Hydrocephalus Resource Library (HRL)

27 Comments for : Hydrocephalus Resource Library (HRL)
    • Randy
    • January 23, 2019


    I was wondering if anyone has ever experienced pain in their VP shunt. I have had several operations on my shunt and have never had this issue. But, it is now 8 months after my most recent revision and I suddenly got pain in the area of my shunt. To be more specific, it is a sharp pain along the side of my shunt right at the base of it. The longer I am active the more sensitive it is and the larger the area. I have scratched the other side of my head and yelped from the stabbing pain I feel in my shunt. If I sit on the couch and don’t move, it gets better.
    I asked my doctor and they said pain from the scar tissue is not uncommon in shunted patients, but I can’t find any information on this. I also find it to be confusing because the pain radiates into my temple and sometime in the back of my head. Why would the pain move and why would it be more or less sensitive depending on my activity level? Any help would be appreciated as when it’s really bad, just turning my head or moving my eye brows causes it to hurt.

    Thank you,

      • Lakisha Harris
      • February 1, 2019

      Hi Randy,

      I agree with your specialist, scar tissue is not uncommon in shunted patients. There is little to no research on scar tissue in shunted patients. The pain occurs because the scar tissue is being pulled when there is movement around the area of the tubing and/or the patient grows in size. You will need to work with your specialist to determine why your pain radiates from different locations and level of sensitivity, and the best treatment option for your case.

      Hope this is helpful. Please visit our Community Network page to join a network on Facebook that is near you https://www.hydroassoc.org/cause-view/community-network/ which I feel you will find beneficial.

      All the best,
      Support and Education Team

    • Greer
    • December 18, 2018

    What are your thoughts on hypotonia (low tone) being a symptom of a hydrocephalus diagnosis?

    • Ríchie Souza
    • June 17, 2018

    Which type of seizures can coexsist with hydrocephalus, Chiari2 and Myelomeningocele?

      • Erika
      • July 22, 2018

      Tonic clonic sezuires

    • Cynthia Gonnella
    • May 28, 2018

    Can anyone help me, I’ve been to four neurologists and one neuropsychologist who can’t seem to find out why I’m stuttering, have tremors in my hands, pins and needles in my fingertips and toes, weakness and trouble walking (call it the funeral shuffle), memory issues, fatigue, headaches as if I have a vice around the back of my head to the temples… My CAT scan was normal and one MRI showed enlarged ventricles consistant with a 2015 scan showing the same thing (which I was never told). Now what? They look at me like I have two head and just want to medicate me.

      • Roland Bender
      • February 12, 2019

      Hello Cynthia,
      I’m aware of your post being rather old but was curious what happened since 2018 when you posted it here. Did you get a diagnosis and treatment later on? The enlarged ventricles surely were an indicator for potential NPH but that alone just makes for one symptom.

      Looking forward to your response.

    • Ravindra
    • April 1, 2018

    I had operated programmable vp shunt on my brain on March 10 2018…..can any one help regarding this ……..

  1. 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.

      • Roland Bender
      • December 11, 2018

      Hello Bette,

      I am an NPH patient and have also been struggling with short term memory problems. My NS told me that it’s the hardest to recover but that it will do so. Friends and family assured me that mine has improved greatly but I’m not feeling the same. I’ve been shunted in January of 2018 so it’s been about a year now. My neurosurgeon and neurologist both said to expect 2+ years for noticeable recovery of the memory.
      Don’t give up on him!

  2. 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. 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.

      • Treva Turman
      • March 21, 2018

      First of all let me just say how incredibly sorry I am for your loss. That is every parents worst nightmare!
      My son is 13 and has had two failures in the last two years. He did not have a fever with either. Fever usually indicates an illness or possibly a shunt infection. My son’s first failure was gradual. A 7 month struggle with headaches. His shunt would apparently work intermittently until it finally failed. His symptoms start with really bad headaches. Usually do not improve much with pain meds, whereas when I’ll, ibuprofen usually takes away the pain. He gets dizzy and has vision disturbances as well. His second failure was much faster. He was having bad headaches that increased in severity, occurrence and duration. He finally was in so much pain he couldn’t sleep. He got up and couldn’t walk straight and started vomiting repeatedly. Every time he sat up or stood, he would vomit. His eyes were what they call ‘sunset’ eyes where only the top half were visible and he could not look up. He was in and out of consciousness until surgery. Very scary. I would think that if your daughter was in failure, she would have had some of these symptoms and the pain in her head would love been excruciating. I am not sure what exact symptoms would be if she had a shunt infection, though. I’m sure that would include the fever and I would guess she would also have increasing and very painful headaches. I guess it would also be possible that she had some sort of infection that moved to her shunt/brain… causing meningitis. That, I would think, would’ve been part of her ER diagnosis process. I certainly hope they did not miss anything. I do know our local hospital was not well versed in shunt failures with our sons last episode. We had to remove him and drive to our neurosurgery hospital one hour away. I hope you find the answers you look for and I hope you find some sort of peace during this very difficult time. Again, my heart goes out to you!

    • 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?

      • Brenda
      • June 21, 2018

      I have had 5 shunt revisions in 3 years.. They keep corroding on my brain.

  4. 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.

    • 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. Hello,
    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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