Patti's 2 Year Mark It Will Resolve Itself!

[Guest guest]

Hi Everyone!

I rarely type about my surgical experience since I don't want to scare

anyone. Being that it's my 2 year mark this week, I decided to type about my

experience. I'd like to caution you all that this might scare some of you so

read at your own risk! Most of you go into surgery and sail through recovery

with no troubles at all and believe me I am happy to read those experiences.

I didn't have that kind of experience, though, for either my surgery or

recovery. I'm about to share how it went for me. It does have a happy

ending! 8-)

I was supposed to have been operated on on 11/18/02; but my surgery was

cancelled after I waited all day (6:30 am - 6:00pm) in the holding room due to

overbooked ORs and a full recovery room. I came within 20 minutes 3 times that

day of going into the OR only to be postponed, by an emergency, and was sent

home at 6 pm that night without so much as a cracker crumb or a drink 25 hours

after my last meal. I was relieved to finally just go home since I had met

my anesthesiogist and she didn't like my airway at all and didn't like the

fact that I was deaf. I got a kick out of reading my older sister's lips

telling her off: " Her deafness is why we are here in the first place! " Being a

Goldenhar Syndrome baby, my facial features are not symetrical which is a

nightmare to any anesthesioligst and Respiratory Therapist as my Respiratory

Therapist sister told me since my airway is tiny.

My surgery date was reset for one week later, on 11/25/02 and what a day

that was! I was sooo nervous about going back! I almost gave up on the whole

thing just thinking about the awful anesthesiologist. I emailed my ENT

several times during the week and he was very reassuring that he had every

confidence I could successfully be tubed and that he or his Resident would be

there

watching and I was going to be the first elective taken that day. I was

immediately taken when I walked in the short procedure unit. They were

waiting

for me and I was happy to meet a new anesthesiologist who I swear was scripted,

by my ENT, on what to say to me because he said all the right things and he

was very enthusiastic! I really felt sorry for him! I did!! We struck up a

deal on how I would know to take 2 breaths once it was time to take the tube

out of my throat. The hospital has a 2 breath rule and does not bend them

even for deaf patients. I begged him not to wake me up as the previous

anesthesiologist insisted on doing. The deal was when I felt my shoulder

shaking, I

would take 2 quick breaths and he would pull the tube right out. That was

settled and they whisked me into the OR by 7:30 am, the last time I noticed on

the

clock before the mask went over my face was 7:50 am. Next thing I know, I

am being shaken but don't know why so I ignored it. I then was shaken harder

and I remember opening my eyes to see a little green man standing right in

front of my eyes (yep, that's how I saw it...little green man!) He was

shrugging his shoulders up and down like 'Where's your part in our deal? " I

remembered then to take 2 quick breaths and during the second breath I felt the

tube

being taken out and I went back to sleep until I woke up in the Recovery Room.

Oh what a day! What a time! I knew right away this was not going to be a

fun recovery! I was sick as a dog from the anesthesia and my balance had

gone out the window. My two sisters, who were with me that day, were allowed

into the Recovery Room about 11:30 am and they were still talking about

discharging me that day; but my sisters took one look at me and them and said,

" How

can we take this home? " I was green as anything and very sick anytime I

moved a whee little bit. I ended up staying 2 nights and 3 whole days in the

hospital. That's how long it took to get some control of my stomach so I

could

make the 45 minute ride home.

I arrived home the night before Thanksgiving, helped from the car to the

couch by several of my siblings. I don't know what I would have done

without my siblings and in-laws! They rallied around my dad and me during this

time and really helped us out. They took turns coming over and making our meals

and helping me with my first week and a half of getting a shower and putting

ointment on my head and incision, and ear since we found out I was allergic

to the spray adhesive that was used on me during the surgery. My ear was 10

times fatter than my other ear and I had hives wherever they spray landed. I

also had a dry cottony throat so mashed potatoes, soup, applesauce and Italian

water ices were my favorite things to eat the first week. I was allowed to

take my meals on the couch the first two days; but then my siblings banded

together and set little goals for me to accomplish each day to get me up and

moving and working on walking so I had to start walking from the couch to the

kitchen and when I had to go to the bathroom I was not allowed to go right back

to

the couch without making a full circle of the downstairs. I could not have

gone through this without their support! As much as I hated those daily

goals, I needed them to get me moving. During this time, my ENT was not

worried

about my imbalance. He said it would resolve itself in time.

