I was born with agennisis of the corpus callosum and hydrocephalus whiuch was never shunted but am now having wosening of symptoms.. visual disturbances,dizzyness,headaches and severe change in my personaLity.. from calm to an extremely angry person for no reason. i also sleep ALOT and can't stay awake. balance issues and cordination problems. seeing my nuero the 27th.
i dont have anything wrong in my body but i have a medical problem with my appearence it needs operations too and its just not nice when people comment no matter how bad it is because they just dont understand and they think its not a big deal to them but it really gets to me
What's the difference between Intracranial Hypertension, Chairi Malformation and Hydrocephalus? I can't tell. I have the Intracranial hypertension, and it's just malabsorption of CSF the squishes your brain. It causes brain damage and blindness. Im almost blind, in my right eye 100% blind and 45% blind in my left. I also have a Crainophyignoma( brain tumor), heart and vessel condition and abdominal tumor. I really don't know the difference between them all ( IH, Hydrocephalus and Chari) its all
Ello, My name is Safire. My cousin was born with hydrocephalus;he has never really ben able to use his right hand. this video explained it very well xxxxx
I developed hydrocephalus after a bout of meningitis when I was 41 in 1993. Now I'm 59. My condition has been untreated so far but I'm due for shunt surgery in a couple of weeks. It's been a long slow degeneration. It started out as chronic fatigue, headaches, and dizzy spells. Over the years it evolved to continual dizziness, severe gait disturbance, balance problems and mental fog. I'm handicapped now, but if the shunt works as well as the recent lumbar puncture did, I'll be happy.
well i am with you the name calling i have a granddaughter that was just born two weeks and five day with Hydrocephalus and her just the sweetd thing ever did see, i love so much still try to get her to eat a full bottle of formal
my boyfriend has hydrocephalus and that is why i was viewing this. you seem to deal with it all very good. he does not. he does not even know i view these things he hits the roof when i do research. i also have an autistic son and i cannot stand when people make fun of others for their disabilities. keep it up you are bringing awareness and that is a great and powerful thing!!!
shit im glad im not the only one with this condition i only got diagonosed with this thing 3 years ago have had issuses ever since had it in my abdomen now have it in my chest down the side of my right lung.hope your doing ok.these people on youtube who have nothing better to do than post negative comments clearly have no lives.so glad to know im not the only one with this hopefully one day there will be a cure for this coz shunts dont always work like there suppose to and its annoying.thanx..
shit im glad im not the only one with this condition i only got diagonosed with this thing 3 years ago have had issuses ever since had it in my abdomen now have it in my chest down the side of my right lung.hope your doing ok.these people on youtube who have nothing better to do than post negative comments clearly have no lives.
seeing baby kayden gave me the strength 2 keep &raise my baby boy who has savere hydrocephalus by myself im 24 i have 3 children 4,3&lucas with hydro im so happy ther r people like u 2 keep us all goin thankyou x
Hi. My name is Taryn Sarvas. I was also born with Hydrocephalus and I was also diagnosed with a cyst on my brain stem when i was 3 years old. I have had multiple shunt revisions in the past. Recently, in March 2011, I was admitted to the hospital for emergency brain surgery and I ended up having 3 shunt revisions at the time. Before that, in 2005, i had 10 revisions. i suffer with headaches every day.
Honey you are a badass, plain and simple! Bravo on making this video.... as for the few retards who pretend to act like they are better than us, well they probably suffer from a psychiatric disorder! :)
Hi my name is Jamie, Im 25 years old and in September last year I was diagnosed with Hydrocephalus. For two years prior to being diagnosed I had been suffering with all sorts of problems such as chonic head aches, memory loss, lack of co-ordination and eventually becoming unable to walk. I recieved two operations and have since recovered and returned to work. I hope you are doing well now. People who make fun should really stop and think. Thank you for making this video. I wish you well. x
Thanks for the video. I have a 10/yo daughter that had a ventriculostomy at 17 months. Great to see you are doing so well and you are willing to speak about it.
Thank you for posting this video. I have Hydrocephalus myself and because of that I have been in Special Education for 4 years. I am not mentally challenged however I need help staying organized. I however do not have a shunt. I know what these headaches are like sometimes they develope into migranes. So next time anyone fells like making fun of someone with a disablity, I say look at yourselves and you make yourselves fell good. You have demoralized yourself. Thank you so much for posting this.
Hi, thankyou for your video, i have just found out my daughter has Hydrocephalus, it helps to know what to expect. Your a brave girl, love n best wishes.
I've had hydrocephalus since 1993 but to date have no shunt. Pressure goes up and down but over time always up. It'll kill me eventually. I can barely walk now and it's hard to focus on the screen because of pressure on the optic nerve. All sorts of other complications too. Eternal headache.
Hey my name is george and i am 16. I appreciate you for making this video. I have Dandy walker syndrome and Hydrocephalus. Last year I had eight brain surgeries and almost died in the hospital. My doctor is Ben Carson. The unique thing is that I have an identical twin who wasnt born with the condition. The last two surgeries I have had lately were on my birthday. Im doing so much better now and Im very happy. Thank you very much.
Hello Toby! How are you? My name is Greg and I'm 23. I very much enjoyed watching your video. i too am a shunt sufferer/hydrocephalus survivor since birth. I look forward to your next video. Keep up the good work and keep well.
As a person who once had a severe case of Hydrocephalus, I feel happy knowing that a lot people out there actually respect us and feel angry toward those who speak offensively toward us
I appreciate your rant. I personally have had some of those nasty comments on videos about my son. It is really just heartbreaking that there are jerks like that out there that feel the need to talk badly about people with hydrocephalus.
Well, as someone who's been shunted since 1967 I can say without reservation that , YES, it does make us superior! :-) Thank you for posting this video. I haven't encountered the problems you describe from other people but I am deaf in one ear and have some short term memory and attention problems. But beyond that I've run marathons and endured pain that other people couldn't even imagine. And no, my parents are from Belfast, so I understood you perfectly!
