Re: Doing Nothing is Not an Option - Part 4 - The Barium Swallow

[Guest guest]

, I think we all go through some emotional changes,

depression and etc with this disease. I have not been told

that my esophagus as reached the stage yours is yet, so that

I can only imagine.

I know when I was trying to get a diagnosis and my first GI

told me there was nothing that could be done for me that

no one knew what this disease was nor how to treat it, I needed

to go home and learn to live with it. At the time I was having

problems keeping down food and water. How do you learn to

live without food and water? I immediately went to UAB in

Birmingham and they suspected it was achalasia even before

I had any test there. I always felt very lucky that it didn't

take me years as it has some who've passed our way to get

diagnosed. I was a wreck mentally trying to decide what

I had that even doctors didn't have a clue about.

Yes, you'll go through a lot of different stages, but you are

a strong person and will come out making the right decisions.

In the meantime, I for one and I know there will be others

that will be praying your results will not be nearly as bad as

you suspect.

Hang in there....and we'll all be here with you.

Big hugs,

Maggie

[Guest guest]

,

Good luck, tomorrow!! I, too, am glad you decided to share your

story. You have been a help to so many others here and now we have a

chance to try to be of help to you! I wish they hadn't left you with

this agonizing 2 day wait to hear the results of your barium. Once

you get the news, you can start learning more and preparing yourself

for whatever eventuality (and we'll be here for you on that), but the

waiting can drive a person crazy! Try to keep busy with things you

enjoy today and please let us know how things go tomorrow!

in Michigan

[Guest guest]

,

If only the barium tasted like cake…that

would be nice. Or a nice cold margarita…..

I do find it ironic that they asked you to

remain lying down until they were done. One of my most favorite barium swallow

experiences was when the technician actually gasped out loud when he first saw

my esophagus. Of course I knew why he was gasping, as I had seen it before, but

I got the impression he didn’t realize I could hear him over the wall and

he was truly freaked out by what he was seeing on the screen.

When I went to see Dr. s in Rochester last September,

I actually said to my husband on the drive out, “well, worst case

scenario he tells me he needs to pull the whole thing out”. Sure enough,

that was the recommendation. I think I knew going into it, after all the

research I had done, that realistically that was where I was at. I knew what I

was going to hear, and as much as it wasn’t what I wanted to hear, I was

mentally preparing myself for it.

I sincerely hope this is not the same news

you get on Friday. However, without taking the time to sugar coat this for you…..you

are a very intelligent man who has done a great deal of research and taken the

time to educate yourself. You know what the most successful options tend to be

at various stages of this disorder, and you have given countless people on this

board very good advice. That being said, after seeing the current state of

things, you should prepare yourself that the odds are fairly high you will hear

this as something you should consider. They will probably tell you that because

achalasia is a progressive disease (as if we don’t already know this),

that you can determine the timing of this for yourself, and possibly seek

additional treatments (dilitations) in the meantime.

On the flip side, should this doctor have

some secret miracle solution, please let me know and I will make an appt. with

her immediately.

As for the range of emotions, I am right

there with you. My emotions fluctuate from being totally angry with my parents

for not being a better advocate for me when I was 16 and first diagnosed, to

complete depression over being such a freak with some disorder nobody really

understands, to total fear of both having the BIG surgery and then fear of NOT

having the BIG surgery. My problem is that I am a total control freak and I don’t

do well with the unknown. So I sit here and obsess over the “what-ifs”

and basically make myself crazy. In the end I am no closer to a decision than I

was when I first got the recommendation nearly a year ago. Of course,

that depends on the day too. If I have a series of good days where things are

moving along and I feel good, then I think, why bother now…..why undergo

major surgery when I am functioning day to day? Then I have some bad days, and

I think, screw this, take the damn thing already! Let’s get it over with!

Then I think about what it will be like getting through this, and the fear of

what lies on the other side, because as we all know, once it’s gone, they

can’t put it back, and the grass is always greener, right???? Who knows.

But as you can see, I am fully aware of the range of emotions….and as I

said earlier, please know you are not alone.

On another note, speaking of not feeling

alone…..I have noticed that close to a year ago when I got my

esophagectomy recommendation, I was one of the only ones on the board facing

the decision at the time. Now it suddenly feels like there is 5 or 6 of us

facing this all at the same time. Very strange, yet oddly comforting (not that

I would wish that on anyone).

I hope to hear from you tomorrow when you

get the results and recommendations.

You are in my thoughts,

in NY

From: achalasia [mailto:achalasia ] On Behalf Of cynmark24@...

