Re: Oesophagectomy (Steve)

[Guest guest]

Steve,

I realize it must have been a difficult decision. I wish you the

best moving forward. Keep us updated.

Vicki

> Just a short little update as I have been away for a

while (pondering).

>

> Many thanks to Ed, Carol, is, Jan and to many others. But I

have decided to opt for an oesophagectomy. It has taken me a little

while to get my head around such a radical solution but I guess

there comes a time when it seems a sensible option.

>

> I have several months now to convince myself that this was the

right decison as the surgeon is away for quite a bit of the summer

so we are looking at Autumn for a date. So a few more months of

struggling (today is a bad day, water only today).

>

> Hope everyone is OK. Great to read about 's recovery.

>

> STEVE

>

>

>

>

>

>

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

> Messenger - with free PC-PC calling and photo sharing.

>

[Guest guest]

To Steve,

My name is and I, too, am faced with the daunting decision to

undergo esophagectomy. I would appreciate an opportunity to compare

notes regarding our experiences with achalasia and what got us to

this point. My disease is very advanced and conventional treatments

have not worked for a number of years. My esophagus continues to

dilate and at some point will begin compressing other organs in my

chest if I do nothing about it. The surgery terrifies me. I am even

more complicated because in 1999 I had bariatric surgery for weight

loss and have not used my real stomach since then. Instead a pouch

was created as a pseudo-stomach and I had Roux-en-y gastric bypass.

My weight loss has been outstanding, but we can't be sure my stomach

is viable at this time to replace my esophagus. Plus, the thoracic

surgeon told me that my weight loss surgery would have to be

reversed in order to do the esophagectomy. Is anyone else in this

group in a similar predicament? I look forward to your response(s).

> > Just a short little update as I have been away for

a

> while (pondering).

> >

> > Many thanks to Ed, Carol, is, Jan and to many others. But

I

> have decided to opt for an oesophagectomy. It has taken me a

little

> while to get my head around such a radical solution but I guess

> there comes a time when it seems a sensible option.

> >

> > I have several months now to convince myself that this was the

> right decison as the surgeon is away for quite a bit of the summer

> so we are looking at Autumn for a date. So a few more months of

> struggling (today is a bad day, water only today).

> >

> > Hope everyone is OK. Great to read about 's recovery.

> >

> > STEVE

> >

> >

> >

> >

> >

> >

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

> > Messenger - with free PC-PC calling and photo sharing.

> >

>

[Guest guest]

,

Did you have achalasia before the bariatric surgery?

Terry

> > > Just a short little update as I have been away

for

> a

> > while (pondering).

> > >

> > > Many thanks to Ed, Carol, is, Jan and to many others.

But

> I

> > have decided to opt for an oesophagectomy. It has taken me a

> little

> > while to get my head around such a radical solution but I guess

> > there comes a time when it seems a sensible option.

> > >

> > > I have several months now to convince myself that this was

the

> > right decison as the surgeon is away for quite a bit of the

summer

> > so we are looking at Autumn for a date. So a few more months of

> > struggling (today is a bad day, water only today).

> > >

> > > Hope everyone is OK. Great to read about 's recovery.

> > >

> > > STEVE

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Messenger - with free PC-PC calling and photo sharing.

> > >

> >

>

[Guest guest]

YES, Terry

From:

achalasia [mailto:achalasia ] On Behalf Of nrtl888

Sent: Wednesday, July 12, 2006

4:40 AM

achalasia

Subject: Re:

Oesophagectomy (Steve)

,

Did you have achalasia before the bariatric surgery?

Terry

> > > Just a short little update as I have been away

for

> a

> > while (pondering).

> > >

> > > Many thanks to Ed, Carol, is, Jan and to many others.

But

> I

> > have decided to opt for an oesophagectomy. It has taken me a

> little

> > while to get my head around such a radical solution but I guess

> > there comes a time when it seems a sensible option.

> > >

> > > I have several months now to convince myself that this was

the

> > right decison as the surgeon is away for quite a bit of the

summer

> > so we are looking at Autumn for a date. So a few more months of

> > struggling (today is a bad day, water only today).

