Hydrocephalus Support Groups Thrive

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By Jennifer Bechard, Support Group Liaison

this is a group picture of the detroit michigan hydrocephalus support groupHydrocephalus Association Support Groups are off to a great start this year.  Each week, we are receiving calls or e-mails from enthusiastic, driven individuals determined to help others who are dealing with the challenges of hydrocephalus.

Every child, adolescent, adult and family member has a different story but there are two common threads: Awareness and support are critical.  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.

The hydrocephalus community and the HA staff would like to welcome the latest members to our support Partners community:   Danielle Netherton  in Chico, CA, This is a picture of Dr. Hugh Garton - Pediatric neurosurgeon from  U of M Children's hospital Jennifer Bulthuis in Minneapolis, MN, Annie Mason in Richmond, VA, Chevis Shannon in Birmingham, AL and Sandra Frazier in Washington, D.C..

And once again we would like to extend our profound gratitude to our partners for all their selfless dedication, time and effort.

94 Comments for : Hydrocephalus Support Groups Thrive
    • Marilu Mazzotta
    • December 6, 2019

    Is there a hydrocephalus support group in the Boston area? If so where and how do I contact them?

    • Phyllis Cohen
    • August 6, 2019

    Are there any NPH Support groups either online or in person in the Southern CA area, specifically in the San Fernando Valley or Thousand Oaks/Simi, where we can interact with other NPH patients & family caregivers? What does “Support Groups Thrive” do? Are there actual support groups & forums?

  1. Reply

    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?

    • Hilda M Chileshe
    • June 28, 2019

    Good morning! I am a mother of three working in a hospital as an office assistant. My heart bleeds seeing how parents with hyrocephalus babies worry when there kids are going for surgery. I want to have more knowledge so that i can offer good support to them. Letting them know that there is hope and a future in there children

      • Ines
      • July 2, 2019

      Hi Hilda, thank you for wanting to learn more about hydrocephalus and providing support to parents, we truly appreciate that! Our support program manager will be in touch with you via email shortly.

    • Lynette Brown
    • June 6, 2019

    Is there a Facebook like support group where I can be involved via the internet,

    • Jennifer
    • June 5, 2019

    Hi. I’ve had hydrocephalus since I was born 28 years ago. Had a replacement 2 years later then never had any issues at all until I was 27 1/2 years old..bad headache for 3 months with no relief..worsening over time then a floater appeared then all of a sudden throwing up non stop and couldn’t stand up. Went to ER and shunt was broken so they did surgery to replace it. A month after surgery..headache came back and has been around..different pressure levels. Sometimes like I’m wearing a hat too tight..other times like my face is tightened like I’m straining to pick up something heavy n can’t lift it..sometimes both. Hot sun affects me to. Sometimes laying down helps but sometimes not. But no relief with otc meds. The Dr keeps pushing surgery back to replace valve which hasn’t been replaced since I was born wen first shunt was placed. Is it bc I don’t have insurance at the moment. Is it normal to have headaches all day everyday with no going away?

    • Stephen Cavalieri
    • May 22, 2019

    Do you know places that make bicycle helmets for children with hydrocephalus? Thanks.

    • Robert Kaplan
    • April 2, 2019

    My wife who is 80years old has normal pressure hydrocephalus. The big problemss iam concerned about is the incontinence of diarrhea,urine and sever sort memory loss. Any thing on the control of diarrhea wold br great. I can take care of urinary incontence

    • Amber
    • March 6, 2019

    I’m looking for a support group that parents have a child with hydrocephalus also with adrenaline efficiency and cerebellum problems if anyone can help please reach out

    • Joelle
    • January 14, 2019

    My daughter suffered a concussion which lead to post traumatic hydrocephalus. This was when she was 10 months old. She just turned 3. She often says “ thats to loud” and appears to be bothered by brightness. Is this a common symptom, something she may live with??

    • Praggya
    • October 29, 2018

    Hi I am 33 years old and got a shunt revosion. Now i have programable 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. In this i go in unconscious state of mind and remain there for 5 to 6 days. After that I suffer with a problem of less accommodation power of eyes and this problem remain there for 60 days or more.
    Please suggest me solution for that.

      • Maribel Moya
      • January 6, 2019

      Hi I’m 33 years old too and I just had my first revision in October
      Can you explain a little more your symptoms?

