Introduction

[Guest guest]

Hi

Sorry to hear about your pain. My husband tried pain management and it didn't work.

I don't know what state you live in but I would go to Social Services and get health insurance so that your medical would be paid. Also apply for social security because that can take years. My husband has been suffering for 5 years now.

Ingrid

My name is , I am new to your group. I have had 2 back surgeries, neither have helped. I am in pain all the time; from my lower back to my feet on both sides. The doctors can't seem to help and I'm not having any more surgeries. I can hardly walk anymore. I am in pain management so I can go to work and support my family. I would appreciate any links or advice any of you may have.Thanks in advance!

Start your day with - make it your home page

[Guest guest]

Hi Debbie,

I was implanted with the Freedom (second/bilateral) implant about a month

after you, and am having trouble hearing on the phone too. Part of the

problem is that the voice is soft than the environmental sounds loud. In

time the environmental sounds will soften and the voice will be easier to

comprehend and we both will be better able to understand on the phone. Do

you use the telecoil when on the phone?

[Guest guest]

Ingrid,

I am still working so I'm covered by health insurance through my job. I can't quit right now even though sometimes I can hardly walk. I am in Southeast Kansas, and have spoken with social security. They don't seem to understand that I have a wife and 2 small children. I have to work to support them.

Ingrid McNeely <bluehelpone@...> wrote:

Hi

Sorry to hear about your pain. My husband tried pain management and it didn't work.

I don't know what state you live in but I would go to Social Services and get health insurance so that your medical would be paid. Also apply for social security because that can take years. My husband has been suffering for 5 years now.

Ingrid

My name is , I am new to your group. I have had 2 back surgeries, neither have helped. I am in pain all the time; from my lower back to my feet on both sides. The doctors can't seem to help and I'm not having any more surgeries. I can hardly walk anymore. I am in pain management so I can go to work and support my family. I would appreciate any links or advice any of you may have.Thanks in advance!

Start your day with - make it your home page __________________________________________________

[Guest guest]

-Hi welcome to the group. What kind of surgeries did you have??

And what does your dr say is causing the pain now? Sharon Group Owner

-- In neck pain , " original_bad_apple "

<original_bad_apple@y...> wrote:

> My name is , I am new to your group. I have had 2 back

> surgeries, neither have helped. I am in pain all the time; from my

> lower back to my feet on both sides. The doctors can't seem to help

> and I'm not having any more surgeries. I can hardly walk anymore. I

> am in pain management so I can go to work and support my family. I

> would appreciate any links or advice any of you may have.

> Thanks in advance!

>

[Guest guest]

joycelyn,

My son is also 5, he was diagnosed almost exactly the same way. He was

diagnosed November '04, after an infection that started in July '04 and had

C'toma surgery January '05. It is so scary in the beginning. This totally

consumes your thoughts and your life for a while. Our ENT said it was

congenital, the surgeon first said he thought it was acquired, then changed

his mind. Anyway, my son lost the incus and the malleus, he still has the

stapes, but it is badly eroded. He had his first surgery in January removing

the Ctoma. He had a second look surgery in october, the c'toma had returned

and the surgeon did a canal wall down. Things have been pretty good since

then. You will be amazed at how quickly kids bounce back.

Ethan, my son, was up and around about 3 hours after his first surgery. Up

and down the hallways in the hospital. It was hard to keep him settled down.

Bring loose clothing to dress him in for the ride home, probably a button

up shirt, he may not want you to pull anything over his ear for a few days.

The doc should give you pain medication, use it. I'm sure the doc will give

you after care instructions according to what he does during surgery. Ethan

was out of school about 7 days, mostly for my comfort. He was ready to go

back to school in about 4 days, but it freaked me out, so I kept him out a

week. It will all come out OK, I know you have to worry, it's impossible

not to. It is hard to see your little guy going thru all this. You will see

that the stronger and more prepared you are, the easier it will be for

Miles. Hang in there.

Barbara

>From: Joycelyn Watterson-Woods <JWWoods@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: introduction

>Date: Tue, 27 Dec 2005 21:23:09 -0800

>

>Hello all... I am new to c-toma world but was glad to know you all were out

>there to offer some support and advice (non-medical, of course :-))

>We live in Portland Oregon, USA. This gets long, but I am trying to put a

>whole picture together for everyone.

>My son, Miles, who is 5 1/2, was diagnosed in November with a congenital

>c-toma. We met with the surgeon for the second time today and my head is

>spinning a bit will all of the information we were presented with.

>We originally started looking into his ears at his 5 year old appointment

>in

>early august. Our ped thought something looked amiss with his right ear.

>He had never had an ear infection, nor any major cold but we tried a course

>of antibiotics to see if that would clear things up. Everything stayed

>looking the same. We tried a second course of stronger antibiotics and

>when

>things stayed the same we met with an ENT that our ped recommended. We did

>a

>hearing test at that appointment and found that something was definately

>amiss as his hearing in his right ear was quite off. (I found out today

>that he can hear at 10 decibles for his left ear but not until 40 decibles

>for his right ear). His eardrum didn't measure a movement on the " picture "

>that they take of ear movement. (I am sorry, I don't know the technical

>names of most of these things yet)

> the doctor said there probably was fluid, there was a tiny percentage of

>a

>chance that there would be something other than fluid, especially in a

>child

>who has never had an ear infection or discharge from the ears) and that

>since antiobiotics hadn't changed a thing and we were not sure how long

>this

>had been going on we should probably put tubes in his right ear. I KNOW

>that tubes are a routine surgery, lots of kids get them, doctors do them

>all

>the time, but not to my child so I was a little scared, a little freaked

>out

>but mainly trying to be strong for Miles. The doc came in and announced

>that they had made the eardrum cut, no fluid, he had looked around a

>little,

>saw a mass and come out to talk to us. He wanted Miles to go to a CT scan

>and then we would decide what to do.

>We were SHAKEN and FREAKED OUT but had the CT scan and got an appointment

>the next week with a surgeon who was a specialist named howard kim. We met

>with him, talked a lot about surgery, talked about how Miles hearing was

>affected now, how it would be affected with a surgery, talked about what a

>c-toma was, what it was not, how congenital c-toma is rare, that aquired

>c-toma was not rare at all ect. . lots of talking.

>Today we met again, looked through the CT scans together where he showed us

>the involvement of the c-toma. He thinks it looks as if most of the face

>nerve is enclosed in bone so this is great news. he is aftrad that the

>stapes and bottom of the incus are eroded away and is talking two

>surgeries,

>possibly three at this point. he thought the c-toma was pretty good sized

>but I forgot to ask him what to compare the size to.

