I don't know how I got here, but I guess they're similar. I have Chronic Intracranial Hypertension, a Craniophyignoma (brain tumor), Disautonomia, a heart condition, abdominal tumor and am going blind with Papilladema and Drusen. I'm getting the ICP monitoring soon and a Fenestration surgery and either a VP, LP shunt or decompression. Brain pressure sucks, I've had like 4 seizures from it.
I too have hydrocephalus. I've had three for sure revision surgeries, the last in 1983. And about 20 years ago I had two seizures out of the blue but since I've more or less fine. I'40 now and so keep on going. I had mine put in back when hydrocephalus surgery was sill in its infant stage yet.
I've had hydrocephalus, I'm 14 now... But there's one image that has been engraved in my mind, probably forever. It was when I was only a few days old, when I was going into surgery for it... I can remember seeing my dad looking down at me, and I was in a cot...(crib) and then I looked down at my medical band thing, it was on my left hand I think.... :D
Im 28 and I've had only 1 shunt revision when I was 14 because I outgrew it. I also have agenesis of the corpus callosum, my right side is mildly disordered, a seizure disorder, and type 1 diabetes. The corpus callosum is the largest white-matter structure in the brain — connects the left and right hemispheres well I was born without it.
I write this as I sit on the waiting after my son just had he's second shunt revision (surgery) your a great inspiration keep your head up and thanks for posting this great video.
Iv had a shunt since I was 11, im now 22 and I havent had any problems yet..however iv booked an appointment with my neurosurgeon on Tuesday because of persistent pressure and headaches :-/ hope its all ok. Glad to see your coping with the shunt now and you have plenty support x :-)
What a remarkable story, and doctors. It's amazing what they can do to save a life! You seem to have such a positive outlook on life, I love it, you're inspirational!
I don't wish this condition on anybody, but it's nice to find others who have it and see their stories. I've lived with it for almost 32 years now, and I've been lucky to only have three surgeries--the original when I was 8 months old, and two revisions. Had my last surgery on New Year's Eve 2001.
May you be blessed with good health and a long and happy life!!!
Hey, well by having the tube drain into your abdomen, it means it can be 'dissolved' into the blood stream efficiently. My tube now leads to my heart so it get rid of the fluid that way instead.
Fluid is constantly being produced, amount varies form person to person but I know with me the fluid on my brain will produce a litre within 2 days- so would be a bit hard to drain it off all the time :)
Great vid. I went through the same stuff when I was born. I was born May 26th '91. I still have my shunt had it revised 3-4 times when I was little and I also have the scar from insertion on my stomach. It's really neat to know there's more ppl out there that have gone through what I went through. :)
I have a 14yo son who had his shunt put in when he was 12. I was doing research on the web bc hes been getting terrible headaches.. We have done testing and more to come. Im so glad I came across this video and was able to view your journey of it.. Gives me hope he will be okay. Thank you for posting this.
That was a great video. I also have hydrocephalus. I had my first shunt put In At 6 months and since then I've had around 20 surgeries. My last 5 were 3 months ago on my 18th bday. After everything you've gone thru u still look great. I'm glad to see your doing better
well my baby is 15 months but she is not standing properly im worried she also has a vp shunt .. though she is very active but is not willing to stand up n walk... does shunt have any connection with the delay?
I am 26 years old. Was born with Spina Bifida and Hydrocephalus. Had my first shunt put in when I was a few days old. That lasted me the first 13 years of my life. My second shunt has lasted me the last 13 years! I consider myself very lucky in that regard! I had minor problems for a little while after my first shunt was replaced, but i've been ok ever since. I was diagnosed with Slit Ventrical Syndrome. Had symptoms similar to a blocked shunt, but it wasn't that. THANKFULLY!
My baby has hydrocephalus due to prematurity and a grade 4 brain bleed. She is 13 months old now (5 shunt revisions due to malfunction/ infections) and I have to say that your video has been an inspiration to me.
i too,wwaer "battle scars" with pride. You are beautiful,never let anyone's closed minded thinking change that! God has us her for a reason,and we are truly blessed! I have had my shunt for almost 36 years with only 1 revision in 1988. No major complications,thank God! I have even been able to take Karate classes with some modications,of course. Just know you are not alone! If you ever need to talk,email me at jlh135@yahoo,com! <3
I have hydrocephalus too, and it is a comfort to find although i feel like it sometimes, i'm not the only person in the world to go through this. Thankyou for this video =)
Lemar is a famous basketball player. I have a picture of me and Johnathon Brandis. I don't think anyone EVER made the mistake of thinking we were DATING!
nice video . I have had 11 of these surgeries .Its a shame that anyone has to go through these surgeries. ,but its nice to know i am not alone AND STILL ALIVE .....THANKS FOR POSTING
You are an inspiration to all of us hydrocepalics. How are you doing lately? I've been in and out of the hospital over the last two months after having two more revisions (yay, this maks a total of 7 since I was 10 and I'm 32 now but I beleive you have me beat). Hope you are well. Feel free to email mee if youd like I'll private message you my email address if that's ok with you?
Be blessed in the rest of your life! I'm rooting for you cause your story hits home! My son was born with hydrocephelus mild so he didn't need shunts but he has some learning difficulties! You gave me inspiration from your video! God bless you!
@tobybelchy This is CRAZY! I didnt get from the vid that she was dating a colored guy..but if she was how could you even THINK to state that??? Where do judgemental ppl like you get off? Why would she be ASHAMED? What does a person's SKIN COLOR have to do with who they are as individuals..unbelievable...just unbelievable....
@JesusChristRulesYOU ..... if Jesus Christ really rules you, you wouldn't say anything like this .coz he died for everyone ,white and colored . so stop speaking like an idiot
@JesusChristRulesYOU I will say that i disagree on the point of view where it is only the color of their skin that matters... but honestly it does bother me to see a pretty white girl with a gangbanger wannabe ghetto black kid... bothers me just as much with a wannabe gangbanger white kid, but at least everyone knows the white kid is a fool
@JesusChristRulesYOU people like you make me sick. What is wrong with dating someone of a different colour. If anyone here is going to be ashamed of themselves it should be you. You disgust me and by the looks of the other comments towards your ridiculous statement you discust them too. Go crawl back into the hole that you adopted these medevil ideals and stay there until you buck your damn ideas up.
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
Thank you for this video. I have just been diagnosed with NPHydrocephalus. I don't know yet what I will be experiencing in the near future. Your video gives me lots of insight and build courage.
I am 22 years old and 3 weeks ago (October 24th---my 22nd birthday!) I went into the doctors thinking I had the flu because I had the worst headache of my life & I started throwing up. It ended up being Hydrocephalus---I had an emergency brain surgery on my birthday by having a drain put in and then two days later the neurosurgeon put the VP shunt in me. I haven't had any problems besides some pain in my head & stomach. Thank you for posting this! I am sorry you had to go through all of that.