    • Michalle
    • September 19, 2018

    My husband was recently diagnosed with hydrocephalic and had a VP shunt 6 wks. ago , he’s had worse headaches , sharp pain behind his ear were the shunt is . Yesterday we noticed how much the shunt valve and tubing was swollen. You could actually feel the tube. His head was throbbing. Today the swelling has gone down. He’s had two adjustments and he’s on the lowest setting he had a LP yesterday with pressure of 7 . His ventricle has shrunk on one side and not the other. Can this be a blocked shunt? Has anyone experienced any of this?

  2. Reply

    I am 47 years old was diagnosed with hydrocephalus about 10 years ago that was supposed to be monitored every year by MRI. My current neuro didn’t want to be bothered . Now it has progressed to nph and I’m terrified. I don’t have any treatments in place yet. I got home from hospital few days ago. They say maybe shunt. But I have to wait for final word from new neurologist on August 20. Any advice to prepare for this appointment?

    • James
    • August 1, 2018

    Hello, I’ve been diagnosed with Hydrocephalus during a couple weeks into birth and I am now turning 16 in a few weeks. I am told that we shouldn’t mess with the shunt if there aren’t any problems but lately I’ve been noticing things that are off with me. Firstly, I will get around 8 to 9 hours of sleep but I feel really lethargic throughout the entirety of the day, this may be due to puberty though. Also I have been getting headaches for awhile now. They aren’t mindblowingly painful but they’re just there. I just recently been noticing at times when my vision will become all blurry and after a minute or so, it’ll be okay. I just want support on what’s wrong

      • dylan delacrosse
      • September 2, 2018

      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 ,

    • Reply

      Please go get checked. I was diagnosed at 2 months. My shunt last me until I was 15. They went in to replace it and found the old one had deteriorated in my body. I am now 39 and just had a new shunt placed Oct 10,2018. The past one became unhooked at the brain. It is very serious. Don’t wait too long.

    • Joanna Fisher
    • July 11, 2018

    I hope I’m not late to the party.

    I am almost 21, I was diagnosed with hydrocephalus when I was 2 months, and since have had two revisions. I’m about to go in for another revision and I’m panicking harder than I did the previous times. Last time I had minor memory loss following the surgery and now I have a 1 year old son. I am irrationally scared that I’m going to forget him or he’ll be scared of Mommy’s new stitches. I am terrified. I’m really struggling with this. Not only that, but my last two surgeries we’re only 16 months apart. Who’s to say history won’t repeat itself?

    • Mahesh Ramesh Randive
    • March 16, 2018

    Hi ..I Am mahesh from pune. India

    My baby is hydrocephalus .now 10 days run away

    I need a help
    Please help no +917741941444

    • Adrian
    • March 15, 2018

    I have Hydrocephalus since birth.It has become difficult to live with over the years

      • Michael Morin
      • March 20, 2018

      Hi Adrian my name is Michael I was also born with hydrocephalus since birth I wanted to tell you your not alone and you will never be alone just trust God and pray that everything is gonna be okay 🙏

    • Dorothy Browndorsey
    • February 25, 2018

    My name isDorothy my grandson hasPediatric Hydrocephalus he received his 2 surgery so far .
    His mother pass at birth.
    I would like to join the support group to keep getting information

    • Reply

      I wanted to respond to your post and say that if you need support I want to extend my support to you. I am a 54 year old with Hydrocephalus. They found it when I was 3 years old. I’ve had about 8 surgeries in my lifetime. Back in the 60’s the technology to take care of this condition came in 1958, 1959. I barely made it because I was premature baby and from that I developed a brain bleed that brought on the Hydrocephalus. They couldn’t operate on me when it was first discovered because I was a weak toddler. I had to wait until I was 5 years of age to have the operation. I had the operation but I went into a coma. They eventually discovered that water got into the spinal fluid. After a spinal tap, I woke up!!!! I had a revision when I was 10. I had a pressure valve put in when I was 11. I had no problems until 31 years of age. My shunt had to be replaced. I have been healthy and lead a relative normal life. Sincerely, Dana Gaddini

  3. Reply

    Hello my name is Brigette and I have been living with Hydrocephalus since I was 3 years old, I am now 25. 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. As an adult living with hydrocephalus, I still have to be careful in certain activities just to make sure that my shunt will not be injured, other than that, I’m a fully functioning adult with no other heath problems than what I was diagnosed with at the age of 3. I will be graduating from college soon as well. I just want to encourage those who are living with this to stay encouraged! And to keep fighting! I made it through this and you can too!! God Bless. #HydrocephalusStrong

