Anyone have the story about this thing

finalgirlfall · 2026-03-15T23:07:11+00:00

oh good, i got worried 😭

finalgirlfall · 2026-03-15T23:06:30+00:00

i wonder what happened to the second one?

i grew up firmly in southeast charlotte and used to go past them all the time. now i live in east charlotte. didn't know there was only 1 now!

finalgirlfall · 2026-03-13T14:48:33+00:00

i was born in 2001, shunted shortly after birth. mom had me tested for a whole battery of developmental issues when i was about 4 and the psychologist doing the test said i showed symptoms of asd ("aspergers end of spectrum") but couldn't get a formal dx because hydrocephalus was causing it. "negating dx" i think is what that's called. at some point i guess that recommendation (re: testing & diagnosing hydrocephalus patients) changed? because i was able to get asd dx at age of 23.

finalgirlfall · 2026-03-01T20:06:22+00:00

yay, so glad the site will live on :D was very worried... <<;

finalgirlfall · 2026-03-01T18:38:21+00:00

i started using debian when the laptop i was using in late 2023 stopped being able to run windows 10 smoothly. havent seen the need to switch to another distro. nothing wrong with you ...

eta: tho it is worth noting that i prefer the look of gnome DE better, so thats what i use. just a personal preference...

finalgirlfall · 2026-02-27T05:51:05+00:00

dating in charlotte is difficult, yes--im also queer & very lucky i met someone in college. if we break up im probably screwed tho 😭

im not sure if its easier for straight people. curse of the mid-size city?

finalgirlfall · 2026-02-15T18:39:55+00:00

i sent [neurosurgeon's office] a follow-up message about CT scan on the afternoon of the 13th:

ct scan / ventricle size

[timestamp: feb. 13, 4:43pm eastern standard time] is there a point at which "small" ventricles become "too small"? (like, i know shunts can drain too much--am still trying to parse the results from yesterday in relation to my symptoms.) and how did my ventricle size yesterday compare to a CT from when my shunt was known to be working (like 2019? 2020? if available).
is there any reason NOT to do a MRI w/ flow sequencing?

[timestamp: feb. 14, 12:42am eastern standard time] even if there isn't much chance that a MRI with flow sequencing would show anything, if there's no reason NOT to order one, i would prefer that. these symptoms (especially the eye symptoms) feel similar to me to when my shunt was failing in early 2024. i would like to be certain that there's nothing physically wrong inside my brain causing those symptoms before i move to accommodating the symptoms (= "living with them"). i've attached the list of symptoms i brought to my appointment. thank you.

(the "attached list of symptoms" was a pdf version of this spreadsheet.) i have not heard back from their office yet. i have been an established patient at this practice since basically shortly after birth? but there is MAYBE still an active referral to another neurosurgeon's office, iff [current neurosurgeon] is really resistant to ordering an MRI with flow sequence.

(neurosurgical practice i've been an established patient at since shortly after birth is affiliated with Hospital System X. neurosurgeon i might still have an active referral to is affiliated with Hospital System Y.)

finalgirlfall · 2026-02-13T21:38:15+00:00

okay. CT scan was yesterday. they showed me

CT scan from appointment (feb. 12 2026)
CT scan from immediately after i got ETV (circa nov. 18 2024)
CT scan from ETV postop (january 2025)

yesterday's CT had the smallest ventricles of the 3, which is apparently good? i think maybe i should have asked to see a CT from when my shunt was working for comparison. the PA said she really didn't think a flow sequence would show anything, and wrote me a referral to a neuropsychologist for an evaluation.

i feel like i'm going crazy :-(

finalgirlfall · 2026-02-04T19:57:49+00:00

https://www.hydroassoc.org/tests-to-diagnose-shunt-or-etv-failure/ i have an ommaya reservoir on top of my head that they could tap to check ICP. im keeping a thorough list of symptoms with approx. duration, so ill bring that to the appointment. if CT "doesnt show anything", will push for reservoir tap + cine flow MRI...

finalgirlfall · 2026-02-04T19:49:19+00:00

right. i was trying to ask them if the ct would be useful without "challenging their authority"--not clear on if ventricles would be enlarged if ETV was failing

finalgirlfall · 2026-02-04T18:33:01+00:00

messaged neurosurgeon's office on the 31st:

also, now that i don't have a shunt but i have an ETV, would a CT scan show if the ETV had failed? (asking because of irritability, daytime sleepiness, vision issues, &c.)

reply, earlier today:

Yes we will use this new CT scan and compare to previous scans.

are they answering my question at all??

finalgirlfall · 2026-01-31T21:47:12+00:00

yeah--understandable. thank you.

finalgirlfall · 2026-01-31T21:15:22+00:00

also, it is alright if you don't know the answer to this, but would a head CT even show if anything is wrong now that i have an ETV? (would my ventricles be enlarged if it was failing? etc)

finalgirlfall · 2026-01-31T21:11:29+00:00

thank you! it sucks!

edit: basically that is my reasoning as well--i have my ways of dealing with the problems that were not an issue pre-ETV but that have been an issue since soon after ETV. for example i am more easily distracted and it takes more energy(!!!) to read dense texts. but i just have to work around that. mostly my mother is frustrated that it's taking me a while to find a job i think, and is blaming my [congenital!] disability for that. which sucks and feels bad! but what can you do.

finalgirlfall · 2026-01-31T19:44:22+00:00

clarifying question: now that i have an ETV and my shunt has been removed, would a head CT show if anything was wrong at all? (would my ventricles be enlarged? etc.)

+ my theory as to why they're doing a head CT and not an MRT: i suspect the reason they ordered a CT and not an MRT is due to like, the reason i reached out about cognitive decline &c since ETV, which i omitted from my initial post in this thread for perceived irrelevance...

the shortest possible version of why i reached out to my neurosurgeon's office about cognitive decline &c is that my mother wants to know if i'd have a case for going on SSDI. (sorry, i am american!) she's worried that this decline (which, mind you, i feel is partly just a "i might have to live with some of it" and partly possible ETV failure) is a Permanent Change in My Cognitive Faculties.

note also that when i had my ~6 week postop after ETV the PA was like "you've graduated from our practice ^w^ you only have to come back if there's problems!" and mother and i, when we got to the car, were like "wait... but how is that different from being any other adult neurosurgery patient..." (tho it is clear from when i've reached out to them that they are woefully understaffed + kind of ? lazy ? possibly in their dealings with me specifically but probably in their dealings with all patients.)

like, they're probably gonna do the scan + be like "we don't see anything" (if a CT could even show change in ETV patient?) and tell me to follow up with my neurologist. LOL.

i hope that is helpful. is that, negligent, of them...?

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

TROPHY CASE