Introduction

[Guest guest]

YES BERT.IMPORTANT IS THE FACT U COMPLETE THE TREATMENT....WORK ON THE

INJECTIONS BOTH MENTALLT AND PHYSICALLY.USE UR WILL POWER TO FEEL

BETTER...EVEN WITH THE ASCITES AND CHRONIC HEPATITIS ..INTERFERON IS THE

BEST AND THE ONLY REMEDY..IT DOES REDUCE THE

MORBIDIDY...COMPLICATIONS..U MSUT KNOW ITS ONE YR OR 6 MONTHS...FIGHT ON

THE SIDE EFFECTS....I AM SURE U SHALL BE FREE FROM THE VIRUS.

GOD BLESS U.

>

> My name is Bert, I have chronic HCV, with fibrosis, ascistes & anemia.

> I have gone through one round of rebetol theraphy in 2000. I could not

> handle the meds and work. No work no insurance! I am currently

disabled

> with fair health and an thinking about tring a second round with the

> newer interferons. The old routine was shots 3x week and pills twice a

> day.

> Perhaps the newer sustained release products will be more effective

and

> less of a strain on the body.Since I no longer work 60hrs a week I

> should be able to handle them this time.

>

[Guest guest]

Hi,Gerald,

Welcome in. I can't speak to your tinnitus question, because I always

had it, and still do. It even seems to be a little worse now, though many tell

me their tinnitis went away after surgery! Hopefully you will be as lucky.

Also, I was implanted at NYU so if you have any trouble at all just tell

them you will send Jackie in to see them. They will treat you very well

then! Haha - just teasing. but you are in excellent hands there. My first

implant was improperly implanted (NOT at NYU) and Dr. Roland discovered it,

removed

it, replaced it, and then I went for the other ear less than a year later.

So keep the good thoughts. I wish you all the best.

) Jackie

Implanted - right ear - Oct.2002 - Nucleus 24/3G

Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G

Implanted - left ear - Sept.2005 - Nucleus-Freedom

[Guest guest]

Gerald

I too find that 5-0 tally somewhat disheartening. The positive side

is, just look at the glowing upgrade comparisons, is that this technology

seems to be improving by leaps and bounds.

What ideally I want to hold out for is the day when nonsurgical and

reversible procedures are possible.

Part of the reason I came to this list was to discover other resources.

In mentioning Beyound Hearing, I have something lse to now Google for

<smile>!!

Folks, keep posting the great and informative posts.

You are providing very useful info.

thanks!!!

[Guest guest]

Jen,

You already know me (and Tigger!) from another list. It's good to see you

and Nixon here! Welcome! <smile>

Left ear - Nucleus 24 Contour Advance with 3G

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

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

[Guest guest]

Hi Jen,

About time you spoke. LOL Nice to see you come out of your cave, even

if it is cold and snowy outside. You will learn lots here. Dont be afraid

to ask questions. LOL

*---* *---* *---* *---* *---*

If at first you DO succeed, try not to look astonished!

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

Welcome Jen and Nixon.

Be careful, dont called Bob, or Bob :-).

Are you a candidate for a C.I.?

You will meet new and old fols on here :-)

Ted F.

>

> It is about time I introduce myself <grin>

>

> I joined on the recommendation of of this list <grin>

>

> I am not a CI user, but I have a lot of friends who utilize this

> wonderful piece of technology.

>

> I am currently attending college to attain certification in office

> administration. My hobbies include bowling, traveling, reading,

> current events, history, dogs, etc. I am currently residing in

> Northern BC.

>

> I hope to learn a great deal more about the CI and meeting some new

> fols on here... Now what shall I eat for dinner???

>

> Jen and Nixon (my guide dog)

>

[Guest guest]

Ted,

Thanks for warning my friend Jen on my name. LOL

And you said " You will meet new and old fols on here. "

I doubt she got that but maybe she did...and wont cop to it.

*---* *---* *---* *---* *---*

Dogs love their friends and bite their enemies, quite unlike people, who are

incapable of pure love and always have to mix love and hate.

-- Sigmund Freud

& Dreamer Doll (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

[Guest guest]

You're welcome, .