Sent: Wednesday, July 12, 2006 11:08 PM

achalasia

Subject: Doing Nothing

is Not an Option - Part 4 - The Barium Swallow

,

As you

know I have always had a great interest and feeling for you and what you have

gone through, and what you are facing. I just never thought that I would

be facing a similar decision in the near future. After reading your

message below, I feel very strongly connected to you. Tragedies,

disasters and common health crises are very strong forces that bring people of

distant origins very close together, forming an exceptionally strong

bond. I had not heard from you for a while and was wondering where you

were in your " journey? "

Today's barium swallow was, of course, a piece of cake (I wish it

was cake). It just struck me as kind of ironic that when I am lying on

my back when the tests are finished, that I am told to to just stay there while

they review the photos to see if anymore photos need to be done.

HELLO! I have Achalasia, and you know it. You don't tell me to stay

on my back right after I drank a liter of that poison! Ok, so without

further ado I just sat up and waited. 10 minutes later he came back that

it was all OK.

I got glimpses of my esophagus on the screen while the tests were

performed, and it didn't look like any esophagus that I've ever seen. The

radiologist would not commit to saying that I had a mega-esophagus, only commenting

that my esophagus made an elephant's trunk look small by comparison!

He really didn't say that. I just thought I needed to

inject a little humor here.

Its strange. I know that I am not in a good situation at the

moment. What bothers me the most going forward is the anticipation of

what my gastro doc is going to say to me on Friday. Like knowing you are

going to get a bad report card...you know its coming, but you can't bear to

hear the words " You failed! " or " you've got one helluva gross

esophagus that's going to need surgery like you've never had before! "

In my saner moments right now, I know that I will be extremely

upset at first, then depressed, will think about it, collect myself, then go

forward. Except for the " anger " part does that sound anything

like the emotional stages one goes thru when they are told that they are going

to die? Nobody is dying over here, but the emotional stages remind me of

it.

, thank you so much for your words. It really is amazing what

a therapeutic effect they can have.

My dear friend, Lilac Ann convinced me to go public with all of this when I first started

facing it. For many reasons I now agree with her.

In a message dated 7/12/2006 10:36:10 P.M.

Eastern Standard Time, tracylb@...

writes:

,

After many of the nice chats we have had, you have come to know my

situation very well. Now that you may be facing the same decision as I am,

please know that I am here for you. You are NOT alone in trying to sort through

the recommendations, information and advice to make the best possible decision

for yourself. It is not easy….I am still struggling on this road and

haven’t come to a solid conclusion myself. Just know that we are behind

you and some of us truly mean it when we say we know what you are going

through.

Waiting to hear from you on the barium swallow results,

in NY

From: achalasia [mailto:achalasia ] On Behalf Of cynmark24@...

Sent: Tuesday, July 11, 2006

2:45 PM

achalasia

Subject: Re:

Hi ,

We are still on for the Sept 2

meetup! Just briefly since you know much of my history, I have had

isolated events throughout my 15 year post-op period. After I joined this

group, I began to have consistent problems, especially sleeping at night

(must be the group's fault, where I felt everyone else's pain). Hindsight

says, that even though I felt good over the years, I should have had regular

checkups.

I am having a barium swallow

tomorrow and should have the results by Friday. This, as you well know, will

" paint " a real picture of my E. I cringe at hearing what my

doctor will be saying about it, but at this point I must move forward.

: when I get the report

back from my doctor I will begin my search for the best surgeon for my

case. I would want to proceed by September on this (after my meetup with

and Manny, of course).

Ann, your support makes me practically

feel that you are by my side in this.

I will wait until I get the upper GI report back

and then research like I never have before. Thanks everyone for your

being with me on this. It really does help a lot.

Ugh! Such a toss up isn't it? NO barretts or cancer - good. Soggy,

floppy, sigmoid E - bad. I feel your pain, not directly of course but

I'm about 2 years longer post-op than you and we've had A about the

same length of time so your current path may very well be my future

one. At least the doctor now is giving you options and not just going

for removal. Hell, if you can get a 2nd surgery and get another good 15

years out of that one - you'll be a lucky man.

Now the problems you've been having, did they come on pretty suddenly

or has it been gradual over the course of several years?

Still looking forward to our meet-up. I'll be able to wish you luck and

give you a hug in person.

Take care and keep us posted.

Happy Swallowing!

- in Va.

----------------------------------------------------------------Doing Nothing is Not an Option - Part 3 - the Endoscopy

I am still amazed as to what propofol (the injected

anesthesia) does. One moment I am on my side with the

" holder " in my mouth for the endoscope waiting for the injection, and

then a " moment " later I am still on my side, but in a different room,

and the endoscopy is finished almost " before it began. " Awesome

stuff.

The good news was that there was no Barrett's, no significant scar

tissue, no ulcers, no growths. The bad news, and its only preliminary, is

that the esophagus has gotten sigmoid in shape, grossly dilated, and appears to

have " sunk " down lower than the stomach. Look at the piping

beneath your bathroom sink. Most pipes go down low, and then come back up

again before exiting the room. That's my E, lower than my stomach.

