Patient Comments: Hydrocephalus - Describe Your Experience


Please describe your experience with hydrocephalus. Submit Your Comment

Comment from: PJW, 75 or over Female (Caregiver) Published: March 31

My husband is 75 and woke up one morning unable to sit up without falling over and could not stand or walk. He was unable to communicate. After hours in the emergency room (ER), it was determined that he had hydrocephalus. The neurosurgeon refused to do the shunt implant due to his age and other medical issues, so he simply has to live with this! But over the past 5 months, his brain functions have improved greatly and he is able to walk again but with a walker. Hoping and praying it doesn't get worse.

Comment from: John, 65-74 Male (Caregiver) Published: July 17

My husband has had problems with headaches for almost 3 years. He was diagnosed with normal pressure hydrocephalus (NPH) in 2016. Later that year he was admitted to the hospital with double vision. While in hospital they did a lumbar puncture to see if he would benefit from a stent being fitted. The test was not done properly so they just sent us home. We have had lots of MRI scans done, now been accepted by a doctor who hopefully will do the stent. He now has very poor memory, and very poor mobility, I think it's been left to long.

Comment from: Robie, 45-54 Female (Patient) Published: March 06

I was diagnosed with hydrocephalus at the age of 46. I began feeling like I was drunk, out of balance, forgetful, with speech impediment, blackouts, incontinent to the point of having to wear adult diapers, etc. An MRI was scheduled and the diagnosis was made; hydrocephalus due to aqueductal stenosis. I had my first brain surgery in March of 2016, where an ETV (endoscopic third ventriculostomy) was performed. I was doing ok, going to therapy, until October of 2016 when I developed a headache unlike anything I’ve ever experienced. I began to vomit and was taken to emergency. Most of this I can’t remember. Another MRI was done and it was discovered that the incision made during the ETV had closed up and fluid had begun to accumulate in my brain again. The next day I was taken to the hospital for my 2nd surgery. In October 2016 I had a VP shunt placed. Things were going well, therapy for my memory and cognitive stuff began. Then in July of 2017 the worst happened. My husband found me on our bedroom floor and couldn’t wake me up. I had wet the bed. He called the ambulance and they brought me to the hospital. On the GCS scale (coma scale) I was registered a GCS 9 (between 3 and 8 you are considered comatose), and once at the hospital I was registered a 7. This is when I was air lifted. I had immediate emergency surgery. I was told if my husband didn’t call the ambulance when he did I would most certainly have died. The shunt was blocked and the valve had malfunctioned. It was the first time the neurosurgeon had seen both in an adult. He told my family that they didn’t know what the extent of brain damage would be, if any, until I woke up. I have no memory of the 3 days of my life. Lucky for me, I came through. I still have really bad short term memory, am unstable and headaches. Now, things are beginning to go dark when I stand up again, it’s starting to become like my head is going to pop off when I cough or sneeze, eyes feel like they are popping out. Sinus is clear, I had it checked. My mind has also travelled back in time before my husband of 24 years, feeling like I’m there and wanting to be here and crying. I’ve gotten lost in my bedroom, lying in bed and not being able to visualize where my windows, door or closet is or which way my bed is facing. I’ve begun to get sick once I have the first 1 or 2 bites of food, everything spins and I get really nauseous. I can feel my energy draining from my body. Sometimes I have to go to the washroom really bad, but can’t go, or I have to go and can’t make it. I have a hard time thinking of words, I have to explain or describe some words I’m looking for. I have trouble saying some words at times, but can say the word fine other times. Three surgeries in 16 months is quite enough for me. I’m still off work and doing my therapy. I am hoping I get back to working life soon. I’m scared I’m beginning to have some of my previous symptoms again. Slightly, but noticeable. Scary but taking one day at a time. Another MRI is being scheduled before the end of March. One day at a time, right!

Comment from: Heman, 45-54 (Patient) Published: December 05

I had a brain tumor of the 3rd ventricle and it was removed finally and it was very difficult to remove. After it was removed was when all my problems started. It was New Year’s Eve 1999 and I was rushed into the hospital as I was very sick with hydrocephalus. Well, to cut a long story short, I had two shunts fitted and was in hospital for four months. But I am alive and happy thanks to my surgeon, he knows my brain better than anyone else!

