a

[Guest guest]

Hi

I do believe you did give me that information but for the life of me I can't

find it. Not sure if it's all the worry over Brittany or if it's my age that

is messing with my mind.

If you don't mind when you get a chance could you send it to me again?

Thanks so much.

a - Mom to Brittany 5 yo-AN, HA/FM

[Guest guest]

Hi, a,

It looks like my very learned forum mates have responded very well to

your dilemma about implanting your daughter. I understand the hesitation you

have. I worked with kids with implants for @ 8 years before I decided to go

ahead and get one for myself. Of course, I am no kid! LOL I agree with

the others that you need to have your daughter examined and evaluated by a

qualified cochlear implant team, rather than a regular ENT. Not to say your dr

isnt well versed, but it is so much different when a team who does this every

day looks at all the facts and test results. I know there are several on

this forum also dealing with AN so I am sure they will weigh in soon. Please

understand that I do benefit from my CI. Lipreading is easier, but speech

distinction without it isn't where I'd like it to be. The fact that that may

be, is explained thoroughly before one is implanted and I accepted that. (ok -

intellectually, not emotionally! LOL). I AM hearing better. I just want

more and I want it yesterday! That's why I am wondering if anyone got that

" more " by implanting their second ear. I wish you good luck and please

continue to write in, even if just to vent. People here are so nice and

knowledgable without being condescending. there are a few " bad apples " but

they are

harmless! (hehehe, teasing, of course!)

) Jackie

[Guest guest]

Jackie

Thanks so much for your reply. I do hope the ones here with AN do chime in

because information from someone first hand with AN would be so valuable to me.

While my ENT makes it sound like Brit should be so deaf to get the implant I

don't wish that upon her but I just want improvement with the little bit of

hearing she does have. I pray her hearing does come back once we get the sinus

infection cleared up. When she is well or her hearing is not fluctuating she

does well with what hearing she does have which makes me want to hold off on

implanting her. Technology is always improving. It is just when she is sick

and down side of fluctuation makes me wonder why wait to implant her. So

thanks for allowing me to stay here even if it is just to vent. Seems like I

need

to vent all the time anymore because I get so aggravated with these docs who

think they know everything and don't. When I asked questions about her AN they

said " you want answers and unfortunately we don't have them " but yet they

know the answer to implanting her and don't know her well at all. I think they

spent at least 10 minutes with her each.... Okay, I've venting again. We're

in Va. and I sent her tests to The Hearing Center in Baltimore whom refused to

even see her based on tests. She scored 70% speech discrimination. She was

tested on that particular test " Wheres the toothbrush, the airplane " . She is

so smart she could figure that out easily. When they tested her recently with

plugs in her ears and she had to repeat the word I couldn't understand a word

she said and I am her mom and understand everything she says.. Most people

do! She is that good that most of her speech/language is 90% intelligible..

However with the plugs in her ears I couldn't understand her and I think that

is due to the AN.

a - Mom to Brittany 5 yo-AN, HA/FM

[Guest guest]

Pam,

Sure, I'd be glad to. <smile> I'll check my computer for the information and

get back to you.

CI candidate awaiting insurance approval and surgery date

[Guest guest]

My last post should have read a...not Pam. I have no idea why I typed

that. <grin> Guess it's going to be one of those days where my fingers move

faster than the brain. LOL!

CI candidate awaiting insurance approval and surgery date

[Guest guest]

In a message dated 12/25/04 12:13:50 AM Eastern Standard Time,

nucleus24@... writes:

It is the holidays. I'm snowed in. Cleveland - 7 degrees and 18

inches of snow. Who was dreaming of THIS kind of White Christmas.

I was! Thanks for the reply...

a

[Guest guest]

a,

GREAT news. Congrats on the baby. So happy for you and that darling husband

of yours...don't remember his name, but do remember his adoration of

you...Good luck with the new baby I am sure she will be a

delightful...hopefully she won't be a THING like your evil twin...