Hello my son has Hydrocephalus and I wanted to say I am so happy to see your video, I love my son Malachi so much, and he is doing so well, he is responding very well to things and so far developing normally. I just get so scared sometimes. He is still in the hospital and is 3 months old. I am going to upload a video of him shortly.Thank you so much for your heart and may God bless you.
question, how could someone lose hydrocephalus? from my understanding, it is a life long thing. I have it. (no major complications SINCE about the age of 7, Im 21 in 3 weeks) but yeah. Stay strong Girl, And never give up!
Keep up the good fight! You're great! My VA is a bit different from yours. The distal end of mine empties into my jugular vein. Anyway, thanks for sharing your story and for promoting acceptance and awareness of people with hydrocephalus.
People are so ignorant!! I have hydrocephalus too, and I was teased and treated like a freak all throughout elementary school, and for a while during middle school too. I deal with the symptoms you described (especially headache and nausea) day in and day out, and my condition has been exacerbated by a car accident I was in two and a half years ago. My family is very supportive of the different foundations that benefit people with hydrocephalus. Thanks for uploading this!
yep, Ive had a shunt for 16 years, Im 17. And when I explain to people at school the reason why I cant play football. They say, "Ben, you are a freak, you have a plastic tube in your brain". Some even think that my shunt is a metal plate. I sure hope I dont have to have an extension. Ive been very lucky to not need a single surgery since my shunt was inserted, but Im very scared for the possibility of extension surgery.
In regards to your message, youtube is a forum of freespeech, if you cant stomach it then dont step up in here. As for family reading what i say. The onus is on any parent to let their minor on here they should know what goes on here.
my mom takes care of all those adorable retarded babies when they get to 40 everyone gives up eventually. I have first hand knowledge i have been to the hospitals and homes. She has been bitten and beat up a hundred times by these adorable babies.
No, i think you will find its not a forum of free speech, not on my video anyways. Ild prefer you to keep your opinions to yourself. You clearly have no heart and no you do not have first hand knowledge at all otherwise you would not be saying the things youre saying.
Your comments are completely irrelevant anyway, so after youve read this message, I will be removing your comments and blocking you you inconsiderate moron. Your name says it all.
if your born with any condition causing retardation beyond an acceptable threshold i cant see the logic in existence. These people should be uthenized at early age for their own good and the good of all.
If you, your child or a family member were born with a 'retardation' as you put it, and you still felt that way, then point taken. But until that happens, please dont say things like that on here, there are people that have disabled children that read comments like this on here and lets just say your comment wont make them feel like the best parent in the world.
Im not sure if your comment was suppose to be written in a way that ive read it, but it seem highly innapropriate to me.
You are pretty. I have asperger's, I know what it's like to be treated like a freak, outcast, reject etc. People are just ignorant. This video does a good job at educating the general public about something they may have otherwise criticized or made fun of. Thanks.
Hi 'cometoanend' Im sorry about that ignorant people that have made you feel thast way. You know yourself better than anyone, youre not a freak, an outcast or reject. Im pretty much sure peoples ignorance is much worse than having a disability. :)
you are very lucky...also in financial status..im worried our new baby in the hospital where I am working. He was left by his mother to a stranger.The mother said that she will take a pee.Thus, we found out that he has a bacterial menigitis..His right head is increasing..All staff in the hospital is helping him in his basic needs. He is still waiting for his cranial CT scan..And I dont know how we will fund this baby.
hey my name is evan martinez and i am 15 years old and i too was born with the condition hydrocaphelus when i was born the doctors said that i wouldnt be able to walk talk or even use my hands but thanks to god that im doin everythin that the doctors said i wouldnt do so yea thank you for being brave i would have done the same thing but i havent seen that video yet so yea thanks
you r really brave..keep aspiring..My daughter was born pre mature( 29 weeka) on 24th Nov 09 with severe IVH and hydrocephalus..after a month she is just 1300 gms and can't undergo surgery due to extreme low birth..till now I was concerned of her neurological outcome as well as well being..but now I am deeply motivated with you..thanks and pray for her
Im so sorry to hear about your baby. God bless her. Look she has been going strong for a month now, that shows she is a fighter and she will continue to fight.
You will be amazed how these things can turn around for the best.
Good luck and I will be sure to pray for her, keep me updated :)
@tobybelchy Hi, my name is Alex. I'm 25 years old and I also have hydrocephalus. I've been through four or five surgeries in my life, my last one was back in 2000
How old are you? How long have you been symptom free? Have your doctors actually given you a clean bill of health? I too have had hydrocephalus. I'm 32, I was born with it and i have a shunt in my head. I haven't had any symptoms for about twenty years now, but I will probably always fear a resurgeance. The shunt itself degrades over time. It happened before, when I was eleven. The headaches were excrutiating. I don't have medical insurance so I'm careful to avoid risks.
wow i have a baby with a vp shunt she recently had to have her shunt revised after after having it for a year i never seen someone as old as you with a shunt you have given me lots of hope i wish you well
I met Jade just over a year ago through a bebo page :P but i think she is amazing! and she has helped me so much, she is so brave and has taught me not to be afraid of what people think - because just 14 months ago wouldn't of wrote this comment, because i was ashamed of what people would think, so thankyou for everything Jade (:
I have a VP Shunt for Hydrocephalus aswell - Great Ormond Street, Parrot Ward 1995 - onwards. Thankyou. x
my son will need a shunt and might get it tomorrow. He needs it because of a stroke he had after birth. He has normal pressure in his brain but the ventricles are still enlarging. The other issie is he might get a tempory shunt because there is still blood from the stroke on the brain because that can clog the shunt. What was the reason for your shunt? And anyone else know of a case of getting a tempory shunt?
You seem like a brave, lovely girl. Keep your chin up and ignore those asses. BTW, I think your accent is precious, then again I am a Yank. Good luck to you.
I was thinking of making a video ranting about these ignorant people as well. My little brother had a severe form of hydrocephalus which left him with the mental capacity of around a 4 month old baby. He couldn't walk, talk, eat properly, and as a result of his heavy head and not being able to move around properly, he had severe scoliosis. He died last year at the age of 25. Most people can't even fathom what it would be like to have to deal with these issues so their opinions count 4 shit.
You said everything I wanted to say to those idiots who said all of that stuff. I kept my condition hidden too, until I had a revison, and then no one could say that I was different because they couldn't suspect a thing before. Many thanks for speaking out for us.
