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My name is Jennifer. I am 25. I have hydrocephalus. I have had it since birth. I would like to talk to others that have it. Feel free to message me.
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I have hydrocephalus
- By jennifer131
- Posted June 25, 2009 at 11:37 pm · 20 replies
- In Living with a genetic or birth defect
- Shared with the public
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20 replies
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- Newest first
- By bubbitt
- Posted July 3, 2009 at 11:20 pm
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Hello there Jenifer, thankyou for your reply.
I am 42yrs old, born 6 wks premature, with congenital hydrocephalus.
My hydrocephalus was caused by toxoplasmosis. (if you type in toxoplasmosis on the inspire website and go to the first entry Congenital Toxoplasmosis by Nornd, that is my Mother's entry, the son she refers to is me)
I have a very old ventriculo atrial (goes into the heart) shunt.
I belong to the National Hydrocephalus Foundation in the States, a really good source of information and support, I recommend it.
Do you have much trouble with your shunt? Have you had a shunt revision at all? Do you have a good Neurosurgeon?
Hope your keeping well, cheers Karl.
- By jennifer131
- Posted July 4, 2009 at 6:06 am
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Hey Karl,
You are welcome for the reply. As I said, I will talk to you as long as you talk to me. I did belong to the National Hydrocephalus Foundation, but I didn't find what I was looking for there so I joined the Association. I haven't had any hydrocephalus related problems since I was five or six. I am now 25. I do have a Neurosurgeon, I see him every 2 years. Hope to continue talking to you,
Jennifer
PS. I would like to talk every other day, if not every day if possible.
- By bubbitt
- Posted July 5, 2009 at 3:17 pm
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Hi there Jenifer, how are you? You say you've not had shunt problems since you were six, gee that's really good going. For me , its been 30yrs this year since my last surgery.
Shame about the NHF, they seem quite good, but so long as the Hydrocephalus Association is of help and your getting want you want, then thats good. I did belong to them as well but let my membership lapse.
Hope you have a good day. I've been feeling a bit crook, so will take it quietly today.
Cheers, Karl
- By jennifer131
- Posted July 5, 2009 at 8:42 pm
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Karl,
Hope you feel better. Hope to talk to you soon,
Jennifer
- By bubbitt
- Posted July 7, 2009 at 3:49 pm
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Hello there Jenifer, I'm feeling better today. I'm off to work this afternoon. I work only part time, 9hrs a week, enough to keep life interesting, and meet people.
Do you work at all, if so, what do you do? You said in your blurb about yourself that College wasn't for you.
I found high school tough going, couldn't wait to leave!
Have a lovely day. Cheers, Karl
- By jennifer131
- Posted July 7, 2009 at 9:25 pm
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Karl,
I work at a grocery store. I get at least 32-40 hours a week which is enough for me, and is pretty good for a part timer. How have you been? I am doing ok, I called my NS yesterday and told them I would like to meet other people with hydrocephalus and they are going to try and help me as much as they can.
- By bubbitt
- Posted July 7, 2009 at 9:51 pm
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Good on you, I've found meeting other people with hydrocephalus quite difficult and have only ever met a handful in my lifetime. Good luck.
I work in a supermarket as a cashier, been there a good many years. They've looked after me there!
Better go, I start soon.
Karl.
- By jennifer131
- Posted July 7, 2009 at 9:56 pm
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That's cool, but you are a college graduate right?
- By bubbitt
- Posted July 7, 2009 at 10:13 pm
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While I'm not entirely sure what is meant by college graduate, I attained what was back then known as (in New Zealand) School Certificate (you sit external exams)
No , I'm not a college or High School dropout, not a layabout, not by any means.
Some years ago, I did a 3yr Management Diploma, and with great effort passed with flying colours.
- By bubbitt
- Posted July 12, 2009 at 3:15 pm
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Hi there Jenifer Well, you asked about me graduating from College You say College wasn't for you, what does that mean? Did YOU graduate from College, how did you get on at College?
Hope you had a good weekend. A very wet one over here.
Karl
- By lucaboy10
- Posted August 22, 2009 at 6:20 am
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I have hydrocephalus too I had it since birth and some people think we are mentally disabled and we are not disabled at all and I am sick of it ... So people with hydrocephalus who's with me !WE ARE NOT MENTALLY DISABLED!
- By Speakingwings
- Posted October 8, 2009 at 11:31 am
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Hi all,
I haven't really thought about hydro.I have been thinking about water on the brain ir cyst on my head plus the schizencephaly.I have had to contact Deb Fields from NHF alot to get anwers I don't get others wise.I'm also here to help others I do alot of studing.I graduated high school I was glad to get out.I tried college but couldn't seem to make it.Oh well God bless.
- By sbhadult
- Posted October 11, 2009 at 9:03 pm
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My name is Madonna. I am 53 years old, and have had hydrocephalus since birth, as well. I also have Spina Bifida.
- By gigglebox
- Posted November 9, 2009 at 6:32 pm
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My name is Ashley i am 25 and i just recently got diagnosed with hydro along with cysts and cannot seem to get help from docs. What are your symptoms just so i know i am not crazy and Headaches, Blurry vision, Shaking, Balance problems just may have something to do with hydro? I was told by my neurologist gate is the only symptom of hydro. Am i crazy or is she or are we both wrong? I am so CONFUSED.
- By Speakingwings
- Posted November 10, 2009 at 7:20 pm
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Ashley,There's another site called National Hydrocephalus Foundation the lady's name is Deb to me she's a God sin she is the only only that helped me when my dr wouldn't Good luck if you need to talk I'm always here.
- By gigglebox
- Posted November 12, 2009 at 12:50 pm
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Thanks speakingwings I will check it out!!!
- By pepsiman4756
- Posted November 13, 2009 at 10:45 am
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HI jENNIFER,
Like you I have had hydrocephalus from birth with the major residual damage being vison loss due to a damaged optic nerve. Did you have a shunt placed, I was fortunate in that no shunt was needed. The fluid was removed at age 5. My coordination was also affected due to the location of the damage.
I do hope you are doing well, feel free to write me at any time. I am now age 62 and retired after working as a social worker for 36 years.
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