Living with Hydrocephalus: Emma's story
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- čas přidán 19. 09. 2011
- Because of an intraventricular hemorrhage in utero, Emma Richards was born with hydrocephalus: an excessive accumulation of cerebrospinal fluid in the brain. The condition causes harmful pressure on the tissues of the brain, which can result in a variety of impairments in brain function.
Emma's parents, Jennifer and Bill Richards of Litchfield Park talk about the symptoms Emma showed when she was just twelve days old that led to her diagnosis. Pediatric neurosurgeon S. David Moss, M.D., Emma's doctor, explains hydrocephalus, how it is treated, and talks about Emma and her prognosis.
I was born with Congenital Hydrocephalus, I am now 24yrs old. After years of surgeries, I had my last one almost ten years ago. I am doing much better. I am currently studying pre-med, so that I can help children like myself. Just wanted to post a little something positive for those young people and parents worrying about their future :). If I can make born at 6months 2lbs, you can make it. Be strong and have faith.
What is congenital hydro.?
Congenital, meaning present at birth/lifelong. Hydrocephalus is cerebral spinal fluid around the brain
Im currently pregnant and my daughter has hydrocephalus but her spine and heart and everything is fine but she has fluid in her brain that has blocked someof the front brain from growing so im trying to see if a shunt will help her or not.
Well I have had a shunt all my life, including a few replacements. And currently 24 years old and doing perfectly fine. But frequent check ups will be necessary.
Another thing is nutrition is very important, and you might want to check out the Hydrocephalus foundation's website. www.hydroassoc.org/
I was born with hydrocephalus, but I live without shunts. Most doctors believed that I was going to be permanently disabled. Now, I live happily with friends and a family with no disabilities. I kinda owe my life to the doctor who saved mine :)
Thanks for listening!
keyproductions2000 You might be physically ok buy do you get headaches, short term memory loss, feel like vomiting? Or tired all the time? Those are symptoms of Hydrocephalus. If you do I suggest you get this treated because it damages your brain. The longer you wait the more your brain will get damaged. I just got diagnosed which my neurosurgeon believes it's Hydrocephalus, this would explain why I have such bad short term memory and I am always sleepy.
I just found out I have this and I am 47. I have been having migraines sense I was a kid and had an MRI and found it. But now I have no idea what to do. He said leave it alone and try more migraine meds. But they really don't help
My daughter 1year 9months old she had the same problem she cant sit nd walk
Stalkerx13 I never had any abnormal headaches and I got the memory of an elephant.. my head is larger then normal
Little Eastwood hi my son just diagnosed with this and he is now 7 years old and the Doctor told me shunt will hurt him more than benefit him, she told me why he didn’t have it when he was a baby ..but there are no symptoms. So you didn’t have shunt at all?could I know how old are you and do you have any vision problem?
I had hydrocephalus as a baby and had the shunt put in at some months old. That was either 1965 or 1966. I think I was one of the very first to receive that new shunt procedure. I think the surgeon’s name was Dr Long in Dallas Tx. Im 57 now and haven’t had any complications that required medical intervention. Im so grateful for the pioneers of this procedure and to God who made it possible.
I was born perfectly fine and a day later had a stroke and they determined I had Hydrocephalus put shunt in and I'm 32 years old with 3 kids I'll pray for her.
Was diagnosed with hydrocephalus at 6 weeks old when I received a VP shunt. I have been so fortunate with only needing two surgeries thus far in my journey. I was a junior national tennis player and continued playing at a collegiate level. Today, I am 26 years old and a law school graduate. I'm posting this for any parent out that and child that you never know what your child can do so never give them limits. I was blessed to have parents that gave me no physical limitation except contact sports.
I am 32 and have had 1 surgery as a 1 year old without any complications. I am lucky that Sweden have great healthcare.
Congratulations! Do you feel like your cognitive abilities are average or the same level as your colleagues? You didn’t have to work harder, and spend more time studying?