I also have IIH and have a vp shunt do you still have headaches at all? How do you know when something is wrong ? Will the symptoms come back? You did a wonderful job on speaking out.
hey. my name is Danny Lamb. I just made a video comment to your video.. but i just wanted to comment as well cuz i hope u will get it. I was diagnosed when I was 3 years old. I'm now 21. I would love to chat more about your story. Watch my video and please please get in touch with me. Your video is an inspiration. good on ya.
Love your work babe.. i have Intracranial Hypertension, similar to Hydrocephlus .. i have just had a VP shunt 6 weeks agi and a shunt revision 3 weeks ago .. i think the more awareness people have about these VERY painful conditions the better ... and people that make negitive comments are just neieve and have no life.. you seam like a bright and very happy young lady .. keep shining your love and energy :)
I was diagnosed with hydrocephalus when I was 2 days old. Had two surgeries at this time because the shunt was rubbing against the bed. Had my first revision when I was 10(1989) and had three more revisions in '08. Thank you for this video. Its good to hear other's people's experiences with this condition. I hope you get to feeling better and I love your accent btw! :)
I'm 33 Weeks Pregnant and the docs are telling me that my baby has Hydrocephalus. I'm scared for her!!! What will she go through? They are telling me she will be Mental.
Hi, im so sorry to hear about your baby, please dont be afraid, doctors have no right to tell you that...they clearly dont know what they are talking about.
If im honest, yes there is a possiblity of it causing such problems, but this is usually when hydrocephalus is very bad, your baby has been spotted with this veryearly on, therefore she can be treated asap. I know many people with this condition who are perfectly normal. Stay positive and i will pray for your baby that she is born perfect :)
My baby girl is 10 now and has always known about her Hydrocephalus and I intend to show her this post to show her that she's not alone and that she can be just like you and be strong and not sorry for herself but proud, happy and beautiful just as you are Thank you.
i agree with ya i have seen comments too and i think it is sick what some ppl can say i mean i have had tons of arguments about what others called me in school names that i dont want to repeat because they did my nut in , in school lol and i bet you probably know that hydrocephalus is more common that down syndrome (see wikipedia) others may not belive me because as you said hydrocephalus isnt a condition like down syndrome that leaves physical attributes
I don't know anyone who has this. i also get strange looks and comments when I mention it. the worst part is having to explain it to people who have no idea what hydrocephalus is... One person once said that if it meant that I also had down syndrome. I cried but got over it. there are so many misinformed people out there.
Sorry to hear about peoples arrogance towards this condition. Makes me angry at times that people cant adjust to what it actually is.
Thats why we need to create more awareness towards hydrocephalus and its research. Far too many people suffer from this, with a little more research who knows...we could be the last generation of sufferers :) Take care.
My prior knowledge of the condition has nothing to do with my amiablity.
Growing up, I lived next to a home called the Abbey. A man there had hydrocephalus, a large head, and mental retardation.
In a highschool reading class I read a story about a mentally retarded kid with hydrocephalus who became a track star.
I was previously aware of hydrocephalus, but not that it exsisted without the symptoms I associate with it. I was merely commenting on what I had learned from watching this.
The insertion of the shunt usually reduces the size of the head of a Hydrocephalus suffer, I should know as I have had it as well as Spina Bifida since birth.
Before you go and make assumptions based on what people tell you anout things such as this, you should take time and study what it is you're commenting on.
So you say you're stronger than anyone else, like anyone with a disability. You also know that, as I have found, that getting people to understand we have a disability can be easier said than done. You mentioned reading from a script instead of memorizing. My memory is crap too.People accuse me of forgetting "on purpose"!! Now, although my wife often says she wishes my memory were better she tries to accept it and our daughter gets in trouble with her if she uses my memory against me.
WOW you have guts showing the world your scars. I really am quite self conscious about myself and despite liking short hair I feel compelled to keep it long enough to cover the bald spots that have developed due to numerous shunt revisions (27 or so at last estimate.)
I really feel deeply sorry for the people with this ilness. I really know how a headache is like in this situation. I had the same thing and I got surgery back in 1999 the one that is known as Bentricle. Thanks God I'm okay know and I wish people with this illness the same.
i have the same thing you got since i was born and i feel you people like to talk alot of crap but they do not know what we ar going througth they will never step in our shoes
I would like to Thank you for mentioning my little Kadyn :-) I just watched your video about your journey. I actually haven't gone through Kadyn's comments in a while because I can't stand how people can be so mean to an innocent child. Thank you so much for this lovely video!
I had a shunt put in at 3 months, it blocked had another one put it and developed meningitis. That shunt lasted until I was 16,(2006) then it disconnected, drs just reconnected it with new tubing, for a year and a half i had constant headaches and head spins. I got another shunt (magnetic) in june 08. It blocked in 3 days and replaced again. Its uncomfortable and nobody understands what it feels like. Thank You for this video you expressed a lot of things that I feel xx
Thank you ive watched a few of kaydens videos hes amazin my baby has hydro ive had the hole alien head wen my baby was 20 days old he had a head of a 7 month old baby n got abit worse before shunt was placed was reasons for this my baby has lots of other problems well done u feel so proud, n yes u were supair just like every hydro and disabled person u have some thing wat makes u extra special take care x
Thank you so much for makin this video! i kno Kayden and his mother, and it hurts me to hear the nasty things ppl say. its just sick! Som ppl talk be4 they kno the facts.
My son was born wit Hydro, he will be 2 in July. i had kno idea what it was be4 him, its scary, but life goes on. and i have one happy adorible little boy who will live a long happy life! i have one video posted on here, if you want to check it out. search 'Zayvier in his walker'.
my daughter has hydrocephalus and had a shunt put in at alder hey childrens hospital in february of this year. she is 7 months old now and the most beautiful girl i've ever seen. you keep ur head up and dont worry about what other people think.
I am absolutely beaming after watching this video, I was born with Hydrocephalus (I am 29) I have been fortune never to suffer or at least allow myself to suffer the abuse you mention I have met alot of people without your strength.
Your attitude is refreshing, you sound too much like I did at that age and still do but it has done me no harm.
Living with Hydrocephalus can be hard at times but with the right spirit and a positive attitude the sun can shine every day.
