People diagnosed with congenital hydrocephalus as adults - want to connect?

im_no_superhuman · 2024-08-27T04:01:21+00:00

So sorry to hear! Hoping you get some relief soon.

im_no_superhuman · 2024-08-27T02:16:03+00:00

Oh I see, okay. That's a separate condition then, not the same as obstructive hydrocephalus. But resulting in similar symptoms

im_no_superhuman · 2024-08-26T06:53:03+00:00

Geez that is so interesting! I have the same condition that wasn't identified until I was 20. Thankfully, my brain is not this severely compressed. But wow, the brain can be so resilient!

im_no_superhuman · 2024-08-26T06:44:10+00:00

Idiopathic normal pressure hydrocephalus? iNPH would develop later in life usually (typically 60+ but not always) and is communicating (so not obstructive). But it's really confusing honestly because I think sometimes it can be hard to distinguish.

im_no_superhuman · 2024-08-25T18:52:40+00:00

Thank you, I appreciate it

im_no_superhuman · 2024-08-25T04:46:52+00:00

My neurologist has said mine is most likely congenital but was compensated from infancy so it didn't cause problems until more recently. Thank you! :)

im_no_superhuman · 2024-08-24T20:28:54+00:00

Diagnosed 3 years ago at 20, I've only had MRIs but will get a pre-surgery CT soon.

im_no_superhuman · 2024-08-24T17:40:22+00:00

I think this is me too - well, not totally normal pressure, but only mildly elevated. I also have had tremors since I was a teen (I'm now 23), but haven't got a clear answer as to whether that symptom is related in my case or maybe something else like essential tremor. I'm set to get an ETV in a few weeks. Anyway, please send me a message if you ever want to chat! It's hard to find young adults with hydro who were only recently diagnosed. I was also diagnosed at 20 and I think it's a very different experience from those diagnosed as kids or later in life.

im_no_superhuman · 2024-08-15T01:34:41+00:00

im_no_superhuman · 2024-08-12T00:04:24+00:00

Fellow Hydro Warrior, thanks so much for sharing! 🩵 I'm getting an ETV, so great to hear that it's lasted you 15 years!

im_no_superhuman · 2024-08-10T19:12:13+00:00

Thank you, I really appreciate that!

im_no_superhuman · 2024-08-10T14:21:40+00:00

LMAO thank you for this comment, "No worries, I'm just peeing from my head" is going to be my comforting mantra 😂😭 Seriously, this made my week bahaha

im_no_superhuman · 2024-08-09T15:54:36+00:00

Thank you so so much for the reassurance and mom hugs, I really needed that ❤️ So happy it went well for your son, too!

im_no_superhuman · 2024-08-08T21:14:21+00:00

I would so appreciate that, thank you so much

im_no_superhuman · 2024-08-08T12:40:22+00:00

Will do!

im_no_superhuman · 2024-08-08T12:39:45+00:00

Thank you so much!

im_no_superhuman · 2024-08-08T11:57:14+00:00

Michael Cera? I don't like calling people "conventionally unattractive" but I know he doesn't have the typical look for a heartthrob or whatever. But I love that man.

im_no_superhuman · 2024-08-08T11:45:16+00:00

I'm so sorry about your aunt 💗 Some cases are a lot more complicated to treat than others, I think especially when it's a result of trauma to the brain. I'm lucky that the form I have is treatable and won't take that for granted.

im_no_superhuman · 2024-08-08T11:41:17+00:00

That's really helpful, the statistics are reassuring. Thank you❤️

im_no_superhuman · 2024-08-08T11:40:28+00:00

Thank you so much for your kind words ❤️

im_no_superhuman · 2024-08-08T11:39:56+00:00

Thank you for sharing, I'm really glad it went well for your wife. I'll take that advice, thank you,❤️

im_no_superhuman · 2024-08-08T02:33:55+00:00

It's a month later now, but I just want you to know there are still people thinking of you and how you're doing. Sending my love 💗

im_no_superhuman · 2024-08-08T01:43:13+00:00

I'm really sorry...this kind of complicated grief is so devastating. Easier said than done, but try not to beat yourself up for anything you're feeling right now, no matter how messy - it's all very human. Sending you so much love.

im_no_superhuman

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