Hydrocephalus, Hydrocephalus Association

brain shunt,congenital hydrocephalus,pediatric hydrocephalus

Hydrocephalus

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.

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.
  • D Patel
  • January 21, 2019

Hi! My mother-in-law. had surgery done in 2017 for hydrocephalus. They put stunt which drain in stomach. It was good for almost 1 and half year. all of sudden fluid started accumulating in brain, Surgeon said stunt didnt work. they tried couple of stunt and even tried to drain in lungs but after procedure everything remain good for 5-6 days.

We are really in need for any alternate. we are ready to try anything to save her life.

Is there any medicine or option which can help to stop accumulating fluid?

  • Cathy
  • January 11, 2019

My son is 28 and has had a vp shunt since he was 4 days old. He has always been a difficult child but lately he is getting worse. He is angry all the time screams at me and hates the rest of the family. Has anyone seen this kind of behavior in love ones with hydrocephalus? I know part of his brain was compressed and damaged from a cyst that caused the hydrocephalus . I just don’t know what to do he is very unstable and scares me sometimes.

Hi I’m 32 . Born with Hydrocephalus. i’ve have had increased pressure in my head and neck for a few weeks now. It may be in part to a current chest infection for the past week. Had CT scan & shunt study done 2 days ago. They couldn’t see anything abnormal. I’m have trouble moving my head fully to either the left or right because of this pulling sensation down the right side of my neck where my shunt tubing is. I wish I had answers. Feeling concerned.

  • FABIO C FONSECA
  • December 6, 2018

I Just received the news that my father who is 77 years old was diagnosed with hydrocephalus. He is currently outside USA, he have Medicare, anyone knows if we can use medicate for the surgery and treatments. Thank you

  • Daniel Smith
  • November 28, 2018

Hi my fiancé was just diagnosed at 19 years old with hydrocephalus. Her neurosurgeon wanted to perform the vp shunt surgery the next day after reviewing her mri and ct scans. So we went through the motions and she got the surgery. This last weekend she had to get an adjustment done and today we met with her neurosurgeon today and got heartbreaking news. She was told that she is never going to be able to go off-roading again or go on rides at Disneyland. These two things are big parts of our life together and now we longer can do that. I’m curious if anyone has heard different on this matter because as I said this is a big part of life. Thanks in advance for anyone’s input and responses.

  • Lakisha Harris
  • December 4, 2018

Hello Daniel Smith,

Thank you for your question. It is important for your fiance to follow the advice of her specialist. Theme park rides may cause symptoms such as nausea/vomiting/headache. Hope this is helpful.

All the best,
Support and Education Team

  • Rachel Miller
  • January 9, 2019

I have had hydrocephalus all my life. I’m 36 years old. I have been on ride at six flags. I just had new shunt put in, in September. The only thing thing they said to stay way from is magnets. Not let them to close to my head.

  • Amanda
  • January 15, 2019

That’s weird I’m 28 yrs old born with hydro I have go ahunt my whole life my NS who passed away when I was 14 yrs old said I can do anything I want to do I went to Disney world and six flags and I’m fine. I played in gym class an joined sports

  • L > January 16, 2019

I’ve had this all my life i still go on rides no need to stop what u normally do.

  • Barbara
  • October 26, 2018

My hydrocephalus was declared self-arrested by the time I was 18 months old. The doctor said that I would be smarter than average but would never walk. My parents kept working with me and at 2-1/2 I did walk. I fell now and then and was just told to pay attention to what I was doing.

Decades later I fell in my apartment, hit my head, and couldn’t get up, Luckily, someone at work dialed 911, and I rode to the hospital in an ambulance. There, my hydrocephalus was found to be still active.

A wonderful neurosurgeon did a procedure that was unavailable when I was a baby and gave the cerebro-spinal fluid a detour around the blockage, after which we all went on with our lives.

