Archive for the “Diary: Dx,Tx and Recovery 2006” Category

My acoustic neuroma recovery.

Wednesday, December 06, 11:11 AM – marco

I am still sore from the intubation.
Last night I tried opening it all the way but still sore.
Found a piece or Operation Room tape on my back in the shower-9 days post op. I think Salvadoran nurses put in on there as a joke knowing I was a hairy guy. iv bruises still present, Artery lead bruises are HUGE. half of my left foot and left wrist are black and blue.

First nightmare too.
came swooping down fast and went quick.
It was really bad because it was lapsed sleep within the nightmare itself.
I explain lapsed sleep in yesterdays post.

I opened my eyes sleeping homeless in a dark cave carved out of a bridge-it was my home. I was a homeless person-like in NYC or something, but-I was not only that, I was paralyzed and could not wake up. (in the dream I was having sleep lapse on my homeless bed of trash and newspapers) I heard and knew and felt a presence outside my cave opening trying to get into my sanctuary.

So I started with the toe kick then the leg kick to wake up in my homeless bed before that somebody could break in-like it was a whino, gang member, some street themed menace- I could even see the glow of some street lamp and the outline of a park bench outside my creepy cave-then the scrambling shadow scratching to get in. c’mon! leg! KICK KICKKK!zoooOOOM!WHAM woke up in bed. pulse racing.

stayed up about an hour thumbing through FAIT ACCCOMPLI, I didn’t sleep till 5am due to my spondy and lumbar issues.

called Matt Rivera about my x-rays to be sent back and talk about my wound care.

CSF that I thought was leaking may be something not related to that and more so regarding the suture style Shahinian did and layers of the skull.
Matt Said he was going to give me a call with a prescription.

The leakage is maybe a trickle per 5 mins. very clear, light tinge of red. I have a piece of gauze taped below my ear. to catch it.

I’m slowly getting used to one sided hearing. Weird, Think of that..

I sense that language concept of “one side hearing” cannot encase the enormity of the situation.

I’ll try and explain wo getting lost..

Language restricts all these issues because you are, in a way, forcing a multitude of themes within a tin can to be packaged up and sent around the world.

Some of those themes(i.e. experiences of nerve removal)-do not fit.(that’s what’s cool about other languages because some themes may fit in their tin can and not ours, vice versa)

So we have -TIN CAN

The tin can is the syntax morphology laws and such to even get something across to someone-the reason languages exist-for communication. or to keep it simple-tin can = English

Then we have – THEMES (I need another word here SCOTT help please!)
subjective thoughts, feelings, and perceptions
on any given subject.

So let’s take a theme

-balance nerve and hearing nerve loss-

then a tin can –English–

ahhh..

conclusion.

since the tin can cannot fit all the feelings I have.
I think to convey all the 100% feelings I have about the loss-I would I think need at least 4-10 more languages that have space in their tin cans to explain feelings I have but I do not know how to present them in linguistic discourse.in other words, the feelings I have re one side loss=100%
of that, maybe 8% comes across through the saying “one side hearing loss”.

I am still planning to post in the future a visual representation that language cannot explain about this one ear thing.

I recently also have come to the personal conclusion that I had an amputation.

one just can’t see it. So that is a real pain to explain to people that don’t want to take the energy to research for themselves what it means to have your vestibular cochlear nerve taken out.

I am planning to take ASL in Jan maybe*)-that will give me probably all the TIN CAN I need to convey those feelings since hearing loss is strictly related to that culture). i’ll just have to convey those feelings to another ASLer and pick up my eng and span tin cans to convey

I was able to get to about 2pm yesterday until I had stimuli overload and started to cover my good ear retreating to the safety and security of total deafness and solitude.

–122pm add

I do not know why I got this darn stoopid comedy train going on, last night I bout busted my stitches laughing with my mom at this farting preacher vid of google, then this article caught my attention.