I was diagnosed with hydrocephalus when I was 7 months old & I have VP SHUNT & I'm now 46 there is hope
hi can i ask if you have headaches as well like my wife do
God bless little Emma! I was born with hydrocephalus and I have 2 shunts. I've gone thru everything Emma has and I'm living proof that its not a death sentence.
on Sept 18 of this year, I celebrated my 43rd birthday.
Emma is a beautiful little girl!
May god blesd u... give me postive sentence....
Rohan Zener God bless your simple mind
God bless you!!!
Thank for giving me hope,,a have a daughter with one shunt she is one year know ,,
Nice. I am 52 and my last shunt was put in in '77 and the last neurosurgeon I saw thinks that my hydrocephalus has resolved because the tube to my gut is all broken up and not that usable.
I have hydrocephalus and I have made it to age 15 so far with my shunt! God is so good!
Lauren's Hairtyles And Tutorials hello 👋 Lauren my name is Ricardo I also have hydrocephalus I was born 1994 I am now 23 about to be 24 god is definatly good
I’m 36 and no surgeries so keep the faith! ❤️
Lauren's Hairtyles And Tutorials hey i hope you still okay i have one boy with hydrocephalus his 4 years old and has the original shunt thanks to god his ok but we were just toll my 2nd son has hydrocephalus he was just born
Lauren's Hairtyles And Tutorials God bless u. God was there and always will be
22 after my 4th revision. Everything said in this video pretty what I went through in terms of symptoms.
I was born with hydrocephalus and I am now 56 years old. I watched your video and can relate to the problems that your baby has. I would love to have you as a facebook friend. As I mentioned I am now 56 years old. My last operation was in 1983, and the doctors said at that time that it is very possible that i will never have to have another surgery. In watching your video I also learned that she has a seizure disorder, so do I, however I have only had 1 seizure and luckily i was working, (in a hospital) the day that it happened, I have been taking medication since that happened, and hopefully will never have another one. I am here to give you all the moral support i can and be if nothing else be, your facebook friends.God Bless You and your precious daughter, I hope to hear from you
Hey I saw your post. I don't mean to be invasive but if it's ok could I ask you a couple of questions? My sister had hydrocephalus as a child and is now roughly your age (she's 52), and seems to now be suffering from psychiatric problems such as severe depression and anxiety. Lately she's given me and my parents reasons to believe that she is having some sort of severe emotional breakdown. I guess what I'm asking is in your humble opinion could that be related to the hydrocephalus? And have you had any residual problems or issues with depression or anything like that? I was just curious because I just don't know. Any info you might have would be extraordinarily helpful. Thanks!
I survived with hydrocephalus until 11 years.Yeah im now 11 years old.:)
Steven Perry ur cause of hydrocephalus may I know please?
Hydrocephalus due to aqueductal stenosis can have full life span?
Do you have your VP shunt still?
Can these people have children?
my daughter passed at 13 just 4 months ago still can’t believe it
@@tbone2872 did your sister went through any surgery ?
I was diagnosed with hydrocephalus at age 3. To this day I live with it and am ok. I am so thankful for all the shunts and treatments that saved my life.
I acquired Hydrocephalus due to an IVH at 3 days old (I was born at 26 weeks). I was shunted at 4 months old at Children's National Medical Center and by the time I was 1 and 1/2 I had had 6 shunt revisions. I saw my neurosurgeon for a checkup once a year with no issues.
On February 1st, 2017 I woke up with unusual abdominal pain and because the pain got worse over the course of the day my parents took me to the doctor. I asked if it could ba appendicitis but that was shot down quickly as I didn't have rebound tenderness though I had vomited twice. To be safe they sent me to Inova Children's Hospital. Tests revealed an ovarian cyst, a disconnected shunt, and yes a severely inflamed appendix. I had surgery the next morning.
At a follow up with my neurosurgeon I was informed that I'd need my shunt revised again; I began to cry. He looked me in the eye and told me I would be ok.
On April 13th, the day of my surgery, I was very nervous. During induction of anaesthesia, I began to have an anxiety attack, I said, "I'm scared! I'm scared I don't wanna die! I don't wanna die!" I was terrified.