I'm glad that you made this video. I have hydrocephalus and was diagnosed at birth but shunted at 1. :-) I've had five revisions but have had the same shunt currently for fifteen years! :-)
i love ur British accent(its sexy) and ur so pretty and ur very imformitive....thanks because i was seaching worming(fishing with worms for bass) but i got caught up in worms in the body noton purpose and ran across a video on this disease
hiya hun, thanks so much for your video comment :-) you have been through so much fingers crossed you dont have any more problems with the shunt. josh has been so lucky thank god (touch wood) just ignore them prats that post nasty comments they havent grown up in the real world and one day when they want sympathy if they get any condition what ever it may be they can sod off!! your right kadyn is a sweetie :-) xx
Hey Jade, How are you doing? I've recently had a shunt revision. I've done some videos about it. My operation went ok. I just my hair to grow :( It will...unless I go bald lol. I was really nervous about it, but I'm doing OK so far yay :) Take care. Dylan :)
You are a wonderful girl for making this video. My eight month old daughter was born with hydrocephalus and was shunted at one month of age. I worry so much for her future, but after seeing your video, I feel a little more at ease (still worried though as it is a mother's perogative:) Please keep posting videos telling us how you are doing- as a favor to all us parents who need reassurance about their children's welfare.
I have two close friends that also have hydrocephalus, they too are perfectly healthy, apart from the headaches as you may be familiar with from your daughter.
Having a shunt has never held me back from doing anything, obviously having to be careful not to knock the head.
Good luck to you and your daughter && i wish you all the best =)
ive seen them nasty comments on that harlequin baby too, the baby with red blistered eyes? :( Must be in agony.
...I only have the sacrs on my neck as of last week, i had my VP shunt converted to a VA shunt so they had to slice the neck to pull the tube out and to reinsert it into the jugular vein so the tube can then be passed to inside the heart.
i think its really sick that anyone could write comments like that
i saw this video of this baby with Harlequin Ictiosis which is a rare skin condition and people had wrote comment saying things like benjamin button and alien
I was born with agennisis of the corpus callosum and hydrocephalus whiuch was never shunted but am now having wosening of symptoms.. visual disturbances,dizzyness,headaches and severe change in my personaLity.. from calm to an extremely angry person for no reason. i also sleep ALOT and can't stay awake. balance issues and cordination problems. seeing my nuero the 27th.
grettagrids 2 days ago
i dont have anything wrong in my body but i have a medical problem with my appearence it needs operations too and its just not nice when people comment no matter how bad it is because they just dont understand and they think its not a big deal to them but it really gets to me
FayeLouiseKehoe 3 weeks ago in playlist More videos from tobybelchy
What's the difference between Intracranial Hypertension, Chairi Malformation and Hydrocephalus? I can't tell. I have the Intracranial hypertension, and it's just malabsorption of CSF the squishes your brain. It causes brain damage and blindness. Im almost blind, in my right eye 100% blind and 45% blind in my left. I also have a Crainophyignoma( brain tumor), heart and vessel condition and abdominal tumor. I really don't know the difference between them all ( IH, Hydrocephalus and Chari) its all
Littlebear037 1 month ago
i had hydrocepholus when i was 9 months my hed is bigger than most but fuck all i am a known mc in british girme so duku a hater
MegaJJ1999 2 months ago
i have a hydrocephalus too. i have 39 surgerys so far. im doing awesome.
SeetherChild82 2 months ago
Ello, My name is Safire. My cousin was born with hydrocephalus;he has never really ben able to use his right hand. this video explained it very well xxxxx
TheCheer911 3 months ago
i was born with Hydrocephalus it went away a month i was very lucky. Thanks for making this video and spreading awearness,
juicesnap 4 months ago
I developed hydrocephalus after a bout of meningitis when I was 41 in 1993. Now I'm 59. My condition has been untreated so far but I'm due for shunt surgery in a couple of weeks. It's been a long slow degeneration. It started out as chronic fatigue, headaches, and dizzy spells. Over the years it evolved to continual dizziness, severe gait disturbance, balance problems and mental fog. I'm handicapped now, but if the shunt works as well as the recent lumbar puncture did, I'll be happy.
txsray1 8 months ago
well i am with you the name calling i have a granddaughter that was just born two weeks and five day with Hydrocephalus and her just the sweetd thing ever did see, i love so much still try to get her to eat a full bottle of formal
mountainbreeze73 8 months ago
my boyfriend has hydrocephalus and that is why i was viewing this. you seem to deal with it all very good. he does not. he does not even know i view these things he hits the roof when i do research. i also have an autistic son and i cannot stand when people make fun of others for their disabilities. keep it up you are bringing awareness and that is a great and powerful thing!!!
tmventresca 8 months ago
shit im glad im not the only one with this condition i only got diagonosed with this thing 3 years ago have had issuses ever since had it in my abdomen now have it in my chest down the side of my right lung.hope your doing ok.these people on youtube who have nothing better to do than post negative comments clearly have no lives.so glad to know im not the only one with this hopefully one day there will be a cure for this coz shunts dont always work like there suppose to and its annoying.thanx..
03shuntwoman 9 months ago
shit im glad im not the only one with this condition i only got diagonosed with this thing 3 years ago have had issuses ever since had it in my abdomen now have it in my chest down the side of my right lung.hope your doing ok.these people on youtube who have nothing better to do than post negative comments clearly have no lives.
03shuntwoman 9 months ago
seeing baby kayden gave me the strength 2 keep &raise my baby boy who has savere hydrocephalus by myself im 24 i have 3 children 4,3&lucas with hydro im so happy ther r people like u 2 keep us all goin thankyou x
kayle2686 9 months ago
Hi. My name is Taryn Sarvas. I was also born with Hydrocephalus and I was also diagnosed with a cyst on my brain stem when i was 3 years old. I have had multiple shunt revisions in the past. Recently, in March 2011, I was admitted to the hospital for emergency brain surgery and I ended up having 3 shunt revisions at the time. Before that, in 2005, i had 10 revisions. i suffer with headaches every day.
tsarvas 10 months ago
Honey you are a badass, plain and simple! Bravo on making this video.... as for the few retards who pretend to act like they are better than us, well they probably suffer from a psychiatric disorder! :)
retroshuntwave3141 11 months ago
Keep fighting the good fight! Good video and you are so beatiful and brave, i also have a shunt too
theonering55 11 months ago
You are so beautiful and brave and...everything!
sophie19800703 11 months ago
Hi my name is Jamie, Im 25 years old and in September last year I was diagnosed with Hydrocephalus. For two years prior to being diagnosed I had been suffering with all sorts of problems such as chonic head aches, memory loss, lack of co-ordination and eventually becoming unable to walk. I recieved two operations and have since recovered and returned to work. I hope you are doing well now. People who make fun should really stop and think. Thank you for making this video. I wish you well. x
dyingpassion1 1 year ago
this is what the doctors told me and im walking today as well. God is amazing in mercy and love. You keep shining.
