I had Hydrocephalus when I was born, but I had a plastic thingy put in when I was only a few weeks old. I'm 14 years old now, will I ever have to get it replaced, and if I do, how will I know? I don't go for check ups...well hardly ever anyway lol!
PLEASE REPLY!
Because last year I had a sort of sharp headache while I was on my school camp, right after I had a ginger sea sickness lolly thing... But after that, I didn't take another lolly, and I've never had that headache again. Is it related?
Wow, I don't know you but I'm really proud of you. What a strong girl you are. You've gone through so much yet you seem so positive. Thanks for sharing your story. I hope you're doing well now.
my 2 yr old son has an arachnoid cyst they have done 2 surgeries on him 1 was puttng in the shunt. im so sorry you had to go through all of that....i just pray my son doesnt have to go through it as well.....
i have to much respect for you, my granda was dignosied with brain cancer recently and 19 days after he was dignosied he died :( hes in a better place now, no more pain :D i still miss him but i remember all the good times i had <3 live long and live it as you wont, not as others want you to live it :') you only live once <3
OMG our lifes are EXACTLY the same i have a shunt my cyst exactly same size omg im shocked and how the same we are reading your story my shunt failed to to which i had emergancey re-do just wow x
i am 8 and i still have it i have been hit in the head of times also i have been rushed many times i am going to have it my whole life one day i rember that when i was getting ready to go to school i colsped and got up coughing and dizzy and rushed too the hospital and i don't remeber anything besides that stay strong Veta
@carole8910 I can relate. I was tackled by a kid at school right as I was leaving and fell backwards and hit my head on the tile floor. My catheter swelled up, so my mom ended up rushing me to the emergency room. The swelling ended up going down and I was okay, but I hate getting my mom all worried about those things.
hey this is mff81909 again. this is my main account. I didn't realize I was signed into the other one when I commented before. I just put a link to my blog on my youtube profile where it says "website" if you or anyone reading this wants to read it.
Wow, your story is eerily similar to mine! I wrote a blog about my experience that you are welcome to read. Youtube won't let me post a link but if you really want to read it try to my name is Calliope on blogger and the blog is called "My Story". I have been looking for people who have been through the same stuff as me and so far I think you are the closest! I hope you are doing well and your headaches are under control! Thanks for sharing your story!
my son has Dandy Walker syndrome ,with Hydrocephalus. He had shunt, and he has had 15 surgeries in 8 years. Now is good condition without shunt because he had an operation (fenestration of cyst) here in Greece.
His doctor is neurosurgeon Dr Zountsas and save the life of my son, maybe he can save and your life . Email: zountsas@hol.gr, ++30 2310 306.500
I;m hydrocephalic too. Your story made me cry. I have had 10 surgeries in my 35 years. You are so brave and I can only imagine how scared you must have been. You have reminded me of the meaning of the word strength. Thank you for putting your story out there.
Don't you hate it when you have a headache or feel like trowing up and you have to think do I have the flu or is it my shunt malfunctioning? Take care and stay strong.
I have it too and I was diagnosed when i was born and it has been the roughest 13yrs. of my life i have experienced 10 total sugeries from when i was born to this post date.
I had meningitis & Hydrocephalus. And I've two shunts on both hemispheres of the brain. Life is hard, with regards to lots of things for me. But always I keep pushing & working towards my things, as you've done. So good luck to you as well. If you can get back to me!!!
@cacherscout I wouldn't report you!!! Its Happy to get to know a person like me, and how you're struggling with your life as well!!! Keep up the good work & keep me posted about you as well!!!! Take Care!!!!
I had meningitis & Hydrocephalus. And I've two shunts on both hemispheres of the brain. Life is hard, with regards to lots of things for me. But always I keep pushing & working towards my things, as you've done. So good luck to you as well. If you can get back to me!!!
My cyst was just discovered, not as big as yours sounds like, but interfering with the third vent, and the symptoms get more unbearable each day. Thank you for sharing your story. I don't think I want that shunt!
