Re: A question of control

[Guest guest]

I have yet to find anyone in the Seattle area who can give me

professional and effective help. I'm scheduled to see a surgeon named

Dr. Aye at Swedish Medical Center on April 1st(no fooling). He

is at what is the top surgery center for the Seattle area. I will

have to see what I think of him. So far all of the doctors and

people doing the tests have let me know emphatically that I have no

choice but surgery. That feels like a loss of control. You indicate

that it would be taking control of my well-being.....and that you

yourself felt you were an idiot for not initiating the surgery

sooner. I do not know what time will tell for me. For the time being

I am practicing the alkaline diet and reading the most fine-tuned

approaches to it that I can find. That approach has me at least

feeling better with far less symptoms. In the meantime I'm looking

for more information. I am interested in talking to the doctor at the

University of Texas who is active in doing research. Maybe there is

something there...maybe not. I will let you know. Has anyone else on

here talked to her?

Jan

> > > >

> > > > I do feel bad. I keep reaching out only to feel slapped down

for

> > > > trying. My significant other was there with me during the

> > > > endoscopic...and afterwards we both heard the word achalasia

> for

> > the

> > > > first time. We had never heard of it. We both dove into

> > researching

> > > > this and I went on a 10 day fast with him feeding me nothing

but

> > > > spirulina and tea. I felt a lot better. I felt a lot better

when

> > > > I " went back to my college days roots " and gravitated towards

> > > > vegetarian foods...things I actually enjoy. At this point I

> know

> > the

> > > > reality is that I am scared. If you have real hard & fast

data

> > about

> > > > alkaline foods then by all means share it if you will. I am

all

> > > > ears. The hardest part for me is not so much sticking to what

> > feels

> > > > to be more alkaline foods....as it is giving up the things I

> know

> > are

> > > > bad for me....like coffee.....so then I guilt-trip

> myself....and

> > when

> > > > I venture out into this uncharted world called achalasia... I

> find

> > > > very little is known... I feel alone. I don't want to think

I'm

> > > > indoctrinated about diet any more than I want to be

> indoctrinated

> > > > about surgery. Yesterday as I went through the posts on this

> site

> > I

> > > > came away thinking that there was no hope....not surgery or

> diet

> > was

> > > > going to be my salvation. But I am not a person who gives up

> > > > easily. I will keep trying and pursuing what feels like the

> right

> > > > things. I like the idea of the HARP group...Humans for

Achalasia

> > > > Research Project.... but again...I know that the only ones

who

> > ever

> > > > spend money on research are pharmeceutical companies who

stand

> to

> > > > gain from it....and if there aren't enough of us.... that

> leaves

> > the

> > > > government...sigh. Many things have been accomplished by

> > grassroots

> > > > attempts like HARP. So once again...don't give up. I will

> continue

> > > > to read the books...trying the recipes and enjoy them for

what

> > they

> > > > are.... and keep going until something else surprises me.

> > > > Jan

> > > >

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Sent from & #45; a smarter inbox.

>

[Guest guest]

Hi Jan,

There appears to be a lot of "semantics" going around in your posts and I apologize in advance if I am missing your point. You said in your most recent post:

"I have yet to find anyone in the Seattle area who can give me professional and effective help."

Knowing your aversion to surgery, which I respect, it sounds to me that you are saying that you are unable to find anyone who can give you the "professional and effective help" that you want to hear them tell you. One of the best surgeons in the U.S., Dr. Pellegrini, is located at the University of Washington Medical Center in Seattle. But that really has no bearing since you do not want to have the surgery, not now, hopefully not ever.

If you continue to have consultations with surgeons who have gone through conventional training, you will probably continue to get the same answers. Its not just that the old saying, "Surgeons cut" so that is the answer you are going to get from them, but its also because at this point in time, that is the best solution for this disease that is generally accepted.