Comment from: John DeHeer, 55-64 Male (Patient) Published: January 10

I was diagnosed with hydrocephalus and a Medtronic Strata valve was implanted. The doctor seems to change the rate of flow quite often. Recently I had a significant chronic subdural hematoma along with a chronic bleed. The emergency room doctor explained the diagnosis and called for me to be heli-evacuated immediately. At the hospital they drilled a bore hole and drained the blood that would lead to severe and violent seizures that would lead to delusions and hallucinations. I now cannot drive for 6 months and will have speech, physical, and occupational therapy and am left with cognitive thinking issues. It has been terrible. My doctor when I went to him 2 days prior to emergency room where hematoma was spotted, adjusted my shunt and only did plain films after I returned to him due to original hydrocephalus symptoms returning. We asked for CAT scan where the chronic bleed would have been spotted but he did not feel that necessary and just did x-rays and adjusted the rate of flow on the Medtronic strata valve.

Comment from: Naomi, 75 or over Female (Patient) Published: November 19

I have a shunt behind my right ear for hydrocephalus. It is 11 years old and I am having it flushed next week. I am not sure what this entails and hope I will be okay the same day.


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Comment from: Angela, 35-44 Female (Patient) Published: October 31

I believe this is my third time where my head feels like I have liquid in it and pressure builds to the beginning of a migraine. I am not sure if I should go to a doctor. I can feel like the water retention is pressing on my head or eyes, worried if it hydrocephalus.

Comment from: BobK, 45-54 Male (Patient) Published: December 07

I was born in 1969 and diagnosed with hydrocephalus shortly thereafter. I have had 2 replacements (1989 and 1999). In 2008 I started experiencing seizures and was diagnosed with epilepsy. All tests performed showed shunt was working properly. I have had no other surgeries for hydrocephalus since 1999.

Comment from: Fred, 45-54 Male (Patient) Published: November 24

I received a severe trauma to my brain 7 years ago. I had a severe head ache that a high tech therapist who uses electro crystal therapy along with another high tech bio feedback device called SCENAR and a cranial sacral therapy on me were able to relieve. My head ache didn't bother me for years, then I began getting a head ache that was progressively getting worse. It felt like my skull was being blown up like a balloon. I would put light pressure on my head with my hands and feel the plates in my skull move. So I was certain my head was being blown up like a balloon and at the time I thought this was being caused by all the scar tissue caused from my brain healing so many damaged wiring in my brain. Then I went through the situation of experiencing a problem with one of my teeth that was very painful. I'm not 100 percent sure what was the true cause of the sudden release of the pressure in my head. It could be something else but to the best of my thinking I believe it was the pain from my tooth that relieved the pressure in my head. I was in pain from my tooth and at the same time I felt euphoric because I experienced the sudden release of the pressure in my head that was causing me to experience a very difficult type of headache to tolerate. It took 7 years for me to realize hydrocephalus was the cause of my headache.

Comment from: GeeGee1958, 55-64 Female (Patient) Published: October 12

I was born in May 1958. I was diagnosed with hydrocephalus in September of that year. The shunt was implanted but no one knew what to do. My mother barely 20, was told contradictory information like, 'pump the shunt daily', and ‘don’t touch it'. We moved to Germany when I was a year old. The doctors there knew even less. I had a couple of incidents where the shunt stopped working but no surgery until I was 6 when they inserted an extension to the drainage tube; that was in the superior vena cava but as I grew it came out of that vein and they put the extension down into my right arm. I had no major problems for several years. The last week of my junior year of high school I got a headache. We initially thought it was stress but it was still there after several weeks. The neurosurgeon assured us there as nothing to worry about as I had no other symptoms. Two years and seven doctors later they replaced the original shunt. I had a 'severe' headache (literally hurt to blink for two days) for two weeks. That headache gradually dissipated over the course of three months. That was in June of 1977. I've been fine since. I graduated from junior college and have worked as a physical therapist assistant since 1981.

Comment from: kat, 45-54 Female (Patient) Published: September 09

I had the shunt surgery for hydrocephalus in November of 1963 just after turning 1 year old. The doctors told my mom that if I didn't grow fast I shouldn't need a revision and I never did. Other than a spell of headaches when I was about 9 that went away I have had no problems. From reading these posts I am very aware of how fortunate I am and am very grateful. I do wish I could find people my age who were born with this. I have always wondered if it would affect me as I got older. So far so good. I hope for the best for all of you.