V

_____

From: [mailto: ] On

Behalf Of tricia slade

Sent: Tuesday, May 24, 2005 6:40 PM

Subject: a

Hi

goodluck with your new baby I hope everyhting goes well. You sound like

your doing great and your weight loss has been good. Again goodluck and god

bless.

Tricia

a <alexaesq@...> wrote:

Old-timer? Well, not so old, lol... I " did the dance " with Dr. R in

July of 2000, I wasn't one of the mega-losers, but I had a feeling

that was never in my cards, I always had such a horrible metabolism.

But, I did lose 80 pounds from the surgery, and then another 25 pounds

or so from diet and exercise. Today, 5 years out, I have the

wonderful benefit of being able to eat whatever I want, and I quite

literally seem incapable of GAINING weight (knocking on wood as I

type), which for me is the biggest gift in the world. One of these

days I will take off another 20 or so and finally get the plastic

surgery I've always wanted (tummy tuck and breast lift) while I'm

still young enough to enjoy it.

BUT... <drum roll here please> I'm not worrying about loss at the

present because <more drum roll>... I'm pregnant with my 3rd child,

she is due next Friday, June 3rd. My littermates and mgb friends

might recall that I had two children already, they are 10 and 13, so

there will be quite an age gap, but we are all MAJOR excited... and

before anyone asks, YES she was planned, lol... my other 2 children

were huge at birth (daughter was 9 lbs. 14 oz., son was 10 lbs. 11),

this little princess is estimated at between 7-8 pounds, I believe a

nice side effect of the surgery as well, since larger women tend to

have larger babies (and I also had gestational diabetes with my son,

which did not recur in this pregnancy.) I STILL have to have a

c-section anyway because of my history, but I'm looking forward to

bringing home a little peanut instead of a little sumo wrestler, lol...

And for those women on the list who might be contemplating a post-MGB

baby, let me tell you that the pregnancy has been a breeze, completely

average weight gain (25 pounds) without even having to worry about it,

and from all indications (I had to have amnio and extra ultrasounds

because of my age--36--since when did that become old??? grrr!),

little Miss Ashton (we're planning on that name) is healthy as can be.

I have had quite a few issues with iron, but I've been borderline

anemic my whole life, and am not great at taking the supplements.

Otherwise--smooth sailing!

Hope everyone is doing well, quite amazing to see how much CLOS has

grown since my surgery in 2000... if anyone in CT would like to get

in contact, that would be great, perhaps someday Dr. R. will start a

CLOS New England and we can be his helpers!

a in CT

MGB July 2000, Dr. R

Then, size 22

Now, size 10 (well, except for my pregnant belly)

---------------------------------

[Guest guest]

a: I have been wondering what ever became of you. I have that good

picture of you on the cruise. Congrats on that baby. Phyllis

[Guest guest]

Well Phyllis, APPARENTLY, a has been having a VERY good time!

Anon

_____

From: [mailto: ] On

Behalf Of Skinnywannabe@...

Sent: Wednesday, May 25, 2005 9:28 PM

Subject: Re: a

a: I have been wondering what ever became of you. I have that good

picture of you on the cruise. Congrats on that baby. Phyllis

[Guest guest]

Anonymous: Yep It sounds like a real good time. How bout you? Phyllis

[Guest guest]

Bad ! Er, I mean " Anon " ... That sounds like something my evil

twin Ursula would say. Although, come to think of it, I HAVE been

having a VERY good time...

Thanks for the good wishes everyone! -alexa

> Well Phyllis, APPARENTLY, a has been having a VERY good time!

>

> Anon

>

> _____

>

> From: [mailto: ] On

> Behalf Of Skinnywannabe@a...

> Sent: Wednesday, May 25, 2005 9:28 PM

>

> Subject: Re: a

>

>

> a: I have been wondering what ever became of you. I have

that good

> picture of you on the cruise. Congrats on that baby. Phyllis

>

>

>

[Guest guest]

I am doing very well, having a real good time myself, but certainly NOT

PREGNANT...

