He has on 10% of his memory because of the severity of his hydrocephalus. I have searched for a support group in the Las Vegas area and did receive a reply to an email from Tom Tronsdal after trying some other email addresses listed with no response. He has never had anyone to talk to who has gone thru this. 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. About Spina Bifida Hydrocephalus Ireland. There is! Kicking, spitting etc. of the source is given. A general physical 3. Thank you. H a very you experienced any of this or have any advice. Bethesda, MD 20814-4447 I was diagnosed at 2 months. This section helps you understand the needs of people impacted by hydrocephalus and how you can support them. If those symptoms include bowel incontinence, how have you treated it? I owe all of my credit and honor to God who has healed me because I am in good health now, as well as my neurologist here in Michigan Dr. Sandeep Sood, who did an amazing job in preforming life saving operations countless times. Hi I am 33 years old and got a shunt revosion. Is there a Facebook like support group where I can be involved via the internet. No shunt or any procedures yet.Was told by 2 out of 3 neorosurgeons I could wait since I am largely asymptomatic exceptfor some headaches. All you have to do to join is to donate $25 to my Hydrocephalus Association fundraising page: INSERT YOUR WALK PAGE LINK. There is no implied endorsement by NORD. I wish I could just be inside this lil boy so I could feel. I will be looking for a place of my own in the near future. If so where and how do I contact them? She became a RN Nurse after the birth of Leland. Telephone: 301-202-3811 / 888-598-3789 Hydrocephalus Association Support Groups are off to a great start this year. please support 'hydrocephalus association'. I just don’t want to miss anything that can help Leland. Please can you help me find support groups and possible meetings with others in the Seattle, WA area?! He had it for 24 years without any incident. People with hydrocephalus can be affected by their condition in a number of often subtle ways. Log in. I am irrationally scared that I’m going to forget him or he’ll be scared of Mommy’s new stitches. Licence Number: CCP3194: Expiry Date: 31/12/2099: Licence Status: Current: Licence Class: SECTION 6 (ACNC) Charity Name: Hydrocephalus Support Association Inc: Trading Name: Trustee Name: Contact: Ms Wendy Brown 85 Gloucester Road Hurstville NSW 2220 I’d love to help anyone who has any questions about having a shunt:). Important research that will improve lives and ultimately cure hydrocephalus. 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. In order to eliminate the challenges of hydrocephalus, we must strive to make hydrocephalus a household word; and by connecting with each other in groups, we can share and support one another allowing us to deal with shared concerns. I was just wondering how long I should expect to wait to see if there is an improvement in her symptoms (if there is going to be improvements). I am available through email if you have any suggestions. #hydrostrong (include picture of yourself showing one of the rocks) Happy Hour with Friends Set up a special virtual happy hour for hydrocephalus … How you have learned to live with this? The association is a registered charity. 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. A diagnosis of hydrocephalus is usually based on: 1. I think the work you guys are doing for these patient’s is incredible, I really hope I hear back from you. Education. … Normal pressure hydrocephalus (NPH) is a condition that is caused by an abnormal build up of cerebrospinal fluid (CSF) in the ventricles (cavities or spaces) of the brain. At only 4 months old, surgery was performed to place a vp shunt. Any advice to prepare for this appointment? Is this a common symptom, something she may live with?? I hit my head pretty hard I have had 1 surgery that did not drain the fluid. If we had a nickel for every time someone said they've never heard of hydrocephalus, we would be able to fund limitless research ... Hydrocephalus Association 4340 East West Highway Suite 905 Bethesda, MD 20814-4447 Telephone: 301-202-3811 / 888-598-3789 Fax: 301-202-3813 Email: info@hydroassoc.org Technical Support: webmaster@hydroassoc.org. Hydrocephalus Association 4340 East West Highway Suite 905 Bethesda, MD 20814-4447 Telephone: 301-202-3811 / 888-598-3789 Fax: 301-202-3813 Email: info@hydroassoc.org Technical Support: webmaster@hydroassoc.org . I just feel so lost at the moment…..morelike a sinking feeling. Can you explain a little more your symptoms? In 2004, it started malfunctioning, so we said, time to replace it. Is it normal to have headaches all day everyday with no going away? The Hydrocephalus Support Association (HSA) is a not for profit organisation whose core mission is to support people with hydrocephalus and their families to overcome disadvantage, strengthen their abilities and successfully