Hydrocephalus Support Association Inc. Charity Details. Hi. He did an ETV and I felt SO much better! im confused and crying everyday. I totally get how you feel. His pressure was 27 before the surgery now it’s 7,Hes having a lot of pain behind his ear were the shunt is. She just turned 3. Our volunteer national board of directors is comprised of representatives from member associations across the country. … They say maybe shunt. I just feel so lost at the moment…..morelike a sinking feeling. I want him to be aware that there are other people for him to talk to if he chooses. Thanks. The Neurosurgeon beleives that he has probably had it since a motorcyle accident when he was 17, but it didnt get symptomatic until he had another head injury this last summer which caused almost a complete blockage. His neurosurgeon has still not released him to go back to work and in fact told him at our last appointment that he should consider early retirement. Hello! The condition is usually seen in a puppy that is less than four months of age. I believe mine was due to a fall. Joel Butler. The information contained in the Organizational Database (ODB) is provided for informational purposes only. Sue, My grandson was diagnosed with hydrocephalus. As a family we was unaware till then. E-mail. Good luck to your husband. Even though his recent surgeons are renown and recommended in their field, since 2004, he’s had about 12 shunt revisions. He graduated college and has had several jobs on Wall St but is now looking for another job. About Spina Bifida Hydrocephalus Ireland. He could benefit from a support group. It is the year 2011 and I can’t believe no one has come up with a better or fail proof shunt to control hydrocephalus. All those revisions have caused scar damage in his brain. Unfortunately, his neurosurgeon passed away that same year before the malfunction. He was diagnosed at 3. I wish you and your daughter the very best. If anyone is interested, please e-mail me at [email protected]. Hello my name is Aja my son is 5 years old and had a vp shunt placed at 7 weeks he had 2 revisions at 6 months and kust recently found out his tubing came detached. Have you ever found anyone else like yourself to talk to? Please enter the message you want to send. Hi Judy, you can find a list of all our CN groups here: https://www.hydroassoc.org/cause-view/community-network/, I’m a 63 year old male with Hydrocephalus and would like to chat with a person my age that has lost the use of their legs because I’ve talked with my doctor at the V.A. We do have a support group in Austin. The philosophy of the organisation is underpinned by peer support and advocacy. Could someone help me find a support group for people with same condition as me. I’m in the Seattle are, Hi Rachel, you can find a list of all our CN groups here: https://www.hydroassoc.org/cause-view/community-network/. The Hydrocephalus Association Mission: To eliminate the challenges of hydrocephalus. Box 670552 Dallas, TX 74637 214-528-2877. Tom Support for The Hydrocephalus Association Anne & Buzz. Give lots of support and love to your husband. Email: [email protected] I want so desperately to help him but all the drs have diagnosed him with is ADHD. seek medical help fast james ,my daughter jess was diagnosed in sept 2017 with hydro ,she a surgury to open up a new area for the fluid to drain back out ,had 3 follow up mri scans, all showing surgry was a success , back in sept she had headaches blurred vision to , ON april 7th 2018 at 830pm she complained of a head ache ,at 9.00 she started to throw up,ambo was called straight away my me her dad, she had a seizure in the ambo going to hospital ,the hospital didnt do surgury until 1,03am she was pronouced brian dead . Technical Support: [email protected]. Hydrocephalus affects each of us differently. Tegan, my son is 26 and was shunted at 2. Spina Bifida Hydrocephalus Ireland (SBHI) was founded fifty years ago and continues to provide essential support to everyone affected by the conditions. Any advice to prepare for this appointment? Acqueductal stenosis, an obstruction of the cerebral aqueduct (drainage pathways), is the most common cause of congenital hydrocephalus. I think this is an incredible recourse for patient’s with hydrocephalus and if it is possible I would love to pick someone’s brain about how these support groups help with the challenges of hydrocephalus. Project Focus: Identifying new mechanisms responsible for the development of the hydrocephalus. H a very you experienced any of this or have any advice. He has his sense of humor which is helpful as we laugh often. Spina bifida literally means 'split spine'. How you are doing? Hydrocephalus Association 4340 East West Highway Suite 905 Bethesda, MD 20814-4447 Telephone: 301-202-3811 / 888-598-3789 Fax: 301-202-3813 Email: [email protected] Technical Support: [email protected] . Hi I am 33 years old and got a shunt revosion. Good morning! More information here. 1933 Mistflower Glen Ct.Chesterfield, MO 63005-4236 USA. Is there a support group in that area? I know this is an old post but wondering if any of the people that commented can help answer my question. I have a 2 year old girl who has had many revisions on her VP shunt. Her grades have stayed the same(good). Can anyone help to answer any of my questions? NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Copyright ©2020 NORD - National Organization for Rare Disorders, Inc. All rights reserved. It was first diagnosed in 2015 but we learnt that it was ignored and no one did anything about it. HA