Im glad your not upset with your DR's. I think they are not given enough credit. Lets face it there is no repair manuel on the human body and really no way to tell if it is going to work. But they did there best and thats what counts. If not for those folks neither I nor you or a lot of other people would not be alive today. Good Luck Keep your head up, and Stand tall no matter what comes your way. PS I saw your story doing research for a medical class I'm in. Thanks for the insperation
I have hydrocephalus caused by a cyst on the left side of my brain. At the moment there is something wrong with either the pressure or the ventricles. Watching this video and seeing that someone else understands what I am going through makes things alot easier. Thank you for sharing your story.
you are an inspiration to me. i had a ten month old beautiful baby girl and we have been on a very long journey since my pregnancy. she also has hydrocephalus and I was pressured to terminate the pregnancy. after 5 operations (shunt got infected after a few days) and approximately 9 weeks at hospital (GOS), we are at home and she is making fantastic progress. God bless you and thank for increasing my hope. ruthxxxx
your dvd is amazing. my daughter is 19 and has hydrocephalus (2 shunts) several ops at Alder Hey children's hospital, Liverpool (the other great famous hospital :O) )
thank you for sharing, you and all those who know the journey of hydrocephalus are so brave as well as the mums and das and sisters and brothers who share that journey with you.
thank you, we are homoured to have watched your dvd. blessings xx
Having Hydrocephalus since birth I knowing nothing else but this. Watching your video brought back everything I went through last year. 3 surgeries with the final, in July, being successful. Stay strong and keep on keeping on. Praying for you and everyone touched by this wicked disease. XO
wow, good luck and stay strong, I have tears in my eyes for you, but I shall wipe them and be strong like you. I will go and tell at least three more people about this terrible complication.
i have hydrocephalus also, ive had it since birth, my first surgery at 3 days old then acouple weeks after that i had a few more.. life was hard for me because i wouldnt be able to have a shunt for a hole year without surgery, to this day july 2010, i am 16 years old, and had 72 operations, doctors have missed a malfunction and was in hospital from march 2010 to may.. days within loosing myself. wasnt pleasent at all. i am sorry you have to go through this.. im always here if you want to talk
i jus recently discovered i have a araranoid cyst on my brain and i am scared as all hell upset been breakin down ever since i found out to kno now whats wrong with me and the life i was lived and how i was treated by my father like i swear i want his head. but i trully and seriousily am scared knowing this all now doe ..
you my dear firend have luck iam only 12 and ihad paased all you have paased and alittle bit more ..... iallmost cried to know that we have same problem..
I too have hydrocephalus with an arachnoid cyst (on the brain stem). I was born blind until I was shunted at 3 months. I have had many shunt revisions as well. Nice video.
I had to share this video it has truly touched my heart.I am always wondering if Alinahs going to live a long normal life.This girl has the same thing my little Alinah has but mija has 2 shunts,shes had 10 shunt revisions since she was born. It gives me hope and a little peace to know that shes not the only one<3 Thanks you for sharing your story with us all...Many prayers to you and your family.
Good thoughts and wishes to you. A lot of healthy people could learn how to be strong and look at life from a new perspective from people like you. Wishing you and everyone else dealing with similar issues peace, love and as much pain free life as possible.
you are amazingly strong, i can't even believe to comprehend the discomfort you felt after multiple major surgeries.
i have an arachnoid cyst as well, when i was 18, I had surgery.. mine was different.. mine was drained. no shunt was implanted. my heart goes out to you and your family so much, words can not even describe. i wish you the best.
I hope that things are going well for you. As someone who also has hydrocephalus and a VA shunt, I am especially moved by your story. Very best wishes to you.
You are an amazing person. To have gone through as much as you have. i am so scared. I have a VP Shunt it was inserted in 2007 and I am going May 3rd this yr. to have mine redone. You look great and I am so happy you made it through ok. I hope everything is going better for you now!
Beautiful. Thank you for this dairy - it will help me better understand the condition that my future patients may be going through. From a Student Nurse
Hello everyone I also have an arachnoid cyst that's 12 cm long and 5cm wide, i thought I had an ear infection that's how I found out about mine. In 2007 I had 2 opinions and both said not to operate because of the position that it's in. As a matter a fact where the cyst is there is no brain so removing the cyst would cause the brain to colapse. BUT enough about me- I am glad you are ok, I thought I was the only one with this problem let's all stay intouch. :0)
Very nice video--I too have an arachnoid cyst and had VP shunt surgery to relieve hydrocephalus in 1994 at the age of 28. I knew something was a wry my whole life but never had a full diagnosis until MRI and CT scans become more widely used in the early 90s. Just had my periodic brain scan (MRI) and things are stable. Thankfully, I've never had a revision. Is there a way to slow the video down so one can read the text that seems to rush by.
