This fantastic Nonprofit, National Hydrocephalus Foundation, has helped educate me about hydrocephalus. I turned to them to learn more about it because my girlfriend told me she was born with hydrocephalus. Debbi Fields is always ready to answer any questions and is so enthusiastic! The newsletter is fantastic! Michael Fields writes informative, easily understood articles. The newsletter taught me about the challenges facing people with hydrocephalus and about their fears. I am very grateful to this wonderful group of caring folks, the national Hydrocephalus Foundation!
After being diagnosed with NPH at the age of 79, I could find no information about the condition, not even from doctors. I found the National Hydrocephalus Foundation on the internet. I was invited to attend a support group meeting where I met Debbie Fields and others who had had great success with the programmable shunt placement. I was referred to a group of neurosurgeons and was encouraged to go ahead with the shunt placement. I have continued to receive encouragement through support groups, newsletters and personal contact. I will be celebrating my 84th birthday this week, and believe without the support , information and encouragement I received from NHF, I would not be here to tell the story.
As a social worker in the field I have referred patients to this organization and they have always received help in a timely and respectful manner.
At age 42 I went in for a cat-scan of my sinuses. The techician sent the report to my doctor. My doctor told me I had hydrocephlaus. At first I said what it that?. He explain to me what it was. There was a possible chance that I needed surgery.
I went home in shock. I told my mother that they were going to drill my head. This was a very scary thing for me. I was told that when I was 10 and got hit by a car, this was the reason for having this. I had problems in school. I couldn't hold my bladder. My walk was way off. I thought my walk was from having arthritis.
I was sent to a neuro-surgeon who comfirmed it. He told me to get another opinion. So I did. I got two. They both told me if it's not broken don't fix it. One didn't even want to deal with me. I was in an out of his office in 10mins after him reading the report.
I decided to wait. My doctor felt the surgery should have been done right away. At age 46, I started to walk on my tippy-toes. My eyesight was changing. My balance was way off. I than went back to my first neuro-surgeon and he said why didn't i come back. I was scheduled a month later for surgery.
I found this organization online. I had no clue what I was in for. I had no idea what the surgery was about. I learned it from the nice people of this orgainzation. With out there help I would have gone into brain surgery blind-folded. I learned all I could from there site, so I would be educated going into this. I am very grateful for them and what they stand for. Also for all the help they give people like us.
I am now 3years after surgery. I am doing ok so far. My walk was due to the hydrocephlaus. I walk heel toe now. I always walked with a limp. So this was very strange to me. I can now hold my bladder with no accidents. My eye sight after 3pairs of glasses has stabilized. My balance is still a bit off, but not as bad as it was.
I feel this orgainzation is an asset to the public. Without them I don't know what I would have done. I read everything I could on this condition. They also called me personally to speak with me. They also made me feel very comfortable, and answered all the questions I needed to know. With their web-site it gives others like me the opportunity to learn from others. I am totaly grateful for them and the knowledge they have and given me.
Thank you so much for all your help.
A fantastic organization that gives you honest facts and information about hydrocephalus. The information isn't always the most politically correct. They often verify what you believe to be true contrary to what other hydrocephalus "experts" are telling you. For example, I wanted to know if airport scanners can reset a programmable shunt. Everyone one else who I spoke said it could, but it's not proven. Debi Fields, the director, told me that she's received too many phone calls from people who have ended up in the emergency room after flying. So she believes it's true.
Debi Fields is a wealth a knowledge and will spend as long as you need answering and asking questions. She digs deep.
My daughter was born with bacterial meningitis which caused her to have a stroke and seizures and hydrcephalus. She has a VP- shunt. She has been through 4 revisions. She struggles with headaches and dizzy spells and memory issues. Bella is now 12 1/2 years old and going into the 7th grade. She is finally on an IEP at school which is getting her the help she needs to succeed in her school work. She has been through extensive threrapy, PT, OT and speech. I have joined this organization a few years ago and would love to meet thes great people in person but I am here and they are in CA. I have emailed and the responce is fast and very helpful. I have had questions about my childs health and the answers were always the most helpful and accurate.
I turned to this organization for information and advice regarding locating knowledgeable medical professionals when my Father was diagnosed with Normal Pressure Hydrocephalus. Their compassion and understanding were memorable and their assistance in locating appropriate physicians was invaluable. They were always available to answer questions and offer guidance from a real life perspective, and greatly aided us in working to effectively address the numerous issues presented.
National Hydrocephalus Foundation is a non-profit organization devoted to helping people better cope with and understand both childhood hydrocephalus and adult onset hydrocephalus. The organization is based in Lakewood, CA and has board members all over the United States. We help educate people so that they can make better informed decisions, and we help them by giving advise, connecting them to doctors in their areas who deal with this illness, offering emotional support whenever needed. For years this disease was known as "water on the brain", so now we are trying to get people to identify with the illness and its name. We also have information on other birth defects, and on lifelong illnesses that seem to go hand in hand with hydrocephalus (like spina bivida, and Chiari Formations).
Review from Guidestar