> > >

> > > Hope everyone is OK. Great to read about 's recovery.

> > >

> > > STEVE

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Messenger - with free PC-PC calling and photo sharing.

> > >

> >

>

[Guest guest]

, (This is a long posting for other people)

Hi there. I can assure you the surgery terrifies me too. I am a nurse and have cared for oesophagectomy patients in my time so this is a little daunting.

In terms of comparing experiences. I have had achalasia since 1985 (diagnosed in 1987). I was initially managed with dilatations. Then I had surgery in 1993 (Hellers). This was fantastic and as long as I ate with cola drinks I could get almost anything down (oranges and chips were always tricky).

Then in February this year I had arrhythmias and went through a series of heart tests that were all negative, then I went through oesophjageal cancer tests, all negative. However, what the tests for cancer revealed (through the endoscopy) was that my achalasia was quite bad. At this point I had no achalasia symptoms, all was the same as it was 13 years ago. Then the following week, it started to become symptomatic and food was getting stuck and at one point I was hospitalised as I totally blocked off (that had never happened before).

To cut a long story short the series of investigations that I had (including manometry) revealed that there is almost no oesophageal function left at all and the surgeon thinks I have been like this for some time and my oesophagus has been coping with gravity and other mechanisms that have finally failed me. My oesophagus is huge. I had such a shock when I saw it on barium swallow. Then it all made sense. It has started to twist. I have that U bend at the bottom of my oesophagus but it is only small at the moment.

The general consensus is that this will probably get worse and the oeosophagus will continue to twist and grow. The surgeon thinks it may already be stuck to my pericardium (heart). Don't worry this is not that serious to a skilled surgeon he just needs patience.

I had a dilatation to get me over this current period so I could think and since then I have been much better. But prior to that I was getting breathless as the oesophagus was occupying the space in my chest that the lungs wanted to expand into.

Now I am better it is difficult to remember how bad I was back in February. But, I basically had arrhythmias and brethless ness due to an enlarged oeophagus. Now the oeophagus has been slightly relieved some of the more recent swelling has resolved taking the pressure away so I am not having the arrhythmias or breathless. But, I guess this is the type of thing that you have been told can happen.

I am happy to chat further with you if you want to send me a private E-mail as I hate causing alarm to people with my story.

STEVE

Re: Oesophagectomy (Steve)

To Steve,My name is and I, too, am faced with the daunting decision to undergo esophagectomy. I would appreciate an opportunity to compare notes regarding our experiences with achalasia and what got us to this point. My disease is very advanced and conventional treatments have not worked for a number of years. My esophagus continues to dilate and at some point will begin compressing other organs in my chest if I do nothing about it. The surgery terrifies me. I am even more complicated because in 1999 I had bariatric surgery for weight loss and have not used my real stomach since then. Instead a pouch was created as a pseudo-stomach and I had Roux-en-y gastric bypass. My weight loss has been outstanding, but we can't be sure my stomach is viable at this time to replace my esophagus. Plus, the thoracic surgeon told me that my weight loss surgery would have to be reversed in order to do the esophagectomy. Is

anyone else in this group in a similar predicament? I look forward to your response(s).> > Just a short little update as I have been away for a > while (pondering).> > > > Many thanks to Ed,

Carol, is, Jan and to many others. But I > have decided to opt for an oesophagectomy. It has taken me a little > while to get my head around such a radical solution but I guess > there comes a time when it seems a sensible option.> > > > I have several months now to convince myself that this was the > right decison as the surgeon is away for quite a bit of the summer > so we are looking at Autumn for a date. So a few more months of > struggling (today is a bad day, water only today).> > > > Hope everyone is OK. Great to read about 's recovery.> > > > STEVE> > > > > > > > > > > > > > ------------ --------- --------- ---> > Messenger - with free PC-PC calling and photo sharing.> >>

[Guest guest]

Steve,

Thank you so much for sharing your

experience with me. At this point in time, my experience parallels yours

almost to a “T”. I will truly appreciate talking to you privately

through our email addresses. Expect to hear from me sometime over the

weekend.