As I said, all you Bobs look the same to me :-)

Ted F.

>

> Ted,

> Thanks for warning my friend Jen on my name. LOL

>

> And you said " You will meet new and old fols on here. "

>

> I doubt she got that but maybe she did...and wont cop to it.

>

> *---* *---* *---* *---* *---*

> Dogs love their friends and bite their enemies, quite unlike

people, who are

> incapable of pure love and always have to mix love and hate.

> -- Sigmund Freud

> & Dreamer Doll (Guide Dawggie)

> Newport, Oregon

> N24C 3G 8/2000 Hookup

> rclark0276@...

> http://webpages.charter.net/dog_guide/

>

[Guest guest]

Welcome Jen & Nixon!

Jane

[Guest guest]

Hi, Len and Sherri, good that you are doing your homework before commiting to an

inplant. I can give you my opinion and experience.

After a progressive hearing loss of some 14 to 15 years (no one knows why) I

finally qualified for an implant. After my first implant five years ago, I

thought I had died and gone to heaven LOL!!! I was able to once again enter

society and attend family functions without the stress that I had before (wore

two BTE hearing aids)....about six months into my first implant, I decided to go

bilateral and I would do it all again in a heartbeat!

Hearing with my implants is what I remember hearing was before my

loss.....voices sound the same as they did when I was hearing. Environmental

sounds are great also.

I was lucky in that upon activation I was able to hear and understand speech.

It seems that people who have heard before are most able to understand speech at

activation.

I don't have Menieres and didn't have any balance problems. Everyone is

different so I can only tell you my experiences. Both my procedures were

one-day surgeries and although I did experience pain for a few days; meds are

prescribed and they helped quite a bit.

I'm sure you'll have more questions and if you'd like to email me, please do so.

Best of luck to you.

Lois

progressive hearing loss-15 yrs.

right-N24C-9/17/01

left-N24C-8/23/02

Bilateral Freedom Upgrade-10/11/06

[Guest guest]

Sherri,

I received my first CI after having severe-profound hearing loss since 1995.

To me, the CI has been a godsend! Prior to my CIs, I was unable to hear on

the phone, converse with others (in quiet or in noise) or hear any of the

sounds you mentioned. My speech discrimination score with hearing aids prior

to my CI was 20%. It's now over 90% for sentences in quiet and sentences in

noise. My single word understanding went from 0% with hearing aids to over

80% with my CI.

After 11 years of being unable to use the phone, I'm now able to do that

with ease. It feels wonderful being able to initiate a phone call by myself

without using relay or having to ask a friend or family member to call on my

behalf.

I have bilateral CIs and am able to hear quite well in noisy environments

such as a restaurant. My CIs have features which eliminate background noise

and focus on the person or people I want to hear. It's wonderful!

I have no difficulty hearing any of the sounds you mentioned. In fact, I can

still remember the first time I heard thunder. Prior to my first CI, I

couldn't hear thunder even with my HAs. After I heard it for the first time

with my CI, I couldn't believe it. I could hear the crescendo of thunder as

it became louder or softer. Amazing!

As for the downsides of the CI, I can't think of any! However, I will be

completely honest with you. I experience bilateral tinnitus as a result of

my CI surgeries which continues to be an issue for me. Sometimes it's

difficult to ignore, but I accept it as a trade-off for the wonderful gift

of hearing I've received.

Good luck to you and your husband as you both go through the CI process!

Left ear - Nucleus 24 Contour Advance with 3G

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

Right ear - Nucleus Freedom

Implanted: 2/1/06 Activated: 3/1/06

[Guest guest]

Hi Len and Sherri,

I was recently implanted with the Nucleus Freedom and have been amazed at

the improvement in my hearing. I had a steep ski slope loss 20db at 250 hz

sloping to 110 db by 1000 hz. My speech discrimination score was 38% at my

final evaluation using 2 Phonak Savia 311 BTEs. Both ears were pretty close

to the same. I was a little concerned about losing the residual hearing in

my implanted ear, but the HUGE improvement has been well worth it.