live independently. My dad was first diagnosed with Parkinson’s, I the end it worked out that he had NP Hydrocephalus. NORD is a registered 501(c)(3) charity organization. Some symptoms may not go away. It is a community that listens to my worries and strives to answer my questions about living with the condition. I totally get how you feel. People with hydrocephalus can be affected by their condition in a number of often subtle ways. She was just so affected. I turn 45 tommorow and am now experiencing painful headaches. I could really use some. Now i have programable shunt. * required information. Hi Gemma, ask your doctor. Since the shunt is not blocked I don’t know what they can do now. I know your post is old. Thank you. I live in Gig Harbor, WA. Hydrocephalus Association 4340 East West Highway Suite 905 Bethesda, MD 20814-4447 Telephone: 301-202-3811 / 888-598-3789 Fax: 301-202-3813 Email: info@hydroassoc.org Technical Support: webmaster@hydroassoc.org . I have a 2 year old girl who has had many revisions on her VP shunt. But after that one problem is occurring in me and it happens after every 3 or 4 months you can say this problem a fit. His condition is deteriorating day-by-day. Hi Teagan. ... Spina Bifida Association of Victoria Tel. Children with developmental problems due to hydrocephalus may be eligible for government-sponsored health care and other support services. In 1968, a small group of parents whose children had spina bifida and/or hydrocephalus established a voluntary organisation which would highlight awareness of these two conditions and support families, individuals and carers who were affected. He lives with his girlfriend. The degree of impact varies. Her main symptoms were hand/arm tremors and being a little unsteady on her feet. I have Hydrocephalus. Hi Hilda, thank you for wanting to learn more about hydrocephalus and providing support to parents, we truly appreciate that! Hi Susan, you can find information about CN groups here: https://www.hydroassoc.org/cause-view/community-network/ or you can email us at info@hydroassoc.org – Thanks! Went to ER and shunt was broken so they did surgery to replace it. I don’t have any treatments in place yet. I’d be glad to offer my perspective if it would be useful. The doc I was seeing was not recommending any surgeries because it was compensated. 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. About Hydrocephalus About the HSA HSA Committee. I find it helpful. I am reaching out to other parents to find out how they might handle anxiety. … Anxious mummy! I just recently been noticing at times when my vision will become all blurry and after a minute or so, it’ll be okay. He is having very bad headaches, worse than before, I feel like the surgery has made his head worse. Please enter the message you want to send. Spina Bifida; Hydrocephalus; Spina Bifida. She is a very a happy 1 year old, and has been the greatest blessing of our lives. The philosophy of the organisation is underpinned by peer support and advocacy. It was first diagnosed in 2015 but we learnt that it was ignored and no one did anything about it. Had his 1st shunt then a revision at 3 1/2 He had another revision at 8 and a month later a 3rd ventricolostomy. Anyone going through the same thing that can talk? The Hydrocephalus Association requests applications for:. Also, what are the chances of the ETV failing? He’s had two adjustments and he’s on the lowest setting he had a LP yesterday with pressure of 7 . Keep the pointer still over an item for a few seconds to get its description. The questions I am looking for answers to include questions mainly about school and home life. You can contact them by emailing bostoncommunity@hydroassoc.org Thanks! Does his condition qualify him as “disabled”? My daughter suffered a concussion which lead to post traumatic hydrocephalus. They eventually discovered that water got into the spinal fluid. I want so desperately to help him but all the drs have diagnosed him with is ADHD. The info is: (adult onset) I am looking for a support group. What does “Support Groups Thrive” do? 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. How are you? My shunt last me until I was 15. 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? But like a garden hose, eventually you run out of Slack. My brother had shunt put in his head in September 2017 he frequently has severe headache is this common and he forget alot. My son was born premature and had a vp shunt in at 6 days old. SPONSOR DETAILS Are you ready to join us for a fantastic evening of comedy while supporting a great cause? Hydrocephalus can be caused by problems with CSF secretion, CSF flow or CSF absorption. Tell me about you, the problems you have had. I know he is smart. Who’s to say history won’t repeat itself? Are any other members of this forum in a similar situation? yes I suffer from social anxiety as well when there is a crowd i get nervous and start to freak out like almost a panic attack