Flatulence Forces Plane to Land

Tuesday, December 05, 2006

NASHVILLE, Tenn. — It is considered polite to light a match after passing gas. Not while on a plane.An American Airlines flight was forced to make an emergency landing Monday morning after a passenger lit a match to disguise the scent of flatulence, authorities said.  The Dallas-bound flight was diverted to Nashville after several passengers reported smelling burning sulfur from the matches, said Lynne Lowrance, spokeswoman for the Nashville International Airport Authority. All 99 passengers and five crew members were taken off and screened while the plane was searched and luggage was screened.  The FBI questioned a passenger who admitted she struck the matches in an attempt to conceal a “body odor,” Lowrance said. She had an unspecified medical condition, authorities said.

“It’s humorous in a way but you feel sorry for the individual, as well,” she said. “It’s unusual that someone would go to those measures to cover it up.”

The flight took off again, but the woman was not allowed back on the plane. The woman, who was not identified, was not charged in the incident.

The Associated Press.

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Tuesday, December 05, 1:45 PM – marco

woke up about 11am. CSF leakage yesterday, lastnight and some this morn. just seepage.

my mental/physical endurance is slowly coming back.
I was able to last through a whole lunch with grandpa without closing my eyes or retreating like a snail into trance land.

Last night I had my first lapsed sleep, lapsed sleep is when your eyes open and you are awake, but you try and move but your body is not awake-like paralysis-so slowly wo trying to panic. move my toe back and forth, still nothing-panic sat in-and I started jiggling my leg back and forth–c’mon c’mon!
Then one last kick, and BOOM, was able to wake up. heavy breathing, my body was soo tired and it felt drawn like a magnet back to sleep. I imagined those old 80s Freddy movies and was able to stay awake for another hour.

cut camera frame-no time reference-

my eyes open-body asleep again-paralyzed but conscious.

and in my peripheral vision I see someone to the right of my bed-panic sets in like a burning teapot whistle. then awake startled and pissed off at my mom who was awaiting my lucidity to reprimand me about not sleeping at 45′

I came to pretty fast and glad it didn’t last as long as the first sleep lapse. There probably is a scientific word for sleep lapse but I don’t have time to google it.

that smidgen of time of lapse though with my mom at the bed seemed to last forever, it was as if she were Kathy Bates waiting to serve me soup in *Misery*

It’s my entire fault though; I am almost back to stupid pre op normality with watching TV till 2am.

Had settled on a u2 live in Italy show.
I needed to test my monohearing.
I was happy with the few songs I heard, no glaring pains in my heart knowing which song would sound fukt. w or wo u sounded ok, melodic, calm.
I was glad I had missed streets had no name since I know it was going to sound fukt-edges layered guitars coming in a wave to envelope you at the start-but for me now perhaps the thrill of an oncoming duck being shot out of the air,-but with that song I would’ve been able to see if I could tear on my left side -that’s for sure. Bono sang in Italian too which was cool, flashed me back to a Maiden concert vid i saw in France. Bruce Dickinson
sang in French.

Then it was off to bed…as we all do..but wait..the foofighters are next! @ hyde park, so i posteponed bed to see what foofighters sounded like. They came onstage and I anticipated the sound, my fingers gripping the couch.

Hell.

they had started playing and I didn’t even know. I was in awe with the crowd too they weren’t doing crap-standing and clapping your hands at a foofighter show wtf.
There was even a girl holding a balloon in the front row. What the heck is that. She should’ve been arrested. Then I saw the reason. Dave Grohls face had melted. He was old. I was old. the world was old. It was not ffighters 1995 and it sure as hell wasn’t the longhair octopus drum player I saw playing with his old band 10/31/91 Seattle, WA Paramount theater. HERE! live video of BreedNirvana- copy n paste

http://www.youtube.com/watch?v=0Jv-JTYxWeo

Now that’s DAve Ghrohl. I don’t know who the imposter onstage at hydepark was. and if you watch the above video DO IT!-the guy that jumped onstage-he sure as hell wasn’t carrying a balloon.