This would explain all the middle of the night spontaneous regurgitations I had

been suffering from, and why doing my own regurgitation before going to sleep,

allowed me to sleep through the night.

Dr. Brody mentioned esophagectomy to me, but was not suggesting it

(yet).

I need to get the name of it, but there is a surgery where the

esophagus is pulled up (probably like a marionette), and then there is also the

esophageal resectioning.

Oh, and while she was in there she did a minor dilatation hopefully

to give me some relief.

Ann, Manny, and Robyn, thank you for your birthday cheers,

and Maggie for the encouragment you gave me this morning IMing to me.

PS: I see that my first message to Mr Clean from 9am finally appeared on the Board,

after 6 hours.

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

" Doing Nothing is not an Option " - Part 2 - The

Consultation

Yesterday I had my consultation with Dr. Brody. Even though

we have known each other for years (through my wife's GERD), it was the

first time we met as doctor/patient. She wanted to get to know me, my

symptoms, and my medical history, in advance of Monday's endoscopy. There

was no examination, nor did I expect one.

My 370 page medical history from s Hopkins (1984 - 1994) was filtered down to

around 110 pages and made for some eye-opening reading while I awaited my

appointment. I always felt somewhat ignorant in this group not knowing

the name of the wrap I had, plus being unsure how many dilatations I had (how

can one forget!) Now I know, and I'll be able to translate my achalasian

history to Notan's new identification system. 5 dilatations before

the 1 myotomy with a Belsey wrap. I'll do the

abbreviating later. (You'd think, considering the definition of the

word " abbreviation " that it should be a much smaller word)

If there was one thing I learned from yesterday, we all should have

access to our detailed medical histories. There was much in there that I

was not aware of. Apparently, and maybe with the best of intentions,

doctors only tell you what they believe you should know. Having a friend

who thinks she has Cancer every time she has a new pain, I will admit that it

is sometimes in the patient's best interest that they are not

told everything.

Based upon the symptoms I described to Dr. Brody, she felt that I

will need on Monday a minor dilatation, to clear away possible scar tissue and

a possible narrowing in the LES.

Ann, Giselle, Kim (from NZ), Maggie, and Peggy, thank you so much

for your warm thoughts and well wishes.

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

" Doing Nothing is

not an Option " - Part 1

Since January 2006 I

have been posting here. Having suffered since Feb 1982, with an

open Heller with Fundo in Dec 1991, I came here to share experiences with

others. I have learned much from my fellow Achalasians.

Much of what has transpired, has been communicating with new sufferers and

sharing experiences hoping that it might be helpful.

While this should

continue as new people come to this Board for help, my own situation has

suddenly changed.

3 years after I had my

surgery, my GI doctor (who I virtually worshipped) retired. With nobody

of his caliber to take his place I stopped doing my annual trek from New York to Baltimore,

while at the same time, felt good enough that I did not need to start

" trying out " doctors in my home area of Long Island, NY.

Over the years I always

needed soda to get the food down, suffered pneumonia once from

aspirating, experienced plenty of isolated incidences where I felt I was

just a breath away from my last as food and liquid got stuck, and of course the

famous (heart attack) spasms that most of us learn to deal with.

I viewed myself as

the person with the successful surgery, who after nearly 15 years was still

doing great!

About 5 months ago, the

isolated episodes became regular episodes, where I could no longer sleep.

Regurgitations through the night, every night, became the rule. Most

meals I could get through, but it was becoming more difficult, and it took more

soda to " send it thru. "

Recalling our group

mantra, " Doing nothing is not an option, " I finally called my wife's

former gastroenterologist, who specializes in Achalasia. I had to wait

nearly 2 months for an appointment. A consultation is scheduled

for tomorrow, and an endoscopy for Monday.

More recently I have

slept better by forcing up whatever is in my esophagus before going to

sleep. (This is not the direction I want to go).

Since we all benefit

from sharing information with each other, good, bad, or otherwise, I will

report back the findings.

PS to : You

have come so far in such a short time, please continue to get better without

pushing yourself beyond what your body is telling you.

..

[Guest guest]

Dear :

We are here to support you.

Hugs

Peggy

>

>

> ,

>

> As you know I have always had a great interest and feeling for you and

> what you have gone through, and what you are facing. I just never thought

that

> I would be facing a similar decision in the near future. After reading your

> message below, I feel very strongly connected to you. Tragedies, disasters

> and common health crises are very strong forces that bring people of distant

> origins very close together, forming an exceptionally strong bond. I had not

> heard from you for a while and was wondering where you were in your

> " journey? "

>

> Today's barium swallow was, of course, a piece of cake (I wish it was

> cake). It just struck me as kind of ironic that when I am lying on my back

> when the tests are finished, that I am told to to just stay there while they

> review the photos to see if anymore photos need to be done. HELLO! I have

> Achalasia, and you know it. You don't tell me to stay on my back right after

I

> drank a liter of that poison! Ok, so without further ado I just sat up and

> waited. 10 minutes later he came back that it was all OK.

