I'm devastated...no CI for

[Guest guest]

I got a call from the audiologist at Greater Baltimore Medical Center. She

indicated that qualifies for a CI based on the fact that he has no hearing

at all in one ear and has severe to profound hearing loss in the other ear.

HOWEVER, because he got an 87 percent on his discrimination testing, he doesn't

qualify. Because he's so smart, he can guess well, so, because he could repeat

most of 20 to 40 words in a perfectly quiet sound booth he does not qualify.

When light noise was added he dropped to 30 db. That doesn't matter I'm told.

The fact that his ability to process information has remained at 4.5 years of

age for ten years now, also doesn't matter. Boy, does audiological testing need

to be updated to reflect the real world. It's already a pet peeve of mine, that

audiologists base their assessment of a person's ability to hear by establishing

an artificial environment where the same words are used year after year after

year after year. Anyone with a brain would be

able to guess what word is being said. How many times do you have to hear a

part of the word ice cream or baseball before you have it memorized. Now, they

did use harder words this time, however, it's still the same drill. Arggh.

Now to start all over with s Hopkins to see if they are less conservative.

And, I was hoping to get this done this summer!

was devastated but then said, " Look at the bright side. Maybe God is

watching over us and making sure this goes right. " I had forgotten that part of

the equation and felt better but I'm still so very frustrated as the longer his

right ear goes without hearing...it has now been almost 16 years...the worse his

prognosis for being able to benefit from a CI in that ear is.

[Guest guest]

,

I'm so sorry - I can't imagine how frustrating this must be for you and your

family.

Please know that we'll be thinking of you and hoping that Hopkins is a bit

more flexible.

Kris

Mom to (7 y.o., Profound/Complete SNL, Left Ear) and Ethan (6 y.o,

hearing)

PS: What part of MD are you in? I went to high school in County,

and my mom still lives in the area.

[Guest guest]

Thanks Kris.

Note: I meant to say in noise, his discrim drops to 30 percent.

County: I used to live in Ellicott City off and on in between military

moves to Europe until I was 11. We used to own the small farm that is now

Bowen's Nursery. I went to elementary school there for 1/2 of first grade, 1/2

of fifth, sixth and seventh. I moved to Carroll County and went to middle

school there and then my parents kept that house and got an apartment in

Baltimore City so I could go to high school there for free. I now live in

Towson.

Well, I'm off to get some shuteye to try to start the Hopkins process tomorrow.

It's just so much further to go for rehab and I'm not crazy about the clinic

atmosphere, the horrific parking, the lousy part of the city it's in and all of

the horrible memories it dredges up of living there for months fighting

atrocious nursing care and hygiene. But, Niparko is world reknowned, and

has a complicated cochlea and medical history including anaphylaxis to all

antibiotics and is allergic to the inactive ingredients in all allergy meds, so

maybe this is best.

Have a good night.

-------------- Original message --------------

> ,

>

>

>

> I'm so sorry - I can't imagine how frustrating this must be for you and your

> family.

>

>

>

> Please know that we'll be thinking of you and hoping that Hopkins is a bit

> more flexible.

>

>

>

> Kris

>

> Mom to (7 y.o., Profound/Complete SNL, Left Ear) and Ethan (6 y.o,

> hearing)

>

>

>

> PS: What part of MD are you in? I went to high school in County,

> and my mom still lives in the area.

>

>

>

>

>

>

[Guest guest]

I am so sorry. Good luck at Hopkins. A friend of mine went

there to get her AN son implanted because he tests to have " nearly

normal " hearing but not much discrimination.

Elaine

[Guest guest]

:

You've been fighting for this ever since I've known you - almost 10

years...can you go to another center?

>

> I got a call from the audiologist at Greater Baltimore Medical

Center. She indicated that qualifies for a CI based on the

fact that he has no hearing at all in one ear and has severe to

profound hearing loss in the other ear. HOWEVER, because he got an

87 percent on his discrimination testing, he doesn't qualify.

Because he's so smart, he can guess well, so, because he could

repeat most of 20 to 40 words in a perfectly quiet sound booth he

does not qualify. When light noise was added he dropped to 30 db.

That doesn't matter I'm told. The fact that his ability to process

information has remained at 4.5 years of age for ten years now, also

doesn't matter. Boy, does audiological testing need to be updated

to reflect the real world. It's already a pet peeve of mine, that

audiologists base their assessment of a person's ability to hear by

establishing an artificial environment where the same words are used

year after year after year after year. Anyone with a brain would be

> able to guess what word is being said. How many times do you

have to hear a part of the word ice cream or baseball before you

have it memorized. Now, they did use harder words this time,

however, it's still the same drill. Arggh.

>

> Now to start all over with s Hopkins to see if they are less

conservative. And, I was hoping to get this done this summer!

>

> was devastated but then said, " Look at the bright side.