Comment from: Ozcloggie, 65-74 Male (Patient) Published: May 14

At 71, I now have to accept that I do have that 'water on the brain' or hydrocephalus. All these years I have recounted how my mother was upset, when she proudly walked with me in the pram and passers-by sympathized. As a primary school teacher (37 years) I had to explain that my head was/is too big for (normal) hats/caps to keep off the sun, while having to make the pupils wear hats. Now I shall be having an operation, after the MRI showed where the problem lies. I have no problems with balance etc., but memory is getting shaky. Even that diagnosis is affected by having moved residence twice recently and feeling a bit lost.

Comment from: meghan1991, 19-24 Female (Patient) Published: February 24

I was diagnosed at age 22 with obstructive hydrocephalus. During summer break I volunteered for an attention study at our local university, involving an MRI machine. Having been a sophomore in college, I hadn't noticed any physical symptoms, and never got sick or showed any symptoms of anything. After the study, we looked at the images collected, and my ventricles were insanely large. I was immediately referred to my primary care doctor for further investigation. Having been very healthy my whole life, my doctors were in disbelief, and it wasn't until I met with the neurosurgeon that we were able to find any symptoms. The doctor asked me about my previous semester at school, and this was when it hit me. I failed 2 classes. Both of the classes were very challenging, but questioned me in ways I hadn't ever been tested. They required pure regurgitation and memorization. I would study 20 plus hours for a single exam, and would still get a clearly failing score. Having this realization raised a huge red flag for me and my doctor and 4 days after this meeting, I was scheduled for an endoscopic third ventriculostomy (ETV). The recovery time was short (3 days), and I made it back for fall semester and graduated on time! My memory has not improved, but hasn't gotten any worse!


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Comment from: AndyMaxHK, 45-54 Male (Patient) Published: February 17

I have normal pressure hydrocephalus. I was 40 when I was diagnosed with the condition. I started noticing mental changes and cognitive impairment after I worked for 6 months in a tunnel (I'm a civil engineer) with a chemical called toluene di-isocyanate (2,4 TDI). I went for an MRI which showed ballooned ventricles. My neurologist told me I needed to have a lumbar puncture (LP) as soon as possible, which I did. The worst decision I've ever been encouraged to make. I’ve had headache every day ever since. I have seen my share of 'experts', none of whom have been able to help me with the headaches. My point is, if you are found to suffer from adult-onset hydrocephalus make absolutely sure you get a second, or even third, opinion. Having this knowledge might have stopped me from having the LP. Don't make the mistake I did and trust every word your doctor tells you.

Comment from: cagey, 55-64 Female (Patient) Published: February 10

My hydrocephalus began last fall with balance/falling problems and memory and incontinence. The neurosurgeon I saw read my CT scan and determined my left and right ventricles weren't draining. I had a shunt put in with a drainage tube going behind my ear and down my chest into my stomach. I had it done twice because the first one failed within a week but this last one has been fine. My only issues are with the nerves growing back and my incision healing. It might have occurred when I dumped my motorcycle a few years ago.

Comment from: Matjie, 25-34 Female (Caregiver) Published: December 01

My daughter had congenital hydrocephalus, heart defect and brain damage. I was advised that the water from the brain can be drained through operation. But unfortunately it never happened because she had multiple abnormalities and she passed on 13 October, 2006 due to all those illnesses.

Comment from: Rahul, 25-34 Male (Patient) Published: October 21

After going through all the patients’ reviews, I think that I’ve been very fortunate. I was diagnosed with hydrocephalus at the age of 6 but the shunt got blocked at the age of 9 which led to another surgery. But the serious shock came when I was 16. I had a repeat of all the symptoms but the diagnoses was not properly done which lead to my eye sight loss. After that, I went on to do my regular education with the help of special software that can help visually challenged people. Today I’m a manager in a multinational company in information technology with a doctoral qualification and leading a married, super normal life. So whoever go through my article, please don’t think that this problem is end of your life. You can still do so much for this world.

Comment from: cathal, 25-34 Male (Patient) Published: September 25

I have had hydrocephalus all my life and had a few operations to put VP (ventriculoperitoneal) shunts in. I’m now 30 and the headaches I get are awful, sometimes really bad, making it hard to walk or anything, as I also get lower back pain too when standing too long. I have to sleep to ease the pain and take pain killers but not working always.

