Hydrocephalus

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Hydrocephalus comes from the Greek words hydro meaning water and cephalus meaning head.

Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is absorbed into the bloodstream. This fluid is in constant circulation and has many functions, including to surround the brain and spinal cord and act as a protective cushion against injury. It contains nutrients and proteins necessary for the nourishment and normal function of the brain, and carries waste products away from surrounding tissues.

Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.

Click here to learn more about brain physiology relevant to hydrocephalus.

Who develops hydrocephalus?

Hydrocephalus affects a wide range of people, from infants and older children to young, middle-aged and older adults.

  • Over 1,000,000 people in the United States currently live with hydrocephalus.
  • For every 1,000 babies born in this country, one to two will have hydrocephalus.
  • Hydrocephalus is the most common reason for brain surgery in children.
  • It is estimated that more than 700,000 Americans have NPH, but less than 20% receive an appropriate diagnosis.

 

32 Comments for : Hydrocephalus
    • Elise
    • August 1, 2017
    Reply

    Hi! I have had hydrocephalus since before I was a year old. I am extremely lucky to say I didn’t need to have a shunt put in and I have been fine since, besides having a lot of migraines, headaches and such.

    • Josh Raghavachary
    • July 27, 2017
    Reply

    I’ve had hydrocephalus since I was eight months old

    • Angie Stoffen
    • July 23, 2017
    Reply

    Hello my name is angie I’m from Canada. I’ve had hydrocephalus since I was two months, I’ve been living with hydrocephalus from 18 years now and since then I’ve never had to have revisions or surgeries but, I still go for yearly MRIs. Although one time I had really bad migraines and headaches for a week and I thought it was nothing I told my mom and she got scared and took to the hospital and I was rush into the ER and they did an emergency MRI and I had to stay there for a week to do some tests and for observation, but in the end the doctor said I was ok but that I have to be more careful. Nonetheless I’m really happy and trying to live my life as normal as possible without having to worry if my shut (VP shunt) will malfunction.

  1. Reply

    I’ve had hydrocephalus since birth. I had 20 shunt revisions in my lifetime, most (13) were when I was an infant. I had my first seizure when I was 17. Fortunately, I did not have another seizure until I was 39, when I had a few, while I also underwent 2 surgical procedures.
    Fortunately, I have not had a surgery in 12 years. It is the longest period of my life without one. Unfortunately, it seems the dilantin I take to control the seizures is causing increasing short term memory loss. My doctor wants me to stay on dilantin because it obviously controls the seizures. However, he now has me taking aricept for my memory issues. Has anyone had similar experiences and if so, how were you able to handle them.

    • Gabrielle
    • May 26, 2017
    Reply

    Just thought I’d throw this out there…
    In 2000, my first baby was diagnosed with hydrocephalus when I was 27 weeks along in my pregnancy. We did an amniocentesis and a fetal MRI. My high-risk team could not find a cause for the dilated ventricles, recommended a cesarean and had me meet with a pediatric neuro-surgeon to prepare for shunt surgery after birth. I did some research and found that a vaginal birth was the ideal birth method for a hydrocephaly baby. Her dilation measurements were stable: 11 and 14 mm. I declined the cesarean. I declined induction. I took natural childbirth classes in The Bradley Method. My baby decided to come on her own 1-week before her “due date”. I had a 6-hr all natural labor – no IV, no Hep-Loc, no Pit, no pain meds, no antibiotics, no epidural, no episiotomy, and I didn’t tear. My baby was whisked away to the ‘french-fry warmer’. I was expecting her to be rushed into surgery for a shunt and I hadn’t even gotten the chance to see her yet. A few minutes later, the nurse handed me my swaddled up baby and said, “She’s fine, Mama. Enjoy your baby.” An ultrasound was done through her fontanel when she was a few hours old and it showed that the hydrocephalus had “self-resolved”. No surgery or shunt needed. A follow-up at 6-weeks showed a slight increase in measurements, but was still within normal. She’s now 16-1/2 years old, a brilliant honors student, with no developmental delays and no further complications. I want to share her story because I was chastised for not having done my “20-week ultrasound” until I was 27-weeks along. (I had no idea what I was supposed to do when. It was my first pregnancy, and my doctor had forgotten to order the “anomaly ultrasound” at my check-up, and then the radiology dept couldn’t schedule me until I was in my 27th week.) I was told, “You were supposed to have this ultrasound done at 20-weeks because at this point (27-weeks) its not as safe for you to terminate the pregnancy now.” As if that’s the option I would have chosen!

