New to group

September 13, 2005

Phil, Welcome to the group! It is a wonderful feeling to connect

with so many who share this condition. Unfortunately as others have

mentioned, each of us experiences Achalasia differently, fortunately

we all have each other to work through our questions.

Here are my two cents:

I was diagnosed in 1980 at the age of 18. I have had a number of

successful pneumatic dilations and they all lasted for varying

amounts of time. The first two were only 3 months apart, then

another one in 2 years. At that point (1982) my GI said that he

wouldn't do any more due to risk of perforation and resultant need to

crack my chest to repair the E!!! So rather than find a new doctor,

I stopped treatment ...for 19 years!

Note: I do not recommend this approach!

I returned to a new doctor in 2001 and had 2 botox treatments, which

DID ease the constant pain, but didn't fix the nighttime cough. They

really just prolonged the inevidable - I am now scheduled for a lap

myotomy w/wrap on September 28th. My E is 5-6 times normal size

thanks to all those years of untreated stretching. I recommend

getting to a top-notch facility that treats a lot of Achalasia, if

you can. Cedars or, as in my case, The Cleveland Clinic.

Find a GI who is really interested in tracking the longterm health of

your E. Make sure that you are diligent in getting annual follow-up

care, including tests like a barium swallow and manometry so that

your doctors KNOW what is going on inside. A Endcospy may let them

SEE what your E looks like, but it doesn't tell them if the muscles

are functioning or how well your E is emptying. In my case, these

tests had not been done for years because I didn't go for treatment

and when they were done, they were not expertly read, leading to a

less effective treatment. Investigate the surgical option now and be

prepared to make that decision before your E has stopped functioning

(like my has).

And finally, don't stop asking questions in this forum because there

are a lot of very well educated and articulate Achalasians who don't

hesitate to help you deal with the facts, the myths and the emotions

of this condition.

in Michigan

>

> > Hello Everyone,

> >

> > I am new to the group and was very interested even to find a

group

> on

> > achalasia. I was diagnosed with achalasia 4 months ago, after 5

> years

> > of mis-diagnosis for acid reflux. I have started to read some of

> the

> > past posts and am finding the information very interesting but

had

> a

> > question for anyone who has had the balloon dilitation.

> >

> > I am 33 and had my first dilitation a few months ago and seem to

be

> > doing fine. Before it I couldnt even drink a glass of water

without

> > getting sick and now I can eat anything under the sun. Anyway, my

> > question is just wondering on average if people have had the

> balloon

> > dilitation of their sphincter muscle about how long it has lasted

> and

> > how many additional procedures you all have had. I know there is

> > surgery too to cut that muscle but I wasnt ready to get that

done.

> My

> > doctor is hopeful that it will last a year or so but you never

> know.

> >

> > Thanks for any comments.

> >

> > Phil

September 15, 2005

Hi Phil:

Ditto on the surgery as a first option -- really glad I did -- 5 1/2 weeks post

op

and having happy swallowing!

Peg

> Hello Everyone,

>

> I am new to the group and was very interested even to find a group on

> achalasia. I was diagnosed with achalasia 4 months ago, after 5 years

> of mis-diagnosis for acid reflux. I have started to read some of the

> past posts and am finding the information very interesting but had a

> question for anyone who has had the balloon dilitation.

>

> I am 33 and had my first dilitation a few months ago and seem to be

> doing fine. Before it I couldnt even drink a glass of water without

> getting sick and now I can eat anything under the sun. Anyway, my

> question is just wondering on average if people have had the balloon

> dilitation of their sphincter muscle about how long it has lasted and

> how many additional procedures you all have had. I know there is

> surgery too to cut that muscle but I wasnt ready to get that done. My

> doctor is hopeful that it will last a year or so but you never know.

>

> Thanks for any comments.

>

> Phil

>

September 15, 2005

: I suggest you look in the files or database for the article that

Cindi

put together on how friends and loved ones can support an A sufferer -- it will

help.