>We are scheduled for our son to have surgery on the 12th of January. ANY

>suggestions, any way to make him more comfortable after surgery, any ideas

>for after care would be GREATLY appreicated.

>Thanks,

>Joycelyn and Miles (and the rest of our family.

[Guest guest]

It's been 26 years since my CWD so some of the things

you talk about I don't remember, however, somethings I

do remember. Pain seems to vary from person to

person. What I remember in the healing process is low

grade dull type of pain. This was taken care of with

over the counter pain relief. Keep in mind that there

will be nerve endings waking up from the surgery,

these are what I called shooting pains. Alot of stuff

has been taken out of the middle ear and or disrupted,

there is going to be sensations happening that he may

not understand. 26 years after my CWD I still get

those sensations. Just be supportive. You'll likely

get some drainage, if it's clear or have a bloody look

to it then that's apart of the healing process. If

it's green/yellowish in color then call the Doc.

Lastly, dont rush the reconstuction let things heal

completely. I had mine 3 years after my CWD, back

then they waited sometime to do recontructions to

allow total healing and to see if the c-toma comes

back or not. Not likely with the CWD but still

possible.....

tom hansen

--- Joycelyn Watterson-Woods <JWWoods@...>

wrote:

> Hello all... I am new to c-toma world but was glad

> to know you all were out

> there to offer some support and advice (non-medical,

> of course :-))

> We live in Portland Oregon, USA. This gets long,

> but I am trying to put a

> whole picture together for everyone.

> My son, Miles, who is 5 1/2, was diagnosed in

> November with a congenital

> c-toma. We met with the surgeon for the second time

> today and my head is

> spinning a bit will all of the information we were

> presented with.

> We originally started looking into his ears at his 5

> year old appointment in

> early august. Our ped thought something looked

> amiss with his right ear.

> He had never had an ear infection, nor any major

> cold but we tried a course

> of antibiotics to see if that would clear things up.

> Everything stayed

> looking the same. We tried a second course of

> stronger antibiotics and when

> things stayed the same we met with an ENT that our

> ped recommended. We did a

> hearing test at that appointment and found that

> something was definately

> amiss as his hearing in his right ear was quite off.

> (I found out today

> that he can hear at 10 decibles for his left ear but

> not until 40 decibles

> for his right ear). His eardrum didn't measure a

> movement on the " picture "

> that they take of ear movement. (I am sorry, I

> don't know the technical

> names of most of these things yet)

> the doctor said there probably was fluid, there was

> a tiny percentage of a

> chance that there would be something other than

> fluid, especially in a child

> who has never had an ear infection or discharge from

> the ears) and that

> since antiobiotics hadn't changed a thing and we

> were not sure how long this

> had been going on we should probably put tubes in

> his right ear. I KNOW

> that tubes are a routine surgery, lots of kids get

> them, doctors do them all

> the time, but not to my child so I was a little

> scared, a little freaked out

> but mainly trying to be strong for Miles. The doc

> came in and announced

> that they had made the eardrum cut, no fluid, he had

> looked around a little,

> saw a mass and come out to talk to us. He wanted

> Miles to go to a CT scan

> and then we would decide what to do.

> We were SHAKEN and FREAKED OUT but had the CT scan

> and got an appointment

> the next week with a surgeon who was a specialist

> named howard kim. We met

> with him, talked a lot about surgery, talked about

> how Miles hearing was

> affected now, how it would be affected with a

> surgery, talked about what a

> c-toma was, what it was not, how congenital c-toma

> is rare, that aquired

> c-toma was not rare at all ect. . lots of talking.

> Today we met again, looked through the CT scans

> together where he showed us

> the involvement of the c-toma. He thinks it looks

> as if most of the face

> nerve is enclosed in bone so this is great news. he

> is aftrad that the

> stapes and bottom of the incus are eroded away and

> is talking two surgeries,

> possibly three at this point. he thought the c-toma

> was pretty good sized

> but I forgot to ask him what to compare the size to.

> We are scheduled for our son to have surgery on the

> 12th of January. ANY

> suggestions, any way to make him more comfortable

> after surgery, any ideas

> for after care would be GREATLY appreicated.

> Thanks,

> Joycelyn and Miles (and the rest of our family.

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Our daughter started having surgery at about 5yrs on one of her ears. C-toma was successfully removed using the combined approach in the 1st operation and has not reoccured. Since, she has been back for reconstruction and attempt to fit a ear drum giving in total 4 opeartions in 2 years the last being 2 weeks ago. Post op she has never had pain or even needed to take pain medication following surgery. She did ask this time if ''When I wake up will everyone be walking on their heads again?" Only post-surgery problems we find are she is dizzy and vomits for a few hours the anesthetist says this is very difficult to overcome with children and ear surgery. She also seems to have higher sensitivity to 'motion sickness' which last a few weeks after the operation. This time she had Op on 23rd Dec, out 24th Dec and had aperfectly normal Xmas day so expect him to bounce back quickly! Good luck Jo Joycelyn Watterson-Woods <JWWoods@...> wrote: Hello all... I am new to c-toma world but was glad to know you all were out there to offer some support and advice (non-medical, of course :-)) We live in Portland Oregon, USA. This gets long, but I am trying to put a whole picture together for everyone. My son, Miles, who is 5 1/2, was diagnosed in November with a congenital c-toma. We met with the surgeon for the second time today and my head is spinning a bit will all of the information we were presented with. We originally started looking into his ears

at his 5 year old appointment in early august. Our ped thought something looked amiss with his right ear. He had never had an ear infection, nor any major cold but we tried a course of antibiotics to see if that would clear things up. Everything stayed looking the same. We tried a second course of stronger antibiotics and when things stayed the same we met with an ENT that our ped recommended. We did a hearing test at that appointment and found that something was definately amiss as his hearing in his right ear was quite off. (I found out today that he can hear at 10 decibles for his left ear but not until 40 decibles for his right ear). His eardrum didn't measure a movement on the "picture" that they take of ear movement. (I am sorry, I don't know the technical names of most of these things yet) the doctor said there probably was fluid, there was a tiny percentage of a chance that there would be something other than