ANON

_____

From: [mailto: ] On

Behalf Of Skinnywannabe@...

Sent: Thursday, May 26, 2005 6:28 PM

Subject: Re: a

Anonymous: Yep It sounds like a real good time. How bout you? Phyllis

[Guest guest]

Ok, thanks for the information, ! It seems like I made a good decision

when I decided to join this group, because everyone seems to be really helpful

here! Thanks again!

M Jansen <nucleus24@...> wrote:Hi a,

Welcome to . Have you checked out the website? www..com

It will have a section of frequently asked questions, so at least

you'll know where to start with the Dr. One question to ask him is how

many implants he's done. What kind of closures he uses (sutures or

staples), etc.

Good luck with your evaluation. Let us know how it goes, and if you

think of anything you need to know, we're here to answer.

The Original

Date: Tue, 14 Jun 2005 07:58:30 -0000

From: " a " <nuttymommy0704@...>

Subject: New here

Hello all, I'm new here. Actually, I joined a week or so ago, but

hadn't gotten around to introducing myself yet. I'm 25 yrs old and I

was diagnosed as hoh when I was around 11 or 12. I had a doctor tell

me that my hearing loss was caused by too many ear infections as a

child, which caused nerve damage. Hearing loss also runs in my

family, so that doesn't help matters any either.

I am currently wearing two HA's and waiting for my first appointment

to be tested and meet with the doctor about getting CI's. I was

originally supposed to have the appointment in April, but it was

canceled and rescheduled for end of June because the audiologist was

going out of town. My Dad was supposed to take me but found out he

wouldn't be able to take off from work that day afterall, which meant

the appointment had to be rescheduled yet again, this time for July

22. I'm hoping that nothing happens to cause this appointment to be

rescheduled, because I'm starting to lose my patience! I am so

excited about the prospect of my hearing improving, and am anxiously

awaiting my appointment!

I do have a question... well I'm sure I'll have lots of questions for

you all, but as of right now, I can only think of one. Does anyone

in here see Dr. at UK Hospital in Lexington, KY? That is where

I'm supposed to be going, and was wondering if anyone knew anything

about it.

Well, hopefully I will learn alot in here and maybe soon I'll be able

to share some of my own CI Moments!

a

[Guest guest]

Hi a,

Sorry I am behind on my emails but I'm replying to your intro post from

July. Welcome to the forum!

I chose the Nucleus back in 2000 and to this day I would choose it again

if I ever decide to go bilateral. I sent you my implant journal in a private

email and that tells why I chose it 5 years ago.

I had no longer been able to go to movies and could barely hear music

except for the bass sounds. Hearing in a noisy restaurant was impossible and I

didn't bother accepting invitations from friends. My job as a teacher was

suffering and that was the last straw. I actually got what could be considered

2

promotions after being able to hear again! The little things like being able

to hear someone say " Bless you " or " Do you have the time? " are like little

miracles.

Best of luck on your journey,

[Guest guest]

I wonder why we get kicked out like that. I was hoping for someone mor

knowledgable than I am to help . I also want you, and I

to stay connected because our surgeries were so close together.

Catthy Jo

>

> Hey Everyone! I got kicked out of the chat room and I couldn't log

> back in! Sorry, I didn't want to just leave like that. My thoughts

> and prayers are will all of you tonight. Here is to a good nights

> sleep!

> a in St. Louis

>

[Guest guest]

--Thats not a problem with me. We could swap personal email address'

and phone numbers if you want. I am probable much further away than you

two. I was going to try to join the chat room again but realized I was

a day behind when I re read the email.

Will try again next time. I found out that I can't do it at home I need

to do it on our shop computer. My husband diabled everythinh here to

chat. My daughter was over using the privelege. For me thought that

suits coz it is in mid morning here.

- In achalasia , " Jo Blauer " <capmyjo@...> wrote:

>

> I wonder why we get kicked out like that. I was hoping for someone

mor

> knowledgable than I am to help . I also want you, and I

> to stay connected because our surgeries were so close together.