>

> I got glimpses of my esophagus on the screen while the tests were

> performed, and it didn't look like any esophagus that I've ever seen. The

> radiologist would not commit to saying that I had a mega-esophagus, only

commenting

> that my esophagus made an elephant's trunk look small by comparison!

>

> He really didn't say that. I just thought I needed to inject a little

> humor here.

>

> Its strange. I know that I am not in a good situation at the moment.

> What bothers me the most going forward is the anticipation of what my gastro

> doc is going to say to me on Friday. Like knowing you are going to get a bad

> report card...you know its coming, but you can't bear to hear the words " You

> failed! " or " you've got one helluva gross esophagus that's going to need

> surgery like you've never had before! "

>

> In my saner moments right now, I know that I will be extremely upset at

> first, then depressed, will think about it, collect myself, then go forward.

> Except for the " anger " part does that sound anything like the emotional

> stages one goes thru when they are told that they are going to die? Nobody

is

> dying over here, but the emotional stages remind me of it.

>

> , thank you so much for your words. It really is amazing what a

> therapeutic effect they can have.

>

> My dear friend, Lilac Ann convinced me to go public with all of this

> when I first started facing it. For many reasons I now agree with her.

>

>

>

> In a message dated 7/12/2006 10:36:10 P.M. Eastern Standard Time,

> tracylb@... writes:

>

>

>

>

>

> ,

> After many of the nice chats we have had, you have come to know my situation

> very well. Now that you may be facing the same decision as I am, please know

> that I am here for you. You are NOT alone in trying to sort through the

> recommendations, information and advice to make the best possible decision

for

> yourself. It is not easy….I am still struggling on this road and haven’t

come

> to a solid conclusion myself. Just know that we are behind you and some of us

> truly mean it when we say we know what you are going through.

> Waiting to hear from you on the barium swallow results,

> in NY

>

>

> ____________________________________

>

> From: <ST1>achalasia@ [mailto: [mailto:<ST1>achalas] On Behalf Of

> cynmark24@...

> Sent: Tuesday, Tuesday, <ST <S

> <ST1>achalasia@

> Subject: Re:

>

>

>

>

> Hi ,

>

> We are still on for the Sept 2 meetup! Just briefly since you know much of

> my history, I have had isolated events throughout my 15 year post-op period.

> After I joined this group, I began to have consistent problems, especially

> sleeping at night (must be the group's fault, where I felt everyone else's

> pain). Hindsight says, that even though I felt good over the years, I should

> have had regular checkups.

>

>

>

> I am having a barium swallow tomorrow and should have the results by Friday.

> This, as you well know, will " paint " a real picture of my E. I cringe at

> hearing what my doctor will be saying about it, but at this point I must move

> forward.

>

>

>

> : when I get the report back from my doctor I will begin my search for

> the best surgeon for my case. I would want to proceed by September on this

> (after my meetup with and Manny, of course).

>

>

>

> Ann, your support makes me practically feel that you are by my side in this.

>

>

>

> I will wait until I get the upper GI report back and then research like I

> never have before. Thanks everyone for your being with me on this. It

really

> does help a lot.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Ugh! Such a toss up isn't it? NO barretts or cancer - good. Soggy,

> floppy, sigmoid E - bad. I feel your pain, not directly of course but

> I'm about 2 years longer post-op than you and we've had A about the

> same length of time so your current path may very well be my future

> one. At least the doctor now is giving you options and not just going

> for removal. Hell, if you can get a 2nd surgery and get another good 15

> years out of that one - you'll be a lucky man.

> Now the problems you've been having, did they come on pretty suddenly

> or has it been gradual over the course of several years?

>

> Still looking forward to our meet-up. I'll be able to wish you luck and

> give you a hug in person.

> Take care and keep us posted.

>

> Happy Swallowing!

> - in -Mi

>

>

>

>

>

>

>

>

>

>

>

> ----------------------------------------------------------------Doing

Nothing

> is Not an Option - Part 3 - the Endoscopy

>

>

>

>

>

> I am still amazed as to what propofol (the injected anesthesia) does. One

> moment I am on my side with the " holder " in my mouth for the endoscope

waiting

> for the injection, and then a " moment " later I am still on my side, but in a

> different room, and the endoscopy is finished almost " before it began. "

> Awesome stuff.