Maybe God is watching over us and making sure this goes right. " I

had forgotten that part of the equation and felt better but I'm

still so very frustrated as the longer his right ear goes without

hearing...it has now been almost 16 years...the worse his prognosis

for being able to benefit from a CI in that ear is.

>

>

>

>

[Guest guest]

Oh I am so sorry you have to jump through hoops for this. How disappointing!

But seeing another hospital team may be a good thing. If they are more

supportive, then they are the better choice for 's care.

I hope things go better at Hopkins! And maybe this summer isn't out of the

question just yet.

Best -- Jill

[Guest guest]

Oh - I'm so sorry and *know* how disappointed you are. You know

my same frustration with the same test for Sam - and it was the same

deal as with . It was somewhat louder than normal speech and in a

quiet setting and the sentences were at I think a first or second grade

level so any kid could hear " close the mmmmmm-mmmmm " and figure it was

close the window. I actually schooled Sam that if he has another test

like this, while I wouldn't tell hm to cheat, I did tell him to only

speak back what he absolutely hears since the test is measuring hearing,

not how smart you are...

I've heard wonderful things about Niparko as a surgeon - I'll keep my

fingers crossed for you. You know, LInda, it's just not fair that you

have to continually fight. You really do need a break...

Hugs - and I'm here if you need me...

Barbara

semesky@... wrote:

> I got a call from the audiologist at Greater Baltimore Medical Center. She

indicated that qualifies for a CI based on the fact that he has no hearing

at all in one ear and has severe to profound hearing loss in the other ear.

HOWEVER, because he got an 87 percent on his discrimination testing, he doesn't

qualify. Because he's so smart, he can guess well, so, because he could repeat

most of 20 to 40 words in a perfectly quiet sound booth he does not qualify.

When light noise was added he dropped to 30 db. That doesn't matter I'm told.

The fact that his ability to process information has remained at 4.5 years of

age for ten years now, also doesn't matter. Boy, does audiological testing need

to be updated to reflect the real world. It's already a pet peeve of mine, that

audiologists base their assessment of a person's ability to hear by establishing

an artificial environment where the same words are used year after year after

year after year. Anyone with a brain w!

> ould be

> able to guess what word is being said. How many times do you have to hear a

part of the word ice cream or baseball before you have it memorized. Now, they

did use harder words this time, however, it's still the same drill. Arggh.

>

> Now to start all over with s Hopkins to see if they are less conservative.

And, I was hoping to get this done this summer!

>

> was devastated but then said, " Look at the bright side. Maybe God is

watching over us and making sure this goes right. " I had forgotten that part of

the equation and felt better but I'm still so very frustrated as the longer his

right ear goes without hearing...it has now been almost 16 years...the worse his

prognosis for being able to benefit from a CI in that ear is.

>

>

>

>

[Guest guest]

I feel for you guys. But you are also right, if any medical place is going to

get it right, it would probably be Hopkins! Hope your experience is vastly

improved. My daughter lives in DC, her husb is from land, parents are in

Pasadena and his brother is in Baltimore. So I know how huge the

traffic/parking etc hassles are. If any kid deserves a break it is ! And

if any kids mom deserves a break it is you.

[Guest guest]

<

>

So sorry about the outcome. I don't want to suggest that you have your child

lie, but can you talk to and ask him not to guess? Tell him that if he

can't actually hear the whole word, only say what he does hear maybe? Maybe

there is a bright side. You never know. Maybe you're being led to a better

surgery elsewhere or something.

Rhonda Savage

Mom to Audrey, 9, hearing; and Neal, 6 1/2, CII at 2.9 years

" Hard does not mean impossible. "

[Guest guest]

Just a thought on the spondee words - the words they are using to test his

speech discrimination. They are very easy to guess. There are other less

common spondee words. They date back to the 50's odd things like

footstool... hmm, I cannot think of the rest of them! I have them in my

Audiology book at home.

You might ask for them to use those words when testing - they do have their

standard set of favorites but even my 4 yr old with out her CI on will list

those off for you if you stick her in a sound booth, and she is profound

w/out her CI's on.

If you need more info on the less common spondee/bisyllabic words let me

know and I will get you the list.

I agree that Audiology does not test real life situations. There is a great

research study being done at U Wisconsin in Madison on bilateral CI speech

discrimination in noise. I think the test they use should be given to all

children being reviewed for a CI

It is what sounds like ladies talking at a dinner party you have to pick the

man saying the spondee word out of the ladies voices.. this is real life.

This is what a classroom environment sounds like.

I hope by the time I am an Audiologist there will be some new testing in

place that is more reflective of real life.. not everyone lives in a sound

booth. I hope Hopkins works out for you!