fluid, especially in a child who has never had an ear infection or discharge from the ears) and that since antiobiotics hadn't changed a thing and we were not sure how long this had been going on we should probably put tubes in his right ear. I KNOW that tubes are a routine surgery, lots of kids get them, doctors do them all the time, but not to my child so I was a little scared, a little freaked out but mainly trying to be strong for Miles. The doc came in and announced that they had made the eardrum cut, no fluid, he had looked around a little, saw a mass and come out to talk to us. He wanted Miles to go to a CT scan and then we would decide what to do. We were SHAKEN and FREAKED OUT but had the CT scan and got an appointment the next week with a surgeon who was a specialist named howard kim. We met with him, talked a lot about surgery, talked about how Miles hearing was affected now, how it would be affected with a surgery, talked

about what a c-toma was, what it was not, how congenital c-toma is rare, that aquired c-toma was not rare at all ect. . lots of talking. Today we met again, looked through the CT scans together where he showed us the involvement of the c-toma. He thinks it looks as if most of the face nerve is enclosed in bone so this is great news. he is aftrad that the stapes and bottom of the incus are eroded away and is talking two surgeries, possibly three at this point. he thought the c-toma was pretty good sized but I forgot to ask him what to compare the size to. We are scheduled for our son to have surgery on the 12th of January. ANY suggestions, any way to make him more comfortable after surgery, any ideas for after care would be GREATLY appreicated. Thanks, Joycelyn and Miles (and the rest of our family.

To help you stay safe and secure online, we've developed the all new Security Centre.

[Guest guest]

hi Janet,

My Sharon and I will be praying for your speedy recovery after your

surgery of February 1st. ttyl Larry

Introduction

> Hello, all! I've been lurking for a couple of weeks, and now that my

> implant

> surgery date has been set for February 1st, thought it was time to

> introduce

> myself, and to express my appreciation to all those who have been posting

> and

> of such help to me.

>

> I'm 9th generation Deaf, and also adopted 2 Deaf children. I was very

> much

> against cochlear implants until just recently, when I saw that the MAP

> community and parents were realizing that the CI advantages and benefits

> needed to be

> balanced with the social and language needs of deaf children. Having

> grown up

> in the late '50s and early '60s where the " controversy " was " sign at the

> risk

> of never developing speech " , or " use binaural hearing aids at the risk of

> losing it all " , and " heaven forbid any parent allowing their child to be

> contaminated by Deaf Culture, " this was a very important issue for me. I'm

> happy to

> see that this sort of cycling mindset is going into an ebb stage.

>

> I was identified as deaf (severe to profound loss) when 2 1/2 years of

> age,

> went to several deaf education programs for a short time, but by

> kindergarten,

> was attending regular education program with speech services only. I was

> trained " aurally " by my hearing mother, who utilized strategies from

> several

> different programs, including the HEAR Foundation and the

> Clinic. I

> graduated with high academic achievement from a small coastal high school

> in

> Oregon, but was instantly stymied when I entered a large university (BYU)

> in 1975

> with no interpreters or services of any kind. I also found that my social

> group WAS with the Deaf Community, and after five years of struggling on

> my own,

> finally graduated with a B.S. in Communicative Disorders. I went on to get

> my

> Deaf Education certification and later a M.S. and have worked in several

> administrative jobs in the postgraduate, nonprofit community based

> programs,

> vocational rehabilitation, and now back in the education field as a school

> administrator.

>

> Through the years, I functioned quite well utilizing my hearing aids,

> speech

> reading, and closure skills, until a dose of erthromycin in 1986 dropped

> my

> hearing threshold 30 decibels. After that, I was not able to enjoy music

> any

> more, and oral communication was much more difficult. It has steadily

> dropped

> until it is virtually total at this time. This means I am completely

> unable to

> use any aural skills, which are vital to communicating with my mother (now

> age

> 80). The major reasoning for implant now is so that the quality of the

> time we

> have left (and may it be many many more years!) will be positive with less

> of

> the frustration from not being able to communicate.

>

> So, there you have it. Please be thinking positive thoughts and prayers

> for

> me on February 1st! And, wish me luck in the final decision as to what

> make of

> implant to choose by Monday!

>

> Janet Johanson

>

>

>

[Guest guest]

Janet,

What an impressive introduction!! Reading your story brought a smile

to my face because in spite of the many challenges you faced as a child with

severe-profound hearing loss/deafness, you continued to persevere. <smile>

Just curious...Do you communicate with your deaf sons using ASL, total

communication or oral only? They are lucky to have such a wonderful role

model!

February 1st is just around the corner. Good luck! Here's wishing you all

the best for surgery, recovery and activation!! <smile>

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

Janet,

Welcome! Your background is similar to mine. I have a deaf sister, my

husband is deaf, and like you...I had been opposed to cochlear

implants until I hit rock bottom and could no longer hear with a

hearing aid.

Best wishes to you!!!

Where are you from?

Freedom 9/21/05 HOOKED!!

>

> Hello, all! I've been lurking for a couple of weeks, and now that

my implant

> surgery date has been set for February 1st, thought it was time to

introduce

> myself, and to express my appreciation to all those who have been

posting and

> of such help to me.

>

> I'm 9th generation Deaf, and also adopted 2 Deaf children. I was

very much

> against cochlear implants until just recently, when I saw that the MAP

> community and parents were realizing that the CI advantages and

benefits needed to be

> balanced with the social and language needs of deaf children.

Having grown up

> in the late '50s and early '60s where the " controversy " was " sign at

the risk

> of never developing speech " , or " use binaural hearing aids at the

risk of

> losing it all " , and " heaven forbid any parent allowing their child

to be

> contaminated by Deaf Culture, " this was a very important issue for

me. I'm happy to

> see that this sort of cycling mindset is going into an ebb stage.

>

> I was identified as deaf (severe to profound loss) when 2 1/2 years

of age,

> went to several deaf education programs for a short time, but by

kindergarten,

> was attending regular education program with speech services only. I

was

> trained " aurally " by my hearing mother, who utilized strategies from

several

> different programs, including the HEAR Foundation and the

Clinic. I

> graduated with high academic achievement from a small coastal high

school in

> Oregon, but was instantly stymied when I entered a large university

(BYU) in 1975

> with no interpreters or services of any kind. I also found that my

social

> group WAS with the Deaf Community, and after five years of

struggling on my own,

> finally graduated with a B.S. in Communicative Disorders. I went on

to get my

> Deaf Education certification and later a M.S. and have worked in

several

> administrative jobs in the postgraduate, nonprofit community based

programs,

> vocational rehabilitation, and now back in the education field as a

school

> administrator.