It's funny because before my surgery, all I was looking forward to was a

few days control of the tv remote control!!! I never did get control of it as

my Dad was laid up, at the same time, after falling and fracturing his hip,

pelvis and elbow 10 days before my original surgery. I was busy meeting my

daily goals between my 3 naps and bedtime anyway. It took me 12 weeks to

stop

bouncing off of everything in sight. I had to think about the very act of

standing and walking when I tried to get somewhere. It was an exhausting

time and I took my own advice of " pace yourself " seriously. I took naps when I

needed them and during those first 12 weeks, 3 naps were usually needed plus I

still slep through the night!

I was sooo nervous about my hook up day! I thought the implant motto was

high hopes and no expectations so I took that seriously and really didn't go

to hook up expecting anything. I was sure I would not even hear the beeps.

I was still very off balanced that day and couldn't walk very fast then but

my youngest sister managed to pull me across 6 lanes of traffic to my hook up

appointment. She sure had her hands full that morning, in the waiting room

with me! I was really convinced that I was not going to hear a thing. It

did not help my nerves that we had to wait 20 minutes longer than my

appointment time due to my audie having trouble getting the computer to connect

with

Cochlear. Finally, we were called back and my audie put my processor (I

started with the BWP) on my head for the first time and then told me I would

hear

some beeps. Oh my gosh, I nearly flew out of my chair on the very first one!

It was loud and clear! My sister was laughing and crying at the same time.

I was sooo happy to hear those mapping beeps! It had been sooo long

since I had heard a beep. When he finally turned on the processor I was not

looking at him and I heard a 4 syllable phrase. I turned to him and said,

" Did you just say 'Can you hear me? " He had! It was not clear as day but I

had

understood! I knew this was workable! I was soo happy! I understood 2

other phrases that day without looking at the person and it was just like that,

not clear but yet somehow I figured it out. Environmental sounds were clear

and I was so happy to hear them again and and discover knew ones! I was

shocked that paper makes noise! I was amazed with all the sounds I was hearing

that first day! I had 2 week apointments after that for a month and things

improved, for me, hearing wise. At the end of January 2003, I got my 3G and

it

was wonderful. The 3G put sounds in much better perspective than the BWP.

At this time I still didn't have speech discrimination. I didn't start

getting that until the third month after my hook up when I made an observation,

to

my audie, that I couldn't stand my youngest sister's voice; which was high

pitched. He then made me an ACE 900 map with the edges of the highs and lows

rounded off and her voice was the easiest for me to understand from another room

and that's when speech discrimination started kicking in for me. For the

first time, at the age of 40, I responded to my name being called just a few

feet away from me. Each mapping after that I take in 3 or 4 observations about

my programs and my audie tweaks my processor according to my observations and

it keeps getting better.

In February of 2003 when my balance still had not resolved itself and I

was still bouncing off of things, I begged my ENT for exercises to do at home to

help retrain my eyes, ears and brain to work together on my balance. I ddi

them for 14 months starting out 3 times a day then went down to twice a day.

And they helped me a lot, especially in the beginning. Today, I feel pretty

darn good. I still sway when I walk; but I no longer bounce off of

everything in sight. I have become an expert two stepper for the times that I

do

get off balance. I am sooo very grateful for what my CI has given me in just

22 months of being hooked up! I am in awe with all the sounds around me!

Happy Thanksgiving, Everyone!

[Guest guest]

Hi Patti,

I believe that ci story should be on the site, It was not only realistic

from your point of view, but also well written. Larry

[Guest guest]

Hi Patti,

I think this ci story should be on the site. Not only was it different, but

it was also well written! Good listening. Larry

[Guest guest]

Hi Larry!

Wow, what a nice surprise to see your post in today's Digest

regarding my post on my 2 year mark. Thank you so much for your

kind words! I am glad you liked my story. Thankfully, the majority

of CI Candidates don't have the surgical and recuperation experience

that I went through.

Thanks again for taking the time to tell me how much you liked it

because I really was hesitant about posting it at all. But, I am

glad I did because it is my experience and I have been wanting to

share how it went for me.

Patti

Surgery Day 11/25/02 (What A Day!)

Hook Up Day BWP 1/2/03 (A Happy Day!)

3G 1/31/03 (An Even Happier Day!)