I am 19 years old and 3 years ago I was diagnosed with hydrocephalus aqueductal stenosis. I have yet to get a shunt and constantly have aggravating headaches. I wish they would put a shunt in, as I can't live my life how i used to. I had a scholarship to play college hockey in the states and I have not been able to play hockey now for 3 years. I used to box in Alberta and have yet to put on another pair of gloves since. It has affected my life incredibly. I feel what you are going through, but
hey want to hear my journey ok here it begins i had Hydrocephalus we went to church and god blessed me i went back to the hospital and it was gone end of stroy.
My son who is 28 has gone through shunt revision surgery 8 times in the past year and a half, we are now going to look into having a ventriculostomy done so he will not need a shunt ever again. Thank you for sharing your story. God Bless You.
Hey!..I've never actully heard of anyone else having a cyst cause hydrocephalus. The doctors alway told me it was extremely rare!! Anyway my story is basically the same as yours. I had the shunt when i was 4 due to the cyst causing hydr... Now i am 16 an all of a sudden my head has gotten v.sore around the shunt and in my abdomin where it ends. I was in hospital a month ago with it and turns out i dont need it anymore. So what made you get it out?? where you finished school at the time? Thanks.x
Hi! I just turned 24 in april. Last month i found out i have Hydrocephalus. Went thru surgery at st.lukes milwaukee and got a programable shunt put in. My question is that is it normal for someone at my age have Hydrocephalus out of the blue?? Not 1 single person in my family ever had Hydrocephalus and growing up i never did either. So how come at age 24??
@Usmobil hi----i am 22 years old (as of the day I had a drain put in my head in October) & it happened out of the blue to me!! I was questioning the same thing....but the neurosurgeon told me that I could have had it since a baby and never got diagnosed because I've never had a cat scan before. He said for some "unknown" reason it happened. My question is how soon after you got your programmable shunt put in did you return to activities? Like work/exercise/drinking?
Hey jade. My name is george and i have dandy walker syndrome and hydrocephalus. I have had eight surgeries in the last year and the last two were on my birthday. What is unique is i have an identical twin brother who was not and does not have the dandy walker syndrome and hydrocephalus. That is eight is the last year alone... i have had many other surgeries. Thank you for posting this video it helped me a lot. Last year i almost died in the Johns Hopkins Hospital. Ben Carson is my neurosurgeon.
It is amazing what some people have to deal with in life. You never know what hand you are going to be dealt. You are a brave young woman. I wish you all the best in life! :-)
Hey jade. My name is george and i have dandy walker syndrome and hydrocephalus. I have had eight surgeries in the last year and the last two were on my birthday. What is unique is i have an identical twin brother who was not and does not have the dandy walker syndrome and hydrocephalus. That is eight is the last year alone... i have had many other surgeries. Thank you for posting this video it helped me a lot. Last year i almost died in the Johns Hopkins Hospital. Ben Carson is my neurosurgeon..
I have also had a shunt since I was 3 months old. I am 51 years old now and still have the original shunt. No complications and I lead a normal life. My surgery was performed at the University of Iowa. I consider myself very fortunate.
I have had a shunt since I was 3 months old and I have had it for 24 years now I didnt get a shunt for the same reasons though I had too much pressure on my brain so thats why I got one
I would love it if you were able to someohow tell me more about your journey. My sister has brain damage due to other complication and idiot doctors back in the day. They induced Mum's labor sayng she was having a big baby. She ended up having twins. She can't articulate how she feels all the time and lives with daily migraines. What can you tell me so I can help her? Thanks so much and thanks for sharing your journey :-)
tobybelchy My sister has hydrocephalus. She's a miracle baby. She is now 32. God is sooo good. She goes to John Hopkins University Hospital in Baltimore, Maryland. Its one of the world's best hospitals for treating hydrocephalus. They specialize in hydro and are known for their renowed hydrocephalus center. Docter Riggamonte is my sisters doctor. My mother researches the top doctors in teh world and he is one of them!! God bless you!
I dont know if you are still checking this video for comments but I was wondering if you wouldnt mind chatting with me a bit about your VP Shunt. I just recently (2 months ago) had a VP Shunt placed and Im kind of wondering whats next. I also have been having what seems to be the same abdominal pain that you experienced. I would love to talk to you about this if you wouldnt mind. My email address is cstrick0317@hotmail.com and my name is Colby. Thank you for your time.
I dont know if you are still checking this video for comments but I was wondering if you wouldnt mind chatting with me a bit about your VP Shunt. I just recently (2 months ago) had a VP Shunt placed and Im kind of wondering whats next. I also have been having what seems to be the same abdominal pain that you experienced. I would love to talk to you about this if you wouldnt mind. My email address is cstrick0317@hotmail.com and my name is Colby. Thank you for your time.
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
This is a great video. I know someone with the same issues I at first did not know if she just need extra help in school. She tilts her head to the side when she walks not sure if all people affected by the disease do that. I hope everything is going well with you. Nice to her some share there story to educate others about diseases you do not here about often. It sucks when your life is hospital stays after hospital stays but on the bright side if the doctors make you better its worth it.
Is your shunt adjustable? As in, being able to adjust the amount of flow? Have you ever experience massive headaches when you lay down flat, like in bed? If so, when you sit up, and it starts to drain again, do you hear a clicking noise? My wife had the same problems like yourself. Her VP shunt started failing with the abdomen fluid build up. Then, had it converted to a VA. Her last revision last 27 years!
My niece had to have her shunt changed a year ago... But like you it does not stop her doing anything life... I wish you well... And THANK GOD for G.O.S.H.. she has also been treated there since she was a baby...
I know how you feel i was born with hydrocephalus and its been a long journey for me as well but the advice i can give to you is don't give up i went to my Neurosurgeon and he told the most amazing news that my shunt is functioning well and that i will not have to see him anymore unless something goes wrong keep fighting though Be Strong I am always here to talk to anybody that is struggling or having a hard time btw im only 16
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
@joaoa13portugal Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Thank you for sharing that. My 12 yr old son, Matthew is going thru this now. I am trying to learn as much as I can, He is Autistic as well and can not speak. The things he's feeling, he can't tell anyone. We have been in the Hospital over two months now trying to find it's cause. We are down to deciding between the lumbar shunt or the vp.. Have you had both?
Do u have an email adress I can write at , I have a 11yr old girl and she has Hydrocephalus it would be nice if u meet her it will make her happy theres more to tell if u would like to write me at silvia.gop@hotmail.com
Hi I'm Hollie I was born at 27 weeks had my first shunt placed when I was 30 weeks old I'm 13 and have had 22 hospital stays all over 2 weeks and 17 surgeries I know what you go thru
Hi. I just wanted to say thanks for sharing your story. My daughter has hydrocephalus since birth. She had her shunt inserted when she was 5 weeks old. She is now 6 coming up 7 in November and so far she has had no problems wit her shunt. We recently had a slight scare with it but that was nothing. What else has attracted me to your story is that she also has an arachnoid cyst. Something else about your story is that my mother is an 'ORMOND' but we live in Hastings, NEW ZEALAND. Thanks again!!!!
I have 14 total shunt revisions and one relocation because I needed an operation on my abdominal wall, gyni reasons. I know a lot of people at my residential college in Coventry when I was there in '97 couldn't believe I was still alive. I haven't been feeling too good for about a month now. I've finally got an appointment at the hospital on the 10th Aug! I wish I was a kid again, hospital was much nicer then!