but i even suffer through depression because of the hydrocephalus it changed my life completely i always give my parents a hard time when it comes to getting a haircut i hate having short hair but i pray and hope for the best i dont get why people dont treat me right like everyone else its hard for me to live life to the fullest i hope anyone can relate to any of this stuff im talking about at school to i get teased a lot and i would never get why, I have hydrocephalus and I deal with really bad social anxiety, regular anxiety, and depression. Our child is at 24 weeks. Hydrocephalus Association of North Texas P.O. Copyright © Hydrocephalus Association . His ventricle has shrunk on one side and not the other. We felt very humbled to receive the check for $250. Would like to talk about your status with your child. Oh also, my husband’s neurosurgeon recommened that I found a support group because I am getting really stressed out. Shine, the spina bifida and hydrocephalus charity, can provide you with the details of local support groups and organisations. Please contact us at info@hydroassoc.com or 888-598-3789. The big problemss iam concerned about is the incontinence of diarrhea,urine and sever sort memory loss. My son Jaden Coles 12 yrs old and is having problems with dealing with living with hydrocephalus and he strongly needs someone to talk to. Your help is greatly appreciated! He says it is what it is and it’s not going to stop him from living his life. We do have a support group in Austin. 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. The information is subject to change without notice. They aren’t mindblowingly painful but they’re just there. I’m now 30 years old and getting my MBA. 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? A recent study published in Neurosurgery looked at the success rate of converting from a shunt to an endoscopic third ventriculostomy (ETV) in pediatric and young adult patients.The study, with lead author Dr. David S. Hersh, retrospectively reviewed patient data … Technical Support: webmaster@hydroassoc.org. ETV in Adults with Hydrocephalus Join Dr. Thomas Zwimpfer, principal investigator in the Adult Hydrocephalus Clinical Research Network (AHCRN), to learn about new results and ongoing studies focused on the use of endoscopic third ventriculostomy (ETV) in adults with obstructive hydrocephalus. In Zimmerman/Elk River area. Thank You. HI Im looking for some support for my older sister. She is 10 now. I’ve had hydrocephalus since I was born 28 years ago. Yesterday we noticed how much the shunt valve and tubing was swollen. She just turned 3. There is no known association between spinal muscular atrophy and communicating hydrocephalus and investigations did not reveal an underlying cause … Resources. She has a follow up MRI in 3 months. He has a Medtronics programmable shunt. you may visit my personal blog (which most recently has been about health stuff) and ask for my contact information there. I live in Denver, Colorado. I live in Utah. Email: info@hydroassoc.org Some people may have few or no difficulties, others can find their day-to-day life very difficult indeed. Hi I’m 33 years old too and I just had my first revision in October We are in Nacogdoches, Texas……Does anyone have any advice for me? The Hydrocephalus Support Association 85 Gloucester Road, Hurstville NSW 2220 Tel (02) 9586 1057 Email hydroce@bigpond.net.au www.hydrocephalus.org.au . I made it through this and you can too!! 1933 Mistflower Glen Ct.Chesterfield, MO 63005-4236 USA. If so, have your symptoms worsened over time? He was a brilliant man and we miss him. Box 670552 Dallas, TX 74637 214-528-2877. The Dr keeps pushing surgery back to replace valve which hasn’t been replaced since I was born wen first shunt was placed. Let’s CONNECT. NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD. Unfortunately, his neurosurgeon passed away that same year before the malfunction. What Causes Hydrocephalus? Reviewed by Associate Professor Marcus Stoodley, Prince of Wales Clinical School, University of New South Wales, Sydney, Australia. We're launching Shine's Legal Service Find out more. My neurosurgeon made the hole larger so the csf could flow better to drain properly. It seems so unfair because it wasn’t my dad’s fault that he was left for all those years. His pressure was 27 before the surgery now it’s 7,Hes having a lot of pain behind his ear were the shunt is. The surgeons now, moved his shunt from the original position, due to the fact that at that time, there was more clogging issues and they thought it would be better. My 87 year led Mom recently diagnosed with NPH, Neurologist helpful but cannot give me idea of what I’m to expect, has anyone dealt with progressiveness of disorder since she is not candidate for surgery or medicine? I hope I’m not being presumptuous in responding to your message as I’m not a doctor but do have hydrocephalus. 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