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Our Organization |
Info on Hydrocephalus |
Treatment of Hydrocephalus |
Articles & Stories |
Guestbook |
Survey Results |
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Our Organization |
Info on Hydrocephalus |
Treatment of Hydrocephalus |
Articles & Stories |
Guestbook |
Survey Results |
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Guestbook |
The 2009 Hydrocephalus Survey results are posted!
Our next Hydrocephalus Conference will be held in Spring 2011.
The National Hydrocephalus Foundation needs your support!
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| Name: jessie | Posted: 2009-11-05 21:01:53 |
| E-Mail: jpmonks@verizon.net | Location: massachusetts |
| i am 16 i have had a vp shunt since i was 2 months old. i have had 2 shunt revisions since then. i would like to talk to someone in my situation. | |
| Name: Frenchelle Minter | Posted: 2009-11-05 16:10:55 |
| E-Mail: minterfrenchelle@yahoo.com | Location: Kansas City, Missouri |
| My son was also diganose with hydrocephalus when was nine months. | |
| Name: Joy | Posted: 2009-11-04 12:21:13 |
| E-Mail: snoopy28215@hotmail.com | Location: Charlotte, NC |
| I am 35 years old and have obstuctive hydrocephalus with a VA shunt. My last revision was on April 15 when my doctor put in an anti-syphen devise. I have a BA degree in Communications. I am currently unable to work due to persistant problems with my shunt. |
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| Name: Emma Smith | Posted: 2009-10-30 19:50:20 |
| E-Mail: thishail@hotmail.co.uk | Location: Leeds, England |
| My name is Emma & my 5 week old son has hydrocephlus. At the moment he has a ventricular access device but is having surgery to fit a shunt tomorrow. I just wondered if anyone else here has a baby with hydrocephalus? | |
| Name: sharron | Posted: 2009-10-29 11:05:37 |
| E-Mail: sharronaj@rogers.com | Location: Ottawa |
| I have been on this site before My husband has a codman shunt all the symptoms of NPH are returning but the neurosurg has checked many times and says it is operational Its been a slow deterioration ...it has taken a couple of months for all this to return Has anyone else had an operational shunt that does not relieve the symptoms |
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| Name: Jenny | Posted: 2009-10-27 17:53:40 |
| E-Mail: crazysnowman43@yahoo.com | Location: Casper, WY |
| I am a 51 year old female and was told 3 1/2 years ago that I have NPH and had a Codman VP shunt implanted. I have had 15 adjustments since then, 7 in the last 2 months. I have one eye that droops, with headaches and a sick feeling in my head when I need another adjustment on my shunt. My NS said I have slit ventricles and my last MRA shows fluid build up around my brain. He says my shunt is working too good and that this is normal. Is there anyone that has had anything similar happen to them. I could use any information anyone had will help. Keeping all in prayer and God Bless |
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| Name: Kara Name | Posted: 2009-10-20 13:02:21 |
| E-Mail: sniperyulane17@yahoo.com | Location: Ohio |
| My name is Kara Name. I am a seventeen year old girl with hydrocephalus. I've never asked my mother whether I have congenital or acquired, as I did not know there was a difference until very recently. I do know that when I was a couple (or a few) months old, my mother came into my room to give me a bottle. She found me in my bed, bleeding from the eyes, ears, mouth, and nose. Between my birth and the sixth year of my life, I had a shunt implanted. I have a very normal life for a teenage girl. I have an above average IQ, but I'm very lazy. I'm quite healthy and rarely get sick. I've only had to go to my neurologist a few times because the nerves around the tube that runs down my neck was sensitive and bothersome, but that was a few years ago. I am a very clumsy person and I have a horrid short term memory, but I do not know whether or not that is because of my hydrocephalus or if that's just me. I thank the doctor, though I don't know his name, for saving me and doing a great job with it. I've never had to have my shunt fiddled with and he put a good amount of tubing in there, so at five foot five, I still have enough tubing. I want to thank all the people who contribute to this site and to many other hydrocephalus associations, as they show me that I am not alone. |
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| Name: chasquin Barr | Posted: 2009-10-09 10:44:58 |
| E-Mail: chasquinnikki@yahoo.com | Location: WoonsocketRI |
| my name is chasquin I am A seventeen year old who found out I had Hydrocephalus at the age of 9. I always had medical problems that my mom would point out to the doctor and they wouldnt relize it so I had a hard time in school until about 4th grade I can say I am truly blessed to be alive having such a slow build up. So know that I have learned about this nowing that I am not alone. I am doing my senior project on it and need as much infomation as I can get if any one would like to share there story with me or, help me with my project I would be greatful. You can just e-mail me and I will get back to you thanks! | |
| Name: Kat | Posted: 2009-10-07 16:44:21 |
| E-Mail: zumbachkat@hotmail.com | Location: Michigan |
| My name is Kathleen but go by Kat.First of all I'd like to thank God for the struggles I've had to deal with.Also I'd like to thank Deb Fields cause without her I'd don't know what I'd do.Anyway my story is I was born so called normal whatever that is.At 7 months old I had a high fever of 105.The dr gave me a medication that isn't on the market anymore,it brought it down to fast I slept for 3 days.I was crawling before I went down.Once I woke up I was using my right arm the left was drawn up.My parents took me to the dr's and they said that I had cp.I started having surgeries at the age of 2.Then at the age of 16 we were told I had a stroke at 7 months.By the age of 37 yrs old I was told I have schizencephaly and water on the brain or a cyst on the right brain.My neurologist took a mri and found it but then told me and said go home she doesn't give me any info I am frustrated by her she does say that I'm doing great but still no answers thats where Deb comes in a least I can call her and find out the truth.Oh yes and by the way I had a daughter at the age of 22 way before I got the diagnoises at that time I never felt better I love being pregnant!!!At least I had one child she does have a pineal cyst on her brain not sure why but have to go back to God for that one he doesn't give us things we can't handle. | |
| Name: REINER Peters | Posted: 2009-09-30 16:30:48 |
| E-Mail: PETERSREINER@AOL.COM | Location: NEW YORK |
| FIRST OF ALL THANKS TO DEBBIE FIELDS FOR RUNNING THIS SITE. SINCE 1997 MY FREQUENT MRI SCANS SHOW NPH. MY SYMPTOMS ARE UNSTEADINESS WHEN WALKING AND DIZZINESS OF VARYING DEGREE. THERE IS NO PROBLEM LYING DOWN OR SITTING. WHEN I RISE AFTER SITTING THE SYMPTOMS ARE MOST PRONOUNCED. OTHERWISE I FUNCTION NORMALLY. NO SHUNT YET. I AM IN THE CARE OF THE TOP NEUROLOGISTS AND NEUROSURGEONS IN THE NY AREA. AT THE BEGINNING AFTER MY FIRST MRI I ALSO HAD A FULL VESTIBULAR EVALUATION WITH NO PROBLEM DETECTED. ONE OF MY NEUROLOGISTS HOWEVER DOES NOT BELIEVE MY PROBLEM IS NPH AND THINKS THAT MY PROBLEM IS VESTIBULAR. MY NPH MAY BE CONGENITAL. IN HIS OPINION THESE VESTIBULAR TESTS ARE OFTEN INCONCLUSIVE OR EVEN WRONG. IS THERE ANYBODY OUT THERE WITH THE SAME KIND OF CONFUSION AS TO THE ORIGIN OF THE PROBLEM.? REINER PETERS |
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