@tobybelchy I've had my shunt since birth (I'm 31) Total I've had 4 revisions. First one was when I was 10. The last three were when I was about 29. Thanks for posting your story. It gives people insight about what we who have this condition have gone through! God Bless.
@tobybelchy I dont have a FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying about my hydro (which actually made me depressed, that she forgot about me).
Wow...stvarno ti se divim...vesela i vedra...gledajući tebe odmah imam veeeeeeliku nadu da će i moj sin biti dobro,:-)) iako već vidim po njemu da je pravi mali borac...ima 2 i 1/2 godine i obožavam ga..... tebi svaka čast....drži se... pozdrav iz croatie!!!
@tobybelchy Hy! Yes my son hidrocefalus. Treći dan života je imao napadaje,a tek su mu sad ugradili pumpicu 16.02.2010. I bolje mu je od operacije...malo mamino čudo,prohodao je prošle god u 10 mjesecu,tj.sa 20 mjeseci...doktori su se čudili što je pravi mali borac....! I ti si isto pravi borac,you are an ANGEL!!!!! Kiss from Croatia
I have hydrocephalus too. I'd like to say well done and thank you for making vids like this to raise awareness of the condition n' all. In a way I am proud to have hydrocephalus, I like how it links you to all these ispirational people like yourself who are also living with it. I'm running for "ASBAH" to raise money soon - 13 miles, hope I manage lol! Anyways, I hope you are doing well. x
hi my name is cody erik james richards, i have hydrocephalus also.. ive had atotal of 72 operations first being at the age of 3 days old, i am now 16 years of age, if youd like to keep in contact with me heres my email: cody.richards@hotmail.com, would b cool to share our story
i hope your doing well now i have had a shunt since i was 6 days old i had a revision when i was 11 now i am 21 they left my old tubing in cause they couldnt get it out so now it make's me have headache's and my neck hurts constantly that is where it was broke
You know they say if u ride rides, or get sick violently, that could mean your shunt has disconnected from the vaulve. At least that's what happened to me. Kolerik
Hi, I think this depends on your neurosurgeon and his views :)
My NS assures me that the shunt can take a hard knock and it wont affect it, he says i can do whatever my body allows me to do including riding any rollercoaster i wish to.
In my experience, whenever my shunt has malfunctioned or broke down, i wake up early hours of the morning very uncomfortable in my head, and like you mentioned i will be violently sick. Good luck Kolerik, take care and thank you for watching x
Hi, aww im sorry to hear that, you hear of people having old tubing left inside due to calcification. Its easier to live it in there than take it out. A have a freind, who too has this problem, she has steriod injection in her collarbone to stop it rubbing. It helps her but the injections can be painful. Perhaps its something you can query?
Good luck and i hope this clears up, thanks for watching my video x
Aww God Bless You Im Glad To See In Your Video You Look Pretty Happy And Well Adjusted My 4 Year Old Has Hydrocephalus And Has Had 10 Brain Surgeries And 14 Major Abdominal Surgeries Due To Short Gut,.. It Gives Me Hope Besides The Surgeries That He Will Be A "Normal" Teenager With A Normal Life, Friends,Relationships, Etc,..
@tobybelchy lol Best comeback ever!! I've been getting lots of headaches lately and afraid that my shunt may be starting to fail, so it's not something to make fun of. I keep getting neck pains and slight headaches randomly. I need to see my NS soon. Im hoping I dont need a revision :(
I hope your NS can help you out, fingers crossed its not the shunt though!
Worst scenerio is that it is your shunt failing, but look on the bright side, a new shunt may be able to help you out a whole lot of good in exchange for just a couple of weeks of soreness from the wound. Good luck and thanks for watching x
@tobybelchy thanks, I hope nothing is wrong. The average shunt lasts around 10 years, and mines almost 17 years old (I got it put in when I was almost 1 year old.) And, since I still have my first shunt in, with no revisions, that also has me thinking about it. Thanks so much though, nobody will talk to me about it, not even my old friends with hydro. Its like they forgot that they knew me, or think Im lying about my hydro :( Its pretty hard to lie about it.
@tobybelchy I had a facebook, but someone hacked it. Now I just have a Myspace under then name "Ben Coasters". Ironically when I found a friend that I had on facebook from a few months ago on my MySpace, she didn't remember me from FB and thought I was lying about hydro. :( So, yeah, if you have a Myspace that would be awesome.
@tobybelchy Just woke up from a nap, with a headache. I dont have a FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying about my hydro (which actually made me depressed, that she forgot about me).
@tobybelchy I dont have an FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying (which made me depressed, that she forgot about me).
I have had hydrocephalus too. And the shunt I had fitted is no longer needed. I still have the shunt, but the doctors were reluctant to remove it, because they were worried about more damage being caused. Thanks for sharing your story. It's helped inspire me.
Hi, I have a daugther with a VP-shunt and I 'm scared all the time about she falls or hit her head, I also have a deaf son , so I do not what to do many times. My life is almost a Hurricane but love my kids and I know God knows why I have this two angels in my life , I like to see this videos cause I want to see people who survives these situations to get courage. I want to be more optimist but some times got weak... Thanks for show us your progress and blessed life nice girl...Blessings ...
as a father of my baby who was implanted with VP shut when he was 4 months old, many thanks for you who willing to put up your stories for sharing, may god bless u all,
Now my son is 2 years and 4 months old, he cant see, nor lift up his head, he only lies down and some turning on bed....... i neeed your advice, where can i look for a better treatment as my country doc are of no help....... pls advice me, you can mail me direct to ........roshlow@yahoo.com , God bless you all
Thankyou for making this vidoe. I was born with hydrocephalus and had a shunt put in when I was a baby, so I really don't know a lot about it, as I was so young. I'm 34 now and I'm doing good.
I had the same condition and trust having those surguries is no joke the doctors said I would have a month to live and that was six years ago and God has blessed me to still be here, I hope everythings going very well for you.
I also have HYDROCELPHUS, and my last shunt revions was when i was probably 12 wHAT was caused for me to go in and have lots of shunt revisions, was riding those rides. So i don't do that anymore, and i'm 28. The doctrs gave me only up to 5 yrs. to live and i weighed in @ a staggering 2 L.B..S. , and 4 OZ. I'm very lucky to be alive, and my mom calls me her miracle baby. So i know how u feel and what you're going through.
i have a vp shunt from physical abuse at age three. its not fun. i have one in mine since age 3, i'm 21 now, and its causing me to have the severe constipation i started having at age 19. doctors keep denying me and ive lost 20 pounds, i hate it im afraid im going to die. what can i do?? :;(
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
I don't know how I got here, but I guess they're similar. I have Chronic Intracranial Hypertension, a Craniophyignoma (brain tumor), Disautonomia, a heart condition, abdominal tumor and am going blind with Papilladema and Drusen. I'm getting the ICP monitoring soon and a Fenestration surgery and either a VP, LP shunt or decompression. Brain pressure sucks, I've had like 4 seizures from it.