>

> Catthy Jo

>

>

> >

> > Hey Everyone! I got kicked out of the chat room and I couldn't log

> > back in! Sorry, I didn't want to just leave like that. My

thoughts

> > and prayers are will all of you tonight. Here is to a good nights

> > sleep!

> > a in St. Louis

> >

>

[Guest guest]

Hello, Ann! Just wanted to say I have been thinking about you and hope you are recovering very well indeed! Deborah

[Guest guest]

Hi Kinda,

your not complaining, your just sharing and looking for answers and

support like the rest of us. I just got some free care because I

haven't worked since I quit my job and am running out of funds. I

have't been to the doctors in about a year and at that time my viral

load had gone up considerably. I had given up, didn't care anymore and

was told there were no new treatments out there. After being in alot of

pain not only from this but from a disc problem in my back I decided to

get some insurance( the state does have some free assistance) and got

all my medical records and saw a doctor last week, he had blood drawn

and we will go from there, I see him tomorrow morning. I would suggest

to anyone out there to get a copy of all your doctor records--I will be

asking at the end of each visit for a copy of my results. I found out

some things from the records that I picked up from my last doctor he

never told me that I had and after looking up the stomach thing that I

didn't understand I was very surprised and not to happy that I had it.

good luck

hi this is joyce today marks a month for me right

> now. i

> > > just gave myself my 4th shota couple of min. later i thought i

> was

> > > going to barf but didn't.it's because i haven't been eating

> wellat all

> > > i forse myself to eat at least a little something.

> > > as far as your doctor he's the one that started you on this

> > > treatment and now he's talkin bout pulling the plug? what kind

> of doc

> > > would even think of something like this.i haven't been on that

> long

> > but

> > > from what i understand it is going to get worse as far as

> deppression

> > > tiredness and how it is affecting people's work.

> > > now reading what you wrote makes me look at what i get to

> > > look forward too. so it crossed my mind of the possibility of

> applying

> > > for temporary disibility until over the hurdle. i only have a

> part

> > time

> > > job so hopefully it won't be in the way.( hopefully}but either

> way i

> > > can't see why you wouldn't be eligible for it. i would think they

> > would

> > > be able to help people like us that actually need it to get

> better. i

> > > know they used to for the cottton picken alcoholics. anyway have

> u

> > > thought about checking it out let me know ok? take care

> > > joyce

> > >

> > > >

> > > > So I called my doctor's office yesterday, telling them that I

> need

> > to

> > > > take 2-3 weeks off of work to take care of myself. I am totally

> > > > exhausted. Just enough time to maybe get through the bad time

> right

> > > > now. The response was that my doctor wonders if I should be on

> > > > treatment if I can't work! Like I'm going to go off of

> treatment and

> > > > I'm at step/grade 3? One would think that my sick time was

> coming

> > > out

> > > > of HIS banks and not mine. Talk about putting more stress on

> > > > someone ... as if I wasn't already depressed enough, my

> doctor, of

> > > all

> > > > people, has placed yet another stressor on me. I'm so angry

> right

> > > now.

> > > >

> > >

> >

>

[Guest guest]

Hi Tracey, Thank you for the concern, Jordan is feeling a little better, we had chest xrays yesterday and bloodwork this morning tomorrow we go see her PC and we will see how things look, I will update you when we get results. Thanks again, aztaimw <nsigns@...> wrote: Just wondering how Jordan is doing.Thinking of you.Tracey and Madi (2yr

sytemic)

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

[Guest guest]

Anita,I would love one. Please contact me at janinegraeff@...Blessed Be,Janine a

I am one of the patients on the TV show on channel 3 in the

Philadelphia area. There were DVD's that I was sending to anyone who

wanted one. I don't know if I have any good DVD's left. I have some

DVD's that are missing parts of the show. I may have a DVD that is

missing the part of the show that the patient that did not have

Achalasia (she has gastroparesis) was on, but has me and the other

patient that do have Achalasia. If you are interested in receiving a

DVD, please let me know.

Anita from Pa.

