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Our Organization |
Info on Hydrocephalus |
Treatment of Hydrocephalus |
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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: Stephanie | Posted: 2009-06-19 21:12:18 |
| 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. | |
| Name: LAL Sweet | Posted: 2009-06-19 08:03:36 |
| E-Mail: lalsartist@comcast.net | Location: Pennsylvania |
| I am 45 yrs.old, diogonsed with Hydrocephalus and recieved a shunt this past Feb. Yesterday it was recommended I higher a lawyer because I have permant brain damage. Vessells have been damaged over my memory. I feel myself slowing down and struggling. I went for a Masters in Art and I am having trouble painting and preforming creative activities. Hope to regain my drawing ability and maintin daily activity. It appears the desease went to long without being recognized and diogonsed. Very sad over it. I am searching for help to learn how to maintain a normal active life. I am happily married and do not want to be a burden to my family. | |
| Name: Malcolm Spring | Posted: 2009-06-18 03:12:36 |
| E-Mail: malcolmspring@tiscali.co.uk | Location: UK |
| Up until the back end of October 2008, I had been fit and healthy. Late october I had a Subarachnoid Haemmorage which was rectified by coiling. In March this year I began to suffer from various problems such as bad memory, loss of balance and a whole host of other things. It was decided that I needed a vp shunt fitted. This happened around 8-9 weeks ago. Prior to this I had been a keen Mountain Biker and Saxophonist. Since my haemorrage I have only played the sax a few times as I was worried about the pressure build up that would be required in order to play the sax. Are there any musicians out there who have had a VP Shnt inserted for Hydrocephalus? I can't get any info from the medics. no-one seems to have had any experience like mine. I can't believe i'm the only one. Would love to hear from anyone who knows where I can get some real info. By the way, I am 41 years old if that makes a difference. |
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| Name: Ammie Simpson | Posted: 2009-06-09 14:47:10 |
| E-Mail: gygas@gmail.com | Location: Kentucky |
| I have a 7 year old daughter with hydrocephalus, VP shunt insertion @ 6mos. (Said congenital, had forcept/vacum/long deleivery and hematoma 1mo.)Mentally smarter than I, has suffered continually with headaches since 18mos old, CT/MRI all fine. Sept08, Papilldema returned, intracranial pressure monitor showed her brain pressures were fatally elevated, exploritory surgery showed partial blockage of distal cath and was revised. Brain pressure still elevated, dx with psedo tumor cerebri(on top of hydro)taking Diamox. | |
| Name: Sandy Spangler | Posted: 2009-06-09 11:20:40 |
| E-Mail: sandy@stmarkpresbyterian.org | Location: Newport Beach, CA |
| I have a grandson who was diagnosed in utero with aqueduct stenosis - his neurosurgeon is Michael Muhonen, CHOC, CA. He is currently 2 years 5 months, and receiving therapy( OT, PT, feeding and speech), He does not sit unaided, but can roll and help with feeding and dressing (only slightly). He is resistant to any food by spoon, so depends on nutrition thru the bottle. Am asking for advice on feeding issues (seen the nutritionist and is in therapy) - very slight (22 pounds), etc. would love to meet other families in the area that are dealing with the same. I am always looking for things to motivate him, help him physically improve, etc. I am my grandson caregiver on weekends. He is the joy of our lives. | |
| Name: Waylon Godsey | Posted: 2009-06-05 21:56:33 |
| E-Mail: rwgodsey@hotmail.com | Location: Alabama |
| Well, I made my June 4th appt., my new Dr. manually pumped my shunt and said it appeared to be filling good. He expressed a little concern when I told him that it was now 18 or so years old. My first shunt lasted 14 years, with only about 10 or so revisions. With-in 2 years of getting the new shunt, I had several revisions for blockages, disconnections, and a faulty anti-siphon valve but, since then I have had 16 trouble free years. I am now waiting on an appointment for a CT scan. The Dr. said if it turns out ok (although he wasnt impressed with my last one in '05), I shouldnt have to come back till my next check-up. | |
| Name: Tom Wysard | Posted: 2009-05-29 20:02:22 |
| E-Mail: twysard@hotmail.com | Location: Westfield,NY |
| Hi. I've just had Surgery to install a new shunt My other Shunt went 24 Years with one revision. I am 32 Years old. |
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| Name: benjamin torpy | Posted: 2009-05-28 07:22:55 |
| E-Mail: bt11373@yahoo.com.au | Location: gold coast australia |
| hi my name is ben and i have a vp shunt since i was three months old.i currently have a job a family and life that is normal.there is hope yet | |
| Name: Jessi | Posted: 2009-05-27 16:11:55 |
| E-Mail: rebelangel1980@yahoo.com or rebelangel1980@gmail.com | Location: pennsylvania |
| Hello all, I just wanted to let everyone know that I am still here if you need prayers. I know what some of you are going through or will go through. I have had HYDRO for 29 years now and I have had multiple surgeries. The only problems I have are short term memory and joint problems, as of right now. I was born with HYDRO and I have 2 VP shunts. I love to scrapbook and I have played flute for about 19 years and I love to swim and play with my 2 adorable nieces. My HYDRO tends to have a big role in what I can and cannot do, for instance I cannot stand on my head...LOL. when I was younger the doctors told my mother to terminate pregnancy but she told them no, that she would not. she worked with me from day one strenghtening my legs and arms and I learned to walk... a miracle in itself considering the doctors told her that i would end up a breathing vegetable. I went through school with minimal difficulties the only trouble I had was memorization for tests. now I am working and have a semi-"normal" life. |
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| Name: Waylon Godsey | Posted: 2009-05-26 22:38:23 |
| E-Mail: rwgodsey@hotmail.com | Location: Alabama |
| Hello, I am a 32 yr old male with a VP shunt. I currently have a medium pressure, Pudenz-Schulte valve which has worked great for 18 years now. In 1993, I had a 3 blockages and a disconnection but, I have had NOTHING done since then. I am truely thankful for my good fortune however, all these years I have refused to find (much less visit) a new doctor, being how my first one has now retired. After the experiences during my first 16 years, I developed an severe "angst" about going to the doctor, for ANY reason. I tried once to find a new neurosurgeon but, after being alarmed by an initial cat-scan, the new doctor scheduled me a follow-up scan in a couple months, for which I did not show up. After some stern encouragement from Mr. Matthew Hurt, I have now scheduled an appointment with a new surgeon, just as check-up, for June 4th. Please keep me in your hopes and prayers, I will post the findings of my June 4th visit. Again, thanks Matt!. Waylon |
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