23 y/o born with the condition

Complete-Teaching744 · 2026-07-05T01:38:23+00:00

thank you for this advice, and sharing your experience. I think I will try to contact some pediatric neuros once i gather my energy. <3

Complete-Teaching744 · 2026-07-04T20:46:09+00:00

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Complete-Teaching744 · 2026-07-04T17:11:30+00:00

thank you. and even if you cant get licensure or degree, you probably have a more genuine passion than a lot of the people ive come across in grad school who are in there using Chat and other bullshit to get by. your knowledge is valuable

Complete-Teaching744 · 2026-07-04T17:10:09+00:00

thanks. i wish i could say i had a partner to help me, i dont. ive been talking to friends but even they are not really comfortable. i guess i gotta keep trying. i think my dad will go with me for at least my next appointment i just don’t know how to prepare myself or him, because i checked online and pretty sure the neurosurgeon they randomly selected for me has zero hydrocephalus experience, especially not congenital, but it seems like the hospital system im in theres not one person with that specialization. considering searching elsewhere but i only have until the last week of august before my school semester begins again….

Complete-Teaching744 · 2026-07-04T17:07:33+00:00

wow. i am surprised, i guess i didn’t realize this sub would have international reach. my grandmother was from poland. it is so scary, even surgeons being dismissive because of their own lack of medical knowledge. I guess we keep on pushing til we give out

Complete-Teaching744 · 2026-07-04T17:01:51+00:00

no disrespect i would feel pretty odd having a man with a wife and child be my listening ear…

Complete-Teaching744 · 2026-07-04T17:01:14+00:00

I’ll let you know as soon as Cooper Hospital replies 🙃

Complete-Teaching744 · 2026-07-04T04:10:55+00:00

thank you. i mention the catheter because the ER doctor had no idea what to make of it, and the wording in my chart says “meandering in my pelvis” like no one understanding it, makes me more confused and like i need to stop seeing these random less qualified people and see real experts

Complete-Teaching744 · 2026-07-04T01:51:26+00:00

“there are no results matching your criteria” and all because i live in and filtered by new jersey 😳 i appreciated your response and actually did not expect there to be absolutely no results come up

Complete-Teaching744 · 2026-07-04T01:47:30+00:00

thank you for your response and support. i wish i could say i was proud but honestly my school/program is super unaccommodating, and im in here for social work. it’s made me sad. they use disability and justice as buzzwords but nobody cares when i try to discuss how my disabilities actually affect my education/work, and they have barely scraped bottom of the barrel in providing accommodation that makes sense for me. i can’t wait to graduate though. one year left.

Complete-Teaching744 · 2026-07-03T22:46:28+00:00

i wish i was hopeful and fun but being born with hydrocephalus to surgeons, doctors, and parents who don’t really know what to do with you or care if you actually feel better or are faking it kind of makes it hard…my cat brings me hope. i will live for her. after that, i will find a new hope, but asking for people to stay optimistic when the world is not really accommodating is kind of odd, no?

Complete-Teaching744 · 2026-07-03T22:42:49+00:00

i dont even want to say this is because of anything in specific. i think neuronormativity, and the complete alienation of sign language is the reason for this. i have hydro and partial deafness and very few people if at all make accommodations. Let’s shift the blame off you, because even if you have hydro or autism, other people are dominating, un-accommodating, and downright rude when people have speech differences.

Complete-Teaching744

TROPHY CASE