> The good news was that there was no Barrett's, no significant scar tissue,

> no ulcers, no growths. The bad news, and its only preliminary, is that the

> esophagus has gotten sigmoid in shape, grossly dilated, and appears to have

> " sunk " down lower than the stomach. Look at the piping beneath your bathroom

> sink. Most pipes go down low, and then come back up again before exiting

the

> room. That's my E, lower than my stomach. This would explain all the middle

> of the night spontaneous regurgitations I had been suffering from, and why

> doing my own regurgitation before going to sleep, allowed me to sleep through

> the night.

> Dr. Brody mentioned esophagectomy to me, but was not suggesting it (yet).

> I need to get the name of it, but there is a surgery where the esophagus is

> pulled up (probably like a marionette), and then there is also the esophageal

> resectioning.

> Oh, and while she was in there she did a minor dilatation hopefully to give

> me some relief.

> Ann, Manny, and Robyn, thank you for your birthday cheers, and

> Maggie for the encouragment you gave me this morning IMing to me.

>

> PS: I see that my first message to Mr Clean from 9am finally appeared on the

> Board, after 6 hours.

>

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

--

> ---

> " Doing Nothing is not an Option " - Part 2 - The Consultation

> Yesterday I had my consultation with Dr. Brody. Even though we have known

> each other for years (through my wife's GERD), it was the first time we met

> as doctor/patient. She wanted to get to know me, my symptoms, and my medical

> history, in advance of Monday's endoscopy. There was no examination, nor did

> I expect one.

>

> My 370 page medical history from s Hopkins (1984 - 1994) was filtered

> down to around 110 pages and made for some eye-opening reading while I

awaited

> my appointment. I always felt somewhat ignorant in this group not knowing

> the name of the wrap I had, plus being unsure how many dilatations I had (how

> can one forget!) Now I know, and I'll be able to translate my achalasian

> history to Notan's new identification system. 5 dilatations before the 1

myotomy

> with a Belsey wrap. I'll do the abbreviating later. (You'd think,

> considering the definition of the word " abbreviation " that it should be a

much

> smaller word)

>

> If there was one thing I learned from yesterday, we all should have access

> to our detailed medical histories. There was much in there that I was not

> aware of. Apparently, and maybe with the best of intentions, doctors only

tell

> you what they believe you should know. Having a friend who thinks she has

> Cancer every time she has a new pain, I will admit that it is sometimes in

the

> patient's best interest that they are not told everything.

>

> Based upon the symptoms I described to Dr. Brody, she felt that I will need

> on Monday a minor dilatation, to clear away possible scar tissue and a

> possible narrowing in the LES.

>

> Ann, Giselle, Kim (from NZ), Maggie, and Peggy, thank you so much for your

> warm thoughts and well wishes.

>

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

--

> ---

>

>

> " Doing Nothing is not an Option " - Part 1

>

> Since January 2006 I have been posting here. Having suffered since Feb

> 1982, with an open Heller with Fundo in Dec 1991, I came here to share

> experiences with others. I have learned much from my fellow Achalasians.

Much of

> what has transpired, has been communicating with new sufferers and sharing

> experiences hoping that it might be helpful.

>

> While this should continue as new people come to this Board for help, my own

> situation has suddenly changed.

>

> 3 years after I had my surgery, my GI doctor (who I virtually worshipped)

> retired. With nobody of his caliber to take his place I stopped doing my

> annual trek from New York to Baltimore, while at the same time, felt good

enough

> that I did not need to start " trying out " doctors in my home area of Long

> Island, NY.

>

> Over the years I always needed soda to get the food down, suffered pneumonia

> once from aspirating, experienced plenty of isolated incidences where I felt

> I was just a breath away from my last as food and liquid got stuck, and of

> course the famous (heart attack) spasms that most of us learn to deal with.

>

> I viewed myself as the person with the successful surgery, who after nearly

> 15 years was still doing great!

>

> About 5 months ago, the isolated episodes became regular episodes, where I

> could no longer sleep. Regurgitations through the night, every night, became

> the rule. Most meals I could get through, but it was becoming more

> difficult, and it took more soda to " send it thru. "

>

> Recalling our group mantra, " Doing nothing is not an option, " I finally

> called my wife's former gastroenterologist, who specializes in Achalasia. I

had

> to wait nearly 2 months for an appointment. A consultation is scheduled for

> tomorrow, and an endoscopy for Monday.

>

> More recently I have slept better by forcing up whatever is in my esophagus

> before going to sleep. (This is not the direction I want to go).

>

> Since we all benefit from sharing information with each other, good, bad, or

> otherwise, I will report back the findings.

>

>

>

> PS to : You have come so far in such a short time, please continue to

> get better without pushing yourself beyond what your body is telling you.

>

>

>

>

>

>

>

>

>

> .