>

> Through the years, I functioned quite well utilizing my hearing

aids, speech

> reading, and closure skills, until a dose of erthromycin in 1986

dropped my

> hearing threshold 30 decibels. After that, I was not able to enjoy

music any

> more, and oral communication was much more difficult. It has

steadily dropped

> until it is virtually total at this time. This means I am completely

unable to

> use any aural skills, which are vital to communicating with my

mother (now age

> 80). The major reasoning for implant now is so that the quality of

the time we

> have left (and may it be many many more years!) will be positive

with less of

> the frustration from not being able to communicate.

>

> So, there you have it. Please be thinking positive thoughts and

prayers for

> me on February 1st! And, wish me luck in the final decision as to

what make of

> implant to choose by Monday!

>

> Janet Johanson

>

>

>

[Guest guest]

Thank you for you rpersonal response, ! I'm in Oregon, how about you?

And how did you decide which make of CI to have implanted?

Thank you again.. Janet

Re: Introduction

Janet,

Welcome! Your background is similar to mine. I have a deaf sister, my

husband is deaf, and like you...I had been opposed to cochlear

implants until I hit rock bottom and could no longer hear with a

hearing aid.

Best wishes to you!!!

Where are you from?

Freedom 9/21/05 HOOKED!!

>

> Hello, all! I've been lurking for a couple of weeks, and now that

my implant

> surgery date has been set for February 1st, thought it was time to

introduce

> myself, and to express my appreciation to all those who have been

posting and

> of such help to me.

>

> I'm 9th generation Deaf, and also adopted 2 Deaf children. I was

very much

> against cochlear implants until just recently, when I saw that the MAP

> community and parents were realizing that the CI advantages and

benefits needed to be

> balanced with the social and language needs of deaf children.

Having grown up

> in the late '50s and early '60s where the " controversy " was " sign at

the risk

> of never developing speech " , or " use binaural hearing aids at the

risk of

> losing it all " , and " heaven forbid any parent allowing their child

to be

> contaminated by Deaf Culture, " this was a very important issue for

me. I'm happy to

> see that this sort of cycling mindset is going into an ebb stage.

>

> I was identified as deaf (severe to profound loss) when 2 1/2 years

of age,

> went to several deaf education programs for a short time, but by

kindergarten,

> was attending regular education program with speech services only. I

was

> trained " aurally " by my hearing mother, who utilized strategies from

several

> different programs, including the HEAR Foundation and the

Clinic. I

> graduated with high academic achievement from a small coastal high

school in

> Oregon, but was instantly stymied when I entered a large university

(BYU) in 1975

> with no interpreters or services of any kind. I also found that my

social

> group WAS with the Deaf Community, and after five years of

struggling on my own,

> finally graduated with a B.S. in Communicative Disorders. I went on

to get my

> Deaf Education certification and later a M.S. and have worked in

several

> administrative jobs in the postgraduate, nonprofit community based

programs,

> vocational rehabilitation, and now back in the education field as a

school

> administrator.

>

> Through the years, I functioned quite well utilizing my hearing

aids, speech

> reading, and closure skills, until a dose of erthromycin in 1986

dropped my

> hearing threshold 30 decibels. After that, I was not able to enjoy

music any

> more, and oral communication was much more difficult. It has

steadily dropped

> until it is virtually total at this time. This means I am completely

unable to

> use any aural skills, which are vital to communicating with my

mother (now age

> 80). The major reasoning for implant now is so that the quality of

the time we

> have left (and may it be many many more years!) will be positive

with less of

> the frustration from not being able to communicate.

>

> So, there you have it. Please be thinking positive thoughts and

prayers for

> me on February 1st! And, wish me luck in the final decision as to

what make of

> implant to choose by Monday!

>

> Janet Johanson

>

>

>

[Guest guest]

Sure is great experiencing the freedom and independence of using the phone

again isn't it. I was deaf and then implanted pre-rely so I really found

new freedom. Thank for sharing!

Ruth Fox

18 years of wonderful sound from my Nucleus Implant

_____

From: [mailto: ] On Behalf Of

cybbie2

Sent: Sunday, January 08, 2006 2:06 AM

Subject: Introduction

Hi, this is my first post although I'm guilty of lurking.

I had a CI implant about 2 years and this board was helpful when I was

researching the subject. I'm very happy with my results. I'm using the

phone again and got to toss my TTYs! Since my surgery my sister has

also had an implant. I have many others in my family with severe

hearing losses who are still wearing hearing aids but thinking about

getting a CI.

It takes a while to get here from there but things are still improving

for me even now and I couldn't be happier.

Peace,

www.hearingaidinformer.com

[Guest guest]

Janet,

I'm in Ohio...was implanted at the Cleveland Clinic. I chose the

Freedom because I liked the features...disposable batteries, the

style/look and the fact it was the newest technology available. I went

into my audi's office and played with the models she had just to get a

feel for them. Even trying them on like a pair of glasses.

Freedom 9/21/05 HOOKED!!

> >

> > Hello, all! I've been lurking for a couple of weeks, and now that

> my implant

> > surgery date has been set for February 1st, thought it was time to

> introduce

> > myself, and to express my appreciation to all those who have been

> posting and

> > of such help to me.

> >

> > I'm 9th generation Deaf, and also adopted 2 Deaf children. I was

> very much

> > against cochlear implants until just recently, when I saw that the

MAP

> > community and parents were realizing that the CI advantages and

> benefits needed to be

> > balanced with the social and language needs of deaf children.

> Having grown up

> > in the late '50s and early '60s where the " controversy " was " sign at

> the risk

> > of never developing speech " , or " use binaural hearing aids at the

> risk of

> > losing it all " , and " heaven forbid any parent allowing their child

> to be

> > contaminated by Deaf Culture, " this was a very important issue for

> me. I'm happy to

> > see that this sort of cycling mindset is going into an ebb stage.

> >

> > I was identified as deaf (severe to profound loss) when 2 1/2 years

> of age,

> > went to several deaf education programs for a short time, but by

> kindergarten,

> > was attending regular education program with speech services only. I

> was

> > trained " aurally " by my hearing mother, who utilized strategies from

> several

> > different programs, including the HEAR Foundation and the

> Clinic. I

> > graduated with high academic achievement from a small coastal high

> school in

> > Oregon, but was instantly stymied when I entered a large university

> (BYU) in 1975

> > with no interpreters or services of any kind. I also found that my

> social

> > group WAS with the Deaf Community, and after five years of

> struggling on my own,

> > finally graduated with a B.S. in Communicative Disorders. I went on

> to get my

> > Deaf Education certification and later a M.S. and have worked in

> several

> > administrative jobs in the postgraduate, nonprofit community based

> programs,

> > vocational rehabilitation, and now back in the education field as a

> school

> > administrator.