Littlebear037 4 hours ago
I too have hydrocephalus. I've had three for sure revision surgeries, the last in 1983. And about 20 years ago I had two seizures out of the blue but since I've more or less fine. I'40 now and so keep on going. I had mine put in back when hydrocephalus surgery was sill in its infant stage yet.
1971tuba 1 month ago
I've had hydrocephalus, I'm 14 now... But there's one image that has been engraved in my mind, probably forever. It was when I was only a few days old, when I was going into surgery for it... I can remember seeing my dad looking down at me, and I was in a cot...(crib) and then I looked down at my medical band thing, it was on my left hand I think.... :D
iNinja85 1 month ago
Im 28 and I've had only 1 shunt revision when I was 14 because I outgrew it. I also have agenesis of the corpus callosum, my right side is mildly disordered, a seizure disorder, and type 1 diabetes. The corpus callosum is the largest white-matter structure in the brain — connects the left and right hemispheres well I was born without it.
TheDiabeticBirdman 1 month ago
I write this as I sit on the waiting after my son just had he's second shunt revision (surgery) your a great inspiration keep your head up and thanks for posting this great video.
method760 1 month ago
You're an inspiration. Stay awesome as you are :) x
HadynsTVdoc 2 months ago
You are awesome! :)
BOOMDEEZ 2 months ago
Iv had a shunt since I was 11, im now 22 and I havent had any problems yet..however iv booked an appointment with my neurosurgeon on Tuesday because of persistent pressure and headaches :-/ hope its all ok. Glad to see your coping with the shunt now and you have plenty support x :-)
Mryodisio 2 months ago
your amazing jade <3 so glad me and jaiden have got to know you xxx
alanaahx 3 months ago
U r an inspiration ... May god bless u always..
lat1na1 3 months ago
Thank you <3 <3 <3
I wish you all the happiness in the word for your future life ;)
....and YES, you are so beautiful lady, as you were sooooo sweet little girl :)
MacakOblacak 3 months ago
What a remarkable story, and doctors. It's amazing what they can do to save a life! You seem to have such a positive outlook on life, I love it, you're inspirational!
chrisbuffoni 3 months ago
I hope u r good now and forever..
GUAVcis06 4 months ago
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TommyLeeAllan 4 months ago
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TommyLeeAllan 4 months ago
I don't wish this condition on anybody, but it's nice to find others who have it and see their stories. I've lived with it for almost 32 years now, and I've been lucky to only have three surgeries--the original when I was 8 months old, and two revisions. Had my last surgery on New Year's Eve 2001.
May you be blessed with good health and a long and happy life!!!
BigSwitz98 4 months ago
how come the fluid has to be put in your abdomen??
why not just drain it out??
Johannady 4 months ago
@Johannady
Hey, well by having the tube drain into your abdomen, it means it can be 'dissolved' into the blood stream efficiently. My tube now leads to my heart so it get rid of the fluid that way instead.
Fluid is constantly being produced, amount varies form person to person but I know with me the fluid on my brain will produce a litre within 2 days- so would be a bit hard to drain it off all the time :)
tobybelchy 4 months ago
@tobybelchy OH! wow!! so you keep the tube on all the time?? :o
Johannady 4 months ago
@Johannady
Yep, its underneath the skin so it cant be seen and its safe :)
tobybelchy 4 months ago
i was treated at stanford and have had more shunt revsions than i could remember. i had to have 3 in 3 weeks because of an infection from poping zits.
bactiria in the blood formed a blocage in my shunt.
migrains gallore with this. not to mention having kids tear your hat off and laughing. i could go on and on.
poopoofaceman 4 months ago
I feel your pain. I was diagnosed with appendicitis only a few days before my freshman year of college. Those days were not fun.
montipellier 4 months ago
Great vid. I went through the same stuff when I was born. I was born May 26th '91. I still have my shunt had it revised 3-4 times when I was little and I also have the scar from insertion on my stomach. It's really neat to know there's more ppl out there that have gone through what I went through. :)
XzXP3NGU1NXzX 5 months ago
I have a 14yo son who had his shunt put in when he was 12. I was doing research on the web bc hes been getting terrible headaches.. We have done testing and more to come. Im so glad I came across this video and was able to view your journey of it.. Gives me hope he will be okay. Thank you for posting this.
LuvNenyaLox 5 months ago
I have a shunt I'm 13 I had it in ny by doctor wisoft and abot
1dcramo 5 months ago
I have a shunt. iam 23 years old & had it put in at birth, I was born at 27 weeks! x
MtMarshi 5 months ago
That was a great video. I also have hydrocephalus. I had my first shunt put In At 6 months and since then I've had around 20 surgeries. My last 5 were 3 months ago on my 18th bday. After everything you've gone thru u still look great. I'm glad to see your doing better
XixwargasmxiX 5 months ago
well my baby is 15 months but she is not standing properly im worried she also has a vp shunt .. though she is very active but is not willing to stand up n walk... does shunt have any connection with the delay?
esha39 6 months ago
plz teme when did u starting walking??
when u were a child??
esha39 6 months ago
@esha39
Hi I started walking at the normal age, think I was about 11 months old :)
tobybelchy 6 months ago
I am 26 years old. Was born with Spina Bifida and Hydrocephalus. Had my first shunt put in when I was a few days old. That lasted me the first 13 years of my life. My second shunt has lasted me the last 13 years! I consider myself very lucky in that regard! I had minor problems for a little while after my first shunt was replaced, but i've been ok ever since. I was diagnosed with Slit Ventrical Syndrome. Had symptoms similar to a blocked shunt, but it wasn't that. THANKFULLY!
LilMissSpeeedy 6 months ago
My baby has hydrocephalus due to prematurity and a grade 4 brain bleed. She is 13 months old now (5 shunt revisions due to malfunction/ infections) and I have to say that your video has been an inspiration to me.
greenheatherm 6 months ago
Heya :) Take a look at my Hydrocephalus Documentary on my channel, so far 5 videos about Crouzons. I was in the same hospital! Love G.O.S.H!
HadynsTVdoc 7 months ago
great video thanx heaps!! you are a true inspiration to all children and their families who are going through the shunt process :) :)
xt4t1k 7 months ago
i too,wwaer "battle scars" with pride. You are beautiful,never let anyone's closed minded thinking change that! God has us her for a reason,and we are truly blessed! I have had my shunt for almost 36 years with only 1 revision in 1988. No major complications,thank God! I have even been able to take Karate classes with some modications,of course. Just know you are not alone! If you ever need to talk,email me at jlh135@yahoo,com! <3
reikiman75 8 months ago
Comment removed
Lol90796 8 months ago
I have hydrocephalus too, and it is a comfort to find although i feel like it sometimes, i'm not the only person in the world to go through this. Thankyou for this video =)
Lol90796 8 months ago
You are so brave. You have been throught so much.
My brother also has hydrocephalus and has had so much surgery I have lost count.
It is a cruel thing to have to deal with but you still seem very happy and have not let it get you down
xx
nataliea22 8 months ago
You are so brave. You have been throught so much.
