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Felix_Lopez_510

584d

I was born with hydrocephalus

Top reply
    • Livingasazebra

      349d

      Same I have dandywalkercyst

    • Livingasazebra

      349d

      Same I have dandywalkercyst

    • TheJubilantJake

      453d

      Same. You have a whole team of "hydro warriors" (I just made that up) here that have your back 🤗🫶🏼 You are not alone.

    • JAY789

      462d

      I had to have a emergency surgery last Saturday night or Sunday I was to out of it to be able to remember which day. I just finally got discharged from the hospital on Saturday and I’m so happy to be home with my family and my fur baby again.

    • Yusi

      468d

      Same 8 surgeries later, I’m 25

    • KeMe

      531d

      I was born with that condition also, it broke a couple years ago and I had to have surgery in March to replace it and it was quite the surgery

      • JAY789

        440d

        @KeMe I had to have emergency shunt surgery a few weeks ago again. This time it wasn’t on my head so thankfully I didn’t get a silly half haircut lol. This time it was in my stomach area i had a hernia that was wrapped around my shunt tubing cutting off the flow of fluid drainage. This time it knocked me out i don’t remember my mom taking me to st.Luke’s hospital in Bethlehem. I’m still recovering from the surgery my stomach area is still sore.

    • JAY789

      555d

      I’m I also have hydrocephalus and it’s difficult for people who don’t know me very well to be able to understand me. I have 3 shunts to drain the fluid off my brain but only 2 of them work anymore. But I just had the main shunt replaced the last week of February I don’t remember the exact date. But for some reason the valve that connects both sections of tubing together went bad. My regular neurosurgeon was unavailable to do the surgery so his partner performed the surgery. But for some reason since this most recent surgery my hair,skin and especially my scalp on my head is very oily and no matter what I try I can’t find anything to help control the excess body oil.

      • Tomatoface

        462d

        @JAY789 wow, that’s very interesting 🤔 (and unfortunate, sorry. Oily skin is a pain!)

    • Trista

      556d

      Also have hydrocephalus and it's very difficult for people to understand me

    • Ona

      576d

      😞😭 I hate dealing with a hydrocephalus. I want to do things that other people can do with no problem. But dealing with this condition is so stressful. My shunt didn’t start bothering me until 2019 of my high school graduation. Every since it start hurting. I been trying to avoid people fighting. Whenever I overthink things I get a headache and its so painful because I can’t do anything about it. But sleep. But my mom told me that I can’t or shouldn’t sleep on my right side and that have to sit-up sleeping. But that will cause a cramp in my neck so sometimes I’ll just go back inlay down in bed and go to sleep.

      • JAY789

        553d

        @Ona I was never told that I had to sleep sitting up just because I have my shunts.

        • Ona

          548d

          @JAY789 my mom be telling me to sit up against the wall and try to sleep the pain off 😞 but it doesn’t help

    • Felix_Lopez_510

      580d

      I was born with hydrocephalus didn’t get detected at birth till I was in kindergarten and have had maybe 8-9 surgeries thru out my life vp shunt snaps, last time It happened I use to live with my oldest brother I was walking home from Bart blacked out went thru 3 doors I don’t remember opening the gate

      • Tomatoface

        462d

        @Felix_Lopez_510 I’m not sure if mine was detected at birth. But wondering how it is/isn’t detected…

        • Tomatoface

          462d

          @Tomatoface At birth, I mean

    • Kelsey86

      584d

      Me too, it’s hard to determine sometimes why you have a headache. And it’s frustrating to see other people do things you can’t do because of it.

      • JAY789

        583d

        @Kelsey86 I completely understand it’s very frustrating watching people do things you can’t do. I use to be a Firepolice officer with my local fire company and i had to give it up back in I think it was 2019 because I had to have my 4th ventricle shunt replaced and then everything started to go downhill after that. I had my main shunt completely replaced I think it was the 3rd week of February of this year. I miss being able to volunteer and help my community. I pray that you get your situation fixed.

    • Donnie1995

      584d

      ME too. How have you been able to deal with it?

      • Felix_Lopez_510

        580d

        @Donnie1995 don’t stress

☝ 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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