Best,

Angie in KS

Au.D Candidate WSU

mom to Allie 4 yrs, bilateral N24

>

> I feel for you guys. But you are also right, if any medical place is

> going to get it right, it would probably be Hopkins! Hope your experience

> is vastly improved. My daughter lives in DC, her husb is from land,

> parents are in Pasadena and his brother is in Baltimore. So I know how huge

> the traffic/parking etc hassles are. If any kid deserves a break it is

> ! And if any kids mom deserves a break it is you.

>

>

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

>

>

>

>

[Guest guest]

I understand your frustration COMPLETELY, but wow does have great

insight into SOMEONE I tend to forget about when the going gets rough. The

very ONE I need to hand all of this over to. Wow.

Robin

>

> I got a call from the audiologist at Greater Baltimore Medical Center.

> She indicated that qualifies for a CI based on the fact that he has no

> hearing at all in one ear and has severe to profound hearing loss in the

> other ear. HOWEVER, because he got an 87 percent on his discrimination

> testing, he doesn't qualify. Because he's so smart, he can guess well, so,

> because he could repeat most of 20 to 40 words in a perfectly quiet sound

> booth he does not qualify. When light noise was added he dropped to 30 db.

> That doesn't matter I'm told. The fact that his ability to process

> information has remained at 4.5 years of age for ten years now, also

> doesn't matter. Boy, does audiological testing need to be updated to

> reflect the real world. It's already a pet peeve of mine, that audiologists

> base their assessment of a person's ability to hear by establishing an

> artificial environment where the same words are used year after year after

> year after year. Anyone with a brain would be

> able to guess what word is being said. How many times do you have to hear

> a part of the word ice cream or baseball before you have it memorized. Now,

> they did use harder words this time, however, it's still the same drill.

> Arggh.

>

> Now to start all over with s Hopkins to see if they are less

> conservative. And, I was hoping to get this done this summer!

>

> was devastated but then said, " Look at the bright side. Maybe God is

> watching over us and making sure this goes right. " I had forgotten that

> part of the equation and felt better but I'm still so very frustrated as the

> longer his right ear goes without hearing...it has now been almost 16

> years...the worse his prognosis for being able to benefit from a CI in that

> ear is.

>

>

>

>

[Guest guest]

Angie, maybe ped. audiologists could put a disclaimer on audiograms - " these

results obtained in a sound proof booth and are not indicative of the child's

abilities outside a sound proof booth. " My audie, who used to be the school

audie, says kids don't live in the booth and they certainly don't go to school

in the booth. In her reports she always highlighted the testing in noise as

being more indicative of real life situations. She left the in quiet testing on

the audiogram form. The special ed director who didn't understand HL, decided

that he would approve FM's only if they gave the child a 10 dB increase in

hearing over just the hearing aids. So that was always documented prominently,

and always made to happen if it didn't automatically!

Re: I'm devastated...no CI for

>

>Just a thought on the spondee words - the words they are using to test his

>speech discrimination. They are very easy to guess. There are other less

>common spondee words. They date back to the 50's odd things like

>

>footstool... hmm, I cannot think of the rest of them! I have them in my

>Audiology book at home.

>

>You might ask for them to use those words when testing - they do have their

>standard set of favorites but even my 4 yr old with out her CI on will list

>those off for you if you stick her in a sound booth, and she is profound

>w/out her CI's on.

>

>If you need more info on the less common spondee/bisyllabic words let me

>know and I will get you the list.

>

>I agree that Audiology does not test real life situations. There is a great

>research study being done at U Wisconsin in Madison on bilateral CI speech

>discrimination in noise. I think the test they use should be given to all

>children being reviewed for a CI

>

>It is what sounds like ladies talking at a dinner party you have to pick the

>man saying the spondee word out of the ladies voices.. this is real life.

>This is what a classroom environment sounds like.

>

>I hope by the time I am an Audiologist there will be some new testing in

>place that is more reflective of real life.. not everyone lives in a sound

>booth. I hope Hopkins works out for you!

>

>Best,

>Angie in KS

>Au.D Candidate WSU

>mom to Allie 4 yrs, bilateral N24

>

>

>>

>> I feel for you guys. But you are also right, if any medical place is

>> going to get it right, it would probably be Hopkins! Hope your experience

>> is vastly improved. My daughter lives in DC, her husb is from land,

>> parents are in Pasadena and his brother is in Baltimore. So I know how huge

>> the traffic/parking etc hassles are. If any kid deserves a break it is

>> ! And if any kids mom deserves a break it is you.

>>

>>

>>

>>

>>

>>

>>

>> All messages posted to this list are private and confidential. Each post

>> is the intellectual property of the author and therefore subject to

>> copyright restrictions.

>>

>>

>>

>>

[Guest guest]

Hi ,

This subject really burns me too. My daughter also tested out a few times before

being

accepted as a borderline candidate. She was activated 5/11. Changing centers is

bound to

help. What you really need is a sympathetic audi. I don't know about s

Hopkins, but I can

give you names of a couple centers that I think are more flexible off-list.

Janet