I could hear and understand speech right off at my activation. The sounds

are very robotic at first, but as you get used to it, the sounds become more

normal sounding. I was also able to use the phone right away. Previously, I

had been struggling with 2 ears and an FM system. Everyone progresses at

different rates. Music takes some time to learn to enjoy again. I am

starting to like instrumental music again, but singing sounds like off key

moaning. I know this will improve over time.

The CI does not give the very low frequencies, but does great for normal

speech discrimination. Most environmental sounds come through just fine. I

suggest implanting the worst ear and then you can continue using a hearing

aid in the other. Each audiologist differs as to when you can resume wearing

a hearing aid after activation. Some want you to stop wearing it for awhile

to get used to the sound of the CI and others say you can keep wearing it

all along. Mine wanted me to stop wearing mine for a few months, and I

haven't missed it.

The surgery was not bad. I had a little nausea from the anesthesia the first

day, but otherwise, everything was fine. I did not need the pain meds and

was not dizzy. I had no balance problems.

I can hear so much better than I could with hearing aids in every situation

I have been in. I am so much more relaxed when talking with people, and I've

only been activated since the end of September. I don't even have all of the

bells and whistles programmed on mine yet. I see my audiologist tomorrow to

get all of the programs put on.

I highly recommend the CI and feel that it has truly given me my life back.

Lynn

Fairhope, AL

Nucleus Freedom

Surgery date: 9/6/06

Activation date: 9/27/06

_____

From: [mailto: ] On Behalf Of

brnrpal@...

Sent: Thursday, November 16, 2006 4:57 PM

Subject: Introduction

My husband (61 y.o.) is considering cochlear implant surgery but before

committing to the procedure, we'd very much appreciate the perspective of

your

first hand experiences. He's cleared the screening process and is a viable

candidate for implant, one ear 49%, the other 28% using (2) Sumo hearing

aids,

diagnosed as Meniere's Disease but with minimal if any vertigo. He does have

a fair degree of functionality so he's able to carry on a face to face

conversation pretty well... background noise, telephone, and TV are

problematic,

music and distant source are out of the question.

Given that he doesn't have total hearing loss, his concerns about the

implant are benefit vs risk.

On the risk side, we'd appreciate hearing your experiences WRT balance

(vertigo or otherwise) issues beyond the initial week or two post op,

tinnitus,

and any other long term negative effects.

On the benefit side, we'd like to get a feel for how much fuller function is

probable in terms of everyday endeavors like restaurant dining, TV,

telephone, and music.

Another consideration is whether the strong focus of implant technology

being on language means that CI recipients tend to loose non-linguistic

sounds

like birds, frogs, dogs, thunder, etc. Other limitations?

I'm sure there are considerations we haven't even thought of so all comments

are welcome.

TIA,

Len and Sherri

..

<http://geo./serv?s=97359714/grpId=7962067/grpspId=1705013490/msgId

=49963/stime=1163720171/nc1=3848445/nc2=2/nc3=3>

[Guest guest]

In a message dated 3/31/2007 2:39:14 AM GMT Standard Time,

gjohnson3712@... writes:

It has been most interesting reading the posts the last few weeks. I

also read the first 2500 posts in the files, and the book from

Sweden, Black on White. I have learned a lot, and consider myself

fortunate to have only a mild case of ES.

PAUL UK WRITES -

Good sensible feedback/advice many thanks, your stable/rational approach to

ES here is refreshing. Since you have an appetite for the information may I

sugesst that you check out the English charity website for ES

_www.electrosensitivity.org.uk_ (http://www.electrosensitivity.org.uk) . (If

you have not

done so already).

Kind regards

UK - BSc Hons Building Surveying.

[Guest guest]

Wecome to the group. Is there anyway a poor person can protect themselves from

this em pollution at home without a big outlay of cash which is non existant?

Avoidance is the only thing I can afford in regard to the protections I find on

the website group.

I have not been able to go to the Environmental Health Center of Dr. Rae in

Dallas due to the income limitation I face daily. Is there any written work I

can access online anyone?