    • Reply

      Hi Brigette my name is Michael im 17 years old i had 3 surgeries total and have been living with hydrocephalus my entire life my question to you would be what kinda struggles do you deal with in life in general and how do you deal with people who are mean or act ugly towards you

    • Amit Kumar
    • November 27, 2017

    hi My name is Amit and i live in South Australia .From last 4 years i am suffering from Complex Hydrocephalus and i had 4 times brain surgery but still i am not confident when and how i will be get better.I have two kids, daughter 5years and son 18months old . I need help ….I need help seriously

    • Samia
    • October 1, 2017

    I’ve had a shunt for nearly 6 years now and I’m 19. I’d love to help anyone who has any questions about having a shunt:)

      • Renee
      • November 15, 2017

      Thanks for the offer! I have a nine year old who has had his shunt for three years now and is just coming into an understanding of what it is, how it works, side effects etc. Would love to know how it was for you adjusting, school delays and side effects like headaches and memory.

      • Rick
      • November 15, 2017

      Hi my Grandson was born with Hydrocephalus. He has had 2 shunts all along. He has behavioral problems. Kicking, spitting etc. I know he is smart. They now have a computer for him at school as he struggles writing. My question is about head pressure, headaches etc. I wish I could just be inside this lil boy so I could feel. I want to help. His Mom my Daughter Amanda is awesome. She became a RN Nurse after the birth of Leland. She was just so affected. Tell me about you, the problems you have had. How you are doing? How you have learned to live with this? I just don’t want to miss anything that can help Leland. Grandpa Rick.

      • Michael Morin
      • November 15, 2017

      My name is Michael I was born with hydrocephalus and I currently had a shunt for 17 years now I always pray about it and I just hate when it comes to getting haircuts

      • Reply

        Hi Michael. I’m Jennifer. My son was born premature and had a vp shunt in at 6 days old. He is getting ready for his 10th birthday. I guess my question to you would be for school did you have any challenges mentally? My son is very sensitive to sounds, he gets overwhelmed very easily, doesn’t really have a filter, and has social anxiety. Does any of this strike accord. I want so desperately to help him but all the drs have diagnosed him with is ADHD.

        • Reply

          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

            • Vivian
            • March 26, 2018

            I have hydrocephalus and I deal with really bad social anxiety, regular anxiety, and depression. My parents have a hard time reacting and knowing how to help me. I totally get how you feel

          • Patricia
          • November 12, 2018

          Hi, my daughter was also diagnosed with ADHD. She is 10 now. She has sensitivity to sound. 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. We started medication at 8 but have since stopped giving it to her. She does not have an attention issue. Her grades have stayed the same(good). I think we need to fight harder to figure out why this might be happening. Thank you for posting this.

      • Yolanda
      • November 19, 2017

      Hi samia,

      My brother had shunt put in his head in September 2017 he frequently has severe headache is this common and he forget alot.

    • Reply

      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

    • Reply

      I have mph. Had shunt placement 10 months ago
      I am starting to have hands shaking, stumbling, and memory again
      Is there anything I can do to prolong my good health
      It has been wonderful being normal

      • Michalle
      • September 18, 2018

      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. His pressure was 27 before the surgery now it’s 7,Hes having a lot of pain behind his ear were the shunt is. He is having very bad headaches, worse than before, I feel like the surgery has made his head worse. Since the shunt is not blocked I don’t know what they can do now. H a very you experienced any of this or have any advice. I could really use some,

      • Kim torres
      • March 6, 2019

      I am 48 and was diagnosed about 5yrs ago. I believe mine was due to a fall. I hit my head pretty hard I have had 1 surgery that did not drain the fluid. I scared to get a shunt. What if it doesn’t work?

  4. Reply

    Hi. I know this is an old post but wondering if any of the people that commented can help answer my question. My daughter, Eva (3.5years) has secondary hydro caused by a cyst and had an ETV last week (6 days ago). Her main symptoms were hand/arm tremors and being a little unsteady on her feet.
    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). How long does it take for the ventricles to shrink down?
    Also, what are the chances of the ETV failing?
    She has a follow up MRI in 3 months. After being worries sick about the ETV op I’m now worried about it failing.
    Can anyone help to answer any of my questions?
    Anxious mummy! Thank you.