As far as your issue of "control," while you have not heard the answers you want to hear yet, you haven't given up any control. You still control what you are doing. You still have control in that you can decide for yourself to either have surgery or not have surgery. It is not an idle comment I am making to you. I face that decision everyday myself. Members of this Board from the summer of 2006 know that I was told by a number of significant gastroenterologists and surgeons that I MUST have an esophagectomy. I did not like that answer either. I continued consulting with doctors until I received an opinion (from a surgeon) that made more sense to me. Only time will tell if I made the right choice.

I never gave up "control." If you decide that someday alternative methods, or whatever other course of action you have chosen, has not worked and you must have the surgery, it will be your choice to do so. Two women I greatly respect on this Board, and , were recommended to have esophagectomies. After exploring all available options, and knowing that they could probably wait a number of years more, they opted to have it on their own terms, not when their condition got so bad that they would not have been a good patient going in, but as otherwise healthy people, who can now go forward and live the rest of their lives with this behind them. It was their choice, they controlled their own destinies given the hand they were dealt.

I hope you can find the answer you are looking for, and never give up.

Re: A question of control

I have yet to find anyone in the Seattle area who can give me professional and effective help. I'm scheduled to see a surgeon named Dr. Aye at Swedish Medical Center on April 1st(no fooling). He is at what is the top surgery center for the Seattle area. I will have to see what I think of him. So far all of the doctors and people doing the tests have let me know emphatically that I have no choice but surgery. That feels like a loss of control. You indicate that it would be taking control of my well-being.. ...and that you yourself felt you were an idiot for not initiating the surgery sooner. I do not know what time will tell for me. For the time being I am practicing the alkaline diet and reading the most fine-tuned approaches to it that I can find. That approach has me at least feeling better with far less symptoms. In the meantime I'm looking for more information. I am interested in talking to

the doctor at the University of Texas who is active in doing research. Maybe there is something there...maybe not. I will let you know. Has anyone else on here talked to her?Jan> > > >> > > > I do feel bad. I keep reaching out only to feel slapped down for> > > > trying. My significant other was there with me during the> > > > endoscopic.. .and afterwards we both heard the word achalasia > for > > the> > > > first time. We had never heard of it. We both dove into > > researching> > > > this and I went on a 10 day fast with him feeding me nothing but> > > > spirulina and tea. I felt a lot better. I felt a lot better when> > > > I "went back to my college days

roots" and gravitated towards> > > > vegetarian foods...things I actually enjoy. At this point I > know > > the> > > > reality is that I am scared. If you have real hard & fast data > > about> > > > alkaline foods then by all means share it if you will. I am all> > > > ears. The hardest part for me is not so much sticking to what > > feels> > > > to be more alkaline foods....as it is giving up the things I > know > > are> > > > bad for me....like coffee.....so then I guilt-trip > myself....and > > when> > > > I venture out into this uncharted world called achalasia... I > find> > > > very little is known... I feel alone. I don't want to think I'm> > > > indoctrinated about diet any more than I want to be >

indoctrinated> > > > about surgery. Yesterday as I went through the posts on this > site > > I> > > > came away thinking that there was no hope....not surgery or > diet > > was> > > > going to be my salvation. But I am not a person who gives up> > > > easily. I will keep trying and pursuing what feels like the > right> > > > things. I like the idea of the HARP group...Humans for Achalasia> > > > Research Project.... but again...I know that the only ones who > > ever> > > > spend money on research are pharmeceutical companies who stand > to> > > > gain from it....and if there aren't enough of us.... that > leaves > > the> > > > government.. .sigh. Many things have been accomplished by > > grassroots> > >

> attempts like HARP. So once again...don' t give up. I will > continue> > > > to read the books...trying the recipes and enjoy them for what > > they> > > > are.... and keep going until something else surprises me.> > > > Jan> > > >> > >> >> > > > > > > ------------ --------- --------- ---> Sent from & #45; a smarter inbox.>

Never miss a thing. Make your homepage.