Peg

Introduction

Just a note to introduce myself. I am a retired Professor of

Electrical Engineering, Kansas State University. I have had food and

chemical sensitivities since I was 7 years old (I am 68 now). I

developed an interest in electromagnetic sensitivity perhaps 15-20

years ago and did some reading. Given my other sensitivities, it

seemed prudent to avoid EM fields when I could. I got rid of the

clock radio located next to my head while sleeping. I bought a pre-

paid cell phone that is used only on vacations or other times when I

just must be in contact. It is turned on only a few hours per year. I

drive bottom-of-the-line cars, crank up windows, no keyless entry,

etc. I use conventional wired landline telephones. There is no

wireless in the house. I took early retirement at age 55, leaving a

modern engineering building with lots of lights and computers, and

spending my days on a 20 acre site about 10 miles from town, where no

neighbors house is visible from any place on the 20 acres. My overall

health was declining until retirement, but has been pretty stable

since. I suspect that is mostly due to the fresh air, exercise, and

lower stress levels, but a lower EMF load did not hurt. Anyhow, my ES

is quite mild compared to most people on this list. I recently had a

consulting job that required me to be in the electrical room of my

old engineering building (think hot, noisy, and big wires). The

magnetic fields where I was standing were in the range of 50 to 100

mG, with regions in the aisles where I was walking that were above

200 mG. I was there for a period of 2-4 hours on two different days.

Both times I felt really ill for the next 12-18 hours. I think I have

fully recovered, but will try to avoid doing that sort of challenge

again.

It has been most interesting reading the posts the last few weeks. I

also read the first 2500 posts in the files, and the book from

Sweden, Black on White. I have learned a lot, and consider myself

fortunate to have only a mild case of ES.

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

Peg: Reading posts on this forum will give you many ideas. Most of us

try many different avoidance strategies before finding the ones that

help. I would start exploring with the following:

1. Unplug the TV from its receptacle for a couple of days and see if

you feel better. My own ES is mild, but I still feel brain-dead after

about an hour in front of the TV. (Maybe it is the content of the

programming).

2. Likewise the computer for the next couple of days.

3. Likewise the microwave for the couple of days after that.

4. Move any plug-in-the-wall equipment as far from your bed as

possible (clocks, radios, etc.)

>

> Wecome to the group. Is there anyway a poor person can protect

themselves from this em pollution at home without a big outlay of

cash which is non existant? Avoidance is the only thing I can afford

in regard to the protections I find on the website group.

> I have not been able to go to the Environmental Health Center of

Dr. Rae in Dallas due to the income limitation I face daily. Is there

any written work I can access online anyone?

> Peg

>

> Introduction

>

>

> Just a note to introduce myself. I am a retired Professor of

> Electrical Engineering, Kansas State University. I have had food

and

> chemical sensitivities since I was 7 years old (I am 68 now). I

> developed an interest in electromagnetic sensitivity perhaps 15-20

> years ago and did some reading. Given my other sensitivities, it

> seemed prudent to avoid EM fields when I could. I got rid of the

> clock radio located next to my head while sleeping. I bought a pre-

> paid cell phone that is used only on vacations or other times when

I

> just must be in contact. It is turned on only a few hours per year.

I

> drive bottom-of-the-line cars, crank up windows, no keyless entry,

> etc. I use conventional wired landline telephones. There is no

> wireless in the house. I took early retirement at age 55, leaving a

> modern engineering building with lots of lights and computers, and

> spending my days on a 20 acre site about 10 miles from town, where

no

> neighbors house is visible from any place on the 20 acres. My

overall

> health was declining until retirement, but has been pretty stable

> since. I suspect that is mostly due to the fresh air, exercise, and

> lower stress levels, but a lower EMF load did not hurt. Anyhow, my

ES

> is quite mild compared to most people on this list. I recently had

a

> consulting job that required me to be in the electrical room of my

> old engineering building (think hot, noisy, and big wires). The

> magnetic fields where I was standing were in the range of 50 to 100

> mG, with regions in the aisles where I was walking that were above

> 200 mG. I was there for a period of 2-4 hours on two different

days.

> Both times I felt really ill for the next 12-18 hours. I think I

have

> fully recovered, but will try to avoid doing that sort of challenge

> again.

>

> It has been most interesting reading the posts the last few weeks.