Comment from: poormedstudent, 25-34 Male (Patient) Published: August 14

I am a 26 year old medical student. I had hydrocephalus as an infant with surgery for a shunt at 8 months. I have had no issues my entire life thus far. I only had another MRI performed once about 5 years ago, which did not show any problems. My shunt has moved over time and probably does not work anymore. But, I know to simply watch for presentation of neurological symptoms that would need to be addressed.

Comment from: CASIE5000, 25-34 Female (Patient) Published: July 31

I am 33 and I have hydrocephalus. I was 29 when I was diagnosed. I was in a car wreck and a CT scan picked up on this. I was told that my hydrocephalus was old and probably occurred when I was a small child. (When I was a baby, I fell down 15 cement steps.) I have constant headaches, seizures, intolerance to rainy weather, bright lights and loud noise. I receive social security because I cannot lead a normal productive life. I have not yet been shunted, but do have an appointment to see a neurosurgeon this month. I was not willing to get the surgery at first, but the headaches and seizures are getting unbearable. The only time I feel any kind of relief is when I am in a pool, floating.

Comment from: ms, 75 or over Female (Patient) Published: June 30

I was diagnosed as having hydrocephalus at age 71. Conditions are: can't walk, incontinent, losing short memory. I had a shunt installed in 12/2009; at first I received some help, but not so for at least two years. Doctor says shunt is working, I personally doubt it, if it is working it is not helping. I am confined to stay at home, I need constant caregiver help. I am trying to find doctor near home that can give advice!

Comment from: computergeek, 35-44 Male (Patient) Published: June 30

I am a 44 year old male. I have spina bifida with tethered cord and hydrocephalus. When I was 7 years old I had fever and major headaches for almost a year. I lived in the hospital for over 10 months. Seeing all these doctors, around the 10th month the doctors put a shunt and it goes from the middle of my back toward the lower right side stomach. I had it ever since the fever went away, and the headaches.


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Comment from: Kitty22032, 35-44 Female (Patient) Published: February 07

I had strep throat; went to the hospital for severe headache. They did CT and MRI and told me I have hydrocephalus (never had heard of it before they mentioned it). Between 2000 and 2005 I had had concussions and neck injury which I did not address. I made the choice to handle it as an outpatient - having acupuncture, deep tissue massage, craniosacral therapy and following modified Paleo diet (no sugar, no red meat, no carbs). Massage helps but the relief doesn't last. I am having headaches every day, pressure on head and left eye 24/7. I am drowsy and sleepy, lethargic, dizzy and lightheaded; I have a hard time concentrating, just overall feeling listless. I go to the neurologist and neurosurgeon next week.

Comment from: A.P., 45-54 Female (Patient) Published: January 27

I had my first CAT scan at the age of 16, due to no period (all other tests were exhausted). Hydrocephalus was diagnosed. There were no other symptoms. At age 18 I suffered memory problems and had a suicide attempt. Immediately after, I had my 1st surgery. I have 2 children and lead a normal life now. A car accident at age 22 resulted in 2nd blockage and surgery. I am now 45. I have memory problems, but don't know if this is due to the shunt.

Comment from: Blessed Patient, 35-44 Male (Patient) Published: October 28

I am 39 years old and I have hydrocephalus. I was a premature baby and was diagnosed early. I received my first shunt at the age of 3 I believe, and it was revised at the age of 8. Since then I have not had any difficulties. I have been married for 15 years 7 months and 20 days. We have a beautiful daughter. I live a full life and work full time. I am extremely active. I’ve played a variety of sports over the years. These days I lift weights, run and play softball. My treatment has been successful. One can live a full life with this illness.

Comment from: 25-34 Female (Patient) Published: October 08

I was diagnosed at birth with congenital hydrocephalus. I was shunted at birth. I am now 30 years old and have had 9 revisions; in the last 5 years my last three revisions. I live a normal life, I work as a social worker and have a child. But I also have grown accustomed to the constant headaches that are a part of my life. I just had my last revision 1 month ago. So far it’s ok. I still get headaches but at least it’s not everyday. Nobody knows what the future holds for us, but it is important to be optimistic and strong-minded. It is hard for the patient and family to live with the disease. The constant hospital visits take a toll on the everyone and I know that at times I want to give up but it is important we trust our medical team, they are the most important part of our lives.

