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My Life with Hydrocephalus: 17 Surgeries Later

darkdaylily

795d

I was diagnosed with Hydrocephalus at 8 and have had 17 Hydro-related surgeries.

2

11

11

Chronic Headache

Congenital hydrocephalus

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    • Pookie1214

      27d

      @Reggie__Krickeberg I just had my 9th a week ago

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    • Tomatoface

      617d

      What exactly is a “revision”? How long did it take/cost?

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      Reply
      • ArtsyRedhead

        605d

        @Tomatoface I had to have all of the old “pipes and tubes” swapped out since my equipment was so old and out of date. Insurance covers the cost. I started have migraines and intense pressure- When I was scanned - they saw a break in the tubing. So they went in and replaced everything…

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        • Tomatoface

          605d

          @ArtsyRedhead and im so glad insurance covered the cost for you!

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          Reply
        • Tomatoface

          605d

          @ArtsyRedhead ah ok gotcha. I was told I needed a shunt after going to the ER, but went to a neurosurgeon who told me there was nothing that could be done, esp. since I don’t have severe symptoms….and my PCP acted like she didn’t know much about it either and thought I was going to get a shunt…(and ofc didn’t offer any sympathy/empathy) Goes to show most ppl (esp. in the medical field) don’t know anything about this condition… 🤦‍♀️

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    • ArtsyRedhead

      781d

      how did you know when a revision was needed? I still experience frequent headaches and my revision is only 2 years old. Also- did any of you have undiagnosed learning disabilities growing up? I had my first shunt placed in 1982- there wasn’t much information out there as to the side effects of hydrocephalus.

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      Reply
    • Eva24

      793d

      I had about the same like you 110 revisions since I was 2

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      Reply
    • Reggie__Krickeberg

      793d

      I have had over 100 revisions since 2004. I’m 29 .

      1

      Reply
      • Pookie1214

        27d

        @Reggie__Krickeberg I just had my 9th a week ago

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        Reply
    • Eva24

      795d

      I had it my whole life and got picked on because of it

      1

      Reply

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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