[Guest guest]

I was referred to Dr. Aye at Swedish Medical Center. No one

mentioned Dr. Pellegrini. I will look into his background. As for

control...I simply want to know more before I make any decision. I

believe I am still in shock and do not feel I can make an informed

decision yet. I know you all mean well and believe that surgery is

the best thing available at this point. I have read a number of

posts on here stating that the surgery had to be redone for them and

that they also had bad reflux and heartburn that they now had to

control....so " putting it behind them " somehow didn't seem apparent

to me. I cannot say that I am totally averse to surgery....I simply

need to know more than I do now. All I have is the people I'm being

referred to (probably because of my insurance). I figure I will

learn from them whatever it is they have to offer. They are in the

business of making money from doing surgery. I would like to talk to

people who are actively researching the disorder. I wrote a letter to

one of them and posted it on here a few minutes ago to see if anyone

else wanted to add and/or subtract.... it seemed like a good idea.

Time will tell.

Jan

> > > > >

> > > > > I do feel bad. I keep reaching out only to feel slapped

down

> for

> > > > > trying. My significant other was there with me during the

> > > > > endoscopic.. .and afterwards we both heard the word

achalasia

> > for

> > > the

> > > > > first time. We had never heard of it. We both dove into

> > > researching

> > > > > this and I went on a 10 day fast with him feeding me

nothing

> but

> > > > > spirulina and tea. I felt a lot better. I felt a lot better

> when

> > > > > I " went back to my college days roots " and gravitated

towards

> > > > > vegetarian foods...things I actually enjoy. At this point I

> > know

> > > the

> > > > > reality is that I am scared. If you have real hard & fast

> data

> > > about

> > > > > alkaline foods then by all means share it if you will. I am

> all

> > > > > ears. The hardest part for me is not so much sticking to

what

> > > feels

> > > > > to be more alkaline foods....as it is giving up the things

I

> > know

> > > are

> > > > > bad for me....like coffee.....so then I guilt-trip

> > myself....and

> > > when

> > > > > I venture out into this uncharted world called achalasia...

I

> > find

> > > > > very little is known... I feel alone. I don't want to think

> I'm

> > > > > indoctrinated about diet any more than I want to be

> > indoctrinated

> > > > > about surgery. Yesterday as I went through the posts on

this

> > site

> > > I

> > > > > came away thinking that there was no hope....not surgery or

> > diet

> > > was

> > > > > going to be my salvation. But I am not a person who gives up

> > > > > easily. I will keep trying and pursuing what feels like the

> > right

> > > > > things. I like the idea of the HARP group...Humans for

> Achalasia

> > > > > Research Project.... but again...I know that the only ones

> who

> > > ever

> > > > > spend money on research are pharmeceutical companies who

> stand

> > to

> > > > > gain from it....and if there aren't enough of us.... that

> > leaves

> > > the

> > > > > government.. .sigh. Many things have been accomplished by

> > > grassroots

> > > > > attempts like HARP. So once again...don' t give up. I will

> > continue

> > > > > to read the books...trying the recipes and enjoy them for

> what

> > > they

> > > > > are.... and keep going until something else surprises me.

> > > > > Jan

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > ------------ --------- --------- ---

> > Sent from & #45; a smarter inbox.

> >

>

>

>

>

>

>

______________________________________________________________________

______________

> Looking for last minute shopping deals?

> Find them fast with Search.

http://tools.search./newsearch/category.php?category=shopping

>

[Guest guest]

You are being pro-active questioning the various alternatives a person who has this condition must eventually choose from, and if there is a possiblity that there might be something else on the horizon. While surgery generally seems to be the best alternative, you have read enough "evidence" on this Board that once having had the surgery one is not always "home free."

Unfortunately, the perfect answer, where you go from having it to not having it, may not exist yet. If you can buy time without doing irreversible damage to yourself, I don't think anyone could fault you. As you said, "Time will tell."

Your letter is a good idea.