thanx for making me cry! my son is only 4 and has been through alot like you, he's had 7 operations 3 revisions and had the tube hanging out of his head to measure the fluid~last christmas~ he spent the entire christmas and new year in hostpital i wish you all the luck in the future, god bless xxxx
I also was diagnosed with hydrocephalus as a baby. I am a healthy 17 year old. But my life has been long and hard. I was always being teased because of my condition. There are people who understand what I have been through. Recently, I had undergone a surgery to remove a pseudocyst from my tubing that is between my stomach and my intestine. I am a lively girl and doing great and marching in the marching band.
Hi, I also have a arachnoid cyst in my left temple area. to which a crainial shunt is fitted. I was told it was there from birth but it wasn't detected until I was 14. unlike you I only had the one op and have only had a few checkups after some severe headaches.
I am now 34 and lead a normal life. Motor bike rider and banger racing driver.
I would like to speak to others about this medical condition as when I was 14 i didn't care but now I do. Do you know if there is anyware I can do this
Hi, I also have a arachnoid cyst in my left temple area. to which a crainial shunt is fitted. I was told it was there from birth but it wasn't detected until I was 14. unlike you I only had the one op and have only had a few checkups after some severe headaches.
I am now 34 and lead a normal life. Motor bike rider and banger racing driver.
I would like to speak to others about this medical condition as when I was 14 i didn't care but now I do. Do you know if there is anyware I can do this
wow, your video has really opened my eyes to this condition, my brother was diagnosed with this at the age of 3 and had similar ops to you, but i never really thought if what he must have felt and thought, even though he was only young we always knew he was in pain, we never really understood it, but now you have helped me, unfortunatley, aged 5 he experienced what you did at the age of 4, but we found out to late, he passed away in his sleep, you are so brave and i will be praying for you x
Heya, this video means so much to me as ive told you :), makes me remember what ive forgotten :S you are strong i forgotten how strong ive had to be aswell nice to meet someone like u x
Sweet story. Hope you get better soon.
ScienceWars 1 month ago
I had Hydrocephalus when I was born, but I had a plastic thingy put in when I was only a few weeks old. I'm 14 years old now, will I ever have to get it replaced, and if I do, how will I know? I don't go for check ups...well hardly ever anyway lol!
PLEASE REPLY!
Because last year I had a sort of sharp headache while I was on my school camp, right after I had a ginger sea sickness lolly thing... But after that, I didn't take another lolly, and I've never had that headache again. Is it related?
iNinja85 2 months ago
nice video! thanks for sharing your story
TheHydrobrain 2 months ago
How is your shunt now? No problems I hope?!?
bonesgirl1978 3 months ago
Wow, I don't know you but I'm really proud of you. What a strong girl you are. You've gone through so much yet you seem so positive. Thanks for sharing your story. I hope you're doing well now.
juleisha123 3 months ago
my 2 yr old son has an arachnoid cyst they have done 2 surgeries on him 1 was puttng in the shunt. im so sorry you had to go through all of that....i just pray my son doesnt have to go through it as well.....
christinaangela01 3 months ago
i have to much respect for you, my granda was dignosied with brain cancer recently and 19 days after he was dignosied he died :( hes in a better place now, no more pain :D i still miss him but i remember all the good times i had <3 live long and live it as you wont, not as others want you to live it :') you only live once <3
sarahtopping1999 4 months ago
OMG our lifes are EXACTLY the same i have a shunt my cyst exactly same size omg im shocked and how the same we are reading your story my shunt failed to to which i had emergancey re-do just wow x
sleafordboi 5 months ago
i am 8 and i still have it i have been hit in the head of times also i have been rushed many times i am going to have it my whole life one day i rember that when i was getting ready to go to school i colsped and got up coughing and dizzy and rushed too the hospital and i don't remeber anything besides that stay strong Veta
carole8910 6 months ago
@carole8910 I can relate. I was tackled by a kid at school right as I was leaving and fell backwards and hit my head on the tile floor. My catheter swelled up, so my mom ended up rushing me to the emergency room. The swelling ended up going down and I was okay, but I hate getting my mom all worried about those things.
