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.

55 Comments for : Hydrocephalus Support Groups Thrive
  1. 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
    #25yearFighter

    • Amit Kumar
    • November 27, 2017
    Reply

    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
    Reply

    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
      Reply

      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
      Reply

      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
      Reply

      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

      • Yolanda
      • November 19, 2017
      Reply

      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.

  2. 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
      Reply

      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.

  3. 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
    Reply

    Is there a hydrocephalus support group in SE Michigan?
    Sue

    • Poppy
    • May 15, 2017
    Reply

    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
    Reply

    Looking for support group near rochester mn

      • Lauren
      • October 8, 2017
      Reply

      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.

    • latisha fowlks
    • August 17, 2016
    Reply

    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
      Reply

      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.

      clance31@gmail.com

    • SAKSHAM
    • June 25, 2016
    Reply

    HELLO,
    I AM SUFFERING FROM HYDROCEPHALUS SINCE I WAS 2 YEARS OLD NOW I AM 16 YEARS OLD BOY I HAVE PROBLEM OF STRETCHING OF MY SHUNT .SO, WHAT SHOULD I DO? IS IT DUE TO MY INCREASING HEIGHT?

    SAKSHAM

      • Glenn Kirkland
      • February 24, 2017
      Reply

      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
    Reply

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

    Thank you,
    Johanna

    • Brock Campos
    • April 20, 2016
    Reply

    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
    Reply

    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
      Reply

      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
    Reply

    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
    Reply

    Any support groups in San Francisco CA area? 50

    • Andrea
    • January 15, 2012
    Reply

    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
      Reply

      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
    Reply

    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
      Reply

      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
      Reply

      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
        Reply

        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
        Reply

        Is there a support group in Hoboken, NJ

      • Cathy
      • July 26, 2017
      Reply

      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
      Reply

      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
    Reply

    Hello,

    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!

  4. 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.

    Phyllis
    epkor@mac.com

    • Crazyhorselady
    • April 17, 2011
    Reply

    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
    Reply

    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
    Reply

    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

  5. 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
    Reply

    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.

  6. 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
    Reply

    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
    Reply

    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.

  7. 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
    Reply

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

    • Denise
    • February 16, 2011
    Reply

    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
    Reply

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

    • Angel
    • February 5, 2011
    Reply

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

    Thanks,
    Angel Sterling

    • Tes
    • February 4, 2011
    Reply

    Is there a support group in Des Moines Iowa?

    Thank you

      • tom
      • February 7, 2011
      Reply

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

    • lillian
    • February 4, 2011
    Reply

    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,
    Lillian

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