  • kirk grady
  • November 20, 2018

to whom it may concern my name is kirk Grady my last shunt operation which was late march of 2000 the last thing I remember was being in karate class and puking on my karate classmates front and being dizzy my sensei asked me to get out of uniform aka my karate gi and into my street clothes after that I ended up being in a thirty hour coma lets just say everything’s alright for now thanks to the doctors and nurses especially nurse’e Rebecca and Kimberly including doctor mark house thank you dr. house for saving my life for the fourth time yours respectfully kirk grady

  • Nona Appleberry
  • October 17, 2018

My son develop hydrocephlas at 17 months and received a shunt implant. He hasn’t had any revisions. The shunt device has been in his head for 25 years and has served its purpose. It is so loged in his brain we were by his neurosurgeon it best not to remove it.

He is now 26 and since 2013 he has been dealing with some neurological disorders such as panic attacks. He has been on several anxiety/panic medicines 7 to be exact and nothing seem to be controling the symptoms. He has been dealing with this for sometime. The neurosurgeon has taken CT scans and his ventricles appear normal. His psychiatrist is saying all this a neurological disorder due to his medical condition. His whole personality has changed. He is currently seeing a cognitive behavioral therapist to help him deal with all this. Please make sure your child has a neuro evaluation at an early age an pay attention to any changes in behavior, learning disabilities (should be on an IEP in school), anxieties/panic attacks, complaining about physical symptoms etc. It’s been a long journey however, we’re determined not to give up.

  • Darnie Greenberg
  • January 11, 2019

I just had a shunt test done and dye was put directly into my head. The radiologist said I onl had the range of 3. I was told the fluid range of 10! I am in alot of pain in my head.What should I do?

  • Joanne
  • October 17, 2018

Hello, if someone could reply I’d be grateful. My nephew has a protruding forehead which seems to change daily, it sticks out (shape of a pear when viewing from the top) his skin feels spongy almost, it feels like there is fluid when pressing his forehead. He also has a cast in his eye (one wanders out) he has a few speech problems and dribbles and awful lot (he is three) he also sweats a lot!! He snores also. I just wondered what other people’s symptoms are. Please help as I wonder if it’s hydrocephalus. Thank you.

  • Nadine Mackall
  • November 8, 2018

Please take him in to be seen. That is not normal.

  • Pamela TASSEY
  • December 6, 2018

You didn’t state his age, but no matter the age take him to a neurologist immediately! You may be risking brain damage. I wouldn’t want to be responsible for that. Go just to hopefully rule it out. Bless him, and you for asking this question?

  • Harmel Singh
  • October 15, 2018

My son is 8.5 yrs old with hydrocephalus & cp prb. He is niether talking nor walking only can sit for some time.frequent fits are also there despite of regular anti fits medicines….Harmel Singh from India

  • Brittney L Hollywood
  • September 15, 2018

My son was diagnosed with hydrocephalus when I was 4 months pregnant. We was told that he does not need a shunt. He is now 3 years old and is not walking. Have anyone else child had this experience. He goes to physical therapy and he wears his ankle braces.

  • Lilly Carl
  • October 10, 2018

My little brother has Hydrocephalus and he was born with it just like your son. He has a shunt and is doing well. He is walking with out braces and is talking sometimes.

  • Kathy
  • October 24, 2018

My son was diagnosed with Hydrocephalus at 6 months of age. He wasn’t doing the usual activities of a 6 month old. Once they implanted the shunt to drain the excess fluid he was crawling and standing, it was amazing to see the change.

  • Lily Madrigal
  • January 9, 2019

Hi, my name is Lily and my son was also diagnosed when i was 27 weeks pregnant. He is now 9 months old. I would love to get in touch with you to see if you could possibly answer some of my questions. I’ve been searching and searching for someone similar to him to ask how their journey has been. Please email me if you get a chance. Thank you

  • Kayla Brakefield
  • September 13, 2018

My name is Kayla Brakefield. I was diagnosed with a germinoma brain tumor when I was 13 and I had cancer for 2 years. They had to place the shunt as soon as possible so I had to go by ambulance to children’s since I had fluid on my brain. My tumor was the size of a golf ball and the nurses an doctors called me a miracle child since I survived. They couldn’t remove the tumor with surgery since it was to big, so I had chemo, and radiation. Lately I have been having bad migraines not sure if it’s from my shunt or not?