MrYouthpast0r 1 year ago
Thanks for the video. I have a 10/yo daughter that had a ventriculostomy at 17 months. Great to see you are doing so well and you are willing to speak about it.
karriesink 1 year ago
Thank you for posting this video. I have Hydrocephalus myself and because of that I have been in Special Education for 4 years. I am not mentally challenged however I need help staying organized. I however do not have a shunt. I know what these headaches are like sometimes they develope into migranes. So next time anyone fells like making fun of someone with a disablity, I say look at yourselves and you make yourselves fell good. You have demoralized yourself. Thank you so much for posting this.
huntermissesmama 1 year ago
Hi, thankyou for your video, i have just found out my daughter has Hydrocephalus, it helps to know what to expect. Your a brave girl, love n best wishes.
MsParis03 1 year ago
I've had hydrocephalus since 1993 but to date have no shunt. Pressure goes up and down but over time always up. It'll kill me eventually. I can barely walk now and it's hard to focus on the screen because of pressure on the optic nerve. All sorts of other complications too. Eternal headache.
Txsray 1 year ago
Hey my name is george and i am 16. I appreciate you for making this video. I have Dandy walker syndrome and Hydrocephalus. Last year I had eight brain surgeries and almost died in the hospital. My doctor is Ben Carson. The unique thing is that I have an identical twin who wasnt born with the condition. The last two surgeries I have had lately were on my birthday. Im doing so much better now and Im very happy. Thank you very much.
Bassplayer600 1 year ago
Hello Toby! How are you? My name is Greg and I'm 23. I very much enjoyed watching your video. i too am a shunt sufferer/hydrocephalus survivor since birth. I look forward to your next video. Keep up the good work and keep well.
smithers668 1 year ago
As a person who once had a severe case of Hydrocephalus, I feel happy knowing that a lot people out there actually respect us and feel angry toward those who speak offensively toward us
sadlobster1 1 year ago
I think its a fine accent!!!
I have had this thing since 83 two revisions, each time had different symptoms.
thinkin it might be time for another.......
my main complaint is I have to stay away from things like roller coasters, and hi-G activities.....
I always make up interesting stories when people ask about those scars!!!!!!!
Im thinkin you are rockin cool!!
peace to you
G
gvchenault 1 year ago
You are awesome keep it up :).
AidanChaos 1 year ago
I am hydrochephalic and this video has made me feel a lot better about my self, so thankyou :)
MsHolli09 1 year ago
I appreciate your rant. I personally have had some of those nasty comments on videos about my son. It is really just heartbreaking that there are jerks like that out there that feel the need to talk badly about people with hydrocephalus.
snave29 1 year ago
Well, as someone who's been shunted since 1967 I can say without reservation that , YES, it does make us superior! :-) Thank you for posting this video. I haven't encountered the problems you describe from other people but I am deaf in one ear and have some short term memory and attention problems. But beyond that I've run marathons and endured pain that other people couldn't even imagine. And no, my parents are from Belfast, so I understood you perfectly!
wabbles2006 1 year ago
As a former hydrocephalic baby I support you. Thank you for this video. Don't listen to the haters.
pete5668 1 year ago
People can be mean. But what goes around comes around
Opraaaah 1 year ago
Hello my son has Hydrocephalus and I wanted to say I am so happy to see your video, I love my son Malachi so much, and he is doing so well, he is responding very well to things and so far developing normally. I just get so scared sometimes. He is still in the hospital and is 3 months old. I am going to upload a video of him shortly.Thank you so much for your heart and may God bless you.
8106Coloradorockies 1 year ago
question, how could someone lose hydrocephalus? from my understanding, it is a life long thing. I have it. (no major complications SINCE about the age of 7, Im 21 in 3 weeks) but yeah. Stay strong Girl, And never give up!
jeffmcaraturnbull 1 year ago
Keep up the good fight! You're great! My VA is a bit different from yours. The distal end of mine empties into my jugular vein. Anyway, thanks for sharing your story and for promoting acceptance and awareness of people with hydrocephalus.
Diffie64 1 year ago
can't understand a word your saying but ill put it in your butt, BING HOLD THAT!
glassbowls 1 year ago
Enjoyed the video......the migraines are horrific but i suppose we grow stronger through adversity......
Njosnavelin78YT 1 year ago
You Looks normal & you are normal just like us ,so be happy all the time.
armani9300 1 year ago
How are you doing? Would you please post an updated video. thanks ..cheers!
stavrophotography 2 years ago
People are so ignorant!! I have hydrocephalus too, and I was teased and treated like a freak all throughout elementary school, and for a while during middle school too. I deal with the symptoms you described (especially headache and nausea) day in and day out, and my condition has been exacerbated by a car accident I was in two and a half years ago. My family is very supportive of the different foundations that benefit people with hydrocephalus. Thanks for uploading this!
DrEaMsOfAnOvEl 2 years ago 2
yep, Ive had a shunt for 16 years, Im 17. And when I explain to people at school the reason why I cant play football. They say, "Ben, you are a freak, you have a plastic tube in your brain". Some even think that my shunt is a metal plate. I sure hope I dont have to have an extension. Ive been very lucky to not need a single surgery since my shunt was inserted, but Im very scared for the possibility of extension surgery.
coastermusic93 1 year ago
@coastermusic93
Nothing to worry about, bro!! I've had a couple revisions, one being an extension. Easy as pie. God bless you on your journey through life.
BigSwitz98 5 months ago
your really pretty.