    • Barbara
    • March 8, 2017
    Reply

    Hydrocephalus does occur in adults. My Mom had a shunt placed in her head when she was in her 40;s or 50’s. She has done well with it. She is now 75 and is starting to have dizzy spells and weakness in her legs. Does anyone know if a shunt wears out?

      • Paula
      • March 13, 2017
      Reply

      Hi, my name is Paula Iam 57 . Iam living in California I have been here since I was 3 years old. When I turned 21 years old I was told that I had Hydrocephalus. I was very scared I went to my home town Hospital. My boyfriend had taken me there. And he was by my side all through my surgery . I Was in the hospital for a few weeks the kept me there to make sure that everything was Ok. A month later I was back in the hospital I had to have another surgery to have a cysts removed . I was very sick. Iam 4’11 and I was 120 pounds I was so sick that last went down to 83 pounds I stayed like that until I turned 42 Since my first surgery for Hydrocephalus I was back in 1989 That was the first time I had my shunt revised I had some kind bacteria caused from food poison that I had it some how caused me to get sick . Everything that I eat made me sick even water. After that year I was fine. I remember the doctor’s.tEllington me that the headaches will always come back. And they have not as bad as they were before And things were going good for me until 2016 I started to notice that I was getting weak I had fallen a few times I was always feeling sleepy. I didn’t fell like eating so I knew something was not right My husband took me to Ucla Hospital right away and the Doctor’said were wonderful they took really good care of me I was in the Hospital for one whole month They had replaced the old shunt that was put in 1996 Everything was going good until This passed February I had to go back into the hospital again . The shunt had clapped. So the doctor took care of the problem since then Iam doing OK I feel lightheaded I had headaches too I think that is time to see my doctor I know that I have to have a CT or a mri done When you have a mai they have to be very careful. Well I hope that everything goes well for your mom

      • Alison Tunnicliff
      • March 19, 2017
      Reply

      Yes, shunts can malfunction and you’re describing some of the symptoms of a shunt malfunction. I’ve had it since birth and I’ve had about eight revisions. Get her to her neurologist or an ER. Malfunctions can be life threatening. Hope this helps and peace be with you!

      • Tammy
      • May 17, 2017
      Reply

      They absolutely wear out or malfunction…she should get a MRI to be sure the shunt is functioning. 🙂

      • Greta
      • June 10, 2017
      Reply

      Yes, shunts do eventually break down. They are made of sturdy material, but every so often will require upkeep to prevent mechanical failure, infections or even new obstructions preventing the fluid to properly drain out. This is a very serious complication that can cause her much pain because ventricles may collapse, tearing blood vessels migraines and even a hemorrhage (subdural hematoma). I recommend you get her checked out by her doctor and have that shunt updated before her condition gets to that point if it hasn’t already. (Med Student)

      • Jenny
      • June 12, 2017
      Reply

      A shunt can wear out.i had mine put in when I was 3mths old and replaced at 12

    • Reply

      It does I have just had a part replaced my shunts were fitted as a baby

    • Reply

      It does, like any other piece of hardware. I have had a shunt since I was an infant. I had to have mine replaced when I was 21, & again 3 years later, because that doctor did something wrong, & I got an infection.

      • Rose
      • August 13, 2017
      Reply

      Barbara,
      My partner has Hydrocephalus and I have had the opportunity to learn about it. To answer your question; if nobody has yet. Yes they can begin to malfunction. He recently had to have it replaced and even the new one was malfunctioning. I hope that helped!