Comment from: jeff, 25-34 Male (Patient) Published: September 02

I was born with water on the brain, hydrocephalus. I don’t know much about my childhood and the people that raised me are gone and I have a lump on my head that I had since I can remember. I get really bad headaches and tired a lot. I don’t know what to do.

Comment from: poohbear88, 25-34 Female (Patient) Published: July 15

I have hydrocephalus, I have had 32 shunt revisions, and I have lived a normal life. But I'm going back to my doctor and I don't know if I have to have another surgery.

Comment from: Pisces, 45-54 Female (Patient) Published: November 12

I am waiting to see the neurosurgeon to discuss what's going on. My doctor thinks it is hydrocephalus. I have a tendency to lean to the left hand side, my left side is weaker, I feel like I am walking on jelly, and I have pressure on my head. I have a funny sensation across my face when I need to sit down and rest and any type of physical activity makes me feel worse. I am curious as to what the sequence of events will be. Will they drain me as a temporary fix, will they do lots of tests, before fitting a shunt? I really don't know and that's what I think is worse.

Comment from: sherylsnelling, 45-54 Female (Patient) Published: September 23

In 2006 I began having severe headaches. Finally after sometime I was diagnosed with hydrocephalus, so a shunt was put in and now all is great. Every once in a while the area (base of the head) is very swollen and tender, it usually begins to drain when this happens.

Comment from: 35-44 Female (Patient) Published: September 03

My daughter born with hydrocephalus, I found out when I was 5 months pregnant. The doctors told me that a shunt would be placed in her head to drain the fluid, and that was never done. We saw the neo-care doctor every month for three months and even her primary doctor and they told me she was fine. She only lived 3 months.

Comment from: Tryford, 0-2 Male (Caregiver) Published: July 25

Very hard to understand the problem of hydrocephalus and its cause. The doctors say it’s a minor problem but to me it’s not a minor but a serious problem to the life of my young one. I do not understand or know what pain he is undergoing because sometimes everything is irritating him and everything bores him.

Comment from: celeste, 19-24 Female (Patient) Published: February 10

I was 19 last year and I have hydrocephalus. I went through a lot of CT scans, also lumbar punctures and loads of blood tests. My doctor though I had meningitis. That’s why I had about four or five lumbar puncture tests. I went in July and stayed sick till September and that’s when I had my operation. Now I’m fine as a fiddle. I vomited and had seizures from July till September; I wasn’t well at all. The doctors told me that nothing was wrong but it turns out they were.

Comment from: kresti, 35-44 Female (Patient) Published: November 04

When I was in school I could not get my work done. I could not think clearly. My parents took me to doctors to get CTs done. They could not find anything wrong and thought I was just putting on an act. But my head aches and memory loss were getting worse to where I have lost most of my life. They have done 14 surgeries for hydrocephalus and I’m still not doing well.

Comment from: 19-24 Female (Caregiver) Published: September 02

My 23 year old daughter was diagnosed with Arnold-Chiari Syndrome when she was 12. At 22, she was diagnosed with hydrocephalus. It is so hard to tell if her symptoms are 'real'. She is only comfortable while lying down, on her left side. It has been so hard to get info, her doctor is supposed to be one of the 'best', but seemed very indifferent once she had surgery to remove C-1 vertebrae. Any help for finding more information would be extremely appreciated!

Published: September 02

My son had hydrocephalus from birth. He passed away at the age of 5. The doctors will tell you that they won't need hardly any revisions and that’s a lie. My son had 152 revisions and 2 major skull surgeries in 4 years. He developed seizures and was in the hospital more than at home. A lot of families at the hospital were in the same boat as us. The doctors told them tales too. Nothing prepared me for the life I was about to lead. I dearly miss my son it has been 11 years since he passed and it still feels like today.

