You spoke! We wrote!

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A huge Thank You to the 82 individuals who responded to a question we posted on social media back on October 30, 2017! A research group at the University of Pittsburgh Medical Center analyzed your responses and wrote a paper summarizing the results. 

The question was, “As an adult, what signs and symptoms do you experience that are related to your hydrocephalus and how does hydrocephalus impact your daily life?”

So what did we learn? It may not surprise you. 

  • 381 signs and symptoms were reported that were not directly related to treatment failure
  • 63% reported headache
  • 45% reported cognitive deficits
  • 40% reported mobility issues (dizziness, balance, or gait problems)

An additional finding was that half of the individuals reporting a headache also reported hypersensitivity to external stimuli. This has been largely neglected in the research literature!

Why is this type of information important? Publishing your experience in peer-reviewed medical journals increases recognition of these concerns by the wider medical community. It can also help shape future clinical research by prioritizing outcomes measures that impact our community on a daily or ongoing basis. 

To read the study Click Here 

6 Comments for : You spoke! We wrote!
  1. I GET HEADACHES SPECIALLY IF I DONT DRINK ENOUGH FLUIDS, S/P VP SHUNT 9 MONTHS AGO. VERY TIRED AND SLEEPY I AM A PHYSICIAN AND I HAD TO CUT MY WORKING HOURS. I ALSO HAVE A CONSTANT SORE THROAT NOT INFECTIOUS THAT I CANT EXPLAIN, MY THROAT IS ALWAYS READ, NO GERD RELATED.

    • Dorothy Sorlie
    • March 12, 2019
    Reply

    My shunt was “installed” May 2018. My recovery is EXCELLENT. I have NPH, am vigilant for signs/symptoms and feel passionate about getting the word out about NPH. The shunt has been adjusted once.
    My NS did surgery very soon after the CT. I see him mid-March for a checkup. He’s my hero.

    • C.p.
    • February 22, 2019
    Reply

    Nice work!!!! What’s next!!?? Keep going!

    • Reply

      My son is 38 and has had a shunt since he was diagnosed with hydrocephlus at age 6 weeks old.
      He was always a difficult child, but after 27 he became very mean toward me his mother, and everyone else. He curses me out, screams etc. I can’t take it anymore.
      I’m glad he lives independent in his own appartment for last 13 year’s.
      I’ve been in denial that he has mental problems due to his condition, but I believe his condition has caused him to become mental. We can be talking on the phone about any particular subject, the next thing our conversation goes sour, he starts screaming at me saying you are my problem! Then he calls me names, then hangs up phone in my face. Wow…I think, what just happened?
      I can’t deal with him in person, nor over phone. All I can do is pray for my son from a distance, because I love my child!

    • Nicola strode
    • February 22, 2019
    Reply

    I get extremely dry flakey skin before my shunt fails. I literally have to hoover the bed. I guess it’s because I’m so dehydrated. Very unusual symptoms I know.

      • Di
      • March 12, 2019
      Reply

      Does your shunt fail often then. My husband had a shunt and I often wonder if his shunt is still working properly as at times his gait is awkward and slow. Do you have it checked? If so how often ? Our neurologist that we love has never suggested a check. My husband had his shunt surgery in May 2016 and we see our neurologist at least twice a year. Your thoughts please, thankyou

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