Thanks,

From: achalasia [mailto:achalasia ] On Behalf Of Steve Lennox

Sent: Saturday, July 15, 2006 2:30

AM

achalasia

Subject: Re: Re:

Oesophagectomy (Steve)

, (This is a long posting for other people)

Hi there. I can assure you the surgery terrifies me too. I

am a nurse and have cared for oesophagectomy patients in my time so this is a

little daunting.

In terms of comparing experiences. I have had achalasia since 1985

(diagnosed in 1987). I was initially managed with dilatations.

Then I had surgery in 1993 (Hellers). This was fantastic and as long as I

ate with cola drinks I could get almost anything down (oranges and chips were

always tricky).

Then in February this year I had arrhythmias and went through a series

of heart tests that were all negative, then I went through oesophjageal

cancer tests, all negative. However, what the tests for cancer revealed

(through the endoscopy) was that my achalasia was quite bad. At this

point I had no achalasia symptoms, all was the same as it was 13 years

ago. Then the following week, it started to become symptomatic and food

was getting stuck and at one point I was hospitalised as I totally blocked off

(that had never happened before).

To cut a long story short the series of investigations that I had

(including manometry) revealed that there is almost no oesophageal function

left at all and the surgeon thinks I have been like this for some time and my

oesophagus has been coping with gravity and other mechanisms that have finally

failed me. My oesophagus is huge. I had such a shock when I saw it

on barium swallow. Then it all made sense. It has started to twist.

I have that U bend at the bottom of my oesophagus but it is only small at the

moment.

The general consensus is that this will probably get worse and the

oeosophagus will continue to twist and grow. The surgeon thinks it may

already be stuck to my pericardium (heart). Don't worry this is not that

serious to a skilled surgeon he just needs patience.

I had a dilatation to get me over this current period so I could think

and since then I have been much better. But prior to that I was

getting breathless as the oesophagus was occupying the space in my chest that

the lungs wanted to expand into.

Now I am better it is difficult to remember how bad I was back in

February. But, I basically had arrhythmias and brethless ness due to an

enlarged oeophagus. Now the oeophagus has been slightly relieved some of

the more recent swelling has resolved taking the pressure away so I am not

having the arrhythmias or breathless. But, I guess this is the type of

thing that you have been told can happen.

I am happy to chat further with you if you want to send me a private

E-mail as I hate causing alarm to people with my story.

STEVE

Re: Oesophagectomy (Steve)

To Steve,

My name is and I, too, am faced with the daunting decision to

undergo esophagectomy. I would appreciate an opportunity to compare

notes regarding our experiences with achalasia and what got us to

this point. My disease is very advanced and conventional treatments

have not worked for a number of years. My esophagus continues to

dilate and at some point will begin compressing other organs in my

chest if I do nothing about it. The surgery terrifies me. I am even

more complicated because in 1999 I had bariatric surgery for weight

loss and have not used my real stomach since then. Instead a pouch

was created as a pseudo-stomach and I had Roux-en-y gastric bypass.

My weight loss has been outstanding, but we can't be sure my stomach

is viable at this time to replace my esophagus. Plus, the thoracic

surgeon told me that my weight loss surgery would have to be

reversed in order to do the esophagectomy. Is anyone else in this

group in a similar predicament? I look forward to your response(s).

> > Just a short little update as I have been away for

a

> while (pondering).

> >

> > Many thanks to Ed, Carol, is, Jan and to many others. But

I

> have decided to opt for an oesophagectomy. It has taken me a

little

> while to get my head around such a radical solution but I guess

> there comes a time when it seems a sensible option.

> >

> > I have several months now to convince myself that this was the

> right decison as the surgeon is away for quite a bit of the summer

> so we are looking at Autumn for a date. So a few more months of

> struggling (today is a bad day, water only today).

> >

> > Hope everyone is OK. Great to read about 's recovery.

> >

> > STEVE

> >

> >

> >

> >

> >

> >

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

> > Messenger - with free PC-PC calling and photo sharing.

> >

>

[Guest guest]

, and Steve,

Sounds like the group of us (and anyone

else I may have left off that is currently facing the e-gectomy decision)

should find a way to do a chat or something.

