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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: Deborah Rabot-Riker | Posted: 2010-09-08 13:08:27 |
| E-Mail: stevenriker@ymail.com | Location: New Mexico |
| I am my husband's caregiver for the last 12 yrs. My husband has an inoperable mid-brain cyst which causes him to have Hydrocephalus. He has a MedTronic Programmable Magnetic VP Shunt since 2004. He also have degenerative discs in his Thoracic and Lower Lumbar regions of his spine. He suffers daily chronic headaches and neck pains. He describes to me that his headache pain radiates the entire region of his head, primarily on the left side, and it moves down to the back of his neck and to the uppermost part of his shoulders. His headaches are at a constant level between 5-6, and most times 8-9. He describes the pain he feels are primarily on the left side, but it's normally: behind the eyes, in the nasal cavity, frontal lobe, (forehead), top of his head, behind and around his ears, to the back of the neck, and to the uppermost part of the shoulders. He has undergone two nerve blocking sessions only to find no relief. He has had many CT Scans and X-Rays which came back clean with no sign of infections / abnormalities. The prescribed medications of narcotics for pain relief is becoming ineffective, and the doctors in the town we live are not of any help, except to prescribed more meds to mask the pain. There was never a mention of anything else that can be done for his neck and back pain other than fusion surgery, which is further from what my husband needs. Anyone who reads this posting and lives in Davis, Sacramento, CA, or the nearby surrounding area, who can recommend a quality Neurosurgeon who has a high rate ranking with patients, who has a great bedside mannerism, is compassionate, whose dedication, knowledge, and special interests are in Hydrocephalus, Cerebral Spinal Fluid, and Shunts, please contact me via email. My husband needs to have further medical attention to receive the proper care to his medical condition, disease, and the correct diagnosis of underlying issues that's causing him to have continuous daily pain. Thank you to all who will give me the assist I am looking for. |
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| Name: Regina | Posted: 2010-09-04 14:12:51 |
| E-Mail: owensregina31@gmail.com | Location: Northern Kentucky |
| Hi my mane is Regina and I am married to a wonderful man who has Hydrocephalus. He had a brain tumor as a baby and it caused him to have hydrocephalus. He has had a number of surgeries and was told last time he would have to have at least one every ten years for the rest of his life. I worry about him alot because he won't try to get help when his head starts to hurt. One time, not to long after we first got married, he was not feeling well so I guessed he had the flu. It got so bad that he could not even talk or walk. I rushed him to the hospital and he had emergency surgery that day. Even with all that and the doctors telling him he could not let it go so long again he still will not tell anyone when his head hurts. I don't know why because he knows it's not going to go away but it's like he can not process to ask for help. When I ask him questions about it he gets real moody and hard to be around. Does anyone have any ideas or suggestions because I'm at a lost for what to do and the doctors don't seem to want to answer any questions. | |
| Name: Ron Patrick Kelleher(HydroPioneer) | Posted: 2010-08-24 16:08:46 |
| E-Mail: rkelleher2@netzero.net | Location: Canada |
| I found this site to be very informational. Having been born with this condition when I was born in 1962 not much of was new to me. I have uncovered some things like our effects of it during a full moon or flourescent lighting along with other interesting stuff.I can be found on facebook which I have dedicated my page to this e-mail me & I will shunt you aboard. I have managed to put together a listing of close to 1600 people with hydrcephalus & I have managed to find others living in close proximity and if you wish I can do the same for you. | |
| Name: chester | Posted: 2010-08-19 11:16:38 |
| E-Mail: walker24@cox.net | Location: sapulpa ok |
| hello i am writing this becouse for the past 5 years my wife has been complaining about headaches and also having problems with abdomin then problems with the abdomin come and go but when thay accur the headaches seem to lesson but she looks pregnent she has had nurses ask how far along she is. but she has a programable shunt put in about 7-8 years ago. before that i think she has had a couple of replacments but she was fine untill the headaches started. we have gone to the ns and done countless mris and other tests and no info as to couse the headaches are at her shunt area and she can not lay on that side of her head. she has taken loratabs for 5 years now with little help she started haveing sezures where her hand would shake thay put her on meds for that. but i would like to know what could be the problem the doctors say the sunt is working fine mri xrays shuntagrams and all say normal but i know something is not right becouse for a few years after the shunt replacment no problem and now headaches that couse her to take her pain meds like pezz and i think she has bult up a tolerance for the drug and it is no longer working properly |
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| Name: Lorna Lamsa | Posted: 2010-08-18 16:20:55 |
| E-Mail: lornalamsa@verizon.net | Location: Central Massachusetts |
| My mother, 85, had a shunt placed 3 weeks ago. Since 1999 she had suffered with a diagnosis of lymphodedema of both legs and feet. Within 4 days of receiving her shunt, her legs and feet returned to normal size. Doctors have no explanation of this and I would like to know it anyone else has had this experience. She is doing very well, is walking, her cognition is excellent, and she is becoming more confident with balance. | |
| Name: Evelyn Mynk | Posted: 2010-08-16 19:22:54 |
| E-Mail: mrsmynk@hotmail.com | Location: Bullhead City, AZ, USA |
| Have 11 day old son with congenital unilateral (Right) hydrocephalus, detected on 38 week ultrasound. He was shunted (VP) 8-7-10 at 2 days old. All seems well so far, just looking for some more information and some families who can relate to our situation for support. | |
| Name: Pavlvz Ioannez Antoni | Posted: 2010-08-16 13:10:27 |
| E-Mail: sky.tarigan@yahoo.com | Location: Indonesia |
| my son, had hydrocephalus since he was born 14 years ago. he have not medical treatment yet, cause after seven months age the doctor said he had normal. Now, he fill headache sometimes and doctor said he need special treatment. Please, give us some advise.. Thanks |
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| Name: Renee Higgins | Posted: 2010-08-14 15:17:45 |
| E-Mail: rhiggins3@woh.rr.com | Location: OH |
| Hello, i hate going public but I have a problem. Myself and my two sons have a rare syndrome, Robinow.My last sons was so pronounced they shunted him around 1 or 2 Im 40 and other son is 20 and i think we both have it. Symptoms getting bad for me how long is too far gone to fix and how long are we going to live without shunt or management? | |
| Name: maureen giangan | Posted: 2010-08-14 09:51:06 |
| E-Mail: maureengiangan@yahoo.com | Location: cainta, rizal phils. |
| dignosed to have a beginning hydrocephalus | |
| Name: David Jarrett | Posted: 2010-08-13 10:13:19 |
| E-Mail: fatshot@charter.net | Location: Reno, NV |
| Looking for best surgeons and facilities for NPH tx. Would like to find those experienced in both VP & LP shunts, and ETV. If anyone has experience with centers or surgeons near Reno, NV, I'd like to hear about it. | |