I

> also read the first 2500 posts in the files, and the book from

> Sweden, Black on White. I have learned a lot, and consider myself

> fortunate to have only a mild case of ES.

>

>

>

>

>

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

In a message dated 4/14/2007 5:22:51 PM GMT Standard Time, jspirit@...

writes:

written work I can access online anyone?

> Peg

PAUL UK REPLIES -

Peg try _www.electrosensitivity.org.uk_

(http://www.electrosensitivity.org.uk) a british charity for the ES sufferer

an excellent scource of info for the ES.

[Guest guest]

Welcome to Peg:

Starting with affordable, I found major relief in putting a cheap-o

foil camping blanket under my mattress. (I do already sleep in a

metal-free bed I should add.) I also want to explain that my own

electro-sensitivity is not necessarily minor, but let's say

subliminal. I believe it underlies pretty much all my own chronic

problems, making it more difficult to experience normal healing from

any condition. Our entire electro-chemistry is denatured, whether at

the onset of new symptoms or exacerbating ongoing problems, making the

curable intractable.

The statistical inference I'd draw from this is that:

Those who can trace their symptoms to some particular window or

episode of e-m exposure are only the tip of the iceberg of humanity

and all life.

(In my opinion, we're all " poor people " when it comes to " health care "

which, also in my opinion, boils down to something like " learning how

to live. " The screws certainly are tighter in these times. I

remember hearing of Dr. Rae's work in the 80s when I was active in our

local " environmental health " support group. His work has always

struck me as " medicine for the rich. " I feel the same about most good

competent non-toxic naturapathic medicine. It's the

professionalization of " health care " itself which is a problem. The

real care is moving to the grassroots, to self-care and education. A

lot of what we learn here from each other should be commonly taught in

elementary schools. Forgive me, I rant when I'm dreaming.)

With best wishes,

mgw

>

> Peg: Reading posts on this forum will give you many ideas. Most of us

> try many different avoidance strategies before finding the ones that

> help. I would start exploring with the following:

> 1. Unplug the TV from its receptacle for a couple of days and see if

> you feel better. My own ES is mild, but I still feel brain-dead after

> about an hour in front of the TV. (Maybe it is the content of the

> programming).

> 2. Likewise the computer for the next couple of days.

> 3. Likewise the microwave for the couple of days after that.

> 4. Move any plug-in-the-wall equipment as far from your bed as

> possible (clocks, radios, etc.)

>

>

[Guest guest]

Thank you all for your input. Peg

Re: Introduction

Welcome to Peg:

Starting with affordable, I found major relief in putting a cheap-o

foil camping blanket under my mattress. (I do already sleep in a

metal-free bed I should add.) I also want to explain that my own

electro-sensitivity is not necessarily minor, but let's say

subliminal. I believe it underlies pretty much all my own chronic

problems, making it more difficult to experience normal healing from

any condition. Our entire electro-chemistry is denatured, whether at

the onset of new symptoms or exacerbating ongoing problems, making the

curable intractable.

The statistical inference I'd draw from this is that:

Those who can trace their symptoms to some particular window or

episode of e-m exposure are only the tip of the iceberg of humanity

and all life.

(In my opinion, we're all " poor people " when it comes to " health care "

which, also in my opinion, boils down to something like " learning how

to live. " The screws certainly are tighter in these times. I

remember hearing of Dr. Rae's work in the 80s when I was active in our

local " environmental health " support group. His work has always

struck me as " medicine for the rich. " I feel the same about most good

competent non-toxic naturapathic medicine. It's the

professionalization of " health care " itself which is a problem. The

real care is moving to the grassroots, to self-care and education. A

lot of what we learn here from each other should be commonly taught in

elementary schools. Forgive me, I rant when I'm dreaming.)

With best wishes,

mgw

>

> Peg: Reading posts on this forum will give you many ideas. Most of us

> try many different avoidance strategies before finding the ones that

> help. I would start exploring with the following:

> 1. Unplug the TV from its receptacle for a couple of days and see if

> you feel better. My own ES is mild, but I still feel brain-dead after

> about an hour in front of the TV. (Maybe it is the content of the

> programming).