>

[Guest guest]

Hi ,

I am sorry to hear you have achalasia at such a young age. I am 49 and

was diagnosed about January 2006 after years of chest pain. Like you I

really do not want to have surgery. For me there have been benefits, I

have lost 20kg, I feel fitter and am playing more sport, I no longer

have severe heart burn. Of course my wife is very unhappy with me, I

cannot sit in a restaurant and eat a meal with friends and I barely

spend more than five minutes away from the sink at night.

I have learnt over the last few months how to best manage my diet and

seemed to have stopped the weight loss. I certainly don't follow

Doctors orders. I find three coffees by 12.30, a short soup for lunch

and snacks ( chocloate, a few biscuits ) for the rest of the day. I

religiously avoid red meat and bread which are disasterous.

I have been reflecting on why I have this problem. I have Obstructive

CardioMyopathy as well and thought maybe my heart had grown to large,

I though that my occassional depression had contributed, or perhaps my

general abuse of alchohol as a teenager.

My friends at work have suggested a chiropractor but there seems to be

very little on this site supporting that idea.

Anyway you soon grow used to the barium swallows and the manography it

really isn't too bad and for me the nurse is cute.

I am going to put off my surgery for as long as I can, the outcomes in

most cases seem to be good, but are not for ever ( up to 7 years). If

I eat small amounts, have very little to eat at night and stay close

to a toilet I feel safe. I have had a few awkward momments in crowded

rooms and on international flights.

btw, the person doing my barium swallow also laughed when they saw the

x-ray and my manographer thinks I am great for her experiments.

I hope it all goes well for you.

If any one else can draw a connection between HOCUM,DEPRESSION and

achalasia I would love to hear from them.

Buzz Bayley

Melbourne - Australia

[Guest guest]

Dear Buzz, I cannot answer all your questions but I can help you with two points. The first is to say that I know you say you do not want surgery but why are you putting up with all this hassle? I did exactly the same thing for many years, so I know what you are talking about. I had my myotomy 12 weeks ago and my life has changed dramatically. It is not only the fact that I can eat properly now, although that in itself feels nothing short of a miracle, but I feel so very well, because I am now getting the nutrients that were in short supply for so long. When food is resting in your oesophagus for DAYS (no exaggeration, promise), by the time it reaches your bloodstream, it's not exactly rich in vitamins and minerals. I believe now that this can be the cause of many ailments, including depression. I used to have to fight mild depression before my op. I was very positive about it and tried to not let it beat me and most of the time I did ok, but it is only now that I see exactly how hard my life was for me. Now living is easy. I do not have to try so hard. I cannot say to you : "Buzz, go out and get the op done". It is a big decision to make and one for only you, but I can only tell you that it has changed the world for me and whether it now lasts for seven months, seven years or seventy years, by which time I would have to change my pen name to Lilac Methusulah, I have no regrets. Life is for living properly, not standing over sinks. Love from Ann in England XXX buzzbayley <buzzbayley@...> wrote: Hi , I am sorry to hear you have achalasia at such a young age. I am 49 andwas diagnosed about January 2006 after years of chest pain. Like you Ireally do not want to have surgery. For me there have been benefits, Ihave lost 20kg, I feel fitter and am playing more sport, I no longerhave severe heart burn. Of course my wife is very unhappy with me, Icannot sit in a

restaurant and eat a meal with friends and I barelyspend more than five minutes away from the sink at night.I have learnt over the last few months how to best manage my diet andseemed to have stopped the weight loss. I certainly don't followDoctors orders. I find three coffees by 12.30, a short soup for lunchand snacks ( chocloate, a few biscuits ) for the rest of the day. Ireligiously avoid red meat and bread which are disasterous.I have been reflecting on why I have this problem. I have ObstructiveCardioMyopathy as well and thought maybe my heart had grown to large,I though that my occassional depression had contributed, or perhaps mygeneral abuse of alchohol as a teenager. My friends at work have suggested a chiropractor but there seems to bevery little on this site supporting that idea. Anyway you soon grow used to the barium swallows and the manography itreally isn't too bad and for me the nurse

is cute.I am going to put off my surgery for as long as I can, the outcomes inmost cases seem to be good, but are not for ever ( up to 7 years). IfI eat small amounts, have very little to eat at night and stay closeto a toilet I feel safe. I have had a few awkward momments in crowdedrooms and on international flights. btw, the person doing my barium swallow also laughed when they saw thex-ray and my manographer thinks I am great for her experiments.I hope it all goes well for you.If any one else can draw a connection between HOCUM,DEPRESSION andachalasia I would love to hear from them.Buzz BayleyMelbourne - Australia

All new "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

[Guest guest]