> >

> > Through the years, I functioned quite well utilizing my hearing

> aids, speech

> > reading, and closure skills, until a dose of erthromycin in 1986

> dropped my

> > hearing threshold 30 decibels. After that, I was not able to enjoy

> music any

> > more, and oral communication was much more difficult. It has

> steadily dropped

> > until it is virtually total at this time. This means I am completely

> unable to

> > use any aural skills, which are vital to communicating with my

> mother (now age

> > 80). The major reasoning for implant now is so that the quality of

> the time we

> > have left (and may it be many many more years!) will be positive

> with less of

> > the frustration from not being able to communicate.

> >

> > So, there you have it. Please be thinking positive thoughts and

> prayers for

> > me on February 1st! And, wish me luck in the final decision as to

> what make of

> > implant to choose by Monday!

> >

> > Janet Johanson

> >

> >

> >

[Guest guest]

Thank you ! I did the same thing!

Janet

Re: Introduction

Janet,

I'm in Ohio...was implanted at the Cleveland Clinic. I chose the

Freedom because I liked the features...disposable batteries, the

style/look and the fact it was the newest technology available. I went

into my audi's office and played with the models she had just to get a

feel for them. Even trying them on like a pair of glasses.

Freedom 9/21/05 HOOKED!!

> >

> > Hello, all! I've been lurking for a couple of weeks, and now that

> my implant

> > surgery date has been set for February 1st, thought it was time to

> introduce

> > myself, and to express my appreciation to all those who have been

> posting and

> > of such help to me.

> >

> > I'm 9th generation Deaf, and also adopted 2 Deaf children. I was

> very much

> > against cochlear implants until just recently, when I saw that the

MAP

> > community and parents were realizing that the CI advantages and

> benefits needed to be

> > balanced with the social and language needs of deaf children.

> Having grown up

> > in the late '50s and early '60s where the " controversy " was " sign at

> the risk

> > of never developing speech " , or " use binaural hearing aids at the

> risk of

> > losing it all " , and " heaven forbid any parent allowing their child

> to be

> > contaminated by Deaf Culture, " this was a very important issue for

> me. I'm happy to

> > see that this sort of cycling mindset is going into an ebb stage.

> >

> > I was identified as deaf (severe to profound loss) when 2 1/2 years

> of age,

> > went to several deaf education programs for a short time, but by

> kindergarten,

> > was attending regular education program with speech services only. I

> was

> > trained " aurally " by my hearing mother, who utilized strategies from

> several

> > different programs, including the HEAR Foundation and the

> Clinic. I

> > graduated with high academic achievement from a small coastal high

> school in

> > Oregon, but was instantly stymied when I entered a large university

> (BYU) in 1975

> > with no interpreters or services of any kind. I also found that my

> social

> > group WAS with the Deaf Community, and after five years of

> struggling on my own,

> > finally graduated with a B.S. in Communicative Disorders. I went on

> to get my

> > Deaf Education certification and later a M.S. and have worked in

> several

> > administrative jobs in the postgraduate, nonprofit community based

> programs,

> > vocational rehabilitation, and now back in the education field as a

> school

> > administrator.

> >

> > Through the years, I functioned quite well utilizing my hearing

> aids, speech

> > reading, and closure skills, until a dose of erthromycin in 1986

> dropped my

> > hearing threshold 30 decibels. After that, I was not able to enjoy

> music any

> > more, and oral communication was much more difficult. It has

> steadily dropped

> > until it is virtually total at this time. This means I am completely

> unable to

> > use any aural skills, which are vital to communicating with my

> mother (now age

> > 80). The major reasoning for implant now is so that the quality of

> the time we

> > have left (and may it be many many more years!) will be positive

> with less of

> > the frustration from not being able to communicate.

> >

> > So, there you have it. Please be thinking positive thoughts and

> prayers for

> > me on February 1st! And, wish me luck in the final decision as to

> what make of

> > implant to choose by Monday!

> >

> > Janet Johanson

> >

> >

> >

[Guest guest]

In a message dated 1/9/2006 6:11:55 P.M. Central Standard Time, theskweez2001@... writes:

Hello from ArizonaMy name is and I am 43 and on Feb 2 I will be having my rightknee replaced and then in about 4-5 months I will have the other onereplaced. I also have had 2 back surgeries, one being a fusion in2001. I live on methadone and various other drugs for pain, bloodpressure, depression and anxiety meds as well as drugs to keep myulcers from bleeding. I am a single mom of an amazing wonderfullyfunny and bright 8 year old girl. I am pretty nervous about thissurgery only because my back is so bad, I know the therapy will betricky but after 30 years in pain with my knees I am looking forwardto a healthier me! What I am hoping to find out is what do I need todo to be ready and prepare myself as well as my home and family to beready? Can someone help and give me some insite? I appreciate anyfeedback and God Bless! in AZ

Hi, I'm in Indiana and had my first replacement on Nov 2 and I guess on Feb 2 we will be going through the same thing. That's when I'm scheduled for my 2nd one. I've also had a back fusion in April. I took the Methadone for my back, but didn't need it for my knee. In fact, I didn't like it for my knee. For my back I just wanted to die, but the knee wasn't near as bad. I'm also on anti depressants and anxiety meds and blood pressure meds, and Ibuprofen for my new knee now. My right knee started bothering me when I was 26. Sounds like we have a lot in common.

[Guest guest]

Absolutly! I felt like I was reading about me! So,

only 3 months and you are ready for your second one

huh? Wow, that is great! How is it walking now? How

is your pain level with your knee? My methadone is

for my back pain also, my knees are not that much

pain. I am about to start imitrex, I believe that is

what he said, for the nerve pain. Do you take

anything with your methadone? Thank you so much for

responding and I cant wait to hear how you are doing.!

--- Critrkrazy@... wrote:

>

> In a message dated 1/9/2006 6:11:55 P.M. Central

> Standard Time,

> theskweez2001@... writes:

>

> Hello from Arizona

> My name is and I am 43 and on Feb 2 I will be

> having my right

> knee replaced and then in about 4-5 months I will

> have the other one

> replaced. I also have had 2 back surgeries, one

> being a fusion in

> 2001. I live on methadone and various other drugs

> for pain, blood

> pressure, depression and anxiety meds as well as

> drugs to keep my

> ulcers from bleeding. I am a single mom of an

> amazing wonderfully

> funny and bright 8 year old girl. I am pretty

> nervous about this

> surgery only because my back is so bad, I know the

> therapy will be

> tricky but after 30 years in pain with my knees I am

> looking forward

> to a healthier me! What I am hoping to find out is

> what do I need to

> do to be ready and prepare myself as well as my home

> and family to be

> ready? Can someone help and give me some insite? I

> appreciate any

> feedback and God Bless!

