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727d
I was born with hydrocephalus
3
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Congenital hydrocephalus
Headache
Generalized pain
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492d
Same I have dandywalkercyst
0
596d
Same. You have a whole team of "hydro warriors" (I just made that up) here that have your back š¤š«¶š¼ You are not alone.
605d
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 Iām so happy to be home with my family and my fur baby again.
611d
Same 8 surgeries later, Iām 25
674d
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
1
583d
@KeMe I had to have emergency shunt surgery a few weeks ago again. This time it wasnāt on my head so thankfully I didnāt 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 donāt remember my mom taking me to st.Lukeās hospital in Bethlehem. Iām still recovering from the surgery my stomach area is still sore.
698d
Iām I also have hydrocephalus and itās difficult for people who donāt 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 donāt 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 canāt find anything to help control the excess body oil.
@JAY789 wow, thatās very interesting š¤ (and unfortunate, sorry. Oily skin is a pain!)
699d
Also have hydrocephalus and it's very difficult for people to understand me
2
719d
šš 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 didnāt 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 canāt do anything about it. But sleep. But my mom told me that I canāt or shouldnāt sleep on my right side and that have to sit-up sleeping. But that will cause a cramp in my neck so sometimes Iāll just go back inlay down in bed and go to sleep.
695d
@Ona I was never told that I had to sleep sitting up just because I have my shunts.
691d
@JAY789 my mom be telling me to sit up against the wall and try to sleep the pain off š but it doesnāt help
723d
I was born with hydrocephalus didnāt 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 donāt remember opening the gate
@Felix_Lopez_510 Iām not sure if mine was detected at birth. But wondering how it is/isnāt detectedā¦
@Tomatoface At birth, I mean
Me too, itās hard to determine sometimes why you have a headache. And itās frustrating to see other people do things you canāt do because of it.
6
726d
@Kelsey86 I completely understand itās very frustrating watching people do things you canāt 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.
ME too. How have you been able to deal with it?
@Donnie1995 donāt stress
ā 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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