luvATL4ever 4 months ago
hey this is mff81909 again. this is my main account. I didn't realize I was signed into the other one when I commented before. I just put a link to my blog on my youtube profile where it says "website" if you or anyone reading this wants to read it.
calliope139 6 months ago
Wow, your story is eerily similar to mine! I wrote a blog about my experience that you are welcome to read. Youtube won't let me post a link but if you really want to read it try to my name is Calliope on blogger and the blog is called "My Story". I have been looking for people who have been through the same stuff as me and so far I think you are the closest! I hope you are doing well and your headaches are under control! Thanks for sharing your story!
mff81909 6 months ago
I never used to think so much on youtube i thaught during this video...
Keep strong as you are, good luck!
(sorry for my bad english, i'm not native speaker)
andriymz 7 months ago
my son has Dandy Walker syndrome ,with Hydrocephalus. He had shunt, and he has had 15 surgeries in 8 years. Now is good condition without shunt because he had an operation (fenestration of cyst) here in Greece.
His doctor is neurosurgeon Dr Zountsas and save the life of my son, maybe he can save and your life . Email: zountsas@hol.gr, ++30 2310 306.500
fanisBGreece 7 months ago
I;m hydrocephalic too. Your story made me cry. I have had 10 surgeries in my 35 years. You are so brave and I can only imagine how scared you must have been. You have reminded me of the meaning of the word strength. Thank you for putting your story out there.
Don't you hate it when you have a headache or feel like trowing up and you have to think do I have the flu or is it my shunt malfunctioning? Take care and stay strong.
mseeyore1975 7 months ago
I have it too and I was diagnosed when i was born and it has been the roughest 13yrs. of my life i have experienced 10 total sugeries from when i was born to this post date.
cacherscout 8 months ago
That/You are amazing. I also have hydro - and thought that my life was challenging - this puts it in perspective. Thank you.
MrRobinThornton 8 months ago
Appreciate the post. My son has hydro and its hard to find others in my area with it, so I have turned to the web.
kmkrazyk 8 months ago
I had meningitis & Hydrocephalus. And I've two shunts on both hemispheres of the brain. Life is hard, with regards to lots of things for me. But always I keep pushing & working towards my things, as you've done. So good luck to you as well. If you can get back to me!!!
Chandrajith100 8 months ago
@Chandrajith100 dude i am going through the same boat as you and it has been the roughest 13 yrs. of my life. and i am 13 please don't report me
cacherscout 8 months ago
@cacherscout I wouldn't report you!!! Its Happy to get to know a person like me, and how you're struggling with your life as well!!! Keep up the good work & keep me posted about you as well!!!! Take Care!!!!
Chandrajith100 8 months ago
I had meningitis & Hydrocephalus. And I've two shunts on both hemispheres of the brain. Life is hard, with regards to lots of things for me. But always I keep pushing & working towards my things, as you've done. So good luck to you as well. If you can get back to me!!!
Chandrajith100 8 months ago
I have Hydrocephalus too, but thankfully my Dr. said I didn't need the shunt.
steffers121 8 months ago
yeeaaah I made it in your video!! I feel so special =')
Amber
xxx
Rispolix 8 months ago
My cyst was just discovered, not as big as yours sounds like, but interfering with the third vent, and the symptoms get more unbearable each day. Thank you for sharing your story. I don't think I want that shunt!
terter1990 9 months ago
you are amazingly inspirational!! you are amazingly strong!! and amazingly beautiful!! you are definitly an amazing person!
thinkingoftakuto 9 months ago
Im glad your not upset with your DR's. I think they are not given enough credit. Lets face it there is no repair manuel on the human body and really no way to tell if it is going to work. But they did there best and thats what counts. If not for those folks neither I nor you or a lot of other people would not be alive today. Good Luck Keep your head up, and Stand tall no matter what comes your way. PS I saw your story doing research for a medical class I'm in. Thanks for the insperation
Rydog1972 11 months ago
My brother has had a VP shunt since he was a baby. He's 19 now and doing well... He's my twin.
kittypride2 11 months ago
I have hydrocephalus caused by a cyst on the left side of my brain. At the moment there is something wrong with either the pressure or the ventricles. Watching this video and seeing that someone else understands what I am going through makes things alot easier. Thank you for sharing your story.