> 2. Likewise the computer for the next couple of days.

> 3. Likewise the microwave for the couple of days after that.

> 4. Move any plug-in-the-wall equipment as far from your bed as

> possible (clocks, radios, etc.)

>

>

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

> Is there anyway a poor person can protect themselves from this em

> pollution at home without a big outlay of cash which is non existant?

> Avoidance is the only thing I can afford in regard to the protections

> I find on the website group.

> I have not been able to go to the Environmental Health Center of Dr.

> Rae in Dallas due to the income limitation I face daily. Is there any

> written work I can access online anyone?

> Peg

The basic starting point for us was to turn off all circuits at the

breaker box that we could live without. Find out what the least

electricity you can live with. Turn on/off breakers as needed. You'll

save money on your electricity bill! That will reduce both your electric

field and magnetic field exposure. You can also unplug appliances and

that will reduce your RF exposure at the appliance. Avoidance is the

best thing. Working with your nutrition is also very helpful.

WEB SITES:

www.safewireless.org <http://www.safewireless.org/>:

www.health-concerns.org <http://www.health-concerns.org/>:

www.mast-victims.org <http://www.mast-victims.org/>:

www.cprnews.com <http://www.cprnews.com/>:

www.emr.co.nz <http://www.emr.co.nz/>:

www.energyfields.org/ <http://www.energyfields.org/>

www.emfacts.com <http://www.emfacts.com/>

www.emfbioeffects.org <http://www.emfbioeffects.org/>

www.microwavenews.com <http://www.microwavenews.com/>

www.powerwatch.org.uk/ <http://www.powerwatch.org.uk/>

www.wave-guide.org/ <http://www.wave-guide.org/>

www.neilcherry.com/ <http://www.neilcherry.com/>

[Guest guest]

i agree completely with what you say, i have spent thousands of £ on

seeing ppl and to be honest i have learnt more from

ppl on here and others on forums.

docs who work in the alternative sector take the piss in my experience.

pete

On 14 Apr 2007, at 15:54, mgwest wrote:

> Welcome to Peg:

>

> Starting with affordable, I found major relief in putting a cheap-o

> foil camping blanket under my mattress. (I do already sleep in a

> metal-free bed I should add.) I also want to explain that my own

> electro-sensitivity is not necessarily minor, but let's say

> subliminal. I believe it underlies pretty much all my own chronic

> problems, making it more difficult to experience normal healing from

> any condition. Our entire electro-chemistry is denatured, whether at

> the onset of new symptoms or exacerbating ongoing problems, making the

> curable intractable.

>

> The statistical inference I'd draw from this is that:

> Those who can trace their symptoms to some particular window or

> episode of e-m exposure are only the tip of the iceberg of humanity

> and all life.

>

> (In my opinion, we're all " poor people " when it comes to " health care "

> which, also in my opinion, boils down to something like " learning how

> to live. " The screws certainly are tighter in these times. I

> remember hearing of Dr. Rae's work in the 80s when I was active in our

> local " environmental health " support group. His work has always

> struck me as " medicine for the rich. " I feel the same about most good

> competent non-toxic naturapathic medicine. It's the

> professionalization of " health care " itself which is a problem. The

> real care is moving to the grassroots, to self-care and education. A

> lot of what we learn here from each other should be commonly taught in

> elementary schools. Forgive me, I rant when I'm dreaming.)

>

> With best wishes,

> mgw

>

>

> >

> > Peg: Reading posts on this forum will give you many ideas. Most of

> us

> > try many different avoidance strategies before finding the ones that

> > help. I would start exploring with the following:

> > 1. Unplug the TV from its receptacle for a couple of days and see if

> > you feel better. My own ES is mild, but I still feel brain-dead

> after

> > about an hour in front of the TV. (Maybe it is the content of the

> > programming).

> > 2. Likewise the computer for the next couple of days.

> > 3. Likewise the microwave for the couple of days after that.

> > 4. Move any plug-in-the-wall equipment as far from your bed as

> > possible (clocks, radios, etc.)