  • Yi Tian
  • September 26, 2018

May god bless you, stay strong! 💪

  • Jugarmonaliza1@gmail.com
  • February 7, 2019

Hi my name is Liza
My nephew have a hydrocephalus, she need
Help because here mother she don’t have, now the baby there in General huspital Quezon City at the ICU
The name of the baby is
Baby Angle J Gido.
The phone of her mother is#09971885002

  • Morgan James
  • September 11, 2018

I am from South Carolina my little girl is 3 now but I found out when I was 8 months pregnant from an ultra sound at my obgyn they found a shadow and sent me to a special doctor and that’s when we found out for sure what it was. She had 3 surgery on her brain before the age on 1 and took OT and still in PT the doctor she has here in South Carolina is the best doctor I could ask for his name is doctor troop and he knew what to do and how to do her last surgery to were we have not had any problem thank God since July of 2015. I will say it was the most scariest thing in my life for someone to tell me my child had hydrocephalus and at the time I was pregnant I was only 18 and had her at 19 and was a full time high school student. But anyhow for anyone that has hydrocephalus is a miracle from up above. My little girl didn’t start walking till she was 1 1/2 and didn’t start to sit up till almost 1 she can eat, talk, breathe like any normal child I will say the God lord above had been with me and my husband every step of the way and had help my little girl cause I know there are very worse cases then my little girl. But just thought I would comment and let parents know that yall aren’t the only ones out there with a child that has hydrocephalus

  • Karen
  • July 30, 2018

I am about 6 months pregnant and a few weeks ago my baby was diagnosed with hydrocephalus through an ultrasound. This thursday I go to meet with specialists and have more test ran at MUSC. Should I be as worried as I am? What should I ask them?

  • Ines Schlegel
  • July 30, 2018

Hi Karen, thank you for reaching out, we know a diagnosis can be scary, but please know we are here for you and your baby! Our Support Program Coordinator, Lakisha will contact you via email very soon. Thanks!

  • Noushad
  • October 16, 2018

Dear Ines, i am blessed with a baby girl prematurely… After 27 days of delivery doctors found she has hydrocephalus… I really don’t know where i will get the beat treatment… Whom i need to contact to guide me… I am from india

  • kristeen Galvan
  • July 29, 2018

hi im from the Philippines and i have a daughter with hydrocephalus.. shes 4 years old now. but she cant walk by her self… she didn’t have her shunt because the doctor told us that the open area in her head is getting smaller and it closes fast.. what should i do to help her walk? thanks

  • Larry
  • July 9, 2018

My name is Larry. I am 64 years old and was diagnosed with hydrcephalus 2 months ago. I will be seeing a neurosugeon in a few weeks to go over treatment options. What questions should I have for the surgeon?

  • Stephanie Beal
  • July 13, 2018

How many revisions has he/she done? All info on proposed treatment.

  • Bonnie L Myers
  • July 15, 2018

Make sure you ask the probability of surgery every two yrs. If a shunt is placed?

  • Michele
  • January 9, 2019

How did you make out with the Hydrocephalus? My husband is 62 and going through the same thing. What are your symptoms?

  • Maria
  • February 9, 2019

Good question. I was diagnosed recently at age 61. I’m worried about the operation.

  • Ramon Evangelista
  • July 5, 2018

My wife currently is at the hospital recovering from surgery for a shunt replacement in her head she had on Monday. Nurses and doctors see a good recovery however; she lacks sensibility on some parts of her right side, this comes also with double vision. Tomorrow she’s getting a MRI to see that everything is alright and that time will take over her recovery. We’ve been married for 1 year 5 months and we known each other for over 3 years, since I met her I wanted to know all there is related to her shunt and her disease. I want to be positive and that she will be the same loving person I know. If I receive a reply I would really appreciate it and I would be more confident she will be alright. God bless.