Dear Ann, I just wanted to say a quick thanks for your email. I have been inundated with work and emails and to top it off my office was broken into yesterday and my laptop and wallet were stolen. You have prompted me to think more seriosuly about having an operation. Many Thanks, Buzz Bayley Ann Higgs <lilac_blossom_lady@...> wrote: Dear Buzz, I cannot answer all your questions but I can help you with two points. The first is to say that I know you say you do not want surgery but why are you putting up with all this hassle? I did exactly the same thing for many years, so I know what you are talking about. I had my myotomy 12 weeks ago and my life has changed dramatically. It is not only the fact that I can eat properly now, although that in itself feels nothing short of a miracle, but I feel so very well, because I am now getting the nutrients that were in short supply for so long. When food is resting in your oesophagus for DAYS (no exaggeration, promise), by the time it reaches your bloodstream, it's not exactly rich in vitamins and minerals. I believe now that this can be the cause of many ailments, including depression. I used to have to fight mild depression before my op. I was very positive about it and tried to not let it beat me and most of the time I did ok, but it is only now that I see exactly how hard my life was for me. Now living is easy. I do not have to try so hard. I cannot say to you : "Buzz, go out and get the op done". It is a big decision to make and one for only you, but I can only tell you that it has changed the world for me and whether it now lasts for seven months, seven years or seventy years, by which time I would have to change my pen name to Lilac Methusulah, I have no regrets. Life is for living properly, not standing over sinks. Love from Ann in England XXX buzzbayley <buzzbayley .au> wrote: Hi , I am sorry to hear you have achalasia at such a young age. I am 49 andwas diagnosed about January 2006 after years of chest pain. Like you Ireally do not want to have surgery. For me there have been benefits, Ihave lost 20kg, I feel fitter and am playing more sport, I no longerhave severe heart burn. Of course my wife is very unhappy with me, Icannot sit in a restaurant and eat a meal with friends and I barelyspend more than five minutes away from the sink at night.I have learnt over the last few months how to best manage my diet andseemed to have stopped the weight loss. I certainly don't followDoctors orders. I find three coffees by 12.30, a short soup

for lunchand snacks ( chocloate, a few biscuits ) for the rest of the day. Ireligiously avoid red meat and bread which are disasterous.I have been reflecting on why I have this problem. I have ObstructiveCardioMyopathy as well and thought maybe my heart had grown to large,I though that my occassional depression had contributed, or perhaps mygeneral abuse of alchohol as a teenager. My friends at work have suggested a chiropractor but there seems to bevery little on this site supporting that idea. Anyway you soon grow used to the barium swallows and the manography itreally isn't too bad and for me the nurse is cute.I am going to put off my surgery for as long as I can, the outcomes inmost cases seem to be good, but are not for ever ( up to 7 years). IfI eat small amounts, have very little to eat at night and stay closeto a toilet I feel safe. I have had a few awkward momments in crowdedrooms and on

international flights. btw, the person doing my barium swallow also laughed when they saw thex-ray and my manographer thinks I am great for her experiments.I hope it all goes well for you.If any one else can draw a connection between HOCUM,DEPRESSION andachalasia I would love to hear from them.Buzz BayleyMelbourne - Australia All new "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

On 7 360°: Share your blog, photos, interests and what matters most to you

[Guest guest]

Hi Buzz,

I've just read your message and just wanted to let you know that I was

officially diagnosed

with achalasia in 2005, just like you I found that avoiding large meals and

snacking on

cookies, soups and chocolate bars was the only way I got food down. Eventually

you will

feel the need to eat more healthier sooner or later. I had my third balloon

dilitation 3

weeks ago and I can eat again. It feels wonderful!!!!

I just wanted to share my story and say good luck deciding what you want to do.

Patrica from Maple, Ontario (Canada)

>

> Hi ,

>

> I am sorry to hear you have achalasia at such a young age. I am 49 and

> was diagnosed about January 2006 after years of chest pain. Like you I

> really do not want to have surgery. For me there have been benefits, I

> have lost 20kg, I feel fitter and am playing more sport, I no longer

> have severe heart burn. Of course my wife is very unhappy with me, I

> cannot sit in a restaurant and eat a meal with friends and I barely

> spend more than five minutes away from the sink at night.

>

> I have learnt over the last few months how to best manage my diet and

> seemed to have stopped the weight loss. I certainly don't follow

> Doctors orders. I find three coffees by 12.30, a short soup for lunch

> and snacks ( chocloate, a few biscuits ) for the rest of the day. I

> religiously avoid red meat and bread which are disasterous.

>

> I have been reflecting on why I have this problem. I have Obstructive

> CardioMyopathy as well and thought maybe my heart had grown to large,

> I though that my occassional depression had contributed, or perhaps my

> general abuse of alchohol as a teenager.

>

> My friends at work have suggested a chiropractor but there seems to be

> very little on this site supporting that idea.

>

> Anyway you soon grow used to the barium swallows and the manography it

> really isn't too bad and for me the nurse is cute.