Peg

> ,

>

> Tell your husband he isn't alone at all. There are tons of us that have

> this disease. I went through the whole " Are you ok " thing for years!!! Yes

> it is aggravating!!! He should seek other therapy for this.that's the only

> way for most of us. Some can manage it without treatment but there aren't

> many!! I've had 5 dilations and 2 surgeries. My last surgery was in 2002,

> and I've done quite well since, but I also had an open surgery done. I've

> only recently started having problems again but nothing major!!

>

> _____

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of

> Sent: Monday, September 12, 2005 3:50 PM

> achalasia

> Subject: New to group

>

> Hi Everyone,

>

> I am the wife of an achalasia sufferer who was misdiagnosed for years.

> We were diagnosed for achalasia 2 years ago, and have had one balloon

> therapy. My husband is very frustrated with this illness. Mostly, he

> hates eating, unless it's an easy event. He gets very angry when he

> gets " stuck " , and everyone around asks " are you ok? " . We're at the

> point of him just dealing with it. I'd like him to go for more balloon

> therapy, or maybe, if I can talk him into it with research, surgery. I

> am so glad you all have made this group what it is today. I look

> forward to all that there is and will be to learn.

>

> Thanks-

>

September 15, 2005

Well said , Listen to her Phil!

> > > Hello Everyone,

> > >

> > > I am new to the group and was very interested even to find a

> group

> > on

> > > achalasia. I was diagnosed with achalasia 4 months ago, after 5

> > years

> > > of mis-diagnosis for acid reflux. I have started to read some of

> > the

> > > past posts and am finding the information very interesting but

> had

> > a

> > > question for anyone who has had the balloon dilitation.

> > >

> > > I am 33 and had my first dilitation a few months ago and seem to

> be

> > > doing fine. Before it I couldnt even drink a glass of water

> without

> > > getting sick and now I can eat anything under the sun. Anyway, my

> > > question is just wondering on average if people have had the

> > balloon

> > > dilitation of their sphincter muscle about how long it has lasted

> > and

> > > how many additional procedures you all have had. I know there is

> > > surgery too to cut that muscle but I wasnt ready to get that

> done.

> > My

> > > doctor is hopeful that it will last a year or so but you never

> > know.

> > >

> > > Thanks for any comments.

> > >

> > > Phil

October 5, 2005

Welcome - Dr Neal and his group ar great.

Glad you're here! The more you know about your band and the ways to

keep it safe and healthy, the better you're likely to do. Learn as

much as you can, and ask any questions that arise.

It's pretty normal to gain a bit of weight back before a good fill,

becuase what you lost was from real calorie deficiency. It often

takes more than one to get to a good level. Do the best you can til

then. This period can be frustrating, for sure! But you're off to a

great start. Sandy R

> Hi there everyone! Just joined this group. I got banded three

weeks

> today. I am thrilled with my progress and how good I feel. I lost

7

> pounds in the two week pre-op diet and 17 pounds during the last

three

> weeks. Tomorrow I move up to pureed foods. My doctor's office

gave

> me a great little cookbook and I picked out some meat and veggie

> dishes to make and then puree. I hope I can find the willpower to

> control my portions until I get my first fill on the 25th. The

liquid

> foods were pretty unappealing to me so it was easy to lose the

pounds

> but that won't be the case with the pureed foods.

>

> Anyway, this looks like a good group to be in. I've read many of

the

> posts and can tell I can learn a lot from everyone here. Thanks in

> advance!

>

> Dr. Neal 09/14/05

> 215/191/120

December 7, 2005

Congrats on your decision , soon you will be on the loosing side, I hope I did not say anything to scare anyone away, I do not regret my band one bit, I love my band, I just needed a wakeup call to be nicer to my band and I got one. SO good luck, what an excellent xmas present to yourself, you will have no regrets.