>

> in AZ

>

>

>

>

> Hi, I'm in Indiana and had my first replacement on

> Nov 2 and I guess on Feb

> 2 we will be going through the same thing. That's

> when I'm scheduled for my

> 2nd one. I've also had a back fusion in April. I

> took the Methadone for my

> back, but didn't need it for my knee. In fact, I

> didn't like it for my knee.

> For my back I just wanted to die, but the knee

> wasn't near as bad. I'm

> also on anti depressants and anxiety meds and blood

> pressure meds, and Ibuprofen

> for my new knee now. My right knee started

> bothering me when I was 26.

> Sounds like we have a lot in common.

>

__________________________________________________

[Guest guest]

In a message dated 1/11/2006 12:09:56 A.M. Central Standard Time, theskweez2001@... writes:

Absolutly! I felt like I was reading about me! So,only 3 months and you are ready for your second onehuh? Wow, that is great! How is it walking now? Howis your pain level with your knee? My methadone isfor my back pain also, my knees are not that muchpain. I am about to start imitrex, I believe that iswhat he said, for the nerve pain. Do you takeanything with your methadone? Thank you so much forresponding and I cant wait to hear how you are doing.!

Hi , I don't have to take the Methadone any more. Actually my knee Dr. told me that Methadone was not something that he prescribed. The back Dr. acted like it was the best thing ever invented, and at the time he was right. The back is way, way, worse than the knee. Mostly I just take Ibuprofen 800 mgs. That takes care of the inflammation. It rained here yesterday and I was really having a lot more pain than usual.

I can't wait to get the second one done. I'd do it tomorrow if there was an opening. I figure as long as the stupid thing is hurting, it might as well be healing. I think I've taken imitrex before, but I can't remember why. It may have been for migraines. I take Neurontin now for the nerve pain. My back and hip sort of feel numb still and my knee for sure does. Numb, but still hurts, weird. It's the skin that is numb. Great talking to you, write back.

[Guest guest]

I was on Neurontin for a few months and I couldnt

stand myself anymore, I became this mean, thoughtless

woman who spoke her mind no matter who it was, I even

told my boss off! It is a wonder that she didnt fire

me! LOL I felt like a stranger in my own body and I

feel much more like the old me. My pain Dr is hoping

the migraine meds will help the nerve pain. How was

it when you came off of the methadone? I am afraid to

see how bad it will be. I am so glad you are on here,

my sister in pain! LOL Keep in touch too!

--- Critrkrazy@... wrote:

>

> In a message dated 1/11/2006 12:09:56 A.M. Central

> Standard Time,

> theskweez2001@... writes:

>

> Absolutly! I felt like I was reading about me! So,

> only 3 months and you are ready for your second one

> huh? Wow, that is great! How is it walking now?

> How

> is your pain level with your knee? My methadone is

> for my back pain also, my knees are not that much

> pain. I am about to start imitrex, I believe that

> is

> what he said, for the nerve pain. Do you take

> anything with your methadone? Thank you so much

> for

> responding and I cant wait to hear how you are

> doing.!

>

>

>

>

>

> Hi , I don't have to take the Methadone any

> more. Actually my knee

> Dr. told me that Methadone was not something that

> he prescribed. The back Dr.

> acted like it was the best thing ever invented, and

> at the time he was

> right. The back is way, way, worse than the knee.

> Mostly I just take Ibuprofen

> 800 mgs. That takes care of the inflammation. It

> rained here yesterday and I

> was really having a lot more pain than usual.

> I can't wait to get the second one done. I'd

> do it tomorrow if there

> was an opening. I figure as long as the stupid

> thing is hurting, it might as

> well be healing. I think I've taken imitrex

> before, but I can't remember why.

> It may have been for migraines. I take Neurontin

> now for the nerve pain.

> My back and hip sort of feel numb still and my knee

> for sure does. Numb, but

> still hurts, weird. It's the skin that is numb.

> Great talking to you,

> write back.

>

__________________________________________________

[Guest guest]

Isn't that what this group is all about?

Finding people who you feel will relate to you and you to them.

The weather has got cooler here (only 79 degrees F now), and the humidity

has dropped (now 78%) so life is a bit easier. Just hope my newly

troublesome joints settle down. My hands are my biggest problem at the

moment.

Anyone else from a semi tropical climate?

Re: Introduction

> I am so glad you are on here,

> my sister in pain! LOL Keep in touch too!

>

>

Send instant messages to your online friends http://au.messenger.

[Guest guest]

In a message dated 1/12/2006 12:30:58 A.M. Central Standard Time, theskweez2001@... writes:

I was on Neurontin for a few months and I couldntstand myself anymore, I became this mean, thoughtlesswoman who spoke her mind no matter who it was, I eventold my boss off! It is a wonder that she didnt fireme! LOL I felt like a stranger in my own body and Ifeel much more like the old me. My pain Dr is hopingthe migraine meds will help the nerve pain. How wasit when you came off of the methadone? I am afraid tosee how bad it will be. I am so glad you are on here,my sister in pain! LOL Keep in touch too!

I wonder if the Neurontin is why I can be such a b**** sometimes, lol. I've been off of the Methadone since probably about July or August. I was on 40 mgs, and I just started cutting it back very slowly and then I could just take it when I knew that I was going to be more active. Now, I don't like it at all, but I don't know what I would have done without it for my back. Weird, but I told my friend about you and she wanted to make sure I didn't have a long lost sister somewhere. Mom says no though. Talk to you later,

[Guest guest]

In a message dated 1/12/2006 6:04:31 P.M. Central Standard Time, theskweez2001@... writes:

Where are you?

Hi, it's . Were you talking to me? For some reason today the stupid AOL wouldn't let me on and then when it did it wouldn't let me read my mail. It's going to storm again tomorrow, and my knees are really hurting. The joint doesn't hurt on the new one, it's just the bone. We went out to eat tonight and I'm stuffed and getting ready to go to bed. Later,

[Guest guest]

Where are you?

--- Margaret <zztinau@...> wrote:

> Isn't that what this group is all about?

>

> Finding people who you feel will relate to you and

> you to them.