Thinking quickly my neurosurgeon approached the operating table and said "Hey Elizabeth, why can't dinosaurs talk?... Because they're dead!" I laughed for about 2 seconds and then saw black for an instant before waking up an hour later in recovery. Staring at the ceiling I said, "Thank you God!" I knew God saw me through. Thank God for that!
Elizabeth Philpot my daughter was born 2 weeks ago. At 25 weeks. She just got out of surgery. To put the reservoir tap in. To relieve some of the pressure from the spinal
Fluid. She has ivh. And hydrocephalus. I’m scared for her. But seeing u guys gives me some hope
This Girl will most defiantly do BIG things when she grows up.... I have grown up living with some of the same things she is dealing with and as i was told i was not expected to live past 2 or 3 years of age but now i am 33 going on 34 in October. I know every case is different but i am not on any kind of meds today but i was when i was a child. I wish her and her family all the best.... I am also working on a book that will reflect my life and times as a child and what i am doing today...
My daughter is now 51 years old, she is a grandmother. Denver's Children Hospital neurological team did the shunt surgery on her in 1969. She had 4 pockets of fluid, 2 on top of the brain and 2 in the back of her brain. Her operation was the second successful in the nation. I'm so glad we refused to institutionalize her as a baby, and took the chance on the shunt surgery. Back then, it was common to put these kids in state homes with no surgery for the problem. Anyway, she has lived a normal and very successful life all of these years. NEVER give-up, have faith always.
Cheryl Miller may I know please is it due to aqueductal stenosis?
@@mattasowjanya9798 It was determined that her condition was caused by breech birth. The delivery damaged the brain linings. She should have been a cesarean not vaginal birth.
@@cherylmiller7929thank you for ur reply
May I know please hydrocephalus due to aqueductal stenosis can live full life span ?
These people can have children or not?
Is this common or not (aqueductal stenosis) please answer these questions
Please..
@@mattasowjanya9798 Yes, they can have children and live a full life span. The only issue is; any head injury can cause the condition to return.
@@cherylmiller7929 thank you
Thank you Emma, I am a nursing student getting my degree to become a RN. Your story helped me understand hydrocephalus a little better. I would like to work in pediatrics, and hope that I can take care of and help children just like you (spunky, outgoing & full of life.) Your amazing. Keep smiling! Your adorable!!!
If anyone wants to share about their hydrocephalus please let me know. My sister has other complications that prevent her form articulating how she feels, but she acts out her pain now (in anger). Then when the pressure stops she says, "I'm sorry, Annie." It breaks my heart that she feels she must apologize for being in pain when I know she can't articulate her issues. I'd love to help her with your feedback. I'm happy to start a blog where we can all share.
Thank you for sharing Emma's story.
Go Emma Go!
I am 39 and have hydrocephalus.
I just love this video! I had a child with congenital hydrocephalus as well. I am now in the medical field and this video is a perfect addition to a presentation I am giving on hydrocephalus. Thanks for sharing it!
Thank you so much for sharing. My friend's unborn baby has diagnosed with this condition. I believe this will be a great comfort for them.
I have it and have had a shunt since birth. Mine goes to my heart as that is how they did it when I was born. I am 41. I have never had any issues with my shunt.
It's been 5years ago you have commented on this video. I also have hydrocephalus because of my bike accident brain injury. So i wanna know if you still did not had any surgery for changing shunt?
Reply me if you can. It will help to be positive about my future with shunt.
@@AniketGhosh. No.I have had no shunt issues or surgeries
Can you please tell me if weed smoking is injurious for hydrocephalus patients and shunts ?
@@AniketGhosh. I don't think so. I don't smoke weed but I doubt it will help
Just because you are using shunt for long times i'm asking you for some information. Please dont mind about that.
I have a last question. Can i do bodybuilding with a shunt? My shunt has gone through the abdomen
I was born seven weeks prematurely with congenital hydrocephalus in 1979. Its odd how treatment is met with such varied results that differ from person to person. The doctors who operated on me didn't know what to do at first. I endured seven surgeries as an infant. They tried placing my shunt in my abdomen as a baby. That failed. Eventually they placed it on the back of my head, and it worked just fine until I was seven years old. I barely remember any of this but when I was seven I had to have the tube that goes into my stomach area lengthened.