My brother also has hydrocephalus and has had so much surgery I have lost count.
It is a cruel thing to have to deal with but you still seem very happy and have not let it get you down
xx
nataliea22 8 months ago
you are so pretty.
Shrink18 8 months ago
@Shrink18
Thank you <3
tobybelchy 4 months ago
=:::(
AbesAreC00l 9 months ago
Lemar is a famous basketball player. I have a picture of me and Johnathon Brandis. I don't think anyone EVER made the mistake of thinking we were DATING!
MrsMelanieC 9 months ago
You are very,beautiful.Thanks for sharing your story with us.Good luck in the future! ;)
iHeartCookies9523 10 months ago
@iHeartCookies9523
Thank you so much <3
tobybelchy 4 months ago
Hi
nice video . I have had 11 of these surgeries .Its a shame that anyone has to go through these surgeries. ,but its nice to know i am not alone AND STILL ALIVE .....THANKS FOR POSTING
jwosmith67 10 months ago
god bless u
ebard48 10 months ago
hi...
its a real video of your story...amazaing...i pray for you.
we dont like hydrocefalus ...why is become in new baby...
clinicalhealth.blogspot.com
Name - Montu
Email- montu.rajoriya@gmail.com
montumohan 10 months ago
you have gone through a lot, prayers are with you. and lemar is a hottie
823bztm 10 months ago
You are an inspiration to all of us hydrocepalics. How are you doing lately? I've been in and out of the hospital over the last two months after having two more revisions (yay, this maks a total of 7 since I was 10 and I'm 32 now but I beleive you have me beat). Hope you are well. Feel free to email mee if youd like I'll private message you my email address if that's ok with you?
bonesgirl1978 10 months ago
I loved your video, i also have a shunt, its hell to suffer through but like the rest of the comments say,"we must fight the good fight!"
theonering55 10 months ago
Be blessed in the rest of your life! I'm rooting for you cause your story hits home! My son was born with hydrocephelus mild so he didn't need shunts but he has some learning difficulties! You gave me inspiration from your video! God bless you!
Legionofgoons 10 months ago
may allah bless you... and get recovered to spend a joyful life...
dief0r 11 months ago
Very nicely done. I've had hydrocephalus for 19 years. I'm writing a book on my experiences. Keep up the positive attitude.
McGyverRhythms 11 months ago
This comment has received too many negative votes show
Sorry but that girl should be ashamed of herself for dating a colored man.
JesusChristRulesYOU 11 months ago
@JesusChristRulesYOU
Erm not that i agree with what the hell youre saying, but who on earth is dating a coloured guy?
tobybelchy 11 months ago
@tobybelchy This is CRAZY! I didnt get from the vid that she was dating a colored guy..but if she was how could you even THINK to state that??? Where do judgemental ppl like you get off? Why would she be ASHAMED? What does a person's SKIN COLOR have to do with who they are as individuals..unbelievable...just unbelievable....
babygirlja 11 months ago 9
@babygirlja :) <3
I only wish I was dating LEMAR!! lol x
tobybelchy 10 months ago
@JesusChristRulesYOU ..... if Jesus Christ really rules you, you wouldn't say anything like this .coz he died for everyone ,white and colored . so stop speaking like an idiot
nsdrdodo 10 months ago
@JesusChristRulesYOU I will say that i disagree on the point of view where it is only the color of their skin that matters... but honestly it does bother me to see a pretty white girl with a gangbanger wannabe ghetto black kid... bothers me just as much with a wannabe gangbanger white kid, but at least everyone knows the white kid is a fool
cenyan13 10 months ago
@JesusChristRulesYOU
"Sorry but that girl should be ashamed of herself for dating a colored man."
Please go into further detail why one should be ashamed of dating someone with different color skin.
Nephilimator 9 months ago
@JesusChristRulesYOU you shouldnt be called jesuschristrulesyou cause your clearly not a christian.
Shrink18 8 months ago
@JesusChristRulesYOU weirdo......
lightheart2001 8 months ago
@JesusChristRulesYOU people like you make me sick. What is wrong with dating someone of a different colour. If anyone here is going to be ashamed of themselves it should be you. You disgust me and by the looks of the other comments towards your ridiculous statement you discust them too. Go crawl back into the hole that you adopted these medevil ideals and stay there until you buck your damn ideas up.
SkinDeepTV 7 months ago 2
@JesusChristRulesYOU you should me ashamed of existing
P.S. - I hope someday you grow up and realize there's no god.
P.P.S. - If there was an all-wise god, he would be ashamed of creating people like you
94norbertoenrique 7 months ago
wow seriously, why can i not be that brave and i have the same problems. This video is inspirational to me and im sure a lot of others
MrYouthpast0r 11 months ago
My cats name is Mittens
catuvelauni 11 months ago
I was born with hydrocephalus. It's a tough battle but we have to fight!
totalstar007 11 months ago
Every day is a struggle. But since you conquered this? Well, hell, I don't think nothing can stop you now, girl. Keep fighting the good fight!
YurisDisciple 1 year ago
I mean you are an insperation
nwilliamson09 1 year ago
Thank you you are a insperation to me.
nwilliamson09 1 year ago
You've dealt with pain and suffering with so much grace and courage it is hard not to admire your bravery.
Thank you for sharing this video with us. Four minutes of pure inspiration. I wish I could give you a hug
Midas234 1 year ago 5
@Midas234
Thank you so so much x
tobybelchy 1 year ago
@Midas234 14
aboudjalal 1 year ago
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
billieandmonica 1 year ago
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
billieandmonica 1 year ago
Great video, thanks for posting. My son is 18 - he has had multiple revisions the past 16 years. We were comparing his scars to yours! Very closely matched - LOL He is doing as great as you. Bless you, sweetie!
billieandmonica 1 year ago
Thank you for this video. I have just been diagnosed with NPHydrocephalus. I don't know yet what I will be experiencing in the near future. Your video gives me lots of insight and build courage.
vocalbasic 1 year ago
@mspain1024
I dont think u or me had it since birth or else our head would have enlarge! I went on livin normal life after month and a half!!
Usmobil 1 year ago
I am 22 years old and 3 weeks ago (October 24th---my 22nd birthday!) I went into the doctors thinking I had the flu because I had the worst headache of my life & I started throwing up. It ended up being Hydrocephalus---I had an emergency brain surgery on my birthday by having a drain put in and then two days later the neurosurgeon put the VP shunt in me. I haven't had any problems besides some pain in my head & stomach. Thank you for posting this! I am sorry you had to go through all of that.
mspain1024 1 year ago
I am 19 years old and 3 years ago I was diagnosed with hydrocephalus aqueductal stenosis. I have yet to get a shunt and constantly have aggravating headaches. I wish they would put a shunt in, as I can't live my life how i used to. I had a scholarship to play college hockey in the states and I have not been able to play hockey now for 3 years. I used to box in Alberta and have yet to put on another pair of gloves since. It has affected my life incredibly. I feel what you are going through, but
Willish69 1 year ago
hey want to hear my journey ok here it begins i had Hydrocephalus we went to church and god blessed me i went back to the hospital and it was gone end of stroy.
fallout401 1 year ago
My son who is 28 has gone through shunt revision surgery 8 times in the past year and a half, we are now going to look into having a ventriculostomy done so he will not need a shunt ever again. Thank you for sharing your story. God Bless You.
triciasanders 1 year ago
Hey!..I've never actully heard of anyone else having a cyst cause hydrocephalus. The doctors alway told me it was extremely rare!! Anyway my story is basically the same as yours. I had the shunt when i was 4 due to the cyst causing hydr... Now i am 16 an all of a sudden my head has gotten v.sore around the shunt and in my abdomin where it ends. I was in hospital a month ago with it and turns out i dont need it anymore. So what made you get it out?? where you finished school at the time? Thanks.x
mssexysmart 1 year ago
Hi! I just turned 24 in april. Last month i found out i have Hydrocephalus. Went thru surgery at st.lukes milwaukee and got a programable shunt put in. My question is that is it normal for someone at my age have Hydrocephalus out of the blue?? Not 1 single person in my family ever had Hydrocephalus and growing up i never did either. So how come at age 24??