Tracie Bartek - Aledo, Texas Dr. Aceves Lap Band Doll - (one of many)248/200/150DOB - 6/24/05

New to Group

I'm new to the group and I'm schedulded on 12/15 for my surgery and I've been paying close attention to everything that has been posted as well. I don't think that the message was conveyed correctly about the slipage. It scared me as well because I'm going against my family and friends and I'm doing what I feel is needed to live. I appreciate all of you'll that have tried to clarify what was meant.

Vinson

December 16, 2005

Wow ! I'm so glad you found CI Hear. I can't imagine being the

parent of a child of 11 who is now completely without hearing. I could

see little glimpses of your broken heart in your post.

I am so excited though about your son getting a cochlear implant! The

young seem to do so well, and I'm learning that it seems to make a big

difference to get the CI as soon as possible after the hearing is

gone. I think your son will be a different little boy very, very soon.

I'm also glad you found CI Hear, because there are many parents with

children who have implants on here. I KNOW they will be an

encouragment to you and can honestly tell you that they know exactly

what you are going through.

If you have questions, here's a great place to begin asking.

Welcome, !

P

Frederick, MD

Left CI implant: 4/6/05

Activation date: 5/13/05

Right BTE HA: 8/2000

December 16, 2005

,

Hang in there! Eleven is hard enough for any kid, much less one who has

little hearing and then that is gone too. Although my daughter is not

yet three, I know how it feels to learn that your child cannot hear you.

It is devastating. But by investigating the possibility of a CI, you

have already taken steps toward a solution. Winter is always hard

because it is so cold and dreary and adding devastating news to that can

make anyone depressed. But hopefully, knowing that you are working on a

viable solution will help counter act your feelings of depression and

empower you instead. Especially since your son also wants it. Once you

have made the decision to move forward with this, you will feel even

better. Discuss everything with your son and let him know that this is

only temporary. I am new to the CI as my daughter has only been

activated for three weeks, so I don't have a lot of hard information to

share, however others here can help with any questions you have. I do

know, though, that once you start the process, just having a plan will

do wonders for you and your son's morale. So hang in there. It's only

a matter of time until you and your son will be on a wonderful new path!

Good luck and keep us posted!

_____________________

A. Weinzapfel

PURCHASING DEPARTMENT

UNIVERSITY OF SOUTHERN INDIANA

812.464.1848

JWEINZAP@...

________________________________

From: [mailto: ] On Behalf

Of robertbudder

Sent: Friday, December 16, 2005 2:42 PM

Subject: new to group

Hello group,

i am robert and i live in new jersey. My son is 11 ans was born

with a severe to profound hearing loss. We got him hearing aids as a

baby and he was put in to total communication programs. He has

learned speech and has done ok in a deaf program that is contained in

a mainstreem school system. About 2 years ago he lost whatever

hearing he had in his left ear. He got by wearing his one hearing aid

and was doing ok. Just last week he suddenly lost all the hearing in

his right ear and we are devastated. He just started to cry...and he

suddenly was immersed in total silence. I have been so depressed and

find myself crying in my car every day as i drive to and from work.

Last week, i met with a cochlear surgeon at the University Hospital

in Newark. I met the audiologist there as well..we did testing and

they said they would love to implant him. I went home and have been

reading non-stop about everything i can lay my eyes on. I now have an

appointment with childrens hospital in philadelphia to see what they

have to offer. This appt is on Dec.30. Im trying to do all this and

battle this feeling of depression i feel building inside me. He keeps

telling me he hates his life now. He tells me he cant even hear his

voice anymore. He used to have such a lovely voice...but his words

are becoming less and less clear..its almost like he is slipping away

through my fingers. I explained the cochlear to him and he wants it.

So this is my story, i found this group just a few minutes ago, i

turn to all the members for support, hope, comfort. Every time i see

my son i feel his pain, i pain every second of every day, maybe i am

weak..i dont know...but i want to do everything possible to help

him.......anyway..thanks for letting me join.

robert

December 16, 2005

Hi !