      • Ines Nin
      • August 9, 2017

      Hi Gemma, ask your doctor. ETV failure rates vary with etiology. Some people can see improvements right away but for others it takes time for the ventricles and brain to adjust to the shunt and new pressure setting. Some symptoms may not go away.

  5. Reply

    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. Im very nervous about his surgery and was wondering was there any support groups in Nashville TN

    • Sue
    • May 23, 2017

    Is there a hydrocephalus support group in SE Michigan?

    • Poppy
    • May 15, 2017

    My grandson was diagnosed with hydrocephalus. I would like his mom to get a support group around Mmabatho in North West province. Kindly assist

    • anne burke
    • August 17, 2016

    Looking for support group near rochester mn

      • Lauren
      • October 8, 2017

      I am always willing to help! My daughter just was discharged yesterday for having an emergency VP shunt revision, her 3rd surgery since her birth in January. In Zimmerman/Elk River area.

        • Jesse lynch
        • January 24, 2018

        We just found out our unbornbaby 24 weeks, we don’t have clue what to expect and how we will proceed. Just looking to talk.

        • Vanessa
        • April 6, 2018

        Dear Lauren,

        I saw your post from October. I have a 2 year old girl who has had many revisions on her VP shunt. I am reaching out to other parents to find out how they might handle anxiety. Even when she’s out of the hospital, I am always on edge. Do you deal with anxiety,too?


    • latisha fowlks
    • August 17, 2016

    im 35 weeks and just found out my baby girl who i plan to name july leeann has a fuild buildup on her brain. im confused and crying everyday. i dont understand and just need to talk to other that may have went through same situation that can shed some light on this situation that im facing.

      • Chris Lance
      • July 20, 2017

      Hi Latisha,

      I hope I’m not being presumptuous in responding to your message as I’m not a doctor but do have hydrocephalus. This sounds similar to what my parents heard before I was born. I’m now 30 years old and getting my MBA. I was 22 years complication free and just had my first surgery as an adult. I’d be glad to offer my perspective if it would be useful. Try to keep the faith. I wish you and your daughter the very best.


      • Jesse
      • January 24, 2018

      How are you? Would like to talk about your status with your child. Can you please help us. Our child is at 24 weeks.

    • June 25, 2016



      • Glenn Kirkland
      • February 24, 2017

      Probably. Your surgeon left as much slack in your shunt as he could. But like a garden hose, eventually you run out of Slack.

    • Johanna Wendell
    • May 21, 2016

    Is there a support group in or around Atlanta, GA?

    Thank you,

    • Brock Campos
    • April 20, 2016

    Hello my name is Brock Campos I have hydrocephalus since I was born on May 19, 1965. I live in De Pere, Wisconsin. Is there a support group that I can join in De Pere or Green Bay area in Wisconsin?

    • Brock Campos
    • April 18, 2016

    Hello my name is Brock Campos I have congenital hydrocephalus since I was born. I am 50 years old now. I had 5 surgeries in the past 16 years. My last surgery was 2008. I had a procedure done that was called an etv surgery in 2005. I had that surgery because my shunt and tubing became infected, In 2008 I had another surgery performed in my third ventricule because the hole was not big enough and was closing up. My neurosurgeon made the hole larger so the csf could flow better to drain properly. Could someone help me find a support group for people with same condition as me. I live in De Pere, Wisconsin right now with my parents temporaly. I will be looking for a place of my own in the near future.

      • Cathy
      • July 21, 2017

      My son had his first shunt at age 3 then a revision at 3 1/2 then 8yrs then a month later it failed again and he had a 3rd venticolostomy. He had alot of complications and is now 29 living with his girlfriend and presently looking for another job. He could benefit from a support group. Have you ever found anyone else like yourself to talk to?

    • Marilyn
    • March 16, 2016

    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

    • Char
    • February 28, 2016

    Any support groups in San Francisco CA area? 50

    • Andrea
    • January 15, 2012

    Hello.I am 48yrs old and diagnosed in 2006 with obstructed hydrocephalus. 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. I would like to hear from anyone who has had ETV.

      • Sheila Oetting
      • August 28, 2017

      Hi Andrea,
      I was diagnosed with severe obstructed hydrocephalus about 5 years ago. I’ve probably had it my whole life; I am 51 now. I started getting very severe headaches on a regular basis.
      The doc I was seeing was not recommending any surgeries because it was compensated. However when she was reviewing cases with colleagues weekly meeting with the doctor said I would like to see her. He did an ETV and I felt SO much better!

