Helpline: Free One-on-One Support
It’s not uncommon to feel overwhelmed when dealing with a chronic medical condition, and we want you to know there are resources available to you. The Hydrocephalus Association provides programs and support services to connect you with peers, volunteers and medical professionals.
We provide one-on-one support, so please contact us:
Our toll free hotline: (888) 598-3789
E-mail: Info@hydroassoc.org
Our staff shares knowledge that comes from personal experience with hydrocephalus and from talking with people who live with the condition. Our Medical Advisory Board is comprised of clinicians and scientists eager to answer your questions, speak to your concerns and share their knowledge of hydrocephalus. Expect a listening ear from staff and access to informed and current resources to help you understand and deal with the complexities of hydrocephalus.
HA Resources
HA WALK
Join us as we walk to spread awareness and raise funds to improve the lives of individuals affected by hydrocephalus. These one day events held in cities across the USA are a great way to meet others in the hydrocephalus community.
Community Network
HA’s Community Network provides opportunities to get involved and connect at the local level. Our local networks host educational meetings, support group meetings, family fun events, and advocacy activities. Visit our Community Network page for information about your local Community Network.
Teens Take Charge (TTC)
Teens Take Charge (TTC) teaches teenagers and young adults who are affected by hydrocephalus to advocate for themselves specifically with health professionals and with their legislators. If you are between the ages of 12 – 25, visit our TTC page to learn more.
Publications
HA publishes a variety of resources that provide current, relevant information about research, medical technologies and protocols, and educational resources. Our publications have been reviewed by medical professionals, giving you a trusted source for information.
Other Hydrocephalus Resources
Reach out to other organizations and hospitals for valuable information and support for individuals living with chronic medical conditions. Click here for resources for parents and teens. Click here for resources for adults.
I am 75 y.o. retired MD I am experiencing progressive memory loss with mild urinary incontinence for the past 10 years. I consulted Dr. Crocco of the U of Miami who ordered a brain MRI. The brain MRI showed Normal pressure hydrocephalus. Before I visit again Dr. Crocco I kindly request your recommendation for me to visit the best neurologist and the best medical center that I can visit and consult in my case.
Hi, I was diagnosed at 18 with arrested hydrocephalus due to aqueduct stenosis, for 26 years afterward I was asymptomatic. Now I started to have symptoms but they come and go. Is this frequent?
Hi my 16 yr old daughter was just found to have this. I’m so upset. She don’t need no emerg. Surgery but she gets headaches never knew she had this. Hope yr feeling ok
My son is suffering from the disease of hydrosifalus as my economical condition is not sufficient to provide the treatment so I want that expense of this treatment is provided by your foundation agency. So please grant me the treatment amount from your foundation agency sothat i would provide the treatment.
Hello,
Thank you for reaching out to us. Unfortunately, we are not able to provide financial assistance for medical care/treatment. I would like to suggest you reach out to the following organizations which I think you may find helpful:
International Federation for Spina Bifida and Hydrocephalus
Cellebroersstraat 16
B-1000 Brussels
Belgium
Tel: +32 (0)2 502 0413
Fax: +32 (0)2 502 1129
E-mail: info@ifglobal.org
Website: http://www.ifglobal.org
Cure International
By mail:
CURE International
701 Bosler Avenue
Lemoyne, PA 17043
By phone: 717.730.6706
By fax: 717.730.6747
By email: info@cureinternational.org
Website: http://www.cureinternational.org
Hope this is helpful. You and your child will be in our thoughts and prayers. Have a wonderful day and fantastic rest of your week.
All the best,
Support and Education Team
Hi,
My brother is 3 year old and wasn’t gone through operation. Right now he is on coma due to hydrocephalus. He can respond through blinking with his eyes however sometimes they can’t find his pulse and his heart rate can be high or low. This time he have fever and has alredy been to 2-3 seizures. We don’t know what to do, we’re losing hope. Can we get some help with you ? Please ! I don’t want my brother die.