The surgery was a failure. Cerebral fluid began leaking out of the incisions that were made on my belly. The neurosurgeon thought it was due to weak skin at the surgical site so they used a surgical staple gun to try to stop the leaking. That traumatized me. He stapled my fresh surgical scars while I was awake in an outpatient procedure. What had happened was the tube came apart, or it wasn't draining where it was supposed to, its difficult to recall. So, I had another operation to fix the tube.
Then when I was about 12 years old I began experiencing excruciating headaches. They didn't go away so my mom took me to the doctor and had cat scans done. They determined that fluid was building up inside my cranium again, putting pressure on my brain, and causing the headaches.
I ended up getting a complete shunt revision as a result. That was back in 1991. My neurosurgeon at the time told me that I could one day perhaps no longer need the shunt to survive, that the brain would heal and cerebral fluid would drain the way its supposed to. It would seem he was correct. I haven't had any problems or received treatment of any kind since 1991.
But, there is permanent damage to my mind. I suck at math, and I struggle with balance and coordination issues. I also get confused easily. Jobs are difficult to find, because I flunked out of college due to my poor math skills. The best I can do is work part time as a janitor. I have trouble relating to other people, I have very few friends( none of which know about my hydrocephalus) and as a result I live in relative isolation. I've never been married and I don't have children. I doubt that will ever change.
I'm glad to be alive but being hydrocephalic has caused me more pain and suffering than I care to admit. I've always hated being different, being an incomplete person. Also, I can't help feeling like its still a ticking bomb waiting to go off and I can't afford health insurance these days.
I don't look forward to being middle aged. Anything could go wrong--headaches, seizures, senility could affect me earlier than it should.
Hydrocephalus is a curse, at least it is for me. I've always felt like I wasn't meant to survive childbirth. My mother has admitted to me that my doctors encouraged her to have an abortion but the only reason she didn't was because she was going to church at the time and she felt that it would have been sinful. I, and others like me who were born prematurely with congenital birth defects were referred to as "miracle babies".
I've had a lot of good times in life but at 40, my life is nowhere where I imagined it would be when I was younger. Its hard to stay positive sometimes. There are times I wish it all would just end. But my mother said something else to me. She said that a lot of people prayed for me when I was an infant going through those first trial-and-error brain surgeries. So I am in conflict. I think the prayers worked but I just can't escape the feeling that I am out of sync with the rest of the world. I wake up each day and I try to live life to the fullest. I've experienced many wonderful adventures. But I'm not looking forward to getting older. I'm afraid of whats to come.
I'm the only person I know who has had a successful third ventriculostomy. I've lived with it for eighteen years now. I feel extraordinarily luckly.
Me too . 10 yrs and 3 months almost to the day. It’s amazing what these doctors can do.
My 4yr old was diagnosed at 27mths old with a severe case like Emma's & had an ETV within 16hrs. So far we are right at 2yrs and she's doing great.
I have hydrocaephalous, it was discovered when I was 18 months old , I have a peritoneal shunt from my brain. I am 41 and have had several operations during my life, the worst being meningitis when I was 16 due to shunt malfunction. I have learnt to accept my condition and lead a normal life. I never play the what if game as I am happy where I am and what I am doing, every now and then there is a slight health blip, but I just accept it and go to hospital for a check up. The most uncomfortable investigations are shunt taps, where they drain fluid from the reservoir. There is also a Celtic blessing I live by. Yesterday is history, Tomorrow is a mystery, today is the present so treat it like a gift. Ie forget about yesterday, don’t worry about tomorrow, today is here and now healthy so treat it like a gift as u don’t know what is round the corner. 🙂
I just had shunt revision surgery about a month ago after having no symptoms for about three or four years. There was also a separation of the tube in my neck that was repaired.