    • Teagan
    • December 6, 2011

    HI Im looking for some support for my older sister. She was born with hydrocephalus 28 years ago and Im desperate to find her some friends that understand exactly what she goes through on a daily basis. Please can you help me find support groups and possible meetings with others in the Seattle, WA area?! Thanks

      • Alisha
      • September 9, 2016

      Hello my name is Alisha Antoinette Albritton I’m 30 years old I live in the Federal Way area I have hydrocephalus have your sister get in contact with me my phone number is 206 886 8486 she can text me if she wants to look forward to hearing from her

      • Alison Hartquist
      • September 29, 2016

      Tegan, my son is 26 and was shunted at 2. He is feeling very alone and would probably welcome a conversation with your sister.

        • Chris
        • July 20, 2017

        30 male with hydrocephalus here. Your son is welcome to reach out to me as well. I just had surgery #16 and am learning to adjust to the first noticeable symptoms I’ve had in 22 years. Mostly free for the summer.

        • Cathy
        • September 11, 2017

        Is there a support group in Hoboken, NJ

      • Cathy
      • July 26, 2017

      My son is 29. He was diagnosed at 3. Had his 1st shunt then a revision at 3 1/2 He had another revision at 8 and a month later a 3rd ventricolostomy. He has never had anyone to talk to who has gone thru this. He graduated college and has had several jobs on Wall St but is now looking for another job. He lives with his girlfriend. He feels very overwhelmed by life due to all he has been thru and would benefit from talking to someone who understands because they have been there. What is your story? Would you be willing to connect?

      • Ray Bradshaw
      • July 26, 2017

      Hi Teagan. I know your post is old. I was recently diagnosed with hydrocephalus after many years of symptoms. I’m scheduled for my 1st surgery. I’m looking for people to talk to with similar experiences. I live in Gig Harbor, WA.

    • Jessica Rakus
    • October 25, 2011


    I am looking for a parent of a child with hydrocephalus to volunteer their time to help me answer a few questions for an assignment I have to complete for one of my undergrad classes. The questions I am looking for answers to include questions mainly about school and home life. All personal information will be kept confidential. If anyone is interested, please e-mail me at jessicarakus1@gmail.com. Your help is greatly appreciated! Thank you!

  6. Reply

    My husband is 78 and was diagnosed with NPH after being misdiagnosed for 3+ years. He had a shunt placed in July this year and he is now able to walk with a walker but very, very short distances. He has no stamina, his short term memory is very bad and he is somewhat better with incontinance. 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 a Medtronics programmable shunt. Tomorrow he goes for another adjustment and hopefully meet with the rep from Medtronics. It is mentally, physically and financially difficult. Most days I am fine but occasionally I am afraid if someone asks how we are doing I could have a complete melt down.

    We live 350 miles from our only daughter and her husband. They are supportive and come when they can but they both work so mostly it is telephone calls and I don’t like to talk about the negative all of the time. I’m fortunate as my husband is not demanding and we have always had a strong, loving marriage. He has his sense of humor which is helpful as we laugh often.

    I am available through email if you have any suggestions.


    • Crazyhorselady
    • April 17, 2011

    Oh also, my husband’s neurosurgeon recommened that I found a support group because I am getting really stressed out. Anyone going through the same thing that can talk?

    • Crazyhorselady
    • April 17, 2011

    My husband was recently diagnosed with hydrocephalus in December 2010 and had a VP shunt placed on January 25, 2011. He had a head injury from a horse accident on August 15, 2010 and started having problems with balance, walking and short term memory that got worse until it was determined from a series of CTs and MRIs that he had hydrocephalus. 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 balance and walking have improved but he is still having issues with cognitition and short term memory. This whole thing has put a huge strain on our marriage as he as always been the main bread winner and has been unable to work since being diagnosed. He suffers from headaches almost everyday and the neurosurgeon is still attempting to find the right setting for his programable valve. We are both wondering if anything is ever going to be normal again! 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. He is only 58 and we still have a teenager at home and we are in no shape financially for him to retire. Does his condition qualify him as “disabled”?

    • Julie Ellis
    • March 6, 2011

    Are there any support groups in Minnesota? My son has had a shunt since he was an infant, he is now a senior in high school and has missed a lot of school this year due to shunt issues & infections/surgeries.. I want him to be aware that there are other people for him to talk to if he chooses. Possibly of his own age.. Thank You

  7. Reply

    Hey all!

