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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: Linda Tribuli | Posted: 2009-08-01 09:03:33 |
| E-Mail: Tweeti6095@aol.com | Location: New York |
| I have not been on here for awhile. I was in the hospital for other reasons. I had shunt surgery almost 2years ago. So far everything is good. My eye sight is stable. No problems with the shunt. I was told when I was first told I had Hydrocephalus I was shocked. A simply cat-scan of my sinuses showed it. I was told to get a second and third opinion. The second and third said if it's not broke don't fix it. 2 years later i couldn't walk, the symptoms were getting worse. So i went back to the first surgeon, and they did the surgery right away. So far I am doing well. I also wondered how long these shunts last, or if they ever have to be revised. Could you just be on of the lucky ones, that all stays well. I wish everyone luck. I am so glad I found this site 2years ago. It's been very helpful. Thank you for all the help you have given me. | |
| Name: george king | Posted: 2009-07-20 00:43:07 |
| E-Mail: GMKING1234A@AOL.COM | Location: SANANTONIO,TEXAS |
| DOES ANY ONE KNOW OF A SUPPORT GROUP IN SANANTONIO,TEXAS OR AUSTIN ,TEXAS AREA | |
| Name: Morgle B. Snurd(The "B" stands for Bartholomew) | Posted: 2009-07-06 07:55:39 |
| E-Mail: morglebsnurd@yahoo.com | Location: Anchorage, AK |
| Let's see, I was born w/hydro. in '54 Never really had any problems till a Tailgate of an army truck knocked me out in Sept '75.Went from being recommended for reenlistment to Barred from Reenlistment.NEVER had H/A until after the truck t/g hit me.Then had h/a 24/7/365 Was never diagnosed w/hydro until '87.When they first did the CT scans in the hospital,they would not let me leave until I had spoken to my primary doc.My Vents were so screwed up they were worried about me leaving the hosp. Vision would "Blink",20/400-20/10 like snapping your fingers. ANYWAY,in 5/87 after the med pressure VP shunt,symptoms cleared for 5 months...then they started coming back in.In 12/87 they showed back up,and I had a Low Pressure Holter Valve installed.and they cleared until the late 90's. So much minutia,anyway there is HOPE...just keep plugging. Ohh,and as far as the disability goes?? Get you a GOOD attorney....beleve you me it is worth the 25% you will pay him of you Social Security winnings. Also,in N.C. they use to tell us that SS would ALWAYS turn a person down the 1st time to discourage people from persuing their case.Don't know if it is still true. Hope y'all can decipher my ramblings. Morgle B. Snurd |
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| Name: Matt Hurt | Posted: 2009-07-05 19:20:57 |
| E-Mail: mwh_21@yahoo.com | Location: Michigan |
| I was just wondering if someone can email me to let me know if I would qualify for Rehabilitation Services to help me find work in Michigan. Also if anyone is aware of any kind of work restrictions that we may have having hydrocephalus. Thanks | |
| Name: Jessi | Posted: 2009-07-01 16:43:21 |
| E-Mail: Rebelangel1980@yahoo.com | Location: montoursville, pa |
| Hi all, I will continue to pray for all those who wish for me to pray for them, just email me and let me know. I was born with hydro and know what it is like to go through surgery after surgery and not feel any improvement but I am my doctors walking talking...never shutting up miracle!( he said I would be a breathing vegetable...worse case senario) 4 months ago I got a job working at lycoming college in food service...yes, I am a lunch lady but thank God I dont have to wear a hair net instead I wear a black ball cap. I work the breakfast and sometimes lunch shifts but at least its money in my pocket for a while. not much else to report today, Blessings, Jessi |
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| Name: Keith Johnson | Posted: 2009-06-30 01:49:13 |
| E-Mail: keithjohnson2936@sbcglobal.net | Location: United States |
| My name is Keith and some of you may have read my earlier post on this web site about me and my story of hydrocephalus. Well I have a question to anyone out there that can answer it for me. I am wondering if a person who has hydrocephalus can be cured of it. The reason that I am asking this question is because about two years ago I went to a clinic in my city for a regular exam and I told the doctor about my condition, (hydrocephalus) and he asked me when was the last time that I had anything done to the shunt. I told him that the last time that I had anything done was in May of 1978. Well he was very surprised to hear that. He said that shunts usually don't last that long without something going wrong. Then he said that it may not be working, meaning that I may not need it any more. Can anyone out there verify that for me? Thank you in advance! | |
| Name: cindy | Posted: 2009-06-24 23:31:55 |
| E-Mail: cgs4420@yahoo.com | Location: virginia |
| I recently was diagnosed with suto tumor or hydro. My symptoms were so confusing. I feel very out of control. I can't find any information on the net about suto tumor or how it begins. If you know of a site please e-mail it. This site has offered me the most comfort that I have found. Good luck to all and hope to hear from all interested. cgs |
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| Name: Stephanie | Posted: 2009-06-19 21:12:34 |
| E-Mail: Kalebluvsmomma@yahoo.com | Location: Calif |
| My name is stephanie and recently my brother who is 23yrs old. got into a horrible car accident with his girlfriend. They survived and thats all that is important. However, He up until the accident was as normal as can be. No problems whatsoever. He is in the hospital recieving care and they did a CT and MRI. They said that he has Hyrocephalus. Of course anything that has to do with the brain is intense. But the advice of the Neuro-surgeon was " if it ain't broke, Don't fix it" I myself aint to satisfied with this remark. He doesn't remember getting into a car accident. Or that he went to check on his girfriend 2 mins ago. Knowing my brother for his whole entire life I think that its fair to say that we should know if he was acting different or if he is a cause for concern. They said that this condition appears to be something that has been there for a while and not something that was caused by the accident. But it did aggrrevate it and now caused him to have some type of symptom. I don't want it to just go untreated and then it progressively gets worse after he leaves the hospital. Is this that typical for dr.s not to feel that there is a priority for surgery? Or is it just that he don't have INS!!! and the shunt would be too costly? I Don't know what it is but if there is anyone out there that has experienced something like this. I would appreciate some insite. | |