> >

> >

>

>

>

>

[Guest guest]

Hello,

My son had 3 surgeries done by Dr. Balkany for recurring cholesteatoma. He is one of the best surgeons out there for this condition in the Florida area. Dr. Grobman I heard is good also but I can't comment on his surgical skills. My son's cholesteatoma ate away at his facial nerve and 2 of the three bones in his ear. Dr. Balkany did a 6 hour surgery on him and had to literally scrape the cholesteatoma off of his facial nerve. We have been seeing him for the last 8 years every 3-6 months for cleanings. If you have any questions feel free to contact me.

Take Care,

See what's free at AOL.com.

[Guest guest]

Marilyn,

I have an appt with Dr Grobman For my son on the 30th. it was very

difficult to get him in. He does have a good reputation, but I hear he is

backed up for sx for 3 months. Is that what they told you? Let me know how

it goes with the head of ENT at U of M. I live in Lighthouse point. Cant

they give you Neplasta I think it is called to boost your WBC?

Introduction

Hello to all C'Toma board,

I am new to this group and find myself " joining " yet another club where

I dont want to be a member. I have survived an agressive, stage IIb

breast cancer for 2 years. I received dose dense chemo and my immune

system has not gone back to normal, 1 yr post chemo. My WBC is 2.9

(normal 4.6) so I have been trying to avoid all infections. I have had

eustachian tube dysfunction for many years and had pressure equalizing

tubes put in twice, both ears. I feel the C Toma was probably caused by

on going infections due to my depressed immune system. I saw a neuro

otologist Fri, Dr Grobman, in Miami. I was sort of blind sided by the

diagnosis of C toma & really didnt know the right questions to ask. He

told me I need surgery, did a hearing test, and told me to come back in

2 months to plan surgery. Do any of you have experience with Dr

Grobman and/or know of exceptional neuro otologist in S Fl area? I do

have an apt to see the head of ENT dept at Univ of Miami next Thurs; Dr

Balkoney.

From my reading online it appears that the surgeon must be excellent. I

will also have to get my WBC's back in the 3 thousands in order to do

the surgery. I am also doing acupuncture to raise the WBC and

counteract some of the other side effects of chemo/radiation/surg. Is

there anyone else out there with aquired neutropenia that has C Toma.

Any suggestions would be great appreciated. My son is a pilot and I can

fly anywhere Continental goes, but am not equalizing any pressure on

that side so cant imagine flying anywhere. I feel stuck down here in

south Fl! Thanks in advance for any recommendations, suggestions.

Marilyn

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<p><P><FONT color=ff00ff " size= " >Hello to all C'Toma

board,</FONT></P>

<P><FONT color=ff40ff " ><FONT color=ff00ff " >I am new to</FONT> this group and

find myself " joining " yet another club where I dont want to be a

member. & nbsp; I have survived an agressive, stage IIb breast cancer for 2

years. & nbsp; I received dose dense chemo and my immune system has not gone

back to normal, 1 yr post chemo. & nbsp; My WBC is 2.9 (normal 4.6) so I have

been trying to avoid all infections. & nbsp; I have had eustachian tube

dysfunction for many years and had pressure equalizing tubes put in twice,

both ears. & nbsp; I feel the C Toma was probably caused by on going

infections due to my depressed immune system. & nbsp;I saw a neuro otologist

Fri, Dr Grobman, in Miami. & nbsp; I was sort of blind sided by the diagnosis

of C toma & amp; really didnt know the right questions to ask. & nbsp; He told

me I need surgery, did a hearing test, and told me to come back in 2 months

to plan surgery. & nbsp; & nbsp; Do any of you have experience with Dr Grobman

and/or know of & nbsp;exceptional & nbsp;neuro otologist in S Fl area? & nbsp; I

do have an apt to see the head of ENT dept at Univ of Miami next Thurs; Dr

Balkoney. & nbsp; </FONT></P>

<P><FONT color=ff40ff " >From my reading online it appears that the surgeon

must be excellent. & nbsp; I will also have to get my WBC's back in the 3

thousands in order to do the surgery. & nbsp; I am also doing acupuncture to

raise the WBC and counteract some of the other side effects of

chemo/radiation/<wbr>surg. & nbsp; Is there anyone else out there with aquired

neutropenia that has C Toma. & nbsp; </FONT></P>

<P><FONT color=ff40ff " >Any suggestions would be great appreciated. & nbsp; My

son is a pilot and I can fly anywhere Continental goes, but am not

equalizing any pressure on that side so cant imagine flying

anywhere. & nbsp; & nbsp; I feel stuck down here in south Fl! & nbsp; Thanks in

advance for any recommendations, suggestions. & nbsp; & nbsp; & nbsp;

