Zlatko

[Guest guest]

Ray,

It's great to read that you can cope without surgery or any other treatment. If

that works for you, that's simply great.

Nobody will get mad at you for sharing your experiences. It's another experience

and people might learn from it, people might want to try it themselves.

Must admit though, that I wouldn't want to try, I want a better quality of life,

living on liquids year in year out is no quality of life for me. I can tell you

plenty of reasons why that is for me. Everybody is different. What works for

one, needn't work for the other. Every achalasian is a specific case that needs

different treatments and has different expectations, wishes and hopes. Age for

some might play a huge role as well, I guess.

What I don't agree is that you mention the surgery destroying the LES. The LES

is already broke, it won't be broken by treatment.

Isabella

________________________________

From: me_rayme <ray_me_99@...>

achalasia

Sent: Friday, November 14, 2008 9:19:39 PM

Subject: Re: Zlatko

Hi --Dont get mad at me!

I fully support the holding off on an operation, especially if

young. When you read all the disasters on this site it stopped me

from going back to a GI after he recommended an operation with Dr

Demester at USC.

Yes I have had Many bad days in the last three years, started at age

75, was diagnosed with a manomerty test last March as classical

achalasia. Took four GI's to finally find my problem, after I had two

16mm dialations. BUT then in Jan of this year found a cure with Coke

the CO2 portion. I had lost about 35 lbs but now steady at 138 lbs.

My solution is 2-3 Ensure's plus a day, 2-3 cokes, potato soup with

lots of milk, pasta at lunch with olive oil and pesto, choclate, milk

and juices.

Since I had a bypass 11 years ago, probally can not be done with lap,

so I am TOO sucking old for an operation.

Went to my Cardiologst yesterday and he wants to run a nuclear

treadmill test that takes 4 hours to see if I could stand an

operation.

BELIEVE me anybody new on this site that has not had the LES

destroyed, should try a liguid diet, get on to the Coke routine as

fully believes it helps, it is in the medical books.

Recently I heard some one talking about relaxation methods as a way

to relax the LES. Now I sit in a patio chair outside that you can

lean back about 45 degrees, after I have a byte of pasta , then put

my two hands on the top back of my head, breath deeply several times.

It seems to work for me, try it. After this with a can of Coke the

pasta goes down. Yes I also regurgitate at times!!!!!!!

Changing my name to rayme, too many ray's.

rayme CA OC 78

>

> Maybe your A is manageable with your liquids and your lifestyle

changes

> but please understand that for many, many of us - that is simply

not

> the case. As a mom and as a person who has had A for over 25 years -

> I'm with Tonia - I would simply NOT sit back and watch my child

suffer

> and lose weight and jeopardize their health (you are NOT going to

> convince me that a long term liquid diet does not have consequences

on

> the health of a child) waiting for something that MIGHT be

available in

> 5 years and honestly, I have not seen or read anything anywhere

that

> leads me to believe that stem cell research is going to be anywhere

> close to 'fixing' us in even the next 10 years. There is still too

much

> not known about what causes A. As notan says, there is nothing to

say

> that even if you could make a new E and fix our nerves - that's not

to

> say that whatever causes A would not just destroy the new nerves

and

> new E all over again.

> Surgery is NOT a cure and we are all very well aware of that but I

had

> surgery in 1989 at the age of 20 and for 18 years, I could eat 90%

of

> what I wanted 90% of the time. It wasn't perfect, but I had a life

and

> A did not control it.

> There are just some of us here ('s son for instance) that

cannot

> get ANYTHING down, how can you even suggest that someone with a

> teenager on a feeding tube!! wait for 5 years because MAYBE

something

> better will come along.

> You have yet to post ANYTHING with real proof or any kind of

studies

> that prove what you're saying. It is all conjecture on your part

and

> the part of your family and friends.

> In the meantime, I do hope that you are able to continue to do what

you

> feel is best for you and please keep us posted on the stem cell

> research - I hope to God that I'm wrong and something real does

come

> along and comes along soon. In the meantime - I'm going to go eat

real

> food and not look back with any regrets over the choices I've made.

>

> All the best to you.

> Happy Swallowing!!

> - in NC

>

[Guest guest]

Dear Ray,

You know, you have every right for you to hold out on surgery, and I

see the clarity in your decision, but I couldn't disagree more with

your advice to a young person. I'm not sure about all the disasters

you are talking about w/ surgeries???? There are a few that needed

more treatment. I think the disasters of waiting, being misdiagnosed

for years, even decades greatly outweighs the risks even of a low-

experienced surgeon.

I've been on this board for WAY TOO long and only a few of the

successful ones stay around, even the ones with kids, Tonia stays,

Tia's Mom, and Carolyn, Cameron's Mom, come to mind. All their kids

are doing well now. On this board are many people who did not have

the advantage of knowledgeable treatment in their youth and now have

greatly dialated esophagus(es?) sigmoid and other problems, that DO

lead to a higher chance of complications. Most successful patients

leave and get on with their lives.