Comment from: nannie, 19-24 Female (Caregiver) Published: August 06

My granddaughter has aquired Hydrocephalus. Started having headache at the age of 15, had a shunt placed due to hydrocephaus. Her doctor could not find any reason for her condition. Although, she never made good grades in school, was told by the teachers she didn't try and gets easily distracted. She does not seem to have any common sense, and makes bad decisions. She has difficult remembering, and gets angry due to everyone repeating things to her. She didn't finish high school, but tested for her GED beginning her eleventh year in high school. She tested out and passed it. She married at eighteen years old, and recently gave birth to a baby. She is still not responsive, gets angry easily. I notice her frustrations but other family members think she is just immature. She has very low self-esteem. I feel she wants to do better and think she would benefit by attending a support group to understand how to deal with these issues. Most support groups are for younger children, is there any information out there that defines what some of the complications are, and how to deal with things better? Or are these problems just due from being 19 years old.

Comment from: SoCurious2009, Female (Caregiver) Published: July 07

My experience is one of a kind. My little boy has it and he was diagnosed with it at 6 months and got the shunt at 11 months, but see the thing is he can’t walk, crawl, hold him self up, nothing. Well he is very smart and charming he has a great personality, but he isn’t very mobile now. He has the will and drive to do it all. I just am so confused because I want him to be independent so bad not just for me, but for him. He is going to make a great guy and I want all things to be possible.

Comment from: cephalusphil, 45-54 Male (Patient) Published: July 07

I am 49 years old and was diagnosed with hydrocephalus. The neurosurgeon put in a programmable shunt and everything was great for about 1 1/2 weeks. I began to have abdominal pains and x-rays showed that the drainage end of the catheter was all bunched up in my pelvic area. This is quite painful for a man to deal with. It was affecting my ability to urinate, sleep and was causing irregular bowel movements. After only 7 weeks since the shunt placement, I had to back in for a laparoscopic surgery so that the drainage catheter could be shortened. Now my surgeon thinks that I may have nerve damage from the catheter lying in the pelvic floor for almost 7 weeks. Along with this, I have developed insomnia and can only sleep about 3-4 hours a night, even with the help of Lunesta. If I had it to do all over again, I would never have had the shunt put in. I haven't been to work for 2 months, my emotional state is off the charts. My personality seems lifeless.

Comment from: sunshine, 25-34 Female (Patient) Published: May 08

I was diagnosed with hydrocephalus after a long period of bad headaches that got worse and started to feel pressure in my head. At my six-week check-up, they did my re-scan, and found the cause of the hydrocephalus: I had a brain tumor. I have been through multiple surgeries. I've had a shunt put in, a revision when I started to over-drain, continued with problems, and finally had the shunt taken out. I'm still considered to have "high pressure," but "stable" and opting to not have the shunt put back in. I'm still suffering from pressure head pain. I feel the worst when the pressure outside changes.

Comment from: T.R. Smith, 45-54 Female (Patient) Published: June 22

I would like to politely dispute the comment that hydrocephalus is only caused by dehydration. It is not true. Dehydration doesn't itself cause the hydrocephalus. There are other mitigating circumstances, and those should be taken into account. I have acquired hydrocephalus. It was diagnosed 46 years ago. While dehydration can be involved with the other symptoms, it is not a sole contributor in and of itself.

Comment from: Mother, 0-2 Male (Caregiver) Published: November 21

On Wednesday I took my son for monthly check up and the nurse told us to go and do a checkup for hydrocephalus. It is today, I don’t know how I feel, and I am very scared more than anything. My son is months old.

Comment from: Sarasymonspolk, 65-74 Female (Caregiver) Published: March 18

My dad had hydrocephalus. He died from pneumonia.

Comment from: patty novak, 55-64 Female (Patient) Published: February 11

I had an aneurysm rupture in my brain; I have a shunt, new aneurysm also and I am constantly getting infections in the brain and severe symptoms of hydrocephalus.

Comment from: sarahjane, 35-44 Female (Patient) Published: January 29

I am 40 years of age, and after suffering many years with what the doctors had said was severe migraines, I have now been diagnosed with hydrocephalus. At least something will start happening now.

Comment from: Bobbi P, 65-74 Female (Patient) Published: January 27

With hydrocephalus I wonder if anyone has ever experienced off balance issues. I have been leaning to my left side with occasionally falling down.

Comment from: Caasi, 0-2 Female (Caregiver) Published: October 15

My daughter was diagnosed with hydrocephalus 8 months into my wife’s pregnancy. Neither my wife or I nor any family members have had the condition before. The MRI scan showed her brain parts were normal. She had the shunt surgery a month after birth. It’s been 2 weeks now and she is very stable and normal. Hopefully she will go on to live a normal life.