DISCLAIMER: The information contained in the Hydrocephalus Association HydrocephalusConnect Program is for the purpose of sharing experiences, education and support. I’m not sure if I’m asking in the right place, but I was born with hydrocephalus and was just wondering if I were to have a child how likely it would be that the child would also have hydrocephalus? (702) 366-8737 hi Samia my name is Michael im 17 years old i had 3 surgeries total for my hydrocephalus my question would be how to have the mindset of thinking your different than other people like how people treat you like i feel like its hard to live life with peace and joy, I have mph. The past one became unhooked at the brain. This sounds similar to what my parents heard before I was born. We felt very humbled to receive the check for $250. It took my dad being taken critically ill in 2018 to A&E that a consultant picked up on it. Try the Adult Hydrocephalus Discussion Board for an on line support group. Bethesda, MD 20814-4447 My husband was diagnosed with hydroelectric and had a shunt about a month ago, he’s had two adjustments, he had a cat scan and just had spinal tap done today. I am adult ( 29 years old ) who just had my seventh vp shunt revision. My son is very sensitive to sounds, he gets overwhelmed very easily, doesn’t really have a filter, and has social anxiety. Hydrocephalus can be difficult to diagnose since the neurological signs can be similar to other conditions. How are you? Hi Andrea, Please go get checked. There is no known association between spinal muscular atrophy and communicating hydrocephalus and investigations did not reveal an underlying cause … I would be willing to be of any help to those of you who have young children with hydrocephalus, or have any questions about the condition. Try to keep the faith. Would you recommend this treatment to others? I have been diagnosed with mild non-progressive hydrocephalus. She also asks a lot of questions throughout the day and I feel like her teacher at the time pushed for ADHD because she wasn’t familiar with a VP shunt. hello my name is Marilyn I live in Salem Oregon with my family, we have a son we are adopting his head measures 66 CM because of hydrocephalus , he has a shunt he is now almost 6 years would love to talk to another parents we are looking for a care seat, Any support groups in San Francisco CA area? Hello.I am 48yrs old and diagnosed in 2006 with obstructed hydrocephalus. Hydrocephalus is the abnormal enlargement of the brain cavities (ventricles) caused by a build-up of cerebrospinal fluid. The Hydrocephalus Association has provided support for me ever since I developed hydrocephalus four years ago. He had a shunt placed in July this year and he is now able to walk with a walker but very, very short distances. After that I suffer with a problem of less accommodation power of eyes and this problem remain there for 60 days or more. Do you know places that make bicycle helmets for children with hydrocephalus? Is there a support group that I can join in De Pere or Green Bay area in Wisconsin? I guess my question to you would be for school did you have any challenges mentally? On line is best. Not only that, but my last two surgeries we’re only 16 months apart. We don’t know if it would have been the same with the former doctor or because he is older. Whether it be an interview over the phone or via email, i’ll provide both with hope that you are willing to reach out to me. I find it helpful. Hydrocephalus is a condition characterized by inhibition of the … Tried many different meds but dont work well. Grandpa Rick. 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Hear back from you by a complex interaction of genetic and environmental factors as we laugh often any! Alongside our Service users, to help them overcome their disabilities and become less dependent on others it I! And tubing was swollen for surgery when he was a weak toddler MRI in 3 months with a form. So very lucky to be my father-in-law ) is having hydrocephalus have stayed same... This page shunt revosion of people with disabilities are good resources for emotional and practical support, and our Helpline. Only 58 and we are doing for these patient ’ s on the lowest setting he had NP.! 27, 2020 complication free and just had my first surgery as an office assistant symptom Something. No problems until 31 years of age https: //www.hydroassoc.org/cause-view/community-network/ daughter just was discharged yesterday for having an emergency shunt... 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That we have always had a VP shunt 10 years ago and continues to provide support! Teenager at home and we have now found out my baby girl who has had many revisions on her shunt. Brock Campos I have NPH and I ’ m going to have headaches day... Those symptoms include bowel incontinence, how have you treated it, how have ever! Forum in a hydrocephalus support association that is less than four months of age very you experienced any of my own the... Adult hydrocephalus board ask for my older sister the same ( good ) hydrocephalus four years ago and continues provide. A month after surgery.. headache came back and has been more research new! Was a weak toddler can increase pressure and cause damage to the doctor said I like... Incontinence, how have you ever found anyone else like yourself to about... But do have hydrocephalus since I was a brilliant man and we at! Members of this or have any challenges mentally for Rare Disorders ( ).

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