Thank you for sharing! My son is 4 with the same medical condition as Emma. God bless you guys 🙏💕
this story was very inspiring. Our son was born with Hydrocephalus and unfortunately he passed away 8 days before turning 1 year old. We put his story up on youtube for anyone to see if they'd like to...there are over 90 videos in his life story. We hope we can spread hydrocephalus awareness through his life on this earth and through his videos while he is currently in heaving sitting by God's side doing his special heavenly job. If anyone would like to, feel free to watch them at your convenience and let me know what you think of them. Thanks
hello
Where
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I was born with mild cerebral palsy. When I was almost 8 years old, I developed hydrocephalus after a head injury, and my already large head enlarged even more. When I was fourteen, I began having seizures. I am now 41. I have had the same shunt since my original one in 1987. With the only medication that has worked for me, I haven't had a seizure in more than twenty years. I hope Emma is doing well today.
Hi. I have hydrocephalus and quadriplegia cerebral palsy as well as blindness. I'm 31. I'm an electric wheelchair user. Emma is very cute. My symptoms were vomiting, visual disturbances, and headaches. I had a bilateral intraventricular hemorrhage at birth. I have a VP shunt like Emma. She is a real cutie! Keep in touch
This brings tears to my eyes praying for her 😢🙏🏻
My sister has Hydrocephalus and is one of six childern. She's currently nine and also has a Chiari malformation. So when I hear "Shunt" or "MRI" I just think: Do do do do do, all normal. She knows what an MRI is and she can explain it very well. She is amazing! Once the shunt tubing became exposed and we had to rush her off to the Hospital. I remeber that night. (She had the shunt replaced and is fine now) She also has some disability(s?), I forget what.
To all parents worying: You can do it, my sister is doing it and your child can too.
How did the shunt become exposed? Was it from a fall or impact? Is this at the test valve on the head? I'm 46, and I've never heard of the shunt becoming exposed, but my last surgery 19 years ago was from a break in the spot over the shoulder. I've had 5 total.
@@toordal The shunt tubing (which runs ear the collar bone for my sister) had slowly worked its way out and was irritating the skin, we'd been keeping a close eye on it, so we were ready and whisked her away to the E.R., it was scary, but not at the same time.
Any way I'm rambling on to a random stranger on the internet! Have a good day Mr.Warren!
Bless you guys!!!!
the kids in school had a ball calling me egghead. kids can be so cruel
Kids can be, but then you have the good ones like my sistes entire class, when she was in the hospital for a shunt fiixng/repairing they all make cards for her and she has kept tham to this day. The ones who called you names were probably the worst type.
I often feel the fluid exiting my brain I always thought just I n my siblings had it I was wrong God bless all you! That live with this...n pray that no else ever gets this
I'm 20 weeks pregnant, my baby was just diagnosed with hydrocephalus. Waiting on amniocentesis for answers right now and terrified. Thank you for sharing
You and your baby will be fine. Keep going.
I was born with hydrocephalus and I'm 37 . I have had 10 revisions but quick recovery each time. Most of the symptom free aside from frequent headaches. And I have 2 kids who are healthy. It's very treatable.
I am also 20 weeks pregnant,, and found out two days ago that my baby( boy) has hydrocephalus.. I am vary sad
How's your baby now?
Please let me know how everything went,im 5 months pregnant with the same issue but my 1st boy is fine. We are in between appointments at the moment to know how bad it is and what to expect the waiting is the worst part please let me know how ypu get on.prayers and wishes to you xx
My brother devyn is now 5 years old abd has been living with hydrocephalus for his whole life but sadly due to the suvarity of it he is permantly disabled but making new progress everyday I am 12 years old and have watched his progress bloom evermore with each passing day. If people are struggling with this then just have hope for the best and worship and love any god you beliven in have a wonderful day!
I have hydrocephalus myself I've had my own experience with it and it gave me headaches and nausea but I got over it I couldn't walk straight or see normally or keep my head upright but now I'm living a normal life without any issues
I was born at 23.5 weeks. Hydrocephalus has been a constant part of my life since 10/15/1994.
Now 26 years later, I have been in and out of the hospital my entire life.
Thanks for sharing this video. My son has Hydrocephalus and he will need a new surgery to install a shunt soon.
