National Hydrocephalus Foundation


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The 2009 Hydrocephalus Survey results are posted!
Please visit the Survey Results section for more information.

Our next Hydrocephalus Conference will be held in Spring 2011.
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Guestbook

WELCOME TO ALL VISITORS!!

Perhaps you have come here to find a person or family in a similar situation, or you'd like to make a post to share with all of us. HOWEVER, should you read a post and wish to make contact with the writer, please use his/her personal e-mail address, which is listed on the post entry. Please, do not make a reply to that person by using the guestbook as many times people do not re-visit on a regular basis. Thank you.

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Name: Melissa	Posted: 2010-04-28 22:38:03
E-Mail: burns.ma@rhodesstate.edu	Location: Ohio
There is a web site www.medscape.com that offers a lot of information on Hydrocephalus. You have to get a membership but it is free. I am also in collage and I get many article from that site. It also offers fundamental drawing or CT scans that you can use in a power point. I was wondering what signs your son had when his shunt had to be replaced because I have a nephew who was born with Hydrocephalus. He is now 10 but has occational headaches. With neurologists so far away, he only sees his every 6 months and I am trying to convince my sister that headaches are a sign that his shunt may need to be replaced. It is 10 years old. Melissa

Name: Cathy Helms	Posted: 2010-04-28 19:13:57
E-Mail: turkey_chick2002@yahoo.com	Location: Bainbridge, GA
I am 26 years old and was diagnosed with hydrocephalus last year. I'm just soo frustrated! I suffer from moderate to severe headaches almost everyday. Any replies and/or encouragement would be greatly appreciated!

Name: Norma Winters	Posted: 2010-04-26 17:06:41
E-Mail: angelpaly@yahoo.com	Location: Robinson, Il
I just wanted everybody to know I am going to do a essay on Hydrocephalus for college. My son has had it since he was newborn and is now 28 years old. We have been through many hospital stays and have really had a tough time with his sunts when he was little. His last revison was when he was 12 years old so his present shnut has lasted him many years. I just feel like I need to write about Hydrocephalus as so little is known about this "Disease" as my son calls it. I was wondering if anybody knew where I could get some good information to put into a power point slide show for this week's assignment. I have two weeks to write my eassay and have to have the power point in by May 2. Any help would be appreciated. Any parent dealing with this I know your pain. I wish you God's speed and never give up. Norma

Name: Kelli	Posted: 2010-04-21 20:37:06
E-Mail:	Location:
I was diagnoised with hydrocephalus at 3 days old after I had a stroke. I had my shunt put in at 3 months old. I have had the same shunt 22 years with no revisions. I found out about a year ago that my shunt had moved and was no longer in the ventricle and that my fluid was draining off of my brain! this has amazed my doctor he still wants to see me every year to make sure that everything stays the same.

Name: Sheri Burdine	Posted: 2010-04-08 23:28:58
E-Mail: sheriburdine@wmconnect.com	Location: Texas
Hi everyone! I am so busy running my own support group organization I seldom get to come out and play :) I have had hydrocephalus since I was 11 yrs old. I founded Hydro Angels Over Texas in 2008 and invite you to visit my site and if you live in the San Antonio area, please know I am here for you too. I wish you all happiness & working shunts! www.HydroAngelsOverTexas.org

Name: theresa	Posted: 2010-04-04 16:27:23
E-Mail: theresamcdade@ymail.com	Location: linthicum maryland
my son was diagnosed at age six months old! he had a shunt put in and at eight months old he had to have a revision! at two years old he had to have reconstructive surgery! he had another malfunction in sept of 2009 and is currently dealin with issues of a malfunction due to his venticles bein so small it is causin it to clog! anyone want to join a group you can on facebook look it up and also if you want to stay in touch with our family you can reach me at theresamcdade@ymail.com i am currently tryin to set up at blog and a website

Name: cheryl rice	Posted: 2010-03-31 17:35:55
E-Mail: csb-74@hotmail.com	Location: waterlooville, hampshire united kingdom
i was born with hydro in 1974 and had my 8th brain op 2 months ago and would like to know more about it as i am still learning about it thanks

Name: Peggy L Leatherman	Posted: 2010-03-27 15:56:53
E-Mail: leathermanpeggy@yahoo.com	Location: Hershey, PA
I have NPH with a shunt in place since 2006. I was diagnosed with Deseminated Coccidiomycosis Meningitis in 1991 after living in the dry area of Southern California. I now reside back in my home state of Pennsylvania and because I am a veteran all my doctors are at the VA. Because my situation is so rare most doctors don't know how to treat me and that bothers me. So if there is any information that I can give them to better handle my case it would be greatly appreciated.

Name: Mary Jo Miller	Posted: 2010-03-26 10:42:55
E-Mail: maryjo_bennett@yahoo.com	Location: Darien, CT
Hello, My 9 1/2 month old son was diagnosed with benign external/ventricular communicating hydrocephalus at 4 months of age. Interestingly, an MRI at 2 weeks old did not show anything but his head continued to grow. To this point, his neurosurgeon has not seen the need for a shunt. He said in many cases the fluid will begin to absorb itself by 2 years of age. However, my son is experiencing gross motor delays. The neurologist thinks that there is something going on neurologically that is causing these delays. He does not actively roll, has low muscle tone, does not crawl, and can barely hold himself in all fours. I am very concerned. Can hydrocephalus cause neurological issues that would be the cause of these delays? He goes for another MRI (his third) on April 5th. I don't want to put in a shunt unless absolutely necessary. What if they do shunt him and she still has these delays. Then the shunt was useless and yet he will have the complications from it for a lifetime. I'm so concerned, worried, sick to death over this. Thanks for your help.

Name: Abby Vickers	Posted: 2010-03-24 12:25:59
E-Mail: xox_abby_xox@hotmail.co.uk	Location: england
im thirteen! and been searching for someone the same as me to talk to! ive had it from a baby but resently had ops beacuse of it. i had a VP shuunt but it had grown to short for my body as i had it from 6 weeks old. i had an ETV fitted but it failed. soo i had an another VP shunt fitted but the end of it was placed wrong in my stomache so i had it taken further down. and i now have no self confiedence and feel soo much different to my friends. and i wasnt like this before the ops i had alot of self image but now i think im ugly and a wierdo. so please anyone i just wanna know if anyone else feels the same. thanks.

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