Welcome to CI Hear! What a scary experience, for your son to lose

all his hearing. I am sure you are all overwhelmed with the total

loss and what is to come next. I know I was when it happened to me

in 2002 after 39 years of muffleness. It was a shock to wake up and

find out that my trusty hearing aid was no longer going to help me

hear muffled sounds. I was put on a wait and see what happens but

when my hearing didn't bounce back, I became a CI candidate in

October 2002, had the operation, at Temple Univ, in Philly, in

November 2002 and was hooked up 2January2003. It was awesome to

hearenvironmental sounds and my family's voices on hook up day!

They sounded strange at first but they weren't muffled any longer.

I couldn't understand them without lipreading but that was okay by me

because I never had speech distinction my whole life. Then 3months

after hook up, I had a mapping based on my youngest sister's voice

because I couldn't stand her voice and with that new program, I

discovered speech discrimination for the first time in my life! At

the age of 40, and for the first time ever, I responded to my name

being called several feet behind me. That was sooo exciting and

still very exciting when I hear things behind me and know what it is!

I am in awe with what my CI has given ime in 35 months of being

hooked up. It's the best hearing I have ever had in my whole

life! Please let your son know there is hope out there. I'm not

guaranteeing anything. No one can give you a guarantee but there is

hope. It most likely won't be instant hearing once he is hooked up

but with time and more mappings of the processor, it does get better

and better. It still is improving for me. I wish you and your

family and especially your son the very best as he takes the journey

out of silence. This will be exciting to follow along. Keep your

questions and concerns coming.

Patti

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

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

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

December 17, 2005

Hi, ! We were in Ocean County, New Jersey, when my son was

three and lost his " residual hearing " , and HAs didn't work for him

either. Even at three he was very upset, depressed maybe. He was

implanted at CHOP, too. We've travelled a bit since then (my

hubby is in the army), met some other great CI teams, but those

folks at CHOP are the best! You are in excellent hands with them.

We're back here with them now (living on the PA side), and I'm

thrilled that most of the same folks are still there.

When was first diagnosed deaf our world just stopped. The

bottom dropped out. Your post brought back a lot of feelings for me,

too. As a parent, nobody could have prepared me for the major ups

and downs we go through with our kids. Even though we suspected and

found out Tommy (son #3) was deaf/hoh at birth, it was still very

hard to comprehend.

Hang in there, , you're in a great place for support on this

forum and at your CI center. Your welcome to read about our CI

journey at: www.bionicboys.blogspot.com, I tried to start

chronologically in the June archives. There are also more stories at

www..com, and good information at www.listen-up.org. Hope this

helps a little.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bionicboys.blogspot.com

BEA Volunteer

December 17, 2005

Welcome to the group

My name is ; I was once your 11 year old but didn't get implanted

until this year and I'm now 48. I remember my parents divorcing when I

was 10, and thought it was because of my deafness. I prayed for God to

make me hearing to make mom and dad happier, so I understand where

your son is coming from, even though it's for a different reason, it

still boils down to loss. Back when I was 11 there wasn't a solution

like the CI. But with today's technology....it is just awesome!

I grew up in the hearing world, discovered the deaf world in my early

20's and what a relief it was to finally be able to learn sign

language and feel a sense of belonging, somewhere. When Meniere's

Disease destroyed my remaining hearing this year, there I was, totally

deaf. Boy was I hurting because I did get good sound awareness with my

hearing aid. BUT!!!! Nothing like what I have now with my CI. It has

brought me so much happiness

You are in the right place and doing the right things. I'm so glad

your son was able to speak out for his own needs and even more so that

he has the parents to support him!

Best wishes to you all and stick around. This is a great place to be!

Freedom 9/21/05 HOOKED!!