Jacobi just turned 4 he has hydrocephalus and cerebel palsy he is my angel baby for sure:)))))
I also had an IVH in utero, congenital hydrocephalus and cerebral palsy (spastic hemiparesis- right side). God bless Emily and her family.
Sara Stottler my unborn baby is in 35week & yesterday i found that my baby is suffering from hydrocephalus ..... I don’t known what lies in the future... & I’m terribly deep inside scared sad & lost
Im 55 now with hydrocephalus. Had my first shunt at 10 days old. Have 2 grown boys 28 and 24 divorced but have a normal happy life
I was born at 33 weeks and I had a grade 4 intraventricular hemorrhage and hydrocephalus and my mom was able to hold me for a brief moment, but then doctors and nurses came and took me to the neonatal intensive care unit at St. Joseph’s Hospital in Phoenix, Arizona where I was treated for both conditions and was there for a month. I have the very same VP shunt that I have received since I was 2 weeks old and I am now 25 years old. I have cerebral palsy as a result of the brain damage that I had before I was born alongside ADHD and autism.
When I saw the size of Emma's head, I wondered how the hydrocephalus was not caught sooner. I, like Emma, had the same symptoms when I was an infant, in '71.
when i was Born i got a shunt and i was in The hospital 2 months
it makes you appreciate what you have
my parents, who are both nurses, mentioned some of the symptoms to my grandfather who was a retired pediatrician, and he was the one who initially told my parents to get me to CHOP immediately.
It's crazy, this girl developed a seizure disorder?! it wasn't until I was 17 that I had my first seizure. somewhat of a family history on my father's side, but I had never had one, prior to that. My dog, got my parents attention with the seizure--he was barking at 3am and he was a big dog with a big bark
Stay strong Emma!! You are in Gods hands and he will take care of you!!
I am 50 years old and had to have a ventriculo shunt. I had balance, double vision, vertigo and the most horrendous headaches. I never knew I had one of the worst cases of hydochephalus. My drain is placed above my heart as the first shunt could not drain in my abdomen. Pay attention to the symptoms. I have permanent damage to my eyes optic nerves due to the pressure. I have to wear prism glasses where I never had to wear glasses.
I have 2 shunt valves but only one is connected to the tube- as the surgery is delicate and risky the old valve was left in my brain as removing it could have caused more harm. Emma's beautiful
Hydrocephalus occurs when the blood from the aneurysm gets into the ventrical and causes the ports (I call them ports since I don't know the technical term) that reabsorb the fluid to scar over. If your aneurysm wasn't too bad and you didn't have too many of the ports scar over, then your able to still reabsorb cerebrospinal fluid fast enough to not have pressure buildup. Most that I hear about that die from an aneurysm die right away from the damage it did, or from complications during surgery.
beautiful story
How was this missed at delivery / during the first couple days at hospital?
I was born with Hydrocephalus and got Epilepsy from I am 28, the "executive center" in my brain is under developed; something the doctors neglected to tell my parents... So I was branded a "problem child" in school. And pretty much looked at the school years as a prison term... 9 years ago I found out the truth. And two years ago I spent 3 months in the hospital because my shunt got infected 4 times...
Im learning to live with this chronic illness that I for 2/3 of my life thought was "fixed".... STOP TELLING THE PARENTS THEIR CHILDREN ARE FIXT!!!!! The children will NEVER be "fixed" better yes, healthy? Yes (well for the most part) but they will ALWAYS live with a chronic illness. Its not a death sentence but your child is not cured...
Dr. Moss is the best :)
I'm glad to be here and when you think it wasn't until the 60s that shunts were introduced it's not that long ago really. I know of people who don't understand how severe hydrocephalus is as a condition.
Hi there,
My 6 yrs old son has a shunt since he was 9 months. A month ago he felt a kind of drowsy, sleepy, and not feeding well with a couple of episodes of vomiting. We visited the doctor who kept the shunt and told it is a case of temporary blockage. A couple of CT scans were done at interval of 4 days and the later report was fine,so we were sent home. Now he goes to school, is active and playful. Also I was suggested to do a shunt revision if such symptoms appear in future
Jerez, I can’t believe the doctors missed it. Just looking at that pic you can see she’s hydrocephalec.