Usmobil 1 year ago
@Usmobil hi----i am 22 years old (as of the day I had a drain put in my head in October) & it happened out of the blue to me!! I was questioning the same thing....but the neurosurgeon told me that I could have had it since a baby and never got diagnosed because I've never had a cat scan before. He said for some "unknown" reason it happened. My question is how soon after you got your programmable shunt put in did you return to activities? Like work/exercise/drinking?
mspain1024 1 year ago
Hey jade. My name is george and i have dandy walker syndrome and hydrocephalus. I have had eight surgeries in the last year and the last two were on my birthday. What is unique is i have an identical twin brother who was not and does not have the dandy walker syndrome and hydrocephalus. That is eight is the last year alone... i have had many other surgeries. Thank you for posting this video it helped me a lot. Last year i almost died in the Johns Hopkins Hospital. Ben Carson is my neurosurgeon.
Bassplayer600 1 year ago
@Bassplayer600
Oh my goodness, you have ben carson as your neurosurgeon?!
I watched a film about him just a few months back and he seems like such an amazing man :)
'The ben carson story' You should take a watch, i loved it!!
Hope you find yourself in great health now :)
tobybelchy 6 months ago
It is amazing what some people have to deal with in life. You never know what hand you are going to be dealt. You are a brave young woman. I wish you all the best in life! :-)
smokeyginger46 5 months ago
@Bassplayer600 when i had my shunt put in Ben Carson was my surgeon
gmczr2guy 4 months ago
Hey jade. My name is george and i have dandy walker syndrome and hydrocephalus. I have had eight surgeries in the last year and the last two were on my birthday. What is unique is i have an identical twin brother who was not and does not have the dandy walker syndrome and hydrocephalus. That is eight is the last year alone... i have had many other surgeries. Thank you for posting this video it helped me a lot. Last year i almost died in the Johns Hopkins Hospital. Ben Carson is my neurosurgeon..
Bassplayer600 1 year ago
I have also had a shunt since I was 3 months old. I am 51 years old now and still have the original shunt. No complications and I lead a normal life. My surgery was performed at the University of Iowa. I consider myself very fortunate.
Bruce1026 1 year ago
I have had a shunt since I was 3 months old and I have had it for 24 years now I didnt get a shunt for the same reasons though I had too much pressure on my brain so thats why I got one
Kyrie8612 1 year ago
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Kyrie8612 1 year ago
Comment removed
Kyrie8612 1 year ago
I had hydrocephalus since I was 5 months old seriously the shunt ruins my life I just had surgery a couple days ago.
TheBmonster1 1 year ago
tobybelchy
I would love it if you were able to someohow tell me more about your journey. My sister has brain damage due to other complication and idiot doctors back in the day. They induced Mum's labor sayng she was having a big baby. She ended up having twins. She can't articulate how she feels all the time and lives with daily migraines. What can you tell me so I can help her? Thanks so much and thanks for sharing your journey :-)
Anabella1974 1 year ago
tobybelchy My sister has hydrocephalus. She's a miracle baby. She is now 32. God is sooo good. She goes to John Hopkins University Hospital in Baltimore, Maryland. Its one of the world's best hospitals for treating hydrocephalus. They specialize in hydro and are known for their renowed hydrocephalus center. Docter Riggamonte is my sisters doctor. My mother researches the top doctors in teh world and he is one of them!! God bless you!
Anabella1974 1 year ago
Good video!!
bigwhitee 1 year ago
This has been flagged as spam show
I dont know if you are still checking this video for comments but I was wondering if you wouldnt mind chatting with me a bit about your VP Shunt. I just recently (2 months ago) had a VP Shunt placed and Im kind of wondering whats next. I also have been having what seems to be the same abdominal pain that you experienced. I would love to talk to you about this if you wouldnt mind. My email address is cstrick0317@hotmail.com and my name is Colby. Thank you for your time.
cstrick0317 1 year ago
I dont know if you are still checking this video for comments but I was wondering if you wouldnt mind chatting with me a bit about your VP Shunt. I just recently (2 months ago) had a VP Shunt placed and Im kind of wondering whats next. I also have been having what seems to be the same abdominal pain that you experienced. I would love to talk to you about this if you wouldnt mind. My email address is cstrick0317@hotmail.com and my name is Colby. Thank you for your time.
cstrick0317 1 year ago
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Heathouse23 1 year ago
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Heathouse23 1 year ago
This is a great video. I know someone with the same issues I at first did not know if she just need extra help in school. She tilts her head to the side when she walks not sure if all people affected by the disease do that. I hope everything is going well with you. Nice to her some share there story to educate others about diseases you do not here about often. It sucks when your life is hospital stays after hospital stays but on the bright side if the doctors make you better its worth it.
PlatinumLabels 1 year ago
Is your shunt adjustable? As in, being able to adjust the amount of flow? Have you ever experience massive headaches when you lay down flat, like in bed? If so, when you sit up, and it starts to drain again, do you hear a clicking noise? My wife had the same problems like yourself. Her VP shunt started failing with the abdomen fluid build up. Then, had it converted to a VA. Her last revision last 27 years!
smootcw2 1 year ago
aw, that sucks. By any chance, do you ever see or hear things that are not?
returnoftheramble3 1 year ago
My niece had to have her shunt changed a year ago... But like you it does not stop her doing anything life... I wish you well... And THANK GOD for G.O.S.H.. she has also been treated there since she was a baby...
lindla100 1 year ago
thanks for sharing, my daughter whos now 7 is going thru the same thing. Shes had 7 surgeries for her shunt now. 2 that were from a shunt infection.
jerzeegrl0205 1 year ago
Glad you are feeling better. you are very beautiful :)
demonicBerith 1 year ago
I know how you feel i was born with hydrocephalus and its been a long journey for me as well but the advice i can give to you is don't give up i went to my Neurosurgeon and he told the most amazing news that my shunt is functioning well and that i will not have to see him anymore unless something goes wrong keep fighting though Be Strong I am always here to talk to anybody that is struggling or having a hard time btw im only 16
omarionlover424 1 year ago
These type of diseases are very bad in many ways
You have to spend your hole life in hospitals for treatments and exams...
