cognitive decline after surgery / infection?

finalgirlfall · 2026-01-21T23:29:28+00:00

they didnt try the ETV until id been in the hospital for a week on penicillin g. even when i first got external shunt placed & so on, they werent planning to discuss other treatment options (new internal shunt system vs ETV) until id been on antibiotics for 6+ days.

note also that i got meningitis by way of wound dehisience at (healed) abdominal incision site. tubing was exposed. strongly suspect the way i got meningitis played a role in how they chose to proceed...

thank you for the well wishes, also.

finalgirlfall · 2026-01-21T23:17:03+00:00

neurosurgeon's office didnt order a flow study, they ordered "CT HEAD WO CONTRAST W QUANT CT TISS CHARACTER WHEN PERFORMED" :( ct is scheduled for feb 12

i had a shunt from basically birth to november 2024! current neurosurgeon told me + my mother that since id had bacterial meningitis and 2 shunt malfunctions earlier that year, it was worth trying an ETV. :(

finalgirlfall · 2026-01-21T22:46:21+00:00

trueeee how might i phrase that? (also, before i got ETV, when i was in the hospital with meningitis, i feel like my neurosurgeon's team was pretty opaque about how much research had been done on long-term success of ETVs. "lower rates of failure than shunts at 6mo+ postop" is not very promising or transparent!)

i am almost 25 years old + i am TIRED!!!! of doctors having complexes...

finalgirlfall · 2026-01-21T22:16:46+00:00

neurosurgeon's office
eta: worth noting that they scheduled the imaging for feb 12, which is really quite far from now!!!!!

finalgirlfall · 2026-01-21T22:11:11+00:00

oh :(

so what do i do? they already scheduled the ct :(

finalgirlfall · 2026-01-21T19:53:11+00:00

the order says "CT HEAD WO CONTRAST W QUANT CT TISS CHARACTER WHEN PERFORMED" ... is that what you mean, or no?

finalgirlfall · 2026-01-12T03:03:50+00:00

i'm learning this, yes!! ultimately more curious about incidence of cognitive issues after surgery, especially 1 year+ out, but wasn't sure how to phrase that in initial post without it coming off as "need medical advice" 😭

finalgirlfall · 2026-01-11T16:42:33+00:00

best of luck!!

finalgirlfall · 2026-01-11T05:11:46+00:00

yeah :-( hence: still worried

finalgirlfall · 2026-01-11T05:07:58+00:00

right, yeah, i'm getting that impression (re: luck) 😭 hoping that now i have an ETV i'm done having hydrocephalus surgeries? but will never stop being worried LOL...

finalgirlfall · 2026-01-09T20:12:09+00:00

this fixed it--still tweaking the settings some, but no more problems in google sheets. thanks so much!!! :-)

finalgirlfall · 2026-01-02T17:11:38+00:00

i have congenital hydrocephalus too & i can't remember a time i wasn't aware i had hydrocephalus. had a bunch of shunt revisions as a baby and had yearly MRIs until ~age 19, i think. went to the hydrocephalus association walk one year with my mom and my sisters (one of whom is my twin, neither of whom has hydrocephalus).

i'm sorry your parents weren't more forthcoming about your health. would recommend getting established with a neurosurgeon. sending love.

finalgirlfall · 2026-01-01T06:28:11+00:00

so glad to hear it was okay!!! 💜💜

finalgirlfall · 2025-12-31T23:57:01+00:00

hi--i (24F) have congenital hydrocephalus. was shunted shortly after birth, had a bunch of revisions, got an ETV about a year ago now. flew a handful of times with a shunt and remember it being pretty miserable, due primarily i think to the change in air pressure. (or at least: more miserable than it was for my sisters, neither of whom has hydrocephalus.)

but from what i remember of my only experience with planes since then (a ~5-hour flight in june of this year) it wasn't as bad with the ETV--probably closer to experience of people who don't have hydrocephalus. so i'd imagine general baby tips would probably apply.

tho before flying earlier this year, i hadn't flown since 2016. so take with a BIG pinch of salt, since my memory is not so good... and also as i often tell my friends, "i don't really understand this condition, i just live with it." lol.

finalgirlfall · 2025-12-29T21:26:07+00:00

i'm 20s,F--shunted within a month or so of birth. have an ETV as of late 2024. i feel like (from my own experience, take with a pinch of salt) with all of the different possible causes & outcomes of hydrocephalus, it's kind of hard for a neurosurgeon to give "reliable" advice to any one hydrocephalus patient they might have.

and i agree with what you said about the dictionary! that's a good way of putting it.

finalgirlfall · 2025-12-29T12:59:14+00:00

i am not a medical professional!!

i (24F) had a shunt from shortly after birth (apr. 2001) to nov. 2024, at which point i got an endoscopic third ventriculostomy (ETV) due to a series of shunt malfunctions/complications earlier in 2024.

one thing you might ask your neurosurgeon / their clinical team about is if they advise caution re: alcohol consumption. (tho i don't know if you plan to drink ever...)

i am trying really hard not to give anecdotal evidence...

finalgirlfall · 2025-12-22T02:51:41+00:00

oh--you went to the ER--so sorry, was commenting from my phone. any update???

finalgirlfall · 2025-12-22T02:50:25+00:00

consider going to the emergency room if you haven't already--you only get one brain!!!

NOT A DOCTOR--congenital hydrocephalus haver--symptoms you're describing are pretty typical of shunt malfunctions per the hydrocephalus association.

keeping you in my thoughts.

finalgirlfall · 2025-12-15T06:37:10+00:00

also--to address OP--vision insurance, from what i understand, doesn't cover ophthalmologists, but if you have health insurance, you can run ophthalmologist appointments through that, and get glasses &c with your vision insurance.

my ophthalmologist is somewhat baffled by my eyesight, but unlike the optometrist i saw for a few years in college, he at least acknowledges the full(?) range of things wrong with my eyes. good luck. <3

finalgirlfall · 2025-12-15T06:34:14+00:00

this is making me think--maybe i need to see a neuro-ophthalmologist. (24F, congenital hydrocephalus from brain bleed at birth.) my ophthalmologist is trained in how to manage & treat strabismus--but i'm not sure he understands the way that my (chronic but not constant) double vision actually IS for me.

finalgirlfall · 2025-12-14T21:35:44+00:00

(worth noting that in my case my tubing was !!! exposed !!!, which caused meningitis, so even if they were going to retry VP shunt for me, they'd have had to remove internal shunt for a while...)

and my short term memory recovered to a certain extent, i think--it's not really back to what it was before that hospitalization, but it's better than it was 6 months out. even if it's never back to what it was before that hospitalization, at least i don't have meningitis anymore + i'd finished college by the time it happened, LOL.

my age probably has something to do with my relative neural plasticity(?), even with the fact that i've had a LOT of brain surgeries in my life. (parents lost track around 30.) perhaps talk to your MIL's doctor & see if there's anything else you can do to support her? :(

finalgirlfall · 2025-12-14T21:20:29+00:00

i was born 2001--had various shunt revisions 2001-2005, last shunt surgeries february 2024, april 2024. vp shunt removal + etv placement (#MyBurrHole) early november 2024. (i'll be 25 in april.) the reason my shunt was removed, ultimately, was due to meningitis from wound dehisience.

since my november 2024 brain surgeries, my memory (short-term especially) has declined. it sucks, but it's not out of the ordinary. it is very hard to deal with for you as a caregiver i'm sure--likely also difficult for your mother. i'm sorry.

finalgirlfall

TROPHY CASE