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.

23 Comments for : Hydrocephalus Support Groups Thrive
    • 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.

    • 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

    • 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!

  1. 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

  2. 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

  3. 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.

  4. 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.

    • 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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