Hi Amanda. I I just wanted to say you are doing an awesome thing bringing awareness to this subject. I also have hydrocephalus. I had my diagnosis at 3 weeks old and I had surgery to put a shunt in around that time. I also had problems at the age of 10 as my Shunt failed and became blocked. I had to have 2 more surgeries at that time. I am almost 33 now and I was also very lucky to have awesome doctors. I still struggle at times but you are an inspiration. Take care.
My baby girl has a surgery when she was 2 months old now she is 4 months old.....I am going in depression due to her....mostly I'm afraid because of her. I want to see her with normal life
I have had hydrocephalus since birth. Also got a shunt at 2 months. I'm now 20 and living a normal life. Own a place, have a good job, and went to college for machining. My only insight or advice is to know the signs of a malfunction. My parents didn't know mine was malfunctioning for roughly 3 years, and I was asymptomatic only grumpy and irritable. I was 16, so understandable of my parents not to see it as a shunt malfunction. Regardless, being there for your child and loving them is plenty. My parents never made hydrocephalus a big deal, which helped me not see it as one. Not seeing it as a limitation but as something I overcame. I know my parents always stressed a lot on my behalf but they never showed it. I wish the best for you and your daughter and just thought I'd share my story.
Hi I was diagnosed with hydrocephalus at the age of 11 and I am 39 now. I thankfully haven't had any complications with my shunt. About 2yrs ago I found out that the tube had disconnected around my neck area but there is no signs of fluid on my brain. My doctor thinks my body has some how learned to absorb the fluid on its own. But if any complications are to arise we would do scans again to check things out. And I have lived a normal healthy life otherwise. I use to ride horse all through junior high and high school. And I've had a 4 wheeler since I was a kid and still do it to this day. I just do the safe thing and always where my ATV helmet. . Please keep your chin up. Yes parents will always worry about their kiddos. But it's good to let us be kids and let us know we can do anything we put are minds to. But just be aware of our special piece of extra hardware.
I've lived with hydrocephalus since birth, and am now 49. I had as of a normal life as I could expect. Of course everybody's life is "normal" to them. However, I went to school in normal classes never really in any different classes than other kids. I went to college and struggled at times, but did graduate with a computer science degree. I haven't needed as many surgeries as Amanda, but have needed 5 total which is still more than some people, but have read stories of kids needing a crazy amount far more than Amanda. Some of them were apparently fine otherwise though. Despite not needing surgery since a amonth after 9/11/2001, I'm still classified as "moderate to severe hydrocephalus" which really shocked me the first time I saw that actually in writing in 2017. I was almost considering going to a psychologist at least once after I saw that as I was worried about depression and just "giving up" after seeing severe my diagnosis is, and how this is also as good as it gets. Most of my life I assumed I had minor hydrocephalus when I see all these stories of people needing so many more surgeries.
Who's ur baby now ...becz my baby girl also hav brain surgery becz of hydrocephalus I m also so much worried about her future...she is only 3 momth old.plzzzz reply me.plzzzzzzzzzz
@@harshaljoshi4864 Hi, im 19 and will get shunt surgery during this months. I have read that there are some side affects on shunt and that it limits persons life. Could you please tell me how did you shunt operation go and did it limit yor actions on daily basis? Thanks.
@@sinquaryI'm facing ataxia issue also from shunt surgery. I have slurred speech or some muscle weakness but I can walk or ride non gear two wheeler also.
Hi Amanda. I I just wanted to say you are doing an awesome thing bringing awareness to this subject. I also have hydrocephalus. I had my diagnosis at 3 weeks old and I had surgery to put a shunt in around that time. I also had problems at the age of 10 as my Shunt failed and became blocked. I had to have 2 more surgeries at that time. I am almost 33 now and I was also very lucky to have awesome doctors. I still struggle at times but you are an inspiration. Take care.
Hello,do you experience headache frequently,if not how long did it take for the headache to fade away after the last surgery?
Which hospital u treat ment ... Please tell me because my 1yr baby struggling in 2brain surgery pls tell me which place which hospital
Amanda, keep up the good work you are doing! What a inspiration to others! Good luck with your studies and your career!
I have also hydrocephalus with 3 brain surgeries. Now I am an assistant professor.
Aapka 1st shunt kitne age mai lga tha
16 years
I have had 4
@@veenay.r.3275I'm 36 year's old person. Muze 1997 se shunt dali hai. How old are you?
My baby girl has a surgery when she was 2 months old now she is 4 months old.....I am going in depression due to her....mostly I'm afraid because of her. I want to see her with normal life
I have had hydrocephalus since birth. Also got a shunt at 2 months. I'm now 20 and living a normal life. Own a place, have a good job, and went to college for machining. My only insight or advice is to know the signs of a malfunction. My parents didn't know mine was malfunctioning for roughly 3 years, and I was asymptomatic only grumpy and irritable. I was 16, so understandable of my parents not to see it as a shunt malfunction. Regardless, being there for your child and loving them is plenty. My parents never made hydrocephalus a big deal, which helped me not see it as one. Not seeing it as a limitation but as something I overcame. I know my parents always stressed a lot on my behalf but they never showed it. I wish the best for you and your daughter and just thought I'd share my story.
Hi I was diagnosed with hydrocephalus at the age of 11 and I am 39 now. I thankfully haven't had any complications with my shunt. About 2yrs ago I found out that the tube had disconnected around my neck area but there is no signs of fluid on my brain. My doctor thinks my body has some how learned to absorb the fluid on its own. But if any complications are to arise we would do scans again to check things out. And I have lived a normal healthy life otherwise. I use to ride horse all through junior high and high school. And I've had a 4 wheeler since I was a kid and still do it to this day. I just do the safe thing and always where my ATV helmet. . Please keep your chin up. Yes parents will always worry about their kiddos. But it's good to let us be kids and let us know we can do anything we put are minds to. But just be aware of our special piece of extra hardware.
I've lived with hydrocephalus since birth, and am now 49. I had as of a normal life as I could expect. Of course everybody's life is "normal" to them. However, I went to school in normal classes never really in any different classes than other kids. I went to college and struggled at times, but did graduate with a computer science degree. I haven't needed as many surgeries as Amanda, but have needed 5 total which is still more than some people, but have read stories of kids needing a crazy amount far more than Amanda. Some of them were apparently fine otherwise though. Despite not needing surgery since a amonth after 9/11/2001, I'm still classified as "moderate to severe hydrocephalus" which really shocked me the first time I saw that actually in writing in 2017. I was almost considering going to a psychologist at least once after I saw that as I was worried about depression and just "giving up" after seeing severe my diagnosis is, and how this is also as good as it gets. Most of my life I assumed I had minor hydrocephalus when I see all these stories of people needing so many more surgeries.
Plzz tell.me.howz ur baby now plzzz share with me I in trouble
Can a hydrocephalus baby be fine and can spend a normal life plz guid
How is yours doing
Is his life normal
Who's ur baby now ...becz my baby girl also hav brain surgery becz of hydrocephalus I m also so much worried about her future...she is only 3 momth old.plzzzz reply me.plzzzzzzzzzz
Anyone is facing Hydrocephalus issue with head injury?
I am
How old are you and when you had shunt surgery?
I'm 35 year's old now I have shunt from 1997
@@harshaljoshi4864 Hi, im 19 and will get shunt surgery during this months. I have read that there are some side affects on shunt and that it limits persons life. Could you please tell me how did you shunt operation go and did it limit yor actions on daily basis? Thanks.
@@sinquaryI'm facing ataxia issue also from shunt surgery. I have slurred speech or some muscle weakness but I can walk or ride non gear two wheeler also.