MrBucket0fries 2 years ago
In regards to your message, youtube is a forum of freespeech, if you cant stomach it then dont step up in here. As for family reading what i say. The onus is on any parent to let their minor on here they should know what goes on here.
my mom takes care of all those adorable retarded babies when they get to 40 everyone gives up eventually. I have first hand knowledge i have been to the hospitals and homes. She has been bitten and beat up a hundred times by these adorable babies.
mrfukbag 2 years ago
No, i think you will find its not a forum of free speech, not on my video anyways. Ild prefer you to keep your opinions to yourself. You clearly have no heart and no you do not have first hand knowledge at all otherwise you would not be saying the things youre saying.
Your comments are completely irrelevant anyway, so after youve read this message, I will be removing your comments and blocking you you inconsiderate moron. Your name says it all.
tobybelchy 2 years ago
if your born with any condition causing retardation beyond an acceptable threshold i cant see the logic in existence. These people should be uthenized at early age for their own good and the good of all.
mrfukbag 2 years ago
If you, your child or a family member were born with a 'retardation' as you put it, and you still felt that way, then point taken. But until that happens, please dont say things like that on here, there are people that have disabled children that read comments like this on here and lets just say your comment wont make them feel like the best parent in the world.
Im not sure if your comment was suppose to be written in a way that ive read it, but it seem highly innapropriate to me.
tobybelchy 2 years ago
@mrfukbag It's too bad that people feel the need to make comments such as the one you have made.
pete5668 1 year ago
You are pretty. I have asperger's, I know what it's like to be treated like a freak, outcast, reject etc. People are just ignorant. This video does a good job at educating the general public about something they may have otherwise criticized or made fun of. Thanks.
cometoanend 2 years ago
Hi 'cometoanend' Im sorry about that ignorant people that have made you feel thast way. You know yourself better than anyone, youre not a freak, an outcast or reject. Im pretty much sure peoples ignorance is much worse than having a disability. :)
tobybelchy 2 years ago
you are very lucky...also in financial status..im worried our new baby in the hospital where I am working. He was left by his mother to a stranger.The mother said that she will take a pee.Thus, we found out that he has a bacterial menigitis..His right head is increasing..All staff in the hospital is helping him in his basic needs. He is still waiting for his cranial CT scan..And I dont know how we will fund this baby.
janeichi 2 years ago
hey my name is evan martinez and i am 15 years old and i too was born with the condition hydrocaphelus when i was born the doctors said that i wouldnt be able to walk talk or even use my hands but thanks to god that im doin everythin that the doctors said i wouldnt do so yea thank you for being brave i would have done the same thing but i havent seen that video yet so yea thanks
pitobass1 2 years ago
Hi Evan,
you see, doctors prognosis' dont predict your future, i wish other people would realise that.
Thats great to hear, good luck in your future evan and thank for commenting :)
tobybelchy 2 years ago
Comment removed
pitobass1 2 years ago
you r really brave..keep aspiring..My daughter was born pre mature( 29 weeka) on 24th Nov 09 with severe IVH and hydrocephalus..after a month she is just 1300 gms and can't undergo surgery due to extreme low birth..till now I was concerned of her neurological outcome as well as well being..but now I am deeply motivated with you..thanks and pray for her
basant1979 2 years ago
Hi 'Basant1979'
Im so sorry to hear about your baby. God bless her. Look she has been going strong for a month now, that shows she is a fighter and she will continue to fight.
You will be amazed how these things can turn around for the best.
Good luck and I will be sure to pray for her, keep me updated :)
tobybelchy 2 years ago
I was born with hydrocephalus. I am no longer hydrocephalic.
But I understand your story and know what you're going through. If you need to "talk". I'm here. .God bless
stavrophotography 2 years ago
Hi 'Stavro...'
Wow, thats great to hear that you are no longer hydrocephalic. I bet it feels great :)
Thanks for commenting, its gives parents and hydrocephalics hope that it doesnt have to last forever. :)
tobybelchy 2 years ago
@tobybelchy Hi, my name is Alex. I'm 25 years old and I also have hydrocephalus. I've been through four or five surgeries in my life, my last one was back in 2000
sadlobster1 1 year ago
@stavrophotography
How old are you? How long have you been symptom free? Have your doctors actually given you a clean bill of health? I too have had hydrocephalus. I'm 32, I was born with it and i have a shunt in my head. I haven't had any symptoms for about twenty years now, but I will probably always fear a resurgeance. The shunt itself degrades over time. It happened before, when I was eleven. The headaches were excrutiating. I don't have medical insurance so I'm careful to avoid risks.
bratton79 5 months ago
wow i have a baby with a vp shunt she recently had to have her shunt revised after after having it for a year i never seen someone as old as you with a shunt you have given me lots of hope i wish you well
JENNIFERROCKS154 2 years ago
BRAVO!!!!
I admire your tenacity, intelligence and grace in the face of mediocre minds. You are an inspiration and I thank you for posting your journey.
fromla2bklyn 2 years ago
SO you are saying that kid is like some sort of marine mammal water dweller of some sort
comptim 2 years ago
Erm, what?
tobybelchy 2 years ago
Well Done Jade (: xx
I met Jade just over a year ago through a bebo page :P but i think she is amazing! and she has helped me so much, she is so brave and has taught me not to be afraid of what people think - because just 14 months ago wouldn't of wrote this comment, because i was ashamed of what people would think, so thankyou for everything Jade (:
I have a VP Shunt for Hydrocephalus aswell - Great Ormond Street, Parrot Ward 1995 - onwards. Thankyou. x
xDreamz94 2 years ago
Comment removed
xDreamz94 2 years ago
my son will need a shunt and might get it tomorrow. He needs it because of a stroke he had after birth. He has normal pressure in his brain but the ventricles are still enlarging. The other issie is he might get a tempory shunt because there is still blood from the stroke on the brain because that can clog the shunt. What was the reason for your shunt? And anyone else know of a case of getting a tempory shunt?
dakellsta69 2 years ago
Thanks
Gummid777 2 years ago
You seem like a brave, lovely girl. Keep your chin up and ignore those asses. BTW, I think your accent is precious, then again I am a Yank. Good luck to you.