  • Silli
  • July 11, 2018

Hello Ramon!
I am a 27-year-old woman, who has had 8 operations done, because of my hydrocephalus, that was discovered, when I was 19. In Estonia, the doctors do not know, how to help me and that is why I often have to go with the ambulance and there is one very old neurosurgeon, who knows, what to do.. I live a full life – I work full time, I work out, I party, I´m married, I look good 🙂 Nobody believes me, when I say I have gone through brain surgery and so many times.. I had an ETV done about 5 years ago and that did the trick for me.. The only problem is, that all viruses, that cause inflammation, can make the hole grow back together. And that is why I went through the process again 5 weeks ago.. Went to the ER, they sent me home, then went with the ambulance and got the operation done one day later. I feel mostly fine already, but I still have “bad days”.. So make sure, You do all You can for Your wife around the house, because too much physical effort may be bad for her – the swelling in the brain heals, when a person gets enough rest. I went back to work after 2 weeks, but that’s just me – trying to get “back in the game” fast, but I suggest at least 3 weeks of calm life at home, but still doing little bit of the fun stuff 🙂 Like go sunbathing or walking for an hour etc 🙂

  • Noushad
  • October 16, 2018

Hi can i get ur doctor number

  • Stephanie Beal
  • July 13, 2018

She should be ok. I had a revision in 2013 that left my left side paralyzed for a short time. The best thing you can do is to listen to her. If she feels there is a problem she is probably right. Generally people woth hydrocephalus lnow when something isnt right.

  • Jordan
  • September 4, 2018

Hey there, my name is Jordan and I’m 20 years old. I’ve been living with Hydrocephalus for about 12-13 years. It’s been a rough ride through my 90 brain operations, but GOD brought me through it. Please pray and ask GOD to heal your wife. In Jesus’ name I proclaim her to be healed!! GOD Bless.

  • Jimmy
  • January 1, 2019

You really had 90 brain surgeries wow
I had 5 i can only imagine how you feel
Text me 9188897321

  • Shawn
  • April 7, 2018

I was diagnosed at the age of 15 after being struck in the head with a bat.my 1st surgey was in oct 1991.all was well for a few years but in march of 1994 i knew somethinv was definitely wrong.i was told that i cheated death by hours and was immediately taken to surgey for replacement.Since then life has been fantastic the shunt improved my quality of life and acually cured other ailments i thought to be unrelated 24 yrs …Life is good

  • bill meade
  • March 28, 2018

Someone who has had the prrcecure completed , would they be rated if they apply for life insurance?

  • Tammi burch
  • March 27, 2018

Have cerebral palsy

  • Kelly
  • March 22, 2018

My granddaughter has this. I am confused because the Dr.’s want to wait as long as possible before treating her. She is a month old and showing no systems but, her head is larger than normal. They want to make it to 6 months and then create a new path way for the fluids. I am concerned with the wait. Can someone explain this to me? Is there risk to development by waiting?

  • Charlotte
  • April 15, 2018

Hi my son started showing signs about that time they did not start doin anything till his he went off the head chart in the red book it was a difficult time when it happens coz there so young but it helped him a lot he got Spina Bifida as well so was not easy x

  • Jan
  • May 8, 2018

Kelly can you get a 2nd opinion? I had a premature son 40 years ago and he developed hydrocephalus. By the time the doctors placed a shunt in his brain most of his brain tissue had been destroyed from the pressure of the fluid build up. Your granddaughter’s doctors are probably keeping a close watch on the size of her head. Peace & Prayers, Jan

  • Casey
  • January 1, 2018

I’m a 35-year shunt veteran, and got into a major car accident back in 2016. Never had a problem with the shunt for 34 years before that, but ever since my depression and anxiety has gotten significantly worse. Has anyone else experienced this? I almost wonder if the shunt worked slightly loose and started building more scar tissue in the ventricles, which leads to depression.