Some selfish people see you as "something" and not as "someone"
Its complicated
Anyway you seem to have turned out pretty good
Hope it wasnt too painfull
Keep living .D
joaoa13portugal 1 year ago
Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Heathouse23 1 year ago
@joaoa13portugal Hi my Name is Josh Heathouse I was looking through clips on shunt videos. I hope you are doing well from your opperation I have been through 17 VP shunt opperations and I am 23 years old I now what you are going through if you would like you can look me up on facebook. I hope every thing is going much better for you. God Bless you..
Heathouse23 1 year ago
This has been flagged as spam show
my girlfriend is also suffering from hydrocephalus, i can really understand the pain... God please help in getting a proper cure for this disease
sack55 1 year ago
my girlfriend is also suffering from hydrocephalus, i can really understand the pain... God please help in getting a proper cure for this disease
sack55 1 year ago
i girlfriend is also suffering from hydrocephalus, i can really understand the pain... God please help in getting a proper cure for this disease
sack55 1 year ago
Thank you for sharing that. My 12 yr old son, Matthew is going thru this now. I am trying to learn as much as I can, He is Autistic as well and can not speak. The things he's feeling, he can't tell anyone. We have been in the Hospital over two months now trying to find it's cause. We are down to deciding between the lumbar shunt or the vp.. Have you had both?
tswarek 1 year ago
i kno wat u went though i had to go though wit it myself when i was a baby and now i'm 19
guyananorthphilly09 1 year ago
This has been flagged as spam show
Do u have an email adress I can write at , I have a 11yr old girl and she has Hydrocephalus it would be nice if u meet her it will make her happy theres more to tell if u would like to write me at silvia.gop@hotmail.com
Silviagop8013 1 year ago
Hi I'm Hollie I was born at 27 weeks had my first shunt placed when I was 30 weeks old I'm 13 and have had 22 hospital stays all over 2 weeks and 17 surgeries I know what you go thru
MissAmerica4897 1 year ago
that was so touching! Your BEAUTIFUL! may God continue to stand by you!
Queenhazel2003 1 year ago
that was inspiring!!!!
m4carbine77vid 1 year ago
man,
i admire your bravery
GUiTARBITCH1129 1 year ago
Hi. I just wanted to say thanks for sharing your story. My daughter has hydrocephalus since birth. She had her shunt inserted when she was 5 weeks old. She is now 6 coming up 7 in November and so far she has had no problems wit her shunt. We recently had a slight scare with it but that was nothing. What else has attracted me to your story is that she also has an arachnoid cyst. Something else about your story is that my mother is an 'ORMOND' but we live in Hastings, NEW ZEALAND. Thanks again!!!!
nzbunnygurl 1 year ago
I have 14 total shunt revisions and one relocation because I needed an operation on my abdominal wall, gyni reasons. I know a lot of people at my residential college in Coventry when I was there in '97 couldn't believe I was still alive. I haven't been feeling too good for about a month now. I've finally got an appointment at the hospital on the 10th Aug! I wish I was a kid again, hospital was much nicer then!
rdutneall 1 year ago
@tobybelchy I've had my shunt since birth (I'm 31) Total I've had 4 revisions. First one was when I was 10. The last three were when I was about 29. Thanks for posting your story. It gives people insight about what we who have this condition have gone through! God Bless.
bonesgirl1978 1 year ago
Your Video is very touching, It's a real joy to see you won that fight and became a beautful young woman, you look like your momma :o)
Good luck to you Princess,much Love from France
Piatequila 1 year ago
@tobybelchy I dont have a FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying about my hydro (which actually made me depressed, that she forgot about me).
coastermusic93 1 year ago
Wow...stvarno ti se divim...vesela i vedra...gledajući tebe odmah imam veeeeeeliku nadu da će i moj sin biti dobro,:-)) iako već vidim po njemu da je pravi mali borac...ima 2 i 1/2 godine i obožavam ga..... tebi svaka čast....drži se... pozdrav iz croatie!!!
anchy1907 1 year ago
@anchy1907 Hi, wow my first foreign comment :)
I tried translating, i picked up that your litte boy too has this condition. God bless him, and thank you x
tobybelchy 1 year ago
@tobybelchy Hy! Yes my son hidrocefalus. Treći dan života je imao napadaje,a tek su mu sad ugradili pumpicu 16.02.2010. I bolje mu je od operacije...malo mamino čudo,prohodao je prošle god u 10 mjesecu,tj.sa 20 mjeseci...doktori su se čudili što je pravi mali borac....! I ti si isto pravi borac,you are an ANGEL!!!!! Kiss from Croatia
anchy1907 1 year ago
I have hydrocephalus too. I'd like to say well done and thank you for making vids like this to raise awareness of the condition n' all. In a way I am proud to have hydrocephalus, I like how it links you to all these ispirational people like yourself who are also living with it. I'm running for "ASBAH" to raise money soon - 13 miles, hope I manage lol! Anyways, I hope you are doing well. x
MrHenrick1 1 year ago
@MrHenrick1
Hi, thank you very much :)
Im glad you see things that way, good luck in your fundraising and wish you all the best with your health etc x
tobybelchy 1 year ago
hi my name is cody erik james richards, i have hydrocephalus also.. ive had atotal of 72 operations first being at the age of 3 days old, i am now 16 years of age, if youd like to keep in contact with me heres my email: cody.richards@hotmail.com, would b cool to share our story
codyerikrichards 1 year ago
@codyerikrichards Hi Cody, i think we already know eachother from facebook :)
Its jade, im freinds with Darla Rivera and madalyn etc.
Hope you are keeping well, talk soon :) x
tobybelchy 1 year ago
i hope your doing well now i have had a shunt since i was 6 days old i had a revision when i was 11 now i am 21 they left my old tubing in cause they couldnt get it out so now it make's me have headache's and my neck hurts constantly that is where it was broke
RBier52210 1 year ago
You know they say if u ride rides, or get sick violently, that could mean your shunt has disconnected from the vaulve. At least that's what happened to me. Kolerik
KolerikRocks 1 year ago
@KolerikRocks
Hi, I think this depends on your neurosurgeon and his views :)
My NS assures me that the shunt can take a hard knock and it wont affect it, he says i can do whatever my body allows me to do including riding any rollercoaster i wish to.
In my experience, whenever my shunt has malfunctioned or broke down, i wake up early hours of the morning very uncomfortable in my head, and like you mentioned i will be violently sick. Good luck Kolerik, take care and thank you for watching x
tobybelchy 1 year ago
@RBier52210
Hi, aww im sorry to hear that, you hear of people having old tubing left inside due to calcification. Its easier to live it in there than take it out. A have a freind, who too has this problem, she has steriod injection in her collarbone to stop it rubbing. It helps her but the injections can be painful. Perhaps its something you can query?