[Guest guest]

Oh a, sorry to hear that you may need surgery...let us know what you find out on Friday. and Rob 18 Spondy Rituxan> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My Humira is not working. I'm seriously considering > > > beginning > > > > > Rituxan treatments. Does anyone on this board have any > > > > > experience to relate? My NP at the rheumy office has > > > achieved > > > > > remission with this drug. They have given it > successfully to > > > > > dozens of patients over the last 2 years (both in > clinical > > > > > trials and out) with no adverse effects. And, it is > given > > > > > initially in an infusion, then another?2 weeks later, > then > > > not > > > > > again for up to a year. You still have to continue > methotrexate.> > > > > > > > > > Anyone who has any 2 cents to put in, I'm listening...> > > > > > > > > > (adult onset RA) and Rob 18 Spondy> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____________________________________________________________________> > > ___> > > > > Email and AIM finally together. You've gotta check out > free > > > AOL > > > > > Mail! - http://mail.aol.com> > > > >> > > >> > > > > > > > >> >> > >

[Guest guest]

Hi Anita,

I would be interested in seeing the show. Even though I live in the Philly area, I didn't read through these messages in time to record the show. Please contact me at earlrc_2000@....

Thanks,

Rob

a

I am one of the patients on the TV show on channel 3 in the Philadelphia area. There were DVD's that I was sending to anyone who wanted one. I don't know if I have any good DVD's left. I have some DVD's that are missing parts of the show. I may have a DVD that is missing the part of the show that the patient that did not have Achalasia (she has gastroparesis) was on, but has me and the other patient that do have Achalasia. If you are interested in receiving a DVD, please let me know.Anita from Pa.

Don't let your dream ride pass you by. Make it a reality with Autos.

[Guest guest]

-

YOU ARE TOO AWESOME! Here you are getting ready for your own surgery

and thinking about how others are doing with theres.Thats a good

person! We need more good people like you in this world : )

HUgs to you- Tonia

>

> Since I haven't seen any posts about as surgery, I called the

> unit at the hospital, she is leaving ICU soon and will be on the

unit

> this afternoon - I will call her and let everyone know how she is

after

> I speak with her.

> Gotta go pack!

>

> - in NC

> 4 days...

>

[Guest guest]

Hi a's big sister,

Thank you for this update, it's so great to hear a is doing OK!

Please tell her I am thinking of her, keeping fingers crossed for a quick recovery!

Isabella

a

Hello all,Just a brief note, as I'm sure my baby sister will be posting soon! I returned from Pittsburgh Thursday evening, left little sister recovering speedily! We celebrated her big birthday Wed. with the help of "Mother Love", a loving lady on the 7D unit. She sang Happy Birthday and a Gospel which brought us all to tears. We are so thankful to all of you and your support and the wonderful people at UPMC. As of today, one week after surgery, Kristi has been released from the hospital and now to the Family Home facility there in Pittsburgh, with a possible return home this Thursday.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Didnt even see this post-

Yes ...Thanks Big sister for the update! So glad she is doing well.

Keep us updated.

Tonia

>

> Hi a's big sister,

>

> Thank you for this update, it's so great to hear a is doing

OK!

>

> Please tell her I am thinking of her, keeping fingers crossed for

a quick recovery!

>

> Isabella

>

>

> a

>

> Hello all,

>

> Just a brief note, as I'm sure my baby sister will be posting

soon! I

> returned from Pittsburgh Thursday evening, left little sister

> recovering speedily! We celebrated her big birthday Wed. with the

help

> of " Mother Love " , a loving lady on the 7D unit. She sang Happy

> Birthday and a Gospel which brought us all to tears. We are so

> thankful to all of you and your support and the wonderful people

at

> UPMC. As of today, one week after surgery, Kristi has been

released

> from the hospital and now to the Family Home facility there in

> Pittsburgh, with a possible return home this Thursday.

>

>

>

>

>

>

_____________________________________________________________________

_______________

> Be a better friend, newshound, and

> know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>