Chavez the father of a now 15 year old is more than willing to

talk and email anyone, especially a parent, about the pros and cons

of treatment. If anyone would like to talk to him, search the old

posts or contact me.

Again, I do totally understand no treatment for you, but look at a

kid and tell them to live on a liquid diet the rest of their lives.

As we age, we don't taste as well, maybe you have forgotten the taste

of a pizza. But imagine the social implications of a youngster on a

liquid diet???

Sandy

> >

> > Maybe your A is manageable with your liquids and your lifestyle

> changes

> > but please understand that for many, many of us - that is simply

> not

> > the case. As a mom and as a person who has had A for over 25

years -

>

> > I'm with Tonia - I would simply NOT sit back and watch my child

> suffer

> > and lose weight and jeopardize their health (you are NOT going to

> > convince me that a long term liquid diet does not have

consequences

> on

> > the health of a child) waiting for something that MIGHT be

> available in

> > 5 years and honestly, I have not seen or read anything anywhere

> that

> > leads me to believe that stem cell research is going to be

anywhere

> > close to 'fixing' us in even the next 10 years. There is still

too

> much

> > not known about what causes A. As notan says, there is nothing to

> say

> > that even if you could make a new E and fix our nerves - that's

not

> to

> > say that whatever causes A would not just destroy the new nerves

> and

> > new E all over again.

> > Surgery is NOT a cure and we are all very well aware of that but

I

> had

> > surgery in 1989 at the age of 20 and for 18 years, I could eat

90%

> of

> > what I wanted 90% of the time. It wasn't perfect, but I had a

life

> and

> > A did not control it.

> > There are just some of us here ('s son for instance) that

> cannot

> > get ANYTHING down, how can you even suggest that someone with a

> > teenager on a feeding tube!! wait for 5 years because MAYBE

> something

> > better will come along.

> > You have yet to post ANYTHING with real proof or any kind of

> studies

> > that prove what you're saying. It is all conjecture on your part

> and

> > the part of your family and friends.

> > In the meantime, I do hope that you are able to continue to do

what

> you

> > feel is best for you and please keep us posted on the stem cell

> > research - I hope to God that I'm wrong and something real does

> come

> > along and comes along soon. In the meantime - I'm going to go eat

> real

> > food and not look back with any regrets over the choices I've

made.

> >

> > All the best to you.

> > Happy Swallowing!!

> > - in NC

> >

>

[Guest guest]

" Stem Cells for Dummies " Just who here would you qualify as a dummy??

all that wonderful education and intellect and yet somehow you managed

to miss the basic lessons on Manners, Courtesy and Respect.

I would take 100 people with manners and IQ's of 100 over 1 arrogant

and rude SOB any day of the week.

Let me see if I can phrase this intelligently enough for you...

PISS OFF!!

As we teach our young children at my house, unless you have something

nice and/or supportive to say - DON'T SAY ANYTHING!!

I'm done with you.

- in NC

[Guest guest]

Well said ! SURELY HE DOES NOT ASSUME WE ARE THE DUMMIES??

CAN I SAY SPELL CHECK ANY LOUDER???????

Tonia

>

> " Stem Cells for Dummies " Just who here would you qualify as a dummy??

>

> all that wonderful education and intellect and yet somehow you managed

> to miss the basic lessons on Manners, Courtesy and Respect.

> I would take 100 people with manners and IQ's of 100 over 1 arrogant

> and rude SOB any day of the week.

> Let me see if I can phrase this intelligently enough for you...

> PISS OFF!!

> As we teach our young children at my house, unless you have something

> nice and/or supportive to say - DON'T SAY ANYTHING!!

>

> I'm done with you.

>

> - in NC

>

[Guest guest]

Thank You !

I tried very hard to stay out of this, but when I read that we are all " dummies "

and Notan needs to carefully explain everything to us, I was very offended. I

read Notan's posts because they are intelligent and informative, not because I

am too stupid to do the research on my own. I have never felt that Notan has

ever made any of us feel " dumb " . I appreciate each and every post until now.

Please leave this group,

achalasia@...: mcnairmichelle@...: Wed, 19 Nov 2008

14:04:53 +0000Subject: Zlatko

" Stem Cells for Dummies " Just who here would you qualify as a dummy??all that

wonderful education and intellect and yet somehow you managed to miss the basic

lessons on Manners, Courtesy and Respect.I would take 100 people with manners

and IQ's of 100 over 1 arrogant and rude SOB any day of the week.Let me see if I

can phrase this intelligently enough for you...PISS OFF!! As we teach our young

children at my house, unless you have something nice and/or supportive to say -

DON'T SAY ANYTHING!!I'm done with you.- in NC

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