

Comment from: Eve, 75 or over Male (Caregiver) Published: November 13

My husband just had surgery for hydrocephalus . The doctor never put a shunt in. Just drained the fluid. But now he is having awful headaches at the back of his head. They are scheduling him for another cat scan this week. Not sure what is happening.


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Comment from: 13-18 Male (Patient) Published: September 21

I was born with hydrocephalus, and I wasn't shunted until I was 9 months old. I am the youngest of 3 children, so my mother was worried when I wasn't walking, crying, or doing anything. I have very terrible balance issues and short-term memory loss. I'm just happy to be alive, but I still have to hear people ask me why I walk so funny all the time.

Comment from: joe90, 45-54 Male (Patient) Published: September 21

I'm 45. I got hydrocephalus after meningitis within days of birth. I had a VA shunt put in then which failed when I was 14. Then I got another VP shunt, which failed either top or bottom end over 10 times in 4 years. Eventually the surgeons put one giant catheter at the top end (doctors look aghast when they see my scans) and I have had no problems since (except epilepsy, which developed in my teens). I am extremely bright, I am told so, anyone worrying about hydrocephalus at the moment, don't get too disheartened. You could be lucky like me.

Comment from: linnann, 55-64 Female (Patient) Published: October 24

I was diagnosed with normal pressure hydrocephalus. I was having headaches, difficulty walking and memory problems. They did surgery a year ago and so far I am doing well. One month after the original shunt surgery, i needed a revision, the tube in my stomach moved out of place, so I had to go back to surgery for them to replace it. I've had to go in 2 times to have the shunt opened a little more, because I was having headaches from a buildup of fluid.

Comment from: ahmad, 0-2 Male Published: February 18

my son had hydrocephalus from birth.he passed away at the age of one and half years.doctors told us that he will be fine but they speaks son had 3 major skull surgeries in that period.I passed my lots of days in hospital with him.I felt he was in trouble.I love him very much and i miss him allot.he passed away since tow months ago.

Comment from: 13-18 Female (Caregiver) Published: November 03

My daughter was diagnosed when I was 8 months pregnant with her. She has Dandy Walker variant and a VP shunt was placed when she was 7 weeks old. We have had some scares but developmentally she reached her milestones on time and is now 13 years old. When she was 10, she had her first revision after experiencing headaches and memory issues. We have a great neurosurgical team though and hopefully we don't see them often.

Comment from: Gus K, 45-54 Male (Patient) Published: August 05

I had a Codman programmable shunt inserted about 8 years ago. Have been pretty healthy since, but do have balance issues and the Quasi Moto walk (dragging of the right leg) at times. Went to the doctor and they adjusted the shunt and are now waiting to see if symptoms improve or if a revision is needed.

Comment from: nannybird19, 75 or over Male (Caregiver) Published: July 05

There was not any particular cause to my hydrocephalus, I felt my husband was not behaving as usual, he lost 30 lbs. very quickly and he had cancer of the duodenem, 20 yrs. ago, which led me to believe it was a reoccurance. After going back to his doctor, seeing many specialists, about a year went by without any diagnosis, I finally took him to my internist and after a few months she diagnosed him with normal pressure hydrocephalus. Sent him to a neurosurgeon he put a shunt in, seems to be working OK.

Comment from: em, 19-24 Female (Patient) Published: April 22

I am 23, I have Spina Bifida. I was diagnosed with Hydrocephalus at about 10 days old; after closing my back at birth. I had my first blockage at 3 and have had 10 more between 13years old and 22. The space of time I get between surgeries was 4 years (16 years old then 20) down to 10-13 months. I have seemingly permanent daily issues with short term memory. I’ve learnt not to over-react when something goes missing however coping with family trying to cope, not understanding what this is like is very hard sometimes.

Comment from: Jamie, 45-54 Male (Patient) Published: April 20

I am 49 years old have hydrocephalus and was originally diagnosed before I was 1. They operated and put in a rubber tube between my third and fourth ventricle of my brain. The operations resolved most of the symptoms and I have not had to revisit the Issue. The only long term consequences have been I am quite physically uncoordinated and I have a particularly bad memory for names. On the plus side I am pretty good with numbers. I graduated from college and earned a Ph.D. in biochemistry and have spent 15 years doing Biological research.

Comment from: grandma, 55-64 Female (Patient) Published: February 18

I am now 60, had my first shunt at 15, they thought was congenital at the time. At 45, the shunt had to be replaced, the symptoms, falling, headaches, etc. The real thing no doctor told me at 59, I started having seizures, the buildup of scar tissue caused it. I wish the doctor would have said something.


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Comment from: tweetybirdnurse, 45-54 Female (Patient) Published: July 12

I have hydrocephalus and I was born with it. I am now 47 years old with no shunt. And I'm not mentally challenged. I also had two children who are doing fine.

Comment from: Chrissymarie, 35-44 Female (Patient) Published: May 07

I am 37 years old and have had hydrocephalus since I was about 8 years old. That's when I had the shunt put in. I have had the same shunt since then. But I have been having very bad headaches. I go to my doctor on Wednesday, so I am hoping it isn't anything bad. I also have neurofibromatosis.

Comment from: Keith, 55-64 Male (Patient) Published: May 07

I have all the symptoms of hydrocephalus. Doctors over the years have come up with bipolar, lupus, thyroid problems – all as a possible reason. They did find that I have a tumor of the choroid plexus. If it wasn't for my dogs, I would have given up. The mental torture and pain is incredible. Doctors that don't understand hydrocephalus kick you under the bus.