PhannyBananny 2 years ago
I was thinking of making a video ranting about these ignorant people as well. My little brother had a severe form of hydrocephalus which left him with the mental capacity of around a 4 month old baby. He couldn't walk, talk, eat properly, and as a result of his heavy head and not being able to move around properly, he had severe scoliosis. He died last year at the age of 25. Most people can't even fathom what it would be like to have to deal with these issues so their opinions count 4 shit.
PhannyBananny 2 years ago
You said everything I wanted to say to those idiots who said all of that stuff. I kept my condition hidden too, until I had a revison, and then no one could say that I was different because they couldn't suspect a thing before. Many thanks for speaking out for us.
Sammypoo8005 2 years ago
I also have IIH and have a vp shunt do you still have headaches at all? How do you know when something is wrong ? Will the symptoms come back? You did a wonderful job on speaking out.
patricia55901 2 years ago
hey. my name is Danny Lamb. I just made a video comment to your video.. but i just wanted to comment as well cuz i hope u will get it. I was diagnosed when I was 3 years old. I'm now 21. I would love to chat more about your story. Watch my video and please please get in touch with me. Your video is an inspiration. good on ya.
Danny
dklamb 2 years ago
Love your work babe.. i have Intracranial Hypertension, similar to Hydrocephlus .. i have just had a VP shunt 6 weeks agi and a shunt revision 3 weeks ago .. i think the more awareness people have about these VERY painful conditions the better ... and people that make negitive comments are just neieve and have no life.. you seam like a bright and very happy young lady .. keep shining your love and energy :)
nikkiblu78 2 years ago
I was diagnosed with hydrocephalus when I was 2 days old. Had two surgeries at this time because the shunt was rubbing against the bed. Had my first revision when I was 10(1989) and had three more revisions in '08. Thank you for this video. Its good to hear other's people's experiences with this condition. I hope you get to feeling better and I love your accent btw! :)
Trish USA (Iowa)
bonesgirl1978 2 years ago
if u want to talk feel free i have hydrocephalus too
titaniumtori 2 years ago
I'm 33 Weeks Pregnant and the docs are telling me that my baby has Hydrocephalus. I'm scared for her!!! What will she go through? They are telling me she will be Mental.
IcyGirl1982 2 years ago
Hi, im so sorry to hear about your baby, please dont be afraid, doctors have no right to tell you that...they clearly dont know what they are talking about.
If im honest, yes there is a possiblity of it causing such problems, but this is usually when hydrocephalus is very bad, your baby has been spotted with this veryearly on, therefore she can be treated asap. I know many people with this condition who are perfectly normal. Stay positive and i will pray for your baby that she is born perfect :)
tobybelchy 2 years ago
My baby girl is 10 now and has always known about her Hydrocephalus and I intend to show her this post to show her that she's not alone and that she can be just like you and be strong and not sorry for herself but proud, happy and beautiful just as you are Thank you.
brizziegirl09 2 years ago
i agree with ya i have seen comments too and i think it is sick what some ppl can say i mean i have had tons of arguments about what others called me in school names that i dont want to repeat because they did my nut in , in school lol and i bet you probably know that hydrocephalus is more common that down syndrome (see wikipedia) others may not belive me because as you said hydrocephalus isnt a condition like down syndrome that leaves physical attributes
lonesnipe 2 years ago
damn u r beautiful! im from LA baby! and ive never seen n e like u.
tehnco 2 years ago
I don't know anyone who has this. i also get strange looks and comments when I mention it. the worst part is having to explain it to people who have no idea what hydrocephalus is... One person once said that if it meant that I also had down syndrome. I cried but got over it. there are so many misinformed people out there.
bluechica009 2 years ago
Hi,
Sorry to hear about peoples arrogance towards this condition. Makes me angry at times that people cant adjust to what it actually is.
Thats why we need to create more awareness towards hydrocephalus and its research. Far too many people suffer from this, with a little more research who knows...we could be the last generation of sufferers :) Take care.
tobybelchy 2 years ago
Yea.. Lets Hope There something That can Be done about This Curse.. if Not we Are go Insane!! Thats always fun haha!
dayofthedead55 2 years ago
Jade- hey it's Laura.
It's interesting to see what you can find when looking on Youtube.
thanks for posting the video- means alot <3
musicxhappens 2 years ago
I have hydrocephalus and Macjima doesn't hurt my feelings lol im a badass
JHO71Nova 2 years ago
Macjima quit being ignorant.
TAquino11 2 years ago
I've had my shunt in since I was 2 and I'm 19 now. I never had to have any other surgeries for it. Just a CT scan and check up with my Doc
TAquino11 2 years ago
if u thought that macjima then ur a JERK!!
Em1594 2 years ago
My prior knowledge of the condition has nothing to do with my amiablity.
Growing up, I lived next to a home called the Abbey. A man there had hydrocephalus, a large head, and mental retardation.
In a highschool reading class I read a story about a mentally retarded kid with hydrocephalus who became a track star.
I was previously aware of hydrocephalus, but not that it exsisted without the symptoms I associate with it. I was merely commenting on what I had learned from watching this.
Macjima 2 years ago
I thought everyone with hydrocephalus was also mentally retarded and had a big head
Macjima 2 years ago
The insertion of the shunt usually reduces the size of the head of a Hydrocephalus suffer, I should know as I have had it as well as Spina Bifida since birth.
Before you go and make assumptions based on what people tell you anout things such as this, you should take time and study what it is you're commenting on.
metallic1981 2 years ago
that would Be me!1 am Retarded and have a Big head people just knows Me as Freak and whats That!! lol Really
dayofthedead55 2 years ago
So you say you're stronger than anyone else, like anyone with a disability. You also know that, as I have found, that getting people to understand we have a disability can be easier said than done. You mentioned reading from a script instead of memorizing. My memory is crap too.People accuse me of forgetting "on purpose"!! Now, although my wife often says she wishes my memory were better she tries to accept it and our daughter gets in trouble with her if she uses my memory against me.
UglySean 2 years ago
WOW you have guts showing the world your scars. I really am quite self conscious about myself and despite liking short hair I feel compelled to keep it long enough to cover the bald spots that have developed due to numerous shunt revisions (27 or so at last estimate.)