  2. Reply

    I was diagnosed with Hydrocephalus at age 19 in 1993. This was a side effect to an eye disease I was born with called Toxoplasmosis. As of today, I am completely blind in my right eye from the Toxoplasmosis and now have less than four feet of vision in the left eye.

    I had a VP shunt placed in August 1993 after being diagnosed in March 1993. I have only had one revision done with the shunt and that was in December 2003 after a tubing rupture in the neck area.

    • John J Boylan
    • September 12, 2016
    Reply

    I was not diagnosed with a congenital aqua ductal stenosis until the age of 22. I was serving in the Navy at the time. I was immediately brought before captain’s mast and discharged without being given the diagnosis. As soon as I arrived home I had a seizure and fell down a flight of stairs on my head. When X-Rayed for concussion the hydrocephalus was once more discovered. The surgeries were performed in the East Orange, NJ VA hospital in 1977. They were botched four times. My brain was allowed to collapse on the operating table. I was comatose for eight days. I am a college graduate. I completed 101 credits in 2.5 years two years after regaining consciousness, but I have been unable to complete a graduate program, or keep a job. I have been on SSDI for the past eighteen years. Needless to say I am insanely angry.

    • Marvis
    • September 7, 2016
    Reply

    My baby born in 1962 had a this He lived 5 months His doctors in Alabama could not help him Back then, He was precious I understand that this runs in Family genes and was a child born on my husbands side with same, ? I know my baby was precious and I was with him everyday ,

    • Jo Murch
    • September 6, 2016
    Reply

    Well, this is new to me. Never heard of adults developing hydrocephalus, despite decades of working among folks with a wide variety of neurological and other disabilities. It was always assumed to be “congenital” when I was in training, and was usually treated surgically.

    • Reply

      I was diagnosed with Hydrocephalus at age 19 in 1993. This was a side effect to an eye disease I was born with called Toxoplasmosis. As of today, I am completely blind in my right eye from the Toxoplasmosis and now have less than four feet of vision in the left eye.

      I had a VP shunt placed in August 1993 after being diagnosed in March 1993. I have only had one revision done with the shunt and that was in December 2003 after a tubing rupture in the neck area.

    • Reply

      I have a 45 yr. Old friend that had was shakally walking & was Gettin dizzy they did sum test tests & found it to be water on the brain he’s gotten a shunt & says things are goin much better…

    • Deborah Scott
    • September 5, 2016
    Reply

    Please put me on your mailing list…

    • Deborah Scott
    • September 5, 2016
    Reply

    My teenage son has this disease and he is in need of and iPad for school and daily learning needs. I can’t afford one being a single mom so I thought I would ask for some assistance.

    • Richelle Rosato
    • September 2, 2016
    Reply

    My son has hydrocephalus and I would to get involved with a hydrocephalus walk in Birmingham Alabama. Please send me a schedule when you will be having a fundraiser. Thank you

    • Boitumelo
    • August 22, 2016
    Reply

    hi my name is MB Makhoana im 32 years of age and i have a 9 year old son L Makhoana who was born with hydrocephalus condition he cant walk, talk, and blind its hard for me and his mother to get a sutable home for him so and both of us cant find work due to we have to look after him or if one gets a jop the other one hva to stay home to take care of him so it very hard on us as we cant even get a better jops to take care of him is there any surgetion you can give us thanks

    • Kathy Mann
    • August 18, 2016
    Reply

    Are their national pediatric specialist ? I need help for my 6 year old grandson . Constant problems with headache – seizure – now blind since February from a failed shunt . The only portion replaced was the distal end . Headaches still almost daily . No one is hearing us

    • L Morrison
    • August 15, 2016
    Reply

    I reside in Canada and was on a Canadian site for this condition so why did I end up here in wanting info on how to talk to a Doctor ??

