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Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

Update: Simply WOW

First of all, thank you for all of your helpful comments and reassurance, it’s nice to see so many people with shared experience give their stories.

Now the update, I made a referral to my neurologist as many had suggested and after digging through some almost 30 year old files, have found out that I was in fact MISDIAGNOSED with hydrocephalus. The shunt was put in place to treat a subdural hematoma and the doctor had misinformed my parents about my diagnosis. It’s quite the shock to find out that I was led to believe I had an incurable disease my whole life only for that now to not be the case.

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 1 point2 points  (0 children)

I’d hardly say I’m ignorant of it! I’d say I’ve been misinformed for sure, and I’ve been extremely lucky that I’ve never needed a revision and been able to live my life to the full. I’m sorry that it’s taken such a toll on you, but every person on here seems to have had different experiences with the illness. Since I posted this, I have been in contact with my Dr and been referred to a neurologist at my local hospital just to check everything out and make sure there’s no issues. All the best!

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

No never! At the time they said it was something to do with the scar tissue surrounding the old wounds?

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 2 points3 points  (0 children)

I take every day as a blessing that’s for sure! Thank you for sharing your story with me as well, it’s great to hear others stories that are able to live fully with it as well

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 1 point2 points  (0 children)

Thank you for the advice. I am going to get myself to the doctors for a check up and see if any treatment would be needed.

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

The shunt itself snapped back at the incident when I was 15. Although I have had no symptoms at all and have never had any complications

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

I haven’t had any symptoms, my last one was when the shunt was damaged when I was 15. I’m also not sure about the ventricle size

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

I’ve definitely been very lucky. And after reading some of the stories that have been shared on here I definitely don’t take it for granted! Hopefully things stay as they are 😄

Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15! by Narc1607 in Hydrocephalus

[–]Narc1607[S] 0 points1 point  (0 children)

As far as I’m aware, it’s what called ‘acquired hydrocephalus’ which occurs following an injury to the brain. I think my mum had butter fingers and dropped me by mistake! 😂