UglySean 2 years ago
I really feel deeply sorry for the people with this ilness. I really know how a headache is like in this situation. I had the same thing and I got surgery back in 1999 the one that is known as Bentricle. Thanks God I'm okay know and I wish people with this illness the same.
gualluyo 2 years ago
i have the same thing you got since i was born and i feel you people like to talk alot of crap but they do not know what we ar going througth they will never step in our shoes
pitobass1 2 years ago
I would like to Thank you for mentioning my little Kadyn :-) I just watched your video about your journey. I actually haven't gone through Kadyn's comments in a while because I can't stand how people can be so mean to an innocent child. Thank you so much for this lovely video!
kadynsmommy07 2 years ago
I had a shunt put in at 3 months, it blocked had another one put it and developed meningitis. That shunt lasted until I was 16,(2006) then it disconnected, drs just reconnected it with new tubing, for a year and a half i had constant headaches and head spins. I got another shunt (magnetic) in june 08. It blocked in 3 days and replaced again. Its uncomfortable and nobody understands what it feels like. Thank You for this video you expressed a lot of things that I feel xx
lovesjellybeans 2 years ago
Comment removed
narell3 2 years ago
Thanks! I had a shunt placed at 3 weeks old. I'm now 42. I was 6 weeks early. If my Mom had gone full term, I would not have survived.
katslulu 2 years ago
Thank you ive watched a few of kaydens videos hes amazin my baby has hydro ive had the hole alien head wen my baby was 20 days old he had a head of a 7 month old baby n got abit worse before shunt was placed was reasons for this my baby has lots of other problems well done u feel so proud, n yes u were supair just like every hydro and disabled person u have some thing wat makes u extra special take care x
izncharliesmummy 2 years ago
Thank you for speaking about this.
model4cakes 2 years ago
hello hun!
Thank you so much for makin this video! i kno Kayden and his mother, and it hurts me to hear the nasty things ppl say. its just sick! Som ppl talk be4 they kno the facts.
My son was born wit Hydro, he will be 2 in July. i had kno idea what it was be4 him, its scary, but life goes on. and i have one happy adorible little boy who will live a long happy life! i have one video posted on here, if you want to check it out. search 'Zayvier in his walker'.
Ashley71107 2 years ago
my daughter has hydrocephalus and had a shunt put in at alder hey childrens hospital in february of this year. she is 7 months old now and the most beautiful girl i've ever seen. you keep ur head up and dont worry about what other people think.
1983stu54 2 years ago
I am absolutely beaming after watching this video, I was born with Hydrocephalus (I am 29) I have been fortune never to suffer or at least allow myself to suffer the abuse you mention I have met alot of people without your strength.
Your attitude is refreshing, you sound too much like I did at that age and still do but it has done me no harm.
Living with Hydrocephalus can be hard at times but with the right spirit and a positive attitude the sun can shine every day.
Take care
Darren
maddazzler 2 years ago
I am happy you made this . i have hydrocephalus and was admitted to bristol age five.
thank you for making this.
i dont think people should say horrible things like that.
abithagail 2 years ago
I'm glad that you made this video. I have hydrocephalus and was diagnosed at birth but shunted at 1. :-) I've had five revisions but have had the same shunt currently for fifteen years! :-)
Go hydro babies
Beautifulpoet12 2 years ago
, you got some positive force in ya. you should go into politics. I have never been so taken back by a vlog.
and that superiority point was really enlightening, girl you make me feel like a lil' bitch about the things I moan about.
Good bless and take care.
Seriously I talk some amount of shit to some amount of people but I never came across a strong positive attitude like yours.
I think you snapped me out of the fog.
jesus i'm going to be thinking about what you said all week.
Teitusmusic 2 years ago
i love ur British accent(its sexy) and ur so pretty and ur very imformitive....thanks because i was seaching worming(fishing with worms for bass) but i got caught up in worms in the body noton purpose and ran across a video on this disease
xXcam0manXx 2 years ago
grow up.
as for 'retard' speak for yourself.
tobybelchy 2 years ago
hiya hun, thanks so much for your video comment :-) you have been through so much fingers crossed you dont have any more problems with the shunt. josh has been so lucky thank god (touch wood) just ignore them prats that post nasty comments they havent grown up in the real world and one day when they want sympathy if they get any condition what ever it may be they can sod off!! your right kadyn is a sweetie :-) xx
shelldanielle 2 years ago
ooo so that is what that baby with the red eyes and yellow skin has thought it was something to do with uranium
sioc88 2 years ago
Hey Jade, How are you doing? I've recently had a shunt revision. I've done some videos about it. My operation went ok. I just my hair to grow :( It will...unless I go bald lol. I was really nervous about it, but I'm doing OK so far yay :) Take care. Dylan :)
dylandior123 2 years ago
by the way, thank you for your comment on my video!
your the inspiration!
and yes we who have disabilities are alot more stronger than a normal person!
and good luck for the future!
your doing well :)
thank you so much
write back?
xxxxxxxxxxxxxxxxxxxxxx
VideoCrazyBaby 3 years ago
You are a wonderful girl for making this video. My eight month old daughter was born with hydrocephalus and was shunted at one month of age. I worry so much for her future, but after seeing your video, I feel a little more at ease (still worried though as it is a mother's perogative:) Please keep posting videos telling us how you are doing- as a favor to all us parents who need reassurance about their children's welfare.
GNPspeechpath 3 years ago
Hi there,
I have two close friends that also have hydrocephalus, they too are perfectly healthy, apart from the headaches as you may be familiar with from your daughter.
Having a shunt has never held me back from doing anything, obviously having to be careful not to knock the head.
Good luck to you and your daughter && i wish you all the best =)
tobybelchy 3 years ago
ive seen them nasty comments on that harlequin baby too, the baby with red blistered eyes? :( Must be in agony.
...I only have the sacrs on my neck as of last week, i had my VP shunt converted to a VA shunt so they had to slice the neck to pull the tube out and to reinsert it into the jugular vein so the tube can then be passed to inside the heart.
tobybelchy 3 years ago
i dont have the scars on my neck like you do..i wish i did i like to show them off
kornkid723 3 years ago
good on you
i think its really sick that anyone could write comments like that
i saw this video of this baby with Harlequin Ictiosis which is a rare skin condition and people had wrote comment saying things like benjamin button and alien
its proper sick!
xxshawtiiexx 3 years ago