>

> The weather has got cooler here (only 79 degrees F

> now), and the humidity

> has dropped (now 78%) so life is a bit easier. Just

> hope my newly

> troublesome joints settle down. My hands are my

> biggest problem at the

> moment.

>

> Anyone else from a semi tropical climate?

>

> Re: Introduction

>

>

> > I am so glad you are on here,

> > my sister in pain! LOL Keep in touch too!

> >

> >

>

> Send instant messages to your online friends

> http://au.messenger.

>

__________________________________________________

[Guest guest]

Hello,

My son is also 5 and all of this sounds so familar. My son was

diagnoised in September with the C-toma, had is first surgery in the

beginning of November. He is doing great, we will not have to see

the surgeon again until spring and he will go through his next

surgery in the summer to have the 2nd look and the reconstruction.

He had to have all 3 bones removed. His hearing is very poor in his

left ear, but so far he has not had any problems in school with this

loss. I was amazed with his recovery. The first 24 hrs were rough

on him, he had his surgery on a Tuesday and wanted to go back to

school on Thursday, but I made him wait until Monday.

We have our fingers crossed that the C-toma is completely gone.

Every once in awhile he will say his ear hurts for a second, not

sure what that is, but it seems to go away. Could be nerves

regenterating.

Good luck to your sons.

Christi

>

> joycelyn,

> My son is also 5, he was diagnosed almost exactly the same way. He

was

> diagnosed November '04, after an infection that started in

July '04 and had

> C'toma surgery January '05. It is so scary in the beginning. This

totally

> consumes your thoughts and your life for a while. Our ENT said it

was

> congenital, the surgeon first said he thought it was acquired,

then changed

> his mind. Anyway, my son lost the incus and the malleus, he still

has the

> stapes, but it is badly eroded. He had his first surgery in

January removing

> the Ctoma. He had a second look surgery in october, the c'toma had

returned

> and the surgeon did a canal wall down. Things have been pretty

good since

> then. You will be amazed at how quickly kids bounce back.

> Ethan, my son, was up and around about 3 hours after his first

surgery. Up

> and down the hallways in the hospital. It was hard to keep him

settled down.

> Bring loose clothing to dress him in for the ride home, probably

a button

> up shirt, he may not want you to pull anything over his ear for a

few days.

> The doc should give you pain medication, use it. I'm sure the doc

will give

> you after care instructions according to what he does during

surgery. Ethan

> was out of school about 7 days, mostly for my comfort. He was

ready to go

> back to school in about 4 days, but it freaked me out, so I kept

him out a

> week. It will all come out OK, I know you have to worry, it's

impossible

> not to. It is hard to see your little guy going thru all this. You

will see

> that the stronger and more prepared you are, the easier it will be

for

> Miles. Hang in there.

> Barbara

>

> >From: Joycelyn Watterson-Woods <JWWoods@g...>

> >Reply-cholesteatoma

> >cholesteatoma

> >Subject: introduction

> >Date: Tue, 27 Dec 2005 21:23:09 -0800

> >

> >Hello all... I am new to c-toma world but was glad to know you

all were out

> >there to offer some support and advice (non-medical, of course :-

))

> >We live in Portland Oregon, USA. This gets long, but I am trying

to put a

> >whole picture together for everyone.

> >My son, Miles, who is 5 1/2, was diagnosed in November with a

congenital

> >c-toma. We met with the surgeon for the second time today and my

head is

> >spinning a bit will all of the information we were presented with.

> >We originally started looking into his ears at his 5 year old

appointment

> >in

> >early august. Our ped thought something looked amiss with his

right ear.

> >He had never had an ear infection, nor any major cold but we

tried a course

> >of antibiotics to see if that would clear things up. Everything

stayed

> >looking the same. We tried a second course of stronger

antibiotics and

> >when

> >things stayed the same we met with an ENT that our ped

recommended. We did

> >a

> >hearing test at that appointment and found that something was

definately

> >amiss as his hearing in his right ear was quite off. (I found

out today

> >that he can hear at 10 decibles for his left ear but not until 40

decibles

> >for his right ear). His eardrum didn't measure a movement on

the " picture "

> >that they take of ear movement. (I am sorry, I don't know the

technical

> >names of most of these things yet)

> > the doctor said there probably was fluid, there was a tiny

percentage of

> >a

> >chance that there would be something other than fluid, especially

in a

> >child

> >who has never had an ear infection or discharge from the ears)

and that

> >since antiobiotics hadn't changed a thing and we were not sure

how long

> >this

> >had been going on we should probably put tubes in his right ear.

I KNOW

> >that tubes are a routine surgery, lots of kids get them, doctors

do them

> >all

> >the time, but not to my child so I was a little scared, a little

freaked

> >out

> >but mainly trying to be strong for Miles. The doc came in and

announced

> >that they had made the eardrum cut, no fluid, he had looked

around a

> >little,

> >saw a mass and come out to talk to us. He wanted Miles to go to

a CT scan

> >and then we would decide what to do.

> >We were SHAKEN and FREAKED OUT but had the CT scan and got an

appointment

> >the next week with a surgeon who was a specialist named howard

kim. We met

> >with him, talked a lot about surgery, talked about how Miles

hearing was

> >affected now, how it would be affected with a surgery, talked

about what a

> >c-toma was, what it was not, how congenital c-toma is rare, that

aquired

> >c-toma was not rare at all ect. . lots of talking.

> >Today we met again, looked through the CT scans together where he

showed us

> >the involvement of the c-toma. He thinks it looks as if most of

the face

> >nerve is enclosed in bone so this is great news. he is aftrad

that the

> >stapes and bottom of the incus are eroded away and is talking two

> >surgeries,

> >possibly three at this point. he thought the c-toma was pretty

good sized

> >but I forgot to ask him what to compare the size to.

> >We are scheduled for our son to have surgery on the 12th of

January. ANY

> >suggestions, any way to make him more comfortable after surgery,

any ideas

> >for after care would be GREATLY appreicated.

> >Thanks,

> >Joycelyn and Miles (and the rest of our family.

>

[Guest guest]

I'm in Brisbane, Queensland, Australia.

Aussie Margaret

Re: Introduction

>>

>>

>> > I am so glad you are on here,

>> > my sister in pain! LOL Keep in touch too!

>> >

>> >

>>

>> Send instant messages to your online friends

>> http://au.messenger.