Marilyn</FONT></P>

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--2-3285124507-3152705413=--

[Guest guest]

Wow, how is your son now?

Re: Introduction

Hello,

My son had 3 surgeries done by Dr. Balkany for recurring cholesteatoma. He is one of the best surgeons out there for this condition in the Florida area. Dr. Grobman I heard is good also but I can't comment on his surgical skills. My son's cholesteatoma ate away at his facial nerve and 2 of the three bones in his ear. Dr. Balkany did a 6 hour surgery on him and had to literally scrape the cholesteatoma off of his facial nerve. We have been seeing him for the last 8 years every 3-6 months for cleanings. If you have any questions feel free to contact me.

Take Care,

See what's free at AOL.com.

[Guest guest]

Hi Marilyn, I don't have any experience with Dr. Grobman, but there has recently been some posts indicating that he is a very good surgeon - you should definitely check the group archives regarding him. About pressure equalization, I should have mentiioned to everyone before that there are some earplugs available that are specifically designed for that purpose when flying. I cannot recall the name, though I think has flight or some variation in it. They are blue and oddly shaped - longer than usual, and with swirls like on a screw. I used them the last time I flew and they were wonderful! Hope this helps, and good luck with the process. I know that it is a very traumatic diagnosis, but given everything that you have been through I think you will do just fine. You must be a trooper! Best wishes,

Marilyn <mvanhouten@...> wrote: Hello to all C'Toma board, I am new to this group and find myself "joining" yet another club where I dont want to be a member. I have survived an agressive, stage IIb breast cancer for 2 years. I received dose dense chemo and my immune system has not gone back to normal, 1 yr post chemo. My WBC is 2.9 (normal 4.6) so I have been trying to avoid all

infections. I have had eustachian tube dysfunction for many years and had pressure equalizing tubes put in twice, both ears. I feel the C Toma was probably caused by on going infections due to my depressed immune system. I saw a neuro otologist Fri, Dr Grobman, in Miami. I was sort of blind sided by the diagnosis of C toma & really didnt know the right questions to ask. He told me I need surgery, did a hearing test, and told me to come back in 2 months to plan surgery. Do any of you have experience with Dr Grobman and/or know of exceptional neuro otologist in S Fl area? I do have an apt to see the head of ENT dept at Univ of Miami next Thurs; Dr Balkoney. From my reading online it appears that the surgeon must be excellent. I will also have to get my WBC's back in the 3 thousands in order to do the surgery. I am also doing acupuncture to raise the WBC

and counteract some of the other side effects of chemo/radiation/surg. Is there anyone else out there with aquired neutropenia that has C Toma. Any suggestions would be great appreciated. My son is a pilot and I can fly anywhere Continental goes, but am not equalizing any pressure on that side so cant imagine flying anywhere. I feel stuck down here in south Fl! Thanks in advance for any recommendations, suggestions. Marilyn

Get the free toolbar and rest assured with the added security of spyware protection.

[Guest guest]

,

Thanks, I just e-mailes him. Figured I would have a better chance of getting him in.

Re: Introduction

Hello,

My son had 3 surgeries done by Dr. Balkany for recurring cholesteatoma. He is one of the best surgeons out there for this condition in the Florida area. Dr. Grobman I heard is good also but I can't comment on his surgical skills. My son's cholesteatoma ate away at his facial nerve and 2 of the three bones in his ear. Dr. Balkany did a 6 hour surgery on him and had to literally scrape the cholesteatoma off of his facial nerve. We have been seeing him for the last 8 years every 3-6 months for cleanings. If you have any questions feel free to contact me.

Take Care,

See what's free at AOL.com.