  • ALEXANDER BROWN
  • January 4, 2018

I’m 29 and live in Edinburgh, Scotland. High School was really hard and I was extremely lonely and isolated back then, having VP shunt revisions.

However the past few years have been much better, I have attended many ISHCSF conferences and met many wonderful hydrocephalus experts. I also have 2 good friends with VP shunts. It’s very hard to raise funds to promote hydrocephalus as I’m not a medical professional but I still hope to attend the next conference in Bologna.

  • Stephanie Beal
  • July 13, 2018

If you feel something is wrong then seak as many opinions as needed until you feel you got some answers. I’ve had a shunt since I was an infant. I am 43 now. I’ve had more revisions than I care to have. During my revision in 2013 something went wrong. The doctor missed the ventricle by 1/32 of an inch. As a result i ha temporary paralysis on the left side. Since then I have had lots of other issues such as a lack of balance, headaches, and eventually seizures (which I hadn’t had sincei eas 3-4 yrs old). I knew something was not right with my shunt. It wasnt until July of last year that I finally got a neurosurgeon to listen and replace the shunt. I have not had an issue since.

  • Mary Huffman
  • December 28, 2017

I am a 68 year old adult who has had hydrocephalus since I was 2. I had my first Codman Hakim shunt put in in Nov. 2014. I’ve had several instances of it readjusting when I was too near magnets. How close can I get? And do batteries and lithium batteries affect it also? Many thanks!

  • Stephanie Beal
  • July 13, 2018

Unfortunately i had this problem as well. Honestly even a cell phone affects the programming of the shunt. I dont know yhat there is a “safe” distance. I do know tgat the shunt that is out now is very resistant to magnets. Supposedly you can even have an MRI with the shunt I have now. It may come down to having to have it replaced.

  • Pamela TASSEY
  • December 6, 2018

Isn’t this a discussion you and your Dr should be having?

  • Sara Grimmer
  • November 8, 2017

Hi, my name is Sara. My diagnosis of Hydrocephalus occurred at the age 11 (May 2005) following a concussion on a slip n’ slide. The MRIs and CT scans from the incident revealed a swollen left third ventricle. However, I was not born with Hydrocephalus. As a child, I received many CTs and MRIs because I was born with a congenital amputation of the upper left arm. None revealed any brain abnormalities at that time. Therefore, my Hydrocephalus either developed with age or was onset through injury. I never experienced any symptoms or difficulties suggesting I had Hydrocephalus growing up. After talking with many doctors from UNC and Duke University, in October 2006, I successful received Ventriculo-cisternostomy,3rd Vent at Duke University to open the clogged passageway and relieve any further pressure from fluid buildup. Rather than using a shunt, this method creates an opening between the third ventricle and interpeduncular cistern. Since the surgery, I had MRIs every year until I was 18 and now have them every 2 years as a check up. I am now 24 and I have had no problems since my surgery. This may alternate option to a shunt discuss with your doctor.

  • Michael Robertson
  • September 9, 2017

I have live with Hydrocephalus all my life. I work at a courier in Downtown Vancouver BC Canada I have done it for 29 years now and I love it and I also do public speaking at Toastmasters I done for almost 4 years now. I have a awesome life where I go my shunt goes.

  • lexie
  • October 8, 2017

i was born with hydrocephalus

  • Jessica
  • November 7, 2017

How many surgeries have you had? I have congenital hydrocephalus my first surgery was 3 months old my last surgery was in 2008

  • Jasmine
  • November 19, 2017

Me too I have lived with this all my life ….I have a shunt and only had to have one surgery but that’s when I was way younger I’m 21 going on 22 and life is great.