>

> Hello group,

> i am robert and i live in new jersey. My son is 11 ans was born

> with a severe to profound hearing loss. We got him hearing aids as a

> baby and he was put in to total communication programs. He has

> learned speech and has done ok in a deaf program that is contained in

> a mainstreem school system. About 2 years ago he lost whatever

> hearing he had in his left ear. He got by wearing his one hearing aid

> and was doing ok. Just last week he suddenly lost all the hearing in

> his right ear and we are devastated. He just started to cry...and he

> suddenly was immersed in total silence. I have been so depressed and

> find myself crying in my car every day as i drive to and from work.

> Last week, i met with a cochlear surgeon at the University Hospital

> in Newark. I met the audiologist there as well..we did testing and

> they said they would love to implant him. I went home and have been

> reading non-stop about everything i can lay my eyes on. I now have an

> appointment with childrens hospital in philadelphia to see what they

> have to offer. This appt is on Dec.30. Im trying to do all this and

> battle this feeling of depression i feel building inside me. He keeps

> telling me he hates his life now. He tells me he cant even hear his

> voice anymore. He used to have such a lovely voice...but his words

> are becoming less and less clear..its almost like he is slipping away

> through my fingers. I explained the cochlear to him and he wants it.

> So this is my story, i found this group just a few minutes ago, i

> turn to all the members for support, hope, comfort. Every time i see

> my son i feel his pain, i pain every second of every day, maybe i am

> weak..i dont know...but i want to do everything possible to help

> him.......anyway..thanks for letting me join.

> robert

>

December 18, 2005

Welcome ,

As I sit and read your post, I really feel your pain(I'm weeping for

you). Don't worry, it really will get better. I am a parent of a 2

1/2 yr old born with bilateral SNHL. She was implanted with a

Nucleus24 on 12/28/04, turned on 02/8/05.

At this point she has acquired a few words but not many. However,

she is very aware of environmental sounds and will turn when you

call her name. I'm not sure how much she understands. This may be

due to her not wearing her magnet all day. We are finally getting

to the point that she will keep it on 90% of the day. Although, I'm

not sure that she sees the benefit of wearing the implant. Anyway,

we're progressing.

To your " Sun " : in a 3 month span (maybe a little longer) i.e. eval,

surgery, and turn on, he will be back to the hearing world.

So, I know the pain is there but it will soon turn to happiness.

Mom to:

hearing, 9yrs (my " Sun " )

Ari, Nucleus24, 2.5yrs (my beautiful daughter)

Arynn, hearing, 8mos (the most adorable post-deployment baby girl)

December 18, 2005

Hi ,

Welcome to the group. As another poster said, I am also feeling your pain

as I read your post. I can't wait to see your post after your son is

implanted, as the sadness and depression you are feeling now, turns to joy.

As the face page of this group says, the CI really is a miracle of hearing.

I know my perspective is different, because I'm an adult, not a child, or a

parent of a CI child. But like your son, I also wasn't totally deaf for

long, before I got my CI. Your son has a real good memory of how things

sound. Kids adapt even more quickly than adults to new things. He will be

greedy to hear everything again, as he still remembers, and misses it, and

he will do just fine. I started losing my hearing at age 38. It went

throught the usual progression, and I wore aids for several years until they

were no more benefit to me. Finally I got the CI (I'm 51 now) and my brain

adjusted quickly and easily and just wants more and more. My speech, like

your son's, had started to deteriorate, I was dropping consonants and my

speech had a dull, slurred sound, I was told. I just attribute it to not

being able to hear your own voice. After the CI, my speech improved

immediately, simply because I could hear my voice again, and didn't drop the

consonants anymore because I could hear them. My volume went down too, now

I'm 'soft-spoken', lol.

I'm rooting for your family and I do so hope you'll keep us posted as your

son moves through his CI journey. Joining a list like this one is a great

step, you will meet other parents here and be encouraged.

Binns

----Original Message Follows----

From: " robertbudder " <robertnj63@...>

Reply-

Subject: new to group

Date: Fri, 16 Dec 2005 20:42:28 -0000