Re: A question of control

I was referred to Dr. Aye at Swedish Medical Center. No one mentioned Dr. Pellegrini. I will look into his background. As for control...I simply want to know more before I make any decision. I believe I am still in shock and do not feel I can make an informed decision yet. I know you all mean well and believe that surgery is the best thing available at this point. I have read a number of posts on here stating that the surgery had to be redone for them and that they also had bad reflux and heartburn that they now had to control....so "putting it behind them" somehow didn't seem apparent to me. I cannot say that I am totally averse to surgery....I simply need to know more than I do now. All I have is the people I'm being referred to (probably because of my insurance). I figure I will learn from them whatever it is they have to offer. They are in the business of making money from doing surgery. I

would like to talk to people who are actively researching the disorder. I wrote a letter to one of them and posted it on here a few minutes ago to see if anyone else wanted to add and/or subtract.... it seemed like a good idea. Time will tell.Jan> > > > >> > > > > I do feel bad. I keep reaching out only to feel slapped down > for> > > > > trying. My significant other was there with me during the> > > >

> endoscopic.. .and afterwards we both heard the word achalasia > > for > > > the> > > > > first time. We had never heard of it. We both dove into > > > researching> > > > > this and I went on a 10 day fast with him feeding me nothing > but> > > > > spirulina and tea. I felt a lot better. I felt a lot better > when> > > > > I "went back to my college days roots" and gravitated towards> > > > > vegetarian foods...things I actually enjoy. At this point I > > know > > > the> > > > > reality is that I am scared. If you have real hard & fast > data > > > about> > > > > alkaline foods then by all means share it if you will. I am > all> > > > > ears. The hardest part for me is not so much

sticking to what > > > feels> > > > > to be more alkaline foods....as it is giving up the things I > > know > > > are> > > > > bad for me....like coffee.....so then I guilt-trip > > myself....and > > > when> > > > > I venture out into this uncharted world called achalasia... I > > find> > > > > very little is known... I feel alone. I don't want to think > I'm> > > > > indoctrinated about diet any more than I want to be > > indoctrinated> > > > > about surgery. Yesterday as I went through the posts on this > > site > > > I> > > > > came away thinking that there was no hope....not surgery or > > diet > > > was> > > > > going to be my salvation. But I am not a

person who gives up> > > > > easily. I will keep trying and pursuing what feels like the > > right> > > > > things. I like the idea of the HARP group...Humans for > Achalasia> > > > > Research Project.... but again...I know that the only ones > who > > > ever> > > > > spend money on research are pharmeceutical companies who > stand > > to> > > > > gain from it....and if there aren't enough of us.... that > > leaves > > > the> > > > > government.. .sigh. Many things have been accomplished by > > > grassroots> > > > > attempts like HARP. So once again...don' t give up. I will > > continue> > > > > to read the books...trying the recipes and enjoy them for > what > > > they> >

> > > are.... and keep going until something else surprises me.> > > > > Jan> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- ---> > Sent from & #45; a smarter inbox.> >> > > > > > ____________ _________ _________ _________ _________ _________ _____________ __> Looking for last minute shopping deals? > Find them fast with Search. http://tools. search.. com/newsearch/ category. php?category= shopping>

Never miss a thing. Make your homepage.

[Guest guest]

wipperwillow wrote:

> ... I know you all mean well and believe that surgery is

> the best thing available at this point. ...

Actually, I tell people there is no right answer, just options with

different costs, risks and benefits. I have no way to know what the best

answer is for you. I like to discuss the options and their benefits but

also their costs and risks. Surgery statistically offers very good

benefits to many, but not all. It also has a very high cost and some

risks that need to be considered. Alkaline diet has low cost and I don't

see any risk, but I am skeptical of the logic and benefits. I discuss it

all.

notan

[Guest guest]

Discussion is good. Hopefully we can all benefit from it. Alkaline

diet is simply for me a way to manage symptoms and improve how I

feel. Nothing more.

Jan

> > ... I know you all mean well and believe that surgery is

> > the best thing available at this point. ...

>

> Actually, I tell people there is no right answer, just options with

> different costs, risks and benefits. I have no way to know what the

best

> answer is for you. I like to discuss the options and their benefits

but

> also their costs and risks. Surgery statistically offers very good

> benefits to many, but not all. It also has a very high cost and

some

> risks that need to be considered. Alkaline diet has low cost and I

don't

> see any risk, but I am skeptical of the logic and benefits. I

discuss it

> all.