>>

>

>

> __________________________________________________

>

[Guest guest]

Christi,

What has your doc said about recontruction in a little one? our doc is

talking about doing reconstruction sometime this year, if we can keep the

ctoma from returning. We go back in february to see how things look after a

CWD in November. I have heard it is beneficial to wait until the kids are a

little older to have the reconstruction done. I was wondering if your doc

had said anything about how long the prostetics work in a 5 year old? as of

right now, my son is dealing well with the hearing loss and it doesn't seem

to bother him much. I guess we'll see how things go. I really want him to

hear more clearly, but I don't want to have to go in frequently because the

prostetics have shifted and no longer work.

Barbara

>From: " chagnontwins " <chagnontwins@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: introduction

>Date: Fri, 13 Jan 2006 03:07:52 -0000

>

>Hello,

>

>My son is also 5 and all of this sounds so familar. My son was

>diagnoised in September with the C-toma, had is first surgery in the

>beginning of November. He is doing great, we will not have to see

>the surgeon again until spring and he will go through his next

>surgery in the summer to have the 2nd look and the reconstruction.

>He had to have all 3 bones removed. His hearing is very poor in his

>left ear, but so far he has not had any problems in school with this

>loss. I was amazed with his recovery. The first 24 hrs were rough

>on him, he had his surgery on a Tuesday and wanted to go back to

>school on Thursday, but I made him wait until Monday.

>

>We have our fingers crossed that the C-toma is completely gone.

>Every once in awhile he will say his ear hurts for a second, not

>sure what that is, but it seems to go away. Could be nerves

>regenterating.

>

>Good luck to your sons.

>

>Christi

>

>

>

> >

> > joycelyn,

> > My son is also 5, he was diagnosed almost exactly the same way. He

>was

> > diagnosed November '04, after an infection that started in

>July '04 and had

> > C'toma surgery January '05. It is so scary in the beginning. This

>totally

> > consumes your thoughts and your life for a while. Our ENT said it

>was

> > congenital, the surgeon first said he thought it was acquired,

>then changed

> > his mind. Anyway, my son lost the incus and the malleus, he still

>has the

> > stapes, but it is badly eroded. He had his first surgery in

>January removing

> > the Ctoma. He had a second look surgery in october, the c'toma had

>returned

> > and the surgeon did a canal wall down. Things have been pretty

>good since

> > then. You will be amazed at how quickly kids bounce back.

> > Ethan, my son, was up and around about 3 hours after his first

>surgery. Up

> > and down the hallways in the hospital. It was hard to keep him

>settled down.

> > Bring loose clothing to dress him in for the ride home, probably

>a button

> > up shirt, he may not want you to pull anything over his ear for a

>few days.

> > The doc should give you pain medication, use it. I'm sure the doc

>will give

> > you after care instructions according to what he does during

>surgery. Ethan

> > was out of school about 7 days, mostly for my comfort. He was

>ready to go

> > back to school in about 4 days, but it freaked me out, so I kept

>him out a

> > week. It will all come out OK, I know you have to worry, it's

>impossible

> > not to. It is hard to see your little guy going thru all this. You

>will see

> > that the stronger and more prepared you are, the easier it will be

>for

> > Miles. Hang in there.

> > Barbara

> >

> > >From: Joycelyn Watterson-Woods <JWWoods@g...>

> > >Reply-cholesteatoma

> > >cholesteatoma

> > >Subject: introduction

> > >Date: Tue, 27 Dec 2005 21:23:09 -0800

> > >

> > >Hello all... I am new to c-toma world but was glad to know you

>all were out

> > >there to offer some support and advice (non-medical, of course :-

>))

> > >We live in Portland Oregon, USA. This gets long, but I am trying

>to put a

> > >whole picture together for everyone.

> > >My son, Miles, who is 5 1/2, was diagnosed in November with a

>congenital

> > >c-toma. We met with the surgeon for the second time today and my

>head is

> > >spinning a bit will all of the information we were presented with.

> > >We originally started looking into his ears at his 5 year old

>appointment

> > >in

> > >early august. Our ped thought something looked amiss with his

>right ear.

> > >He had never had an ear infection, nor any major cold but we

>tried a course

> > >of antibiotics to see if that would clear things up. Everything

>stayed

> > >looking the same. We tried a second course of stronger

>antibiotics and

> > >when

> > >things stayed the same we met with an ENT that our ped

>recommended. We did

> > >a

> > >hearing test at that appointment and found that something was

>definately

> > >amiss as his hearing in his right ear was quite off. (I found

>out today

> > >that he can hear at 10 decibles for his left ear but not until 40

>decibles

> > >for his right ear). His eardrum didn't measure a movement on

>the " picture "

> > >that they take of ear movement. (I am sorry, I don't know the

>technical

> > >names of most of these things yet)

> > > the doctor said there probably was fluid, there was a tiny

>percentage of

> > >a

> > >chance that there would be something other than fluid, especially

>in a

> > >child

> > >who has never had an ear infection or discharge from the ears)

>and that

> > >since antiobiotics hadn't changed a thing and we were not sure

>how long

> > >this

> > >had been going on we should probably put tubes in his right ear.

>I KNOW

> > >that tubes are a routine surgery, lots of kids get them, doctors

>do them

> > >all

> > >the time, but not to my child so I was a little scared, a little

>freaked

> > >out

> > >but mainly trying to be strong for Miles. The doc came in and

>announced

> > >that they had made the eardrum cut, no fluid, he had looked

>around a

> > >little,

> > >saw a mass and come out to talk to us. He wanted Miles to go to

>a CT scan

> > >and then we would decide what to do.

> > >We were SHAKEN and FREAKED OUT but had the CT scan and got an

>appointment

> > >the next week with a surgeon who was a specialist named howard

>kim. We met

> > >with him, talked a lot about surgery, talked about how Miles

>hearing was

> > >affected now, how it would be affected with a surgery, talked

>about what a

> > >c-toma was, what it was not, how congenital c-toma is rare, that

>aquired

> > >c-toma was not rare at all ect. . lots of talking.

> > >Today we met again, looked through the CT scans together where he

>showed us

> > >the involvement of the c-toma. He thinks it looks as if most of

>the face

> > >nerve is enclosed in bone so this is great news. he is aftrad

>that the

> > >stapes and bottom of the incus are eroded away and is talking two

> > >surgeries,

> > >possibly three at this point. he thought the c-toma was pretty

>good sized

> > >but I forgot to ask him what to compare the size to.

> > >We are scheduled for our son to have surgery on the 12th of

>January. ANY

> > >suggestions, any way to make him more comfortable after surgery,

>any ideas

> > >for after care would be GREATLY appreicated.

> > >Thanks,

> > >Joycelyn and Miles (and the rest of our family.

> >

>

>

>

>

>