>

> I am going to put off my surgery for as long as I can, the outcomes in

> most cases seem to be good, but are not for ever ( up to 7 years). If

> I eat small amounts, have very little to eat at night and stay close

> to a toilet I feel safe. I have had a few awkward momments in crowded

> rooms and on international flights.

>

> btw, the person doing my barium swallow also laughed when they saw the

> x-ray and my manographer thinks I am great for her experiments.

>

> I hope it all goes well for you.

>

> If any one else can draw a connection between HOCUM,DEPRESSION and

> achalasia I would love to hear from them.

>

> Buzz Bayley

> Melbourne - Australia

>

>

>

>

>

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

> All new " The new Interface is stunning in its simplicity and

ease of use. " -

PC Magazine

>

>

>

>

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

> On 7

> 360 & #176;: Share your blog, photos, interests and what matters most to you

>

[Guest guest]

Buzz Bayley, Hi my name s and i have not been on for a bit due to moving. I am sure whatever our dear Ann has told you is only to help you out and I would second anything she has said. The surgery is the best option out there for long term relief from this diseas. That of course is if there are no other medical reasons that surgery would not hinder you. I do not know if you have been told of this other web site but there is a lot of good information on there too. The site is www.acahalsia.us . Really concider getting the surgery you will not believe how much better you will feel when you can eat more normally. Best wishes in Georgia.Buzz Bayley <buzzbayley@...> wrote: Dear Ann, I just wanted to say a quick thanks for your email. I have been inundated with work and emails and to top it off my office was broken into yesterday and my laptop and wallet were stolen. You have prompted me to think more seriosuly about having an operation. Many Thanks, Buzz Bayley Ann Higgs <lilac_blossom_lady (DOT) co.uk> wrote: Dear Buzz, I cannot answer all your questions but I can help you with two points. The first is to say that I know you say you do not want surgery but why are you putting up with all this hassle? I did exactly the same thing for many years, so I know what you are talking about. I had my myotomy 12 weeks ago and my life has changed dramatically. It is not only the fact that I can eat properly now, although that in itself feels nothing short of a miracle, but I feel so very well, because I am now getting the nutrients that were in short supply for so long. When food is resting in your oesophagus for DAYS (no exaggeration, promise), by the time it reaches your bloodstream, it's not exactly rich in vitamins and minerals. I believe now that this can be the cause of many ailments, including depression. I used to have to fight mild depression before my op. I was very positive about it and tried to not let it beat me and most of the time I did ok, but it is only now that I see exactly how hard my life was for me. Now living is easy. I do not have to try so hard. I cannot say to you : "Buzz, go out and get the op done". It is a big decision to make and one for only you, but I can only tell you that it has changed the world for me and whether it now lasts for seven months, seven years or seventy years, by which time I would have to change my pen name to Lilac Methusulah, I have no regrets. Life is for living properly, not standing over sinks. Love from Ann in England XXX buzzbayley <buzzbayley .au> wrote: Hi , I am sorry to hear you have achalasia at such a young age. I am 49 andwas diagnosed about January 2006 after years of chest pain. Like you Ireally do not want to have surgery. For me there have been benefits, Ihave lost 20kg, I feel fitter and am playing more sport, I no longerhave severe heart burn. Of course my wife is very unhappy with me, Icannot sit in a restaurant and eat a meal with friends and I barelyspend more than five minutes away from the sink at night.I have learnt over the last few months how to best manage my diet andseemed to have stopped the weight loss. I certainly don't followDoctors orders. I find three coffees by 12.30, a short soup

for lunchand snacks ( chocloate, a few biscuits ) for the rest of the day. Ireligiously avoid red meat and bread which are disasterous.I have been reflecting on why I have this problem. I have ObstructiveCardioMyopathy as well and thought maybe my heart had grown to large,I though that my occassional depression had contributed, or perhaps mygeneral abuse of alchohol as a teenager. My friends at work have suggested a chiropractor but there seems to bevery little on this site supporting that idea. Anyway you soon grow used to the barium swallows and the manography itreally isn't too bad and for me the nurse is cute.I am going to put off my surgery for as long as I can, the outcomes inmost cases seem to be good, but are not for ever ( up to 7 years). IfI eat small amounts, have very little to eat at night and stay closeto a toilet I feel safe. I have had a few awkward momments in crowdedrooms and on

international flights. btw, the person doing my barium swallow also laughed when they saw thex-ray and my manographer thinks I am great for her experiments.I hope it all goes well for you.If any one else can draw a connection between HOCUM,DEPRESSION andachalasia I would love to hear from them.Buzz BayleyMelbourne - Australia All new "The new Interface is stunning in its simplicity and ease of use." - PC Magazine On 7 360°: Share your blog, photos, interests and what matters most to you <FONT face="comic sans ms" color=#ff0000 size=5> in Georgia </FONT><IMG src=" ">

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