I had the shunt at birth and on August in 2017 or 2018 I had to get surgery when the doctor told me i had hydrocephalus and i know the reason how i had but i didn't know about the fluid at all
I LOVE your couches. Where did u get them?
Are you kidding me????
I had a arteriovenous malformation which ruptured few years ago, some do rupture but people can have them whole lives with no problems and no need for surgery, it all depends on the person and the size, location of the aneuryms ect. Mine led me to have obstructive hydro and I now have a shunt, from what iv read most do this. Not everyone dies or becomes disabled like me I was lucky I guess, Have the doctors said anything about operating? I can answer any questions you have :)
@Grimcandys how severe is it?
I'm 44 and have congenital hydrocephalus. My initial surgery was as an infant and have needed 4 more with the last being in 2001. A year and a half ago I learned for the first time that instead minor or light case of hydrocephalus that I actually had "moderate to severe" hydrocephalus despite only needing 5 surgeries total. How many people here have that "moderate to severe" or worse classification? I've never had a seizure, at least that I know of. Do many others have seizures or not?
Then at age 39 my vpshunt malfunctioned and broke and i had a revision and now i am left with debelitating headaches
I recently came to know on my anatomy scan that my baby has mild ventricular dilation at 21 weeks. I’m so much scared .
Does this baby have a cortical vision impairment as Dr. Christine Roman describes in her book. CVI
I need help can hydrocephalus treated by doing ocupuncture
I WAS BORN IN MEXICO CITY WITH THE SAME MEDICAL CONDITION . I'M 38 YEARS OF AGE NOW . HALF OF MY LIFE I BEEN HAVING OPERATIONS ON MY HEAD . I HAD ONE 2 YEARS AGO . AND DRS TOLD MY MOTHER I WAS DEAD . BUT BY THE GRACE OF ALMIGHTY GOD I CAME BACK TO LIFE AFTER 4 HOURS , BUT TO TELL YOU GUYS THE TRUE I THINK WHEN I WAS DYING AT THE HOSPITAL 🏥 I FELT LIKE GOD WAS WAITING FOR ME . FOR SOME REASON HE DIDN'T WANT TO TAKE ME .
Does the head goes back to the normal size?
I was born with congenital hydrocephalus. i had my first vpshunt at 12. i also have dpasticity in my legs and i have had 3 leg surgeries and i have had physical therapy to learn how to sit, walk etc..
I have had hydrocelphlause all my life and the doctors told my mom and dad i'd probably not make it past 5 yrs old! I was born 2 lbs and 4 oz!!
Shunt ?
I have had Hydrocephalus seance i was born but i couldn't get a shunt until i was 3 months cuz i was to small. Everything was fine until i was 5, then i had to get surgery on my shunt. I'm 14 now and i hope i don't have to have another surgery any time soon.
My goodness she is so beautiful what a beautiful smile & family. God Bless You Baby 🙏🏻❤️❤️❤️😘
If a child has congenitally mild communicating hydrocephalus and at age 6 have delayed milestones, what is the expectancy of normal speech and academic development?
i was diagnosed with Hydrocephalous last year as an adult at 58 .My only symptom was I got very light headed like I was having a stroke. Fortunately I don't have to deal with persistent headaches which can happen to many persons with this condition.. Unfortunately my doctor on the advice of my neurologist immediately made me forfeit my drivers permit
Please tell me if Hydrocephalus/Meningitis causes eye damage. I had a lazy eye as a kid and I am wondering if that caused me to have eye probs. My mother always thought it was because she smoked ciggies. Thank you for your response. Just curious!
I'am 13 so far!
I was diagnosed with aqua ductal stenosis at 15. I had my first brain surgery at 21 and another months later. My shunt stopped working at 23. I don’t know many who have delayed aqua ductal stenosis which gave me hydrocephalus. I get tired easily and more fatigued. I don’t know what’s normal feeling for me and what’s not. I do my best too take life day by day.
Emma is so lovely!