Good luck and i hope this clears up, thanks for watching my video x
tobybelchy 1 year ago
Aww God Bless You Im Glad To See In Your Video You Look Pretty Happy And Well Adjusted My 4 Year Old Has Hydrocephalus And Has Had 10 Brain Surgeries And 14 Major Abdominal Surgeries Due To Short Gut,.. It Gives Me Hope Besides The Surgeries That He Will Be A "Normal" Teenager With A Normal Life, Friends,Relationships, Etc,..
adrian0616 1 year ago
@adrian0616
Hi,
God bless your 4 year old, thats an almighty alot to go through at such a young age :(
I wish him all the best in the future, he must be one little soldier :') x
Thanks for watching
tobybelchy 1 year ago
I am sorry for all the pain your have dealt with.
CJ7with285andt18 1 year ago
@CJ7with285andt18
Thank you, and thank you for watching x
tobybelchy 1 year ago
lol tard
delldell21 1 year ago
@delldell21 lol Prick.
tobybelchy 1 year ago
@tobybelchy lol Best comeback ever!! I've been getting lots of headaches lately and afraid that my shunt may be starting to fail, so it's not something to make fun of. I keep getting neck pains and slight headaches randomly. I need to see my NS soon. Im hoping I dont need a revision :(
coastermusic93 1 year ago
@coastermusic93
LOL, thanks ;)
Oh no, sorry to hear that :(
I hope your NS can help you out, fingers crossed its not the shunt though!
Worst scenerio is that it is your shunt failing, but look on the bright side, a new shunt may be able to help you out a whole lot of good in exchange for just a couple of weeks of soreness from the wound. Good luck and thanks for watching x
tobybelchy 1 year ago
@tobybelchy thanks, I hope nothing is wrong. The average shunt lasts around 10 years, and mines almost 17 years old (I got it put in when I was almost 1 year old.) And, since I still have my first shunt in, with no revisions, that also has me thinking about it. Thanks so much though, nobody will talk to me about it, not even my old friends with hydro. Its like they forgot that they knew me, or think Im lying about my hydro :( Its pretty hard to lie about it.
coastermusic93 1 year ago
@coastermusic93
I have friends with shunts that have lasted 30 odd years, its hard to believe really!! :)
Wow you can always talk to me about it, you can add me on facebook if you like, if you have it, under 'Jade lucas.'
I have plenty of hydro friends that would love to see a new face :) x
tobybelchy 1 year ago
@tobybelchy I had a facebook, but someone hacked it. Now I just have a Myspace under then name "Ben Coasters". Ironically when I found a friend that I had on facebook from a few months ago on my MySpace, she didn't remember me from FB and thought I was lying about hydro. :( So, yeah, if you have a Myspace that would be awesome.
coastermusic93 1 year ago
@tobybelchy Just woke up from a nap, with a headache. I dont have a FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying about my hydro (which actually made me depressed, that she forgot about me).
coastermusic93 1 year ago
@tobybelchy I dont have an FB account, cause someone hacked it, but I have a Myspace account under "Ben Coasters". Ironically, I tried to find my old Facebook hydro friend on Myspace, but she didn't remember me and thought I was lying (which made me depressed, that she forgot about me).
coastermusic93 1 year ago
@coastermusic93 ya im 21, had it put it at 6 months.
theplrbear1028 1 year ago
@tobybelchy I've had my shunt for 20 yrs, No problems with it and hopefully don't. I sent you a facebook request..
KingTMD 1 year ago
I'm 39 and have hydro. I had my first shunt placed in 2003. I've had 18 surgeries since then. The latestest being in Feburary
osmondfan4ever 1 year ago
God Bless u!!
80z90zhouzemuzicgrl 1 year ago
I have had hydrocephalus too. And the shunt I had fitted is no longer needed. I still have the shunt, but the doctors were reluctant to remove it, because they were worried about more damage being caused. Thanks for sharing your story. It's helped inspire me.
smithers668 1 year ago
Great video. Thanks for sharing. I have a 2 1/2 year old with hydrocephalus and we have been very lucky to not have to have any revisions so far.
snave29 1 year ago
my son is 4 and he has hydrocephalus and autism u are soooooo pretty and brave my blessings to u
karlavav 1 year ago
Hi, I have a daugther with a VP-shunt and I 'm scared all the time about she falls or hit her head, I also have a deaf son , so I do not what to do many times. My life is almost a Hurricane but love my kids and I know God knows why I have this two angels in my life , I like to see this videos cause I want to see people who survives these situations to get courage. I want to be more optimist but some times got weak... Thanks for show us your progress and blessed life nice girl...Blessings ...
maryanita32 1 year ago
I have hydrocephalus too. I have had ten revisions and I have two shunts, one in my right ventricle and one in my left.
Stay strong <3
brainieblonde 1 year ago
God bless you!!! I hope that your full recovery goes well!!!! great story of strength for a beautiful young lady!!! take care!!
pdrnsalazar84 1 year ago
as a father of my baby who was implanted with VP shut when he was 4 months old, many thanks for you who willing to put up your stories for sharing, may god bless u all,
Now my son is 2 years and 4 months old, he cant see, nor lift up his head, he only lies down and some turning on bed....... i neeed your advice, where can i look for a better treatment as my country doc are of no help....... pls advice me, you can mail me direct to ........roshlow@yahoo.com , God bless you all
roshlow 1 year ago
your, beautiful now.
maximoms66 1 year ago
who sings this song???
mbballw1 1 year ago
Thankyou for making this vidoe. I was born with hydrocephalus and had a shunt put in when I was a baby, so I really don't know a lot about it, as I was so young. I'm 34 now and I'm doing good.
TurquoiseSky100 1 year ago
I had the same condition and trust having those surguries is no joke the doctors said I would have a month to live and that was six years ago and God has blessed me to still be here, I hope everythings going very well for you.
gothix19 1 year ago
I also have HYDROCELPHUS, and my last shunt revions was when i was probably 12 wHAT was caused for me to go in and have lots of shunt revisions, was riding those rides. So i don't do that anymore, and i'm 28. The doctrs gave me only up to 5 yrs. to live and i weighed in @ a staggering 2 L.B..S. , and 4 OZ. I'm very lucky to be alive, and my mom calls me her miracle baby. So i know how u feel and what you're going through.
KolerikRocks 1 year ago
This is what george lopez had
shadygrady1998 1 year ago
i have a vp shunt from physical abuse at age three. its not fun. i have one in mine since age 3, i'm 21 now, and its causing me to have the severe constipation i started having at age 19. doctors keep denying me and ive lost 20 pounds, i hate it im afraid im going to die. what can i do?? :;(
mrswartz 1 year ago
This has been flagged as spam show
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
coastermusic93 1 year ago
This has been flagged as spam show
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
coastermusic93 1 year ago
This has been flagged as spam show
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
coastermusic93 1 year ago
Does anyone know how a peritoneal catheter is extended. I might need to have it done soon, since I've had the shunt in for 16 years (Im 17). My dad says that my NS told him that you could extend the tube in the stomach, without making any cuts into the head. I don't believe them at all, it just doesn't seem possible without connecting a new tube to the valve. Im so freaked out :( I HATE HYDRO :(
coastermusic93 1 year ago
My 14 yrs old friend Luke has Hydrocephalus.
birds16ful 1 year ago