Letter of my mom for my surgery on march 10

this is the updated version of this..

I am writing in behalf of my 24-year old daughter Maria Kathrina Yarza (Kcat).Almost four years have past after Kcat was diagnosed with Neurofibromatosis Type 2 (NF2)a very rare genetic disease. Neurofibromatosis Type II) is an inherited disease. The main manifestation of the disease is the development of symmetric, non-malignant brain tumours in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Most people with this condition also experience problems in their eyes. NF II is caused by mutations of the "Merlin" gene which probably influences the form and movement of cells. The principal treatments consist of neurosurgical removal of the tumors and surgical treatment of the eye lesions. There is no therapy for the underlying disorder of cell function caused by the genetic mutation.

I'll hear again!

Moved with compassion, Jesus touched their eyes; and immediately they regained their sight and followed Him.
Matthew 20:30

rochelle shared me this quote the other day.. ay oo! talaga!

March 10.. Gimme Money! :P

mark your calendars.. my tentative schedule for surgery given by my dr. is march 10.. grabe! it's so near na.. it's still tentative though.. we'll still finalize everything on the coming days.. i'm just so happy that my surgery has a scheduled (tentative nga!) date already.. dun na rin punta non.. :P dra. chiong even ordered her secretary to book the operating room on march 10.. ang saya diba? and yes! i'll be having cochlear implant! woohoo! my hearing tests are all positive.. i would benefit from CI! i was really rooting for ABI since CI won't work on deaf NF2 patients like me, that's why ABI was born.. basta just google it nalang to understand it clearly.. :P basta it means, i won't be having another open brain surgery.. galing diba?

Your Trash CAN Help 4 Lives

February 17, 2008

Greetings,

My family and I are appealing to your good heart to help us in our time of dire need. I, my two brothers and sister, for reasons that defy medical explanation have all been diagnosed with a very rare genetic disease called Neurofibromatosis Type 2 (NF2). NF2 is characterized by the development of non-cancerous tumors in the region of the cranial nerve VIII, which is the auditory-vestibular nerve that transmits sensory information from the inner ear to the brain. Depending on the location, the tumors can affect control, balance, speech, eye movements, facial sensations and most importantly, hearing. Although there is no cure for NF2, the tumors can be surgically removed to stop them from further affecting our health.

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Hindi ako bingi, tahimik lang!

who said i'm deaf? i'm just too tired to use my ears and listen.. may ganon?

hahaha! seriously, sometimes i forget that i'm deaf.. there are times when i thought that a certain situation i'm in is the reason why i'm not hearing anything.. baliw eh! hehe.

EPISODE 1:
while i was watching t.v.:
i thought: "ay siguro kaya di ko marinig kasi naka-shades pa ko"
i removed my shades
i still can't hear the tv..
i realized, i'm deaf pala!

EPISODE 2:
i was in fron of the computer (as always), my mom was in the kitchen, talitha and maro were here in the sala too (i can't remember what they're doing)..
i asked: "bakit ang tahimik nyo?"
"ay oo nga pala bingi ako"
then talitha wrote a note on a piece of paper and posted it above the monitor, it says, "hindi ka bingi, tahimik lang"

EPISODE 3:
i was watching tv while i'm sitted at the sofa beside, then i move a bit coz i wanna stretch my legsup the sofa..
i then thought: "ayan tuloy di ko na marinig, ang layo ko na kasi eh"

EPISODE 4:
i was reading my mom's lips while she's talking to my friends.. chika ever! syepre i'm chismosang bingi eh! then she move a bit far from me.. i had a hard time catching up with her stories..
i thought: "ah kasi lumayo sya kaya di ko na marinig"

EPISODE 5:
maro has chicken pox.. while we were eating lunch together in the living room..
in my mind was: "kaya siguro di ko marinig si maro kasi may sakit siya"

EPISODE 6:
after taking a bath, i opened the bathroom door to ask for help and shout "tapos na ko!", the light in the kitchen was turned off..
"brownout siguro (duh! i have electricity inside the CR), di ko narinig"
double duh!

baliw eh noh? i think i'm over positive na.. wahahaha! :P

*dami pa yang kabaliwan ko, nalimutan ko lng.. dagdagan ko nlng pag naalala ko..

I'm SICK

i'll be appearing in gma7 this time.. i was interviewed this morning by dra. beltran of kapwa ko mahal ko.. it will air on saturday morning, 6am at gma7.. so early noh? good thing we really need to be awake by that time on saturday coz we'll be selling hEAR shirts at the salesian past pupils' homecoming at dbti on saturday.. then i'll wake up ysiad coz she'll be recording it.. hehe. special mention! :P

CI vs. ABI

from www.pubmed.gov:

Neurofibromatosis type 2 (NF2) causes bilateral hearing loss due to tumour growth in the cerebellopontine angle. We report the results of promontory testing and transtympanic electrocochleography on subjects with deafness due to NF2 referred for an auditory brainstem implant. All 19 ears tested revealed loss of cochlear microphonics. Nine ears (mainly without previous treatment) revealed auditory perception during promontory stimulation, indicating cochlear deafness. One of these subjects has been successfully provided with a cochlear implant. The other 10 ears (mainly after previous surgery) revealed negative promontory stimulation, indicating additional retrocochlear deafness. These findings indicate that neurofibromas initially cause a cochlear deafness, so that a cochlear implant can be used if the auditory nerve can be preserved. This option has to be considered in rehabilitating patients with bilateral tumours due to NF2.

btw, i'll be the first filipino nf2 patient to have a cochlear implant kasi normally, it's ABI.. :)

You're so kind.. Thank you!

i love checking my statcounter ever since.. i normally get 5 - 10 visitors a day though.. i enjoy the keywoard analysis alot coz a lot of weird keywords are being searched.. haha! i wonder sometimes why those search engines directs them to me..