I have a mild case of hydrocephalus from a cyst on my 3rd ventricle, and had a shunt inserted in my head draining the water to my stomach at CHOP back in 94. When my shunt occluded, I was in 9th grade (99), I was vomiting and sleeping all day. when my mother picked me up she could see my shunt apparently bubbled off my head, got me right to the hospital, where she worked, and they got me to CHOP by helicopter immediately.
i have hydrocephalus and trigeminal neuralgia. Is there a connection?
My two kids have it as well but no surgery, they are 3 an 1 years old
I’m 30 years old had hydrocephalus since birth I experience headaches from time to time
People with hydrocephalus have more intelligence than most Twitter users
She’s beautiful!!
I was born with congenital hydrocephalus in September of 1988 avd i will be 36 in September. I have had 6 surgeries in that time..my last one was July 1st 2010. I've always had VP shunts and I'm not a candidate for an ETV Procedure.
How is Emma now???? My sister is 35 and she is about to have surgery again?
It's actually kinda crazy to see how many people have this. I was born with it had to have an omya shunt. Growing up with it sucks. Because like all of u I'm sure u guys have a big head like me lol it sucks but hey we're alive right? 😊
Hi im frome Algeria africa . I have an arteriovenous malformation and so hydrocephalus. I was diagnosed at the age of 17 . I've seen so many doctors but they didn't want to do me a surgery ( a shunt) . They sais they will wait until something happens to my eyes . I have headaches. Weak memory and focus. ....ext . My head size is normale. But my big problem is i get tiered i cant work or study like most people . I now have headaches and cant walk properly because i've been working a lot
I was born with hydrocephalus I had to have the tube replaced in my 20s then last year I had to have a whole new shunt put in now I'm 40 I'm going every few months now to make sure no malfunctions or anything
Can l get help about hydrocephlic of my baby. I am from Pakistan and here we are getting trouble in treatment, shortly I need some information , if you can help me.
I have hydrocephalus. Plus I have seizures. I was 2 months early!
I was diagnosed in 2022 in my 40s. They say I have had it since birth but it showed up in adulthood. It’s called LOVA. I had an ETV last April which made me life threatening complications called cerebral salt wasting syndrome and acute kidney injury stage 2. Luckily I was treated fast in icu as I was already readmitted into hospital. The ETV failed. I the. Had a VP shunt fitted in sept.
Hi my name is Petrella I have had a shunt placed since I was 10 days old I have had 100s of surgeries now I'm 33 going on 34 next month and I know the in and out of hydrocephaluz
SuperLachelle1 sorry for your condition. My son and hie wife had a baby boy about 10 years ago and he only lived a few hours. The baby had hydrocephalus . He wanted a son so bad and he named him William after my son. We would have called him Billy. My son donated Billy’s organs to help other babies. August 16 of every year, I cry it was Billy’s birthday. I know he is in a better place now. My son was blessed with four girls who are all healthy. I hope things can one day get better for you. Sandy
I've got hydrocephalus, open lip schizencephaly,a stroke at 7 months old,high fever 103.5
Hi. I was born at 29 weeks 2lbs 6oz one of identical twins in England. Sadly my twin passed away at 9 days old. I'm in a powered wheelchair and have acquired hydrocephalus after a brain bleed. I also have spastic quadriplegic Cerebral Palsy and a severe visual impairment and am registered blind. I had my first shunt surgery at 2weeks old and surgeries until age 11.
I graduated from university, am fluent in Spanish and am also married. I use voice dictation software to dictate what I want to go into my books and am hoping to be a published author someday. I'm nearly 38.
The "water" on the brain is actually cerebrospinal fluid which cushions protects and bathes the brain and spine, My shunt is working well.
I just had surgery 3weeks ago and I had my shunt for 22 years
Does weed cosumption affect shunt anyway? If anyone can answer please reply. I'm having a shunt and still smoking cannabis. If i get to know that weed consumption can infect shunt then i'll stop immediately. Help me by replying in this comment please!
i have that too
I can relate
I have hydrocephalus from meningitis I’ve had it all my life and have VP shunt to drain the fluid and scaring on the brain 😔❤️
What a beautiful little girl