  • Darren P.
  • August 30, 2017

I was born with Congenital Hydrocephalus in 1969, as was my younger Brother in 1974. I was but weeks old when my first shunt was placed. To paraphrase, the Neurosurgeon essentially told my parents, ‘You [just] made it.’ Since that initial surgery to place a VP shunt, I’ve had revision surgeries; to date, numbering in the teens. In August and into September of 2016 I underwent ETV (Endoscopic Third Ventriculostomy) surgery, followed by complete shunt removal, after it was determined the ETV was working properly. These two procedures; so far, have eliminated the necessity of a shunt.
There is also “a chapter” of my life, beginning in 1993 that involves the onset of what has been termed “Seizure Disorder,” due to the number of surgeries I’ve had.

  • jesse
  • October 20, 2017

Darren, can you expand on the “seizure dissorder”?

Is it from having thinned skin, or bony voids from older shunt burr holes?

  • Darren Pugh
  • January 18, 2018

Darren, can you expand on the “seizure dissorder”?

Is it from having thinned skin, or bony voids from older shunt burr holes?
Jesse, I cannot authoritatively comment on the cause of the onset of my seizure disorder in AUG ’93. After my first-ever Grand Mal seizure, I was taken to a Neurologist vice a Neuro[surgeon], who; upon learning I was Hydrocephalic and all the details leading to that point in time; I was simply diagnosed with a “Seizure Disorder” and prescribed DILANTIN; the cause defined as numerous surgeries and the development of scar tissue. Being unable to refute the diagnosis, my family and I accepted the fact that I may be on anticonvulsants for the rest of my life. Now, almost 25 years later, I’m still on “seizure meds.” /:-\

  • Elise
  • August 1, 2017

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.

  • Jasmine
  • November 19, 2017

Wow …no shunt …I have never heard of anyone with it not having a shunt. a blessing

  • Andrea
  • May 21, 2018

I don’t have a shunt either I just got a spinal tap done that’s it

  • Brittney L Hollywood
  • September 15, 2018

Hi Elise
My son was born with hydrocephalus and his doctor told us his case is not severe. My son is now 3 and still not walking. Can you tell me when did you start walking?

  • Josh Raghavachary
  • July 27, 2017

I’ve had hydrocephalus since I was eight months old

  • Angie Stoffen
  • July 23, 2017

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.

  • Jessica
  • November 7, 2017

That is very positive. I am 35. I had my first shunt @3months and have had about 20 surgerys

  • Doug Hughes
  • July 19, 2017

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

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!

  • margaret owens
  • September 28, 2017

My daughter was told her baby has hydrocephalus. She is in her fifth month. What state are you from we are from NY.
You just continued on with your pregnancy and delivered a healthy baby? How rarely does this happen

  • Jessica
  • November 7, 2017

Hi my name is Jessica I was born with congenital hydrocephalus I had my first surgery at 2 years old and had 20 surgeries throughout my life my last surgery was in 2008

  • Jessica
  • November 7, 2017

Oops ment 3 months old. Sorry my voice recognition on my phone doesn’t always work correctly.

  • Sarrah
  • September 29, 2017

If it makes you feel any better I had my 20 week ultrasound and they found nothing wrong. I went an got a “fun” 3D ultrasound at 24 weeks and that is where they found the enlarged ventricles. Do not let anyone put you down!

  • Lauren
  • October 10, 2017

Hi Gabrielle,
My cousin is currently 28 weeks and having a VERY similar pregnancy experience to your shared story. As a peds oncology social worker my initial instinct is to seek out resources to her as there is not much else I can do to help. I am wondering if you would consider connecting with her via email or phone to share your story, share resources, and help encourage her continue to be a good advocate for herself. She already is but as a first time mom this is new territory for her and with this diagnosis the rest of our family as well.

  • Barbara
  • March 8, 2017

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

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

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!

  • Louis
  • July 7, 2018

Did you ever hear any fluid in head after shunt placement

Leave a Reply

Your email address will not be published. Required fields are marked *