    I am adult ( 29 years old ) who just had my seventh vp shunt revision. I live in the Tri-State area. Are there any support groups for people in my age group here in NY, NJ and/or CT?

    • Tom Johnson
    • March 2, 2011

    I recently had a shunt implanted and so far it is working well. Do you have any contact information for a support group in the Reno, NV area? Thanks

    • Reply

      You posted a long time ago but I live in the area. There is no group at this time that I can find.

  8. Reply

    Hi My name is Kandice, and I was born with a rare form of hydrocephalus 23 and a half years ago. 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. I currently have a shunt that is not working, due to my surgeon not getting it into my cyst far enough 10 years ago, but until it causes a real problem doctors do not want to do anything with it. you may visit my personal blog (which most recently has been about health stuff) and ask for my contact information there. I live in Utah. does anyone here know of any support groups for perople with hydrocephalus in Utah?

    • lourdes trinidad
    • February 20, 2011

    Hello, can anyone tell me if there is a support group in southern nj ? we have a daughter born with congenital hydrocepholus. She is a very a happy 1 year old, and has been the greatest blessing of our lives. At only 4 months old, surgery was performed to place a vp shunt. Please, any information any had would be a great help. Thank you.

    • Madeline
    • February 19, 2011

    Hi Pam,
    My husband had a first shunt placed when he was 29. He had it for 24 years without any incident. In 2004, it started malfunctioning, so we said, time to replace it. Unfortunately, his neurosurgeon passed away that same year before the malfunction. He was a brilliant man and we miss him. We had to find another surgeon quickly. Even though his recent surgeons are renown and recommended in their field, since 2004, he’s had about 12 shunt revisions. Sometimes I feel that surgeons nowadays are not as warm or caring as they used to be back in the 70’s and 80’s. My husband says that his first surgeon took care of placing the shunt where it would be less intrusive and invasive to damage in his brain. 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. However, since 2007, my husband has lived with left sided numbness, tightness and tingling in his arm, hand, thigh and his left eye feels very heavy and droopy. He also experiences vertigo and a spinning feeling all the time. We don’t know if it would have been the same with the former doctor or because he is older. All those revisions have caused scar damage in his brain. Try to have the surgeon take care of how he places the shunt so as to cause the least damage, maybe back in the original location. Give lots of support and love to your husband. Luckily, my husband is the most positive person on earth. He says it is what it is and it’s not going to stop him from living his life. Good luck to your husband. 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.

  9. Reply

    My husband had a shunt put it 20 years ago, he was 27 at the time and so very lucky to be alive. Heblacked out today and they think his shunt may no longer be working. He has on 10% of his memory because of the severity of his hydrocephalus. I just feel so lost at the moment…..morelike a sinking feeling. He is 47 and Iam so worried he is going to have to have the surgery again. We are in Nacogdoches, Texas……Does anyone have any advice for me?

    • Chantel
    • February 17, 2011

    We are moving to San Antonio Texas. Is there a support group in that area?

    • Denise
    • February 16, 2011

    a support group for my adult son just had surgery congential hyrdo missed for 22yrs .He lives back at home now.DEsprate for kind words

    • Joy
    • February 9, 2011

    Try the Adult Hydrocephalus Discussion Board for an on line support group. I find it helpful.

      • Michalle
      • September 19, 2018

      How do you get on the adult hydrocephalus board

        • Lakisha Harris
        • September 20, 2018

        Hi Michalle,

        Thank you for your question. The Hydrocephalus Association has community networks in most states to support our community members. Please use the following link to locate a community network in your area https://www.hydroassoc.org/cause-view/community-network/.

        Hope this is helpful. Have a wonderful day and fantastic remainder of the week.

        All the best,
        Support and Education Team

    • Angel
    • February 5, 2011

    My 1 year old daughter has hydrocephalus. Are there any support groups in South Carolina? Greenville/Spartanburg area.

    Angel Sterling

    • Tes
    • February 4, 2011

    Is there a support group in Des Moines Iowa?

    Thank you

      • tom
      • February 7, 2011

      Hello Tes,
      Cedar Rapids would be the closest support group that we have at the moment.
      HA Staff

    • lillian
    • February 4, 2011

    I am an adult with newly diagnosed and surgically repaired with hydrocephalus. (adult onset) I am looking for a support group. On line is best. I live in Denver, Colorado

    Thanks you,

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