    • Jamie Alkire
    • August 10, 2016
    Reply

    My name is Jamie , I have twin sons my first childern. Kristopher and Kollin were both born healthy and large for 35 weeks twins almost 17 pounds of baby. We were told when I pregnant Kristopher had a cyst in the brain in January the duration of pregnancy I was told he wouldn’t live after birth. Since birth in march of 2016 Kristopher has had three brain surgery first at 4 days old to place the shunt. In July we went for a follow up appointment and they did an mri and found a tumor in his brain . They removed the tumor and his shunt because the tumor was blocking that shunt and they assumed it had not been working properly. After two weeks in the hospital we were finally released and Kristopher has some fluid at the back of his head the doctor told us it was fluid from the surgery and it would go away. On birthday july 22nd we went for his post op follow up and his neruo surgeon said he in fact did have hydrocephalus again and that the fluid was not just fluid from the surgery. The next day he had his third surgery for the second shunt placement. He is the sweetest little boy and is such a strong fighter but life had definitely been hard for us. After his diagnosis I researched hydrocephalus and found out how common it was in infants . Any mothers out there with a child with hydrocephalus any comments or advice on how to cope with this diease. I know that childern go onto live noreal lives I pray that will be the case with Kristopher but only time will tell.

      • EWA
      • July 17, 2017
      Reply

      Dear Mother,
      My daughter’s story is similar to your son’s. She is 26 today and graduated from college with honors. We used piano lessons, horseback riding, ballet and soccer to help her with her fine and gross motor skills. Although she has some physical effects from the surgeries and the condition, she is a productive member of society and a wonderful and creative person. Set your goals for your son and then make plan to reach them. Your path is unique to your son.

    • Stephanie Gomez
    • July 20, 2016
    Reply

    Hi, I’m from southern California. I have concerns with some images that some doctors ordered from a cat scan on my head, The images show a gray area on the top of the head and there is a considerable space between the back of the skull/bone and the brain itself. There is at least a half of inch space( a gray area) in the back of the skull. I’m having vision problems, and migraines. I’m also having spinal deterioration such as the bones grinding on each other, and other complications such as organ failure. I’m not to sure if this hydrcephalus, concerning the back of the brain. I also had a son that was diagnosed with problems such as epilepsy, and was said to have large ventricles in the brain, also had cerebral palsy. Due to this disorder he was blind also and was not able to walk or talk or sit or feed himself. I have two other children who appear to be normal such as myself. I’m concerned due to the fact that my health is failing. It is difficult to eat without complications. I’m fairly young, 43 years of age. I’m having heart problems such as my son experienced respitory problems also. Again, very concerned about the other two children I have. I’m constantly, feeling sick. I can’t get a correct explanation on the gray areas that are on my brain concerning the image of my cat scan. If you can reach me at 1811 W. Lugonia Ave., Redlands California, 92374. My name is Stephanie N. Gomez. My son that had epilepsy was diagnosed with cortical blindness. This was explained in a way that it was due to the problems he had with his brain. My son passed away in 2003. I’m concerned about the images on my cat scan. Again, my health is not the well,Feeling sick. I look fine on the outside, no one would guess that I feel sick or in pain. My Son looked perfectly healthy also. Please let me know if you recommend anyone in the Southern California area for neurological problems.

    • Ramona Harristhal
    • July 5, 2016
    Reply

    Are there any organizations that help children from third world countries get procedures/treatment for hydrocephalus? A six year old on the island of Kosrae in the Federated States of Micronesia has been treated in Hawaii, having a shunt inserted. Now she needs followup to that, needing the shunt extended. Her parents got a loan from the local We Care program, but have been unable to repay that loan. Therefore, there are no funds available for the child to have the shunt extended. I am trying to research other ways that she can return for the procedure. Thank you for any information you can provide.

    • Laurence Gurule
    • June 6, 2016
    Reply

    What is the prognosis of a person who does not get a VP shunt and they are 69 years old after a stroke

    • Dolores Otter
    • May 20, 2016
    Reply

    How can I get on your mailing list to receive your newsletters?

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