Hydrocephalus Resource Library (HRL)

Welcome to the Hydrocephalus Resource Library, a new tool to help you find the answers not contained elsewhere in our site, or on the internet.

Hydrocephalus is a condition fraught with complications. As always, we strive to provide our members with the best information possible.

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16 Comments for : Hydrocephalus Resource Library (HRL)
  1. Reply

    I am now 35 weeks pregnant and my doctor Told me that may baby has hydrocephalus i was so worried and i can’t even have a proper sleep.. They recommend me to do shunt procedure.. I was just worry is shunt safe for my baby? How long does it takes? And the survival of my little angel..

      • Carsha
      • March 12, 2018

      I had my daughter at 27 weeks she was in the NICU for 81 days. After the doctors were able to stabilize her they shared she would need to a shunt. She is 11 years old and she is my walking miracle.

    • Bette Winczkowski
    • February 19, 2018

    My husband was diagnosed with NPH in August of 2015. In January of 2018 he had a shunt inserted. The only symptom he had of NPH was short term memory loss, which he still has. Does anyone know if he will ever get his memory back? Everything that I have read doesn’t give a good outlook.

  2. Reply

    Erin, I work at the Amen Clinic and Dr Amen is a Neuropsychiatrist not a neurosurgeon. My daughter has hydrocephalus and I would not think Dr Amen is the right expert for this – I can ask though – if you would like, you can email me directly tcurtis@amenclinic.com

    • nicolas harris
    • January 18, 2018

    hi everyone our daughter just turned 2 she had shunt placed in july 2016 she had 2 surgeries in 3 days couse they didnt place it correctly the first time. she was doing very well after that. when we went for an mri test 10 days ago they gave her some medicine from the nose to calm her down. she slept and when she woke up she was very sick. since then she is very afraid and not feeling well she doesnt want to play or do anything we think she is dizzy or have headaches. but we cant be sure couse she still cant talk. any help??thank you

  3. Reply

    My daughter was seen at the emergency 2 days before she died from a Blockage of the Shunt. She went in for flu like symptoms, nausea, chills, headache and fever. There was no Doctor present to evaluate her just a nurse, The Doctor gave the nurse instructions over the phone with what steps to take and for the caregiver to bring her back if vomiting or fever persists. Unfortunately my daughter went into Cardiac arrest and died on the way to hospital. Was this a sign that my daughter was having problems with a malfunctioning shunt?

      • Christopher Range
      • January 19, 2018

      Yes, That is atrocious, that a doctor was giving neurosurgical instructions, over the phone, to a nurse.

    • Megan Boulton
    • December 14, 2017

    My daughters brain swelled so bad in February she almost died. It cause strokes in her brain and now has a VP shunt. She was left with tremors due to this. I was wondering with each surgery do they get worse or does the shunt have an effect on these since it is in contact with the brain?

    • Jean Weisert
    • November 22, 2017

    Do shunts have the highest failure rates among medical devices? Is the true and can it be documented?

  4. Reply

    What is the difference in 80 or 100 or more settings of the shunt.

    • LaTonya Perry
    • September 5, 2017

    My son is 10 now and was diagnosed with Hydrocephalus when he was only 7 in August 2014. He had surgery October 2014 with a new procedure called the ETV! It’s a bypass that drains the fluid through his body. He has frequent headaches that can be treated with meds. We are from Richland,Ms. Hr was told that he can’t play any contact sports and he loves football and it just breaks my heart when he wants to play so bad but can’t. The kids at school always telling him he has a big head and he comes home at times crying. Please give me some advice

      • Paul Davidson
      • September 15, 2017

      I can identify so much. I had a ventriculo-peritoneal shunt put in when I was 7. At that time the doctors said I may not live. I have had 8 surgeries over the years. I am fine and am now 64.
      God bless you both.

        • Jim Filippini
        • January 14, 2018

        What is SPECT? I didn’t know that Dr.”give us Hope ” Amen was a surgeon–I thought he was a PBS actor star _-lol.

    • Reply

      my son had a regular shunt, he lived to be 20, he died on his first shunt faliure, he was bullied, beaten up by the bullys at school, his life was horrible, i don’t know my about what your son had done good luck, and god bless you

  5. Reply

    I was diagnosed with right side obstructive hydrocephalus in late May 2016. I underwent laparoscopic brain surgery in June 2016. In this procedure the neurosurgeon went down to the center of my brain and punctured a hole in the membrane that divides the hemispheres of the brain in hopes to drain the fluid without shunt placement. In August 2016 I had an MRI that showed I still have a moderate amount of fluid in my brain and have sustained permanent brain damage from the fluid. I am seeking information on many different subjects. I have never had a head injury or meningitis and do not know the origin of my hydrocephalus. I would like information on stem cell research, if a shunt would help me at this point and other treatment options. This is so very new to me, I have been told I should no longer work. I was an occupational therapy assistant for over 20 years prior to this. Any information or advise would be greatly appreciated!
    Erin Bakke

      • Paul
      • September 16, 2017

      There is a neurosurgeon whom I really respect, dr. Daniel Amen. He uses SPECT scans to find out problems in the brain. You can check him out at amenclinics.com He has offices mostly in the NE and in California. The phone for the clinic is 888-564-2700.
      Paul Davidson

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