>

> notan

>

[Guest guest]

Jan wrote:

> ...Alkaline

> diet is simply for me a way to manage symptoms and improve how I

> feel. Nothing more.

>

This is true of all the options. There is nothing that does more than

improve symptoms.

notan

[Guest guest]

I understand.

Jan

> > ...Alkaline

> > diet is simply for me a way to manage symptoms and improve how I

> > feel. Nothing more.

> >

>

> This is true of all the options. There is nothing that does more than

> improve symptoms.

>

> notan

>

[Guest guest]

Jan,

Don't let the fact that you read on here about myotomies that need

to be re-done, influence you too much. A lot of the people that stay

on with the group (or return) are the ones that continue to have

problems. It seems that far fewer still participate after having

successful surgery. Many leave the group and go on with their lives

after that. Of course, we really appreciate the ones that do stay on

to help others .

Your letter sounds like a good idea. Please let us know if you

get a reply. I can't recall the name, but I did sign up on a website

to be notified if subjects are needed for research studies. It was

over a year ago that I signed up (that's why I can't remember the site

name) and they e mailed me only once. That was for a study on GERD,

so it didn't help my hubby at all . Hopefully, you'll get a

response to your letter! Good luck!

in Michigan

> > > > > >

> > > > > > I do feel bad. I keep reaching out only to feel slapped

> down

> > for

> > > > > > trying. My significant other was there with me during the

> > > > > > endoscopic.. .and afterwards we both heard the word

> achalasia

> > > for

> > > > the

> > > > > > first time. We had never heard of it. We both dove into

> > > > researching

> > > > > > this and I went on a 10 day fast with him feeding me

> nothing

> > but

> > > > > > spirulina and tea. I felt a lot better. I felt a lot better

> > when

> > > > > > I " went back to my college days roots " and gravitated

> towards

> > > > > > vegetarian foods...things I actually enjoy. At this point I

> > > know

> > > > the

> > > > > > reality is that I am scared. If you have real hard & fast

> > data

> > > > about

> > > > > > alkaline foods then by all means share it if you will. I am

> > all

> > > > > > ears. The hardest part for me is not so much sticking to

> what

> > > > feels

> > > > > > to be more alkaline foods....as it is giving up the things

> I

> > > know

> > > > are

> > > > > > bad for me....like coffee.....so then I guilt-trip

> > > myself....and

> > > > when

> > > > > > I venture out into this uncharted world called achalasia...

> I

> > > find

> > > > > > very little is known... I feel alone. I don't want to think

> > I'm

> > > > > > indoctrinated about diet any more than I want to be

> > > indoctrinated

> > > > > > about surgery. Yesterday as I went through the posts on

> this

> > > site

> > > > I

> > > > > > came away thinking that there was no hope....not surgery or

> > > diet

> > > > was

> > > > > > going to be my salvation. But I am not a person who gives up

> > > > > > easily. I will keep trying and pursuing what feels like the

> > > right

> > > > > > things. I like the idea of the HARP group...Humans for

> > Achalasia

> > > > > > Research Project.... but again...I know that the only ones

> > who

> > > > ever

> > > > > > spend money on research are pharmeceutical companies who

> > stand

> > > to

> > > > > > gain from it....and if there aren't enough of us.... that

> > > leaves

> > > > the

> > > > > > government.. .sigh. Many things have been accomplished by

> > > > grassroots

> > > > > > attempts like HARP. So once again...don' t give up. I will

> > > continue

> > > > > > to read the books...trying the recipes and enjoy them for

> > what

> > > > they

> > > > > > are.... and keep going until something else surprises me.

> > > > > > Jan

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ------------ --------- --------- ---

> > > Sent from & #45; a smarter inbox.

> > >

> >

> >

> >

> >

> >

> >

> ______________________________________________________________________

> ______________

> > Looking for last minute shopping deals?

> > Find them fast with Search.

> http://tools.search./newsearch/category.php?category=shopping

> >

>