Comment from: 55-64 Female (Patient) Published: August 20

I have excessive fluid on my brain. I get severe headaches, which keep me up most nights. I get nauseated and vomit a lot and I have found my balance is a bit off.

Comment from: Sparty, 65-74 Male (Patient) Published: May 20

I had a brain hemorrhage in 2004. I was diagnosed with NPH in 2012. I was progressively having difficulty walking beginning in 2010. It became very severe. Some say I also had some cognitive difficulties – maybe. I had a programmable shunt installed in February of 2012. Since then, I've had two adjustments. My improvement has been remarkable. I am now nearly "normal," although I am beginning to experience some stumbling again – I will be going back in for an evaluation. Overall, my experience with the shunt surgery has been terrific.

Comment from: Tom, 55-64 Male (Patient) Published: April 25

I've had hydrocephalus for eight years now. I've had seven surgeries, not counting all the moving of the drain tube. I finally did get a doctor who knew what to do. Since he worked on me, I haven't had a problem. Why don't doctors just say that they don't know what to do, instead of doing surgery to try out something new? I could write a book on all the mistakes. I was forced to retire early and lost a lot of my retirement. I just hope others don't have to go through all the problems I did.

Comment from: Pete, 13-18 Male (Patient) Published: April 17

I have hydrocephalus. I was diagnosed at 13. I had a ventriculo-peritoneal shunt (VP) put in. All went well until the cyst shrank too fast and bled. I needed another operation. Now, two years later, I'm fine.

Comment from: anon, 13-18 Female (Patient) Published: July 31

I have had hydrocephalus since birth. I was diagnosed at 10 months. I have had several revisions, but the original shunt is still in place. Recently, I have been having horrible headaches and pain around the valve site and in the neck tubing.

Comment from: Sally, 65-74 Female (Caregiver) Published: July 07

My 71 year mother has been suffering with what we now know to be obstructive hydrocephalus. Over the past 3 years, she has been getting increasingly dizzier and losing her balance to the point of falling down. Although her "previous neurologist" has known of this excess fluid in her brain, he told her it was normal and not to worry about it. We now have a new neurologist and a neurosurgeon will be performing a 3rd ventriculostomy in a month. Our prayer is that she will be able to enjoy the simple pleasure of walking again without fear of falling!

Comment from: hydrosux, 35-44 Female (Patient) Published: August 17

I am 42 years old and diagnosed at age 3 with hydrocephalus. I had a shunt placed in the back of my head. At age 6 I was diagnosed with a Dandy-Walker cyst. I had my cyst removed and then 3 months later I needed a 2nd shunt. It wasn't till I was 40 that I needed 2 more shunt surgeries due to 2 separate head injuries. The following year I had 2 revisions. I have not worked in over a year and it is depressing. I fear there will be more surgeries in the future. I have been told by my rehab team that I will not be able to return to my job in education which I terribly miss. I do not want to do a meaningless job like counting socks but my STM is horrible. I hope that at the very least my daughter and I will be able to move out of my parent's home to an apartment. Our house will be put up for sale shortly. We haven't lived there for almost 2 years.

Comment from: dd, 55-64 Male (Patient) Published: August 17

I was found to have hydrocephalus at the age of 32. Mine is due to scar tissue totally blocking the brain stem area. My first shunt was a success and after 3 years I was able to return to work. I also went to college under a DORs program and obtained a teaching degree. I have been employed as a teacher for about 20 years. My big concerns started when I was 58 and it was suggested that i have the shunt replaced due to age. The surgeon decided to take a shortcut and insert the shunt drain under the skin, but without surgery to open and inspect where the end of the tube landed. A few months later I ended up in the ICU with an emergency shunt placed and a brain infection. A month later, a new shunt was placed in the back of my skull. I was able to return to work for the past 4 years however due to damages from the brain infection; I am now losing the ability to use my eyes for driving, TV, Movies and face to face type of meetings. I may have to retire earlier than I wanted due to my new limitations. I have also discovered that people like me do not quite fit into the disability section of social security, legal blind protection or at the work place. I will also warn that some hospitals who have the experts to help treat us are state entities and by law not held responsible for damages done to clients. Still it is great to be alive and high functioning. My hope is to someday find a way help others with this condition.