Residing Philippines
Hi,My 11 months old daughter was diagnosed with hydrocephalus when she was 18 days old.This is as a result of convulsions, and meningitis sepsis. And before 6months she had 4 operations of vp shunts. This is so hard and challenging
Hi
I am currently looking for a new neurosurgeon for my 17 1/2 yr. old son. His shunt is currently designed to be sustained where it’s externalized exiting through his left lateral side and draining securely into an EVD bag. He is still able to play and move fine with the bag secured to his side. His physician moved out of state.
Residing in Michigan.
Hi Tienesha,
have you tried our Physician Directory? We have a couple of doctors in Michigan, you can check which one is closest to you here: https://www.hydroassoc.org/physician-directory/.
I had my shunt placed half my life ago (I was 16). The first one malfunctioned within the first 4 weeks, but so far so good with this 2nd one! What feels how adhesions always did, my neuro surgeon says wouldn’t be adhesions anymore, but he doesn’t know what could be causing the sensation at this point. It hurts though and I just want this thing out!! I’m SOOO tired of all the unanswered questions.. And paying $370 just to be told, “I don’t know!”
Hello sir this is nafees Ahmad from India my son is suffering from hydrocephalus since his birth once he has undergone the surgery and put a VP shunt now symptoms showing again plz help me my contact no is +919897369797
I had a shunt put in a month ago. My symptoms had diminished considerably. Other people have noticed the change in me, even before I have. I am 68 years old.
I had a shunt put in a month ago. My symptoms had diminished considerably. Other people have noticed the change in me, even before I have.
My mother exhibits the triad of unexplained symptoms, the initial gait disturbance, mild dementia and now finally urinary incontinence but apparently an absence of enlarged ventricles. Should further investigation be done? My mother’s doctor who is not a neurologist but a GP says she has ruled out NPH. I do not agree. I would like to know if enlarged ventricles are always evident? Do the triad of symptoms which are unexplained and of which the first dominant symptom of gait disturbance warrant further investigation. And should I demand a lumbar puncture and a copy of her Ct scan?
My father (age 76)
Exhibits same symptoms.
Also is it possible to rule out NPH with just an MRI
Considering that’s how mine was blarringly diagnosed and I have to have one with and contrast every other year now, I would assume so!
Does anyone know of a good subacute rehab center after a shunt procedure in New Jersey. Need to find an inpatient facility.
my mother has it and three weeks after inserting a shunt she developed seizures.She couldnot talk or move and was in ICU.Is there a cure for the seizures.The doctor says its normal
Is their a support group for young adults in Oklahoma
I was born with cognitive? hydrocephalus.Also pre-mature;1lb. 11 oz. Had several operations as a newborn. Been in the hospital several times. Also had several health problems relted to my hydrocephalus:Eye problems;and other health issues. Had a twin;he passed on a few months after being born. Next month will be seeing a Neurologist for a specific test. Had a brain test in 1983 with wires glued to certain points on my head. Recently had a CT Scan where this futuristic spacelike machine takes pictures of my brain while lying flat. I was thinking of a particular science-fiction movie:Altered States in my subconscious. Requested a copy of the results. Similar to the first test I had?
Hi Jon, I’m curious how old you are. I”m 52 and I have Hydro. Lots of stories! I’m just curious to see how many people there are in my age range with congenital Hydrocephalus.
Hi,
I am from Uzbekistan, I have a daughter, she is 3, she is hydrocephalus, she had 2 opearations 2 years ago. First was unsuccessful and after 6 months she had second one. She can`t walk and can`t speak. Nowadays she has strong trembling. she drinks stong medicine to stop trembling. Her head isn`t big, I sure you can help me and treat my daughter beg you help me to treat. I am ready for all kind of payment.
All the walks seem to be in America
Is there anything in the uk (London)
I have NPH. I had a surgery to put VP Shunt about 5 years ago. I have heard that there is federal protection (from discrimination) for people with this disease.
What do you mean by Federal Protection for this particular brain disease.
Hi,
My friends wife has this. How can I get some local info to help him?
Living in Tampa Florida now.
Thank you.