So I grabbed the remote and hit it off.
I walked towards my bedroom pistoff at the ffighter betrayal. I wobbled my way to the bathroom and looked at the mirror. OH man what was I talking about Dave’s face for.

I had turned into Herman Munster.

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Monday, December 04, 4:41 PM – marco

so my friend Pat wanted an interpretion of “no me mandas la ciguanaba”-I told this to the 2 Salvadoran OR nurses right before they hit the lights.

The ciguanaba is a salvadoran scary folktale about a witch like lady that looks for men in the jungle, tempting them with her big “chiches” they get close then it’s too late to run.-she curls up into a real old witch and her chiches grow to her toes.
there are others such as the cadejo, carreta chillona, and others and since El Salvador is like a family to me, I knew the OR staff could relate-thats when they laughed and then I woke up in recovery room-with no recollection that 9 hrs had past and kuato was gone.

The context in English would not work that well, it would be too dark, “hey guys don’t send me the boogey man, or worse, don’t send me the reaper”

I couldn’t find any good google pix of the ciguanaba but a link yes!

The Salvadoran Joke reference I told the OR staff-the Ciguanaba! more info @ tinyurl.com/y464sd

The Salvadoran Joke reference I told the OR staff-the Ciguanaba! more leyendas here.

After my phone conversation with my bud Dan, I was thinking about balance. when you hear the word balance..what do you think of…like now?..

a balerina, elephant with one foot on a bucket..acrobat, balance beams,

thats what I used to imagine,
now its images of slippin in the shower, or tripping over a rottweiler chain.

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Monday, December 04, 3:54 PM – marco

got back from an outside “ghost float” a g.f. because I am moving at about 4 feet per 30 seconds. Sounds spin me around, creening for the location of the airplane, or the bird, no sound location. so the sound of a loud truck pulling out of its driveway about 50 yrds away sounds like its going to run me over, but you dont know where its at, so I startle and try not to fall over as I spin atound looking for the oncoming truck.

I havent walked with my mom since I was very young.

Since my other senses are becoming more sensitive-even smell-it can be overwhelming.

My moms child dog is a bernese mountain dog, ( ya talks to it and stuff like a human)- large, passed gas in the TV room last night-it was so bad I thought my mom would have to put a stick in my mouth to not bite my toungle like somone having an epileptic seizure. I later told her that having the dog in the house is not “conducive to my healing”.

before I forget, this is the brace I had my head in for over 6.5 hrs. looks comfortable eh?

head mount used at SBI to allow robot arm to kill kuato

head mount used at SBI to allow robot arm to kill kuato

I can still feel the “woodpress” clamp indentations in my head.

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Monday, December 04, 3:10 PM – marco

just had some grapes, peaches, tuna fish.

coughed.
coughing is bad.

can hear my cerebral spinal fluid swishing around like a can full of peaches. hurts too, I just have to hold something and take the waves of coughs, making sure my cervical spine doesn’t snap.

imagine childhood..if you dare..muwahaha

that moron kid “friend” that comes up and puts you in a headlock and noogies you..

so with me, when I cough, the kid comes up with a large pillow, envelopes your head, does the headlock, a noogie, shakes the pillow..
and your going all the time, “haha, ya cool man, your cool, I can handle a noogieha ha ya ya”.

but the whole time you are not focused on your head-but your airway- to hack out that dry piece of cracker that is stuck there.

I suppose to convey to you to the feeling of having your left vestibular nerve taken out-imagine having someone coming up behind you as you are reading a book with slippers and some hot cocoa..and they push your head down really fast and laugh. your muscles are relaxed at first, then tense up to shoot your head back to position-+your really pissed off.

Now Imagine getting USED TO THAT, happening all the time as you walk up stairs, sit on toilet, eat, read a book, etc head push head push head push. That is what people that have Acoustic Neuromas removed- go through for rehab over the course of 3-8 weeks. I am one week out.

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