Comment from: Justin, 3-6 Male (Caregiver) Published: August 17

My son had Hydrocephalus he had a growth on the back of his neck of brain tissue and spinal tissue. He lived to be 5. The doctors told me he would be able to live a normal life. THEY LIED! He had in 4 years 135 shunt revisions and 2 major skull surgeries to make more room. He also had Generalized Tonic Clonic Seizures due to so many surgeries. He was in the hospital more than at home and never really learned how to be a kid.

Published: August 06

I am a mother of an 8 year old girl who was diagnosed with hydrocephalus when I was 7 months pregnant. She had a vp shunt placed 5 days after being born. She started with physical therapies at 5 months old. She has never had problems with her shunt. Thank god. She was a late walker and talker. She has overcome many battles, but there she is living a normal life and is a very happy child and makes me feel there is nothing one can accomplish. We, parents of children with hydrocephalus need to take it day by day.

Comment from: craigquakertown, 35-44 Male (Patient) Published: August 06

I had hydrocephalus in the third ventricle of my brain they said if they didn’t remove I could die. To make a long story short they removed the tumor, but after it was removed I find my mind and moods shifting worse than ever. Does this happen and is it going to get worse cause I feel like I’m outside my body sometimes when I have a mood swing I’m concerned and scared its affecting my relationship and my life.

Comment from: 65-74 Female (Caregiver) Published: July 07

My mother in law has been diagonised with Hydrocephalus. However her condition is unfit for surgery as she is anaemic and suffering from severe Rheumatoid Arthritis. She has been bed ridden for more than 10 years now. Is there any remedy that can be done only by medication rather than surgey?

Comment from: Blackcat, 0-2 Female (Patient) Published: June 03

I have Hydrocephalus; I've had it since birth. I had very bad headaches and because of it I have short term memory loss. I now have a shunt that has been working for over 20 years. I only had 2 surgeries, once when I was 2 then again when I was 10.

Comment from: kristin, 3-6 Male (Caregiver) Published: June 03

My experience was not one of my own it was my son's. He lost his life at 3 years old to this disease. His shunt clogged with brain tissue and when they put him under for surgery that morning he never woke back up. So you could say my experience is hard and very difficult to deal with. If your child has this disease and becomes sick all the time my advice is to push the doctors to do more. I tried to tell the doctors he had symptoms of malfunction with his shunt and they thought he had a cold. Now I don’t have my son and he never got to live his life. I hope no one has to ever experience the loss of their child the way I did.

Comment from: dora, 7-12 Female (Patient) Published: June 03

My daughter was diagnosed with hydrocephalus when she was just born, she is a premature baby and we live in Mexico, when she was like ten months old, she needed the shunt, and for us was so hard, because we couldn't find a neurosurgery pediatrician here in Mexico, then after having a hard time trying to find a doctor, we went to New York and she finally had the surgery, which was very successful. Now my daughter is almost 11 years old, she is living a normal life, she is tested every two years and the doctors say that probably she would not need another surgery.

Comment from: renae, 13-18 Female (Patient) Published: May 26

I am 15 years old. I have been suffering from headaches and other symptoms to do with this condition. I went to the doctors and the told me to take a CT scan. I did. I have just been to the doctors and they told me my results. I have too much fluid in the ventricles. I have to go see a specialist as soon as possible. I may or may not have this condition, but that does not change how I feel. I am terrified and so is my family.

Comment from: 35-44 Female (Patient) Published: May 20

I was 14 when I was diagnosed with hydrocephalus I collapsed in school and had 3 epileptic seizures. When they did an MRI scan they discovered that I had this condition. I had my first operation when I was 16 and my first shunt was inserted. I had the shunt revised when I was 25 just the top part and then when I was 32 I had the whole shunt replaced. I have status epilepsy and I had it for 18 years. I have to take medication. I am now driving; I take 4,000 mg of medication every day. I live in Ireland and I have never met anyone who developed hydrocephalus.

Comment from: marie, 45-54 Female (Patient) Published: April 16

I did not know I had this condition until going to hospital with a suspected broken nose and had a scan on my head. I have always suffered with headache and dizzy spells for as long as I can remember. I was admitted to hospital after the diagnosis.