Keopro 1 year ago
you are an inspiration to me. i had a ten month old beautiful baby girl and we have been on a very long journey since my pregnancy. she also has hydrocephalus and I was pressured to terminate the pregnancy. after 5 operations (shunt got infected after a few days) and approximately 9 weeks at hospital (GOS), we are at home and she is making fantastic progress. God bless you and thank for increasing my hope. ruthxxxx
spicychicken21 1 year ago
Wow, I'll pray for you. Be Strong & Good Luck!
blitz7079 1 year ago
good luck Jade ;-)
missvanessa94 1 year ago
your dvd is amazing. my daughter is 19 and has hydrocephalus (2 shunts) several ops at Alder Hey children's hospital, Liverpool (the other great famous hospital :O) )
thank you for sharing, you and all those who know the journey of hydrocephalus are so brave as well as the mums and das and sisters and brothers who share that journey with you.
thank you, we are homoured to have watched your dvd. blessings xx
salistorymaker 1 year ago
Having Hydrocephalus since birth I knowing nothing else but this. Watching your video brought back everything I went through last year. 3 surgeries with the final, in July, being successful. Stay strong and keep on keeping on. Praying for you and everyone touched by this wicked disease. XO
Anhoki 1 year ago
wow, good luck and stay strong, I have tears in my eyes for you, but I shall wipe them and be strong like you. I will go and tell at least three more people about this terrible complication.
Mitsarrichuno 1 year ago
@Mitsarrichuno
Hey,
Thank you very very much, thank you for watching and take care x
tobybelchy 1 year ago
i have hydrocephalus also, ive had it since birth, my first surgery at 3 days old then acouple weeks after that i had a few more.. life was hard for me because i wouldnt be able to have a shunt for a hole year without surgery, to this day july 2010, i am 16 years old, and had 72 operations, doctors have missed a malfunction and was in hospital from march 2010 to may.. days within loosing myself. wasnt pleasent at all. i am sorry you have to go through this.. im always here if you want to talk
codyerikrichards 1 year ago
knowin i have never had a big surgery before this is what scares me the most to cause i kno there can be risk involve i am scared
datstrivell 1 year ago
i jus recently discovered i have a araranoid cyst on my brain and i am scared as all hell upset been breakin down ever since i found out to kno now whats wrong with me and the life i was lived and how i was treated by my father like i swear i want his head. but i trully and seriousily am scared knowing this all now doe ..
datstrivell 1 year ago
you my dear firend have luck iam only 12 and ihad paased all you have paased and alittle bit more ..... iallmost cried to know that we have same problem..
yougotowendXD 1 year ago
Thank you for sharing your story. Very nice video. I wish you the very best.
kwdorst 1 year ago
You are strong and brave, I admire you.
JakJoProduction 1 year ago
I too have hydrocephalus with an arachnoid cyst (on the brain stem). I was born blind until I was shunted at 3 months. I have had many shunt revisions as well. Nice video.
billywayne73 1 year ago
I had to share this video it has truly touched my heart.I am always wondering if Alinahs going to live a long normal life.This girl has the same thing my little Alinah has but mija has 2 shunts,shes had 10 shunt revisions since she was born. It gives me hope and a little peace to know that shes not the only one<3 Thanks you for sharing your story with us all...Many prayers to you and your family.
delilahsilva 1 year ago
Good thoughts and wishes to you. A lot of healthy people could learn how to be strong and look at life from a new perspective from people like you. Wishing you and everyone else dealing with similar issues peace, love and as much pain free life as possible.
JEFF90258 1 year ago
you are amazingly strong, i can't even believe to comprehend the discomfort you felt after multiple major surgeries.
i have an arachnoid cyst as well, when i was 18, I had surgery.. mine was different.. mine was drained. no shunt was implanted. my heart goes out to you and your family so much, words can not even describe. i wish you the best.
LegalizeSam 1 year ago
I hope that things are going well for you. As someone who also has hydrocephalus and a VA shunt, I am especially moved by your story. Very best wishes to you.
