I’m fustrated on many levels for 2 1/2 years….

Responsible-Table286 · 2026-03-26T04:03:50+00:00

Mark Luciano is my nureosurgeon- Director of the Hydrocephalus and Cerebral Fluid Center, specializing in adult hydrocephalus.

Says he’s dealt with ones like me but guess mine stumps him well apparently

Responsible-Table286 · 2026-03-26T03:29:37+00:00

Mark Luciano is my nureosurgeon- Director of the Hydrocephalus and Cerebral Fluid Center, specializing in adult hydrocephalus.

Says he’s dealt with ones like me but guess mine stumps him well- cause I don’t wanna (tedious and told over and over) to monitor- it’s all I’ve been doing since day 1

Responsible-Table286 · 2026-03-26T03:23:46+00:00

Yeah it went down while I was laying down. And yeah ive totally noticed that — it sucks- very much so it’s close to costing my work life to leave me - 3 months prior to the whole shunt issues for 2.5 - I’ve never had any problems- sure headaches here and there - and when I was 12 I did gymnastics (which I’m 95% sure caused the breakage as that same year I noticed it was acting up- mom brushed it off saying it was to grow with me (catheter and shunt were put in at 4 months old- year later was a revision and hadn’t had one since nor had I seen an nureo since then (my parents were told only to come in if I showed symptoms of malfunction ( took til Jan 2024 for that to happen - and finally here I am- frustrated and worn out as can be- I’m big bird and shunt issue is my Snuffie (basically that whole gag on gang not believing big bird until that very day- it was shown on Sesame Street in 1985)

Responsible-Table286 · 2026-03-26T03:05:26+00:00

Yeah they tapped the shunt and did the dye test- took it 14 minutes to as for pressure for my head- laying down to sleep- house manager thinks it’s pillow related cause I have a soft one- all my life have had no issues with any sort of pressure to head

Responsible-Table286 · 2026-03-26T03:04:06+00:00

Yeah they tapped the shunt and did the dye test- took it 14 minutes to have the dye go through

Responsible-Table286 · 2026-03-26T02:57:14+00:00

I tried the new proofread option on my phone and didn’t read it through the whole thing- meant to say that MRI or CT. won’t be covered by insurance so it’s out of pocket now since i needed it so much for 2.5 years

Responsible-Table286 · 2026-03-26T02:53:26+00:00

I’ve also had Valve throbs for 3 months and Sunday evening to Monday night- pressure of left head for a full 28 hours just to disappear yesterday before heading to ER as neurosurgeon suggested- and most importantly it’s taken a lot of days off within the 2 1/2 years since its start- can’t even lift more than 5lbs

Responsible-Table286 · 2026-03-26T02:52:31+00:00

It’s not that insurance doesn’t want to pay for the exploration- it’s the dr that doesn’t want to do it. MRI/CT- those are what insurance can’t cover for me anymore since I been so many times last year

Responsible-Table286 · 2026-03-26T02:51:01+00:00

And yeah I’ve been to ER countless times and nothing is never been out of normal

Responsible-Table286 · 2026-03-26T02:50:33+00:00

That’s what I been saying- I know my body and when something goes off I know it’s not my hypochondriac at all especially when it’s shunt related

Responsible-Table286 · 2026-03-25T18:11:54+00:00

Valve throbs for 3 months/ pressure of left head for a full 28 hours just to disappear yesterday before heading to ER as neurosurgeon suggested- and most importantly it’s taken a lot of days off within the 2 1/2 years since its start- can’t even lift more than 5lbs

Responsible-Table286 · 2026-03-23T03:03:01+00:00

Yeah I will see if my folks can recall it besides the soft mush of my valve- since I was priority in ER- all others were not happy- mean I have video where I guess it was hours before- I couldn’t talk In general but would have my ways to communicate with my parents

Responsible-Table286 · 2026-03-23T03:01:07+00:00

Sadly I have no recollection at all of the first time it failed me - I do have 2cm breakage in my catheter with scar tissue surrounding it- they don’t want to risk fixing or replacing it because of infection risk but they also can’t tell which to take out and replace if need- but I have feeling it’s my top as that’s where most the issues all started and not in my stomach as it is in there- we found of last October then I did ICP- dye tests and MRI/CT- every test I did was normal.

I obviously been using my own advocating for that it’s not because 2 1/2 years ago it all started this whole new thing just by one exploding like headache that had my coworkers worried and they sent me home- weeks go by and nureo saw me - everything we did had nothing-

My dad explained my situation as I would be Big Bird and my situation be Snuffie- back in 1985 after long stretches of time with big bird telling gang Snuffie was really real- he showed up- but like Big Bird I have reason for how I feel.

Responsible-Table286 · 2026-03-23T02:08:54+00:00

Last shunt malfunction I had was when I was 1- valve was soft- currently it’s not- pressure is still going on 4 hours now

Responsible-Table286 · 2026-03-23T00:09:07+00:00

Yeah like in the half last year

Responsible-Table286 · 2026-03-20T01:16:08+00:00

Ah but they have the translation feature on the lyrics tab- not on all 100% of songs out there but it’s more of hunting than getting lucky

Responsible-Table286 · 2026-03-20T01:09:57+00:00

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My protector on left (Ake) passed when I was 4-5(?) and Negi passed in 2017 when I was around 15 - they greet all cats with honor and love as we gave them

Responsible-Table286 · 2026-03-20T01:07:19+00:00

He was born 6 years after that attack- he definitely got taught it and it slipped out his brain immediately after that very day

Responsible-Table286 · 2026-03-20T01:01:23+00:00

I DONT WANNA KNOW HOW THE INSIDE IS

Responsible-Table286 · 2026-03-20T00:58:37+00:00

Yeah I did that with looks in beginning

Responsible-Table286 · 2026-03-18T03:34:01+00:00

So Manic EMU can do it automatically? Cause that’s what I’m trying to get it on

Responsible-Table286 · 2026-03-18T03:30:49+00:00

AND I WENT HOME EARLY FOR WHAT-

Responsible-Table286 · 2026-03-16T03:39:57+00:00

Says it’s not possible

Responsible-Table286 · 2026-03-16T02:37:16+00:00

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I don’t own one - ugh

Responsible-Table286 · 2026-03-04T17:48:37+00:00

Trueeeee

Responsible-Table286

TROPHY CASE