Diffie64 1 year ago
You are an amazing person. To have gone through as much as you have. i am so scared. I have a VP Shunt it was inserted in 2007 and I am going May 3rd this yr. to have mine redone. You look great and I am so happy you made it through ok. I hope everything is going better for you now!
starrfirelilly 1 year ago
Beautiful. Thank you for this dairy - it will help me better understand the condition that my future patients may be going through. From a Student Nurse
CarolineJDillard 2 years ago
Hello everyone I also have an arachnoid cyst that's 12 cm long and 5cm wide, i thought I had an ear infection that's how I found out about mine. In 2007 I had 2 opinions and both said not to operate because of the position that it's in. As a matter a fact where the cyst is there is no brain so removing the cyst would cause the brain to colapse. BUT enough about me- I am glad you are ok, I thought I was the only one with this problem let's all stay intouch. :0)
76swill 2 years ago
May the lord wrap his arms around your entire family.
Marc T
trubiet 2 years ago
Very nice video--I too have an arachnoid cyst and had VP shunt surgery to relieve hydrocephalus in 1994 at the age of 28. I knew something was a wry my whole life but never had a full diagnosis until MRI and CT scans become more widely used in the early 90s. Just had my periodic brain scan (MRI) and things are stable. Thankfully, I've never had a revision. Is there a way to slow the video down so one can read the text that seems to rush by.
rsox342009 2 years ago
I'm so sorry for all the things life has thrown at you! You're incredibly brave & strong. God Bless you!! <3
beanandbear 2 years ago
thanx for making me cry! my son is only 4 and has been through alot like you, he's had 7 operations 3 revisions and had the tube hanging out of his head to measure the fluid~last christmas~ he spent the entire christmas and new year in hostpital i wish you all the luck in the future, god bless xxxx
uptonwho 2 years ago
I also was diagnosed with hydrocephalus as a baby. I am a healthy 17 year old. But my life has been long and hard. I was always being teased because of my condition. There are people who understand what I have been through. Recently, I had undergone a surgery to remove a pseudocyst from my tubing that is between my stomach and my intestine. I am a lively girl and doing great and marching in the marching band.
bamagirl098 2 years ago
This has been flagged as spam show
Hi, I also have a arachnoid cyst in my left temple area. to which a crainial shunt is fitted. I was told it was there from birth but it wasn't detected until I was 14. unlike you I only had the one op and have only had a few checkups after some severe headaches.
I am now 34 and lead a normal life. Motor bike rider and banger racing driver.
I would like to speak to others about this medical condition as when I was 14 i didn't care but now I do. Do you know if there is anyware I can do this
robnkaz7580 2 years ago
Hi, I also have a arachnoid cyst in my left temple area. to which a crainial shunt is fitted. I was told it was there from birth but it wasn't detected until I was 14. unlike you I only had the one op and have only had a few checkups after some severe headaches.
I am now 34 and lead a normal life. Motor bike rider and banger racing driver.
I would like to speak to others about this medical condition as when I was 14 i didn't care but now I do. Do you know if there is anyware I can do this
robnkaz7580 2 years ago
wow, your video has really opened my eyes to this condition, my brother was diagnosed with this at the age of 3 and had similar ops to you, but i never really thought if what he must have felt and thought, even though he was only young we always knew he was in pain, we never really understood it, but now you have helped me, unfortunatley, aged 5 he experienced what you did at the age of 4, but we found out to late, he passed away in his sleep, you are so brave and i will be praying for you x
emz5790 2 years ago
1:35....what a gorgeous little girl , takes after her gorgeous parents ; )
carrieluvv 2 years ago
love this value you have my prayers. your such a beautiful and strong girl. wish to hear from you God bless.
samathalev 2 years ago
This was beautiful, you have angels all around you! God bless you and keep you safe. Love, Gail.
gail1834 2 years ago
As I said on your other video, thanks for posting this. You are so brave. God Bless!
bonesgirl1978 2 years ago
I know the last thing you want is pity, but this made me cry. You are a very strong and beautiful lady. I hope you will get better, sincerely.
lydiapandora 2 years ago
Heya, this video means so much to me as ive told you :), makes me remember what ive forgotten :S you are strong i forgotten how strong ive had to be aswell nice to meet someone like u x
Wikkedbrisbane 2 years ago
wow...thats been a pretty tough ride for you honey. i hope everything is gonna be alright for you in the future. One brave lady.
tostrivetoseek 2 years ago