We are all going through the same thing

(although with various quirks here and there to our stories).

This is a huge decision and talking to one

another does nothing but help. It validates our feelings and is comforting to

know there are others out there trying to make the same “right”

choices for ourselves.

Having others that have been through it,

like , is also helpful because he can share his experiences with us.

Are we no longer able to do chats on the

board?

in NY

From: achalasia [mailto:achalasia ] On Behalf Of smichele2

Sent: Saturday, July 15, 2006 12:30 PM

achalasia

Subject: RE: Re:

Oesophagectomy (Steve)

Steve,

Thank you so much for sharing your experience with me. At

this point in time, my experience parallels yours almost to a “T”.

I will truly appreciate talking to you privately through our email

addresses. Expect to hear from me sometime over the weekend.

Thanks,

From: achalasia

[mailto:achalasia ]

On Behalf Of Steve Lennox

Sent: Saturday, July 15, 2006 2:30 AM

achalasia

Subject: Re: Re:

Oesophagectomy (Steve)

, (This is a

long posting for other people)

Hi there. I

can assure you the surgery terrifies me too. I am a nurse and have cared

for oesophagectomy patients in my time so this is a little daunting.

In terms of

comparing experiences. I have had achalasia since 1985 (diagnosed in

1987). I was initially managed with dilatations. Then I had

surgery in 1993 (Hellers). This was fantastic and as long as I ate with

cola drinks I could get almost anything down (oranges and chips were always

tricky).

Then in February

this year I had arrhythmias and went through a series of heart tests that

were all negative, then I went through oesophjageal cancer tests, all

negative. However, what the tests for cancer revealed (through the

endoscopy) was that my achalasia was quite bad. At this point I had no

achalasia symptoms, all was the same as it was 13 years ago. Then the

following week, it started to become symptomatic and food was getting stuck and

at one point I was hospitalised as I totally blocked off (that had never

happened before).

To cut a long

story short the series of investigations that I had (including manometry)

revealed that there is almost no oesophageal function left at all and the

surgeon thinks I have been like this for some time and my oesophagus has been

coping with gravity and other mechanisms that have finally failed me. My

oesophagus is huge. I had such a shock when I saw it on barium

swallow. Then it all made sense. It has started to twist. I

have that U bend at the bottom of my oesophagus but it is only small at the

moment.

The general

consensus is that this will probably get worse and the oeosophagus will

continue to twist and grow. The surgeon thinks it may already be stuck to

my pericardium (heart). Don't worry this is not that serious to a skilled

surgeon he just needs patience.

I had a dilatation

to get me over this current period so I could think and since then I have been

much better. But prior to that I was getting breathless as the

oesophagus was occupying the space in my chest that the lungs wanted to expand

into.

Now I am better it

is difficult to remember how bad I was back in February. But, I basically

had arrhythmias and brethless ness due to an enlarged oeophagus. Now the

oeophagus has been slightly relieved some of the more recent swelling has

resolved taking the pressure away so I am not having the arrhythmias or

breathless. But, I guess this is the type of thing that you have been

told can happen.

I am happy to chat

further with you if you want to send me a private E-mail as I hate causing

alarm to people with my story.

STEVE

----- Original

Message ----

From: Z <smichele2@...>

achalasia

Sent: Wednesday, 12 July, 2006 3:30:31 AM

Subject: Re: Oesophagectomy (Steve)

To Steve,

My name is and I, too, am faced with the daunting decision to

undergo esophagectomy. I would appreciate an opportunity to compare

notes regarding our experiences with achalasia and what got us to

this point. My disease is very advanced and conventional treatments

have not worked for a number of years. My esophagus continues to

dilate and at some point will begin compressing other organs in my

chest if I do nothing about it. The surgery terrifies me. I am even

more complicated because in 1999 I had bariatric surgery for weight

loss and have not used my real stomach since then. Instead a pouch

was created as a pseudo-stomach and I had Roux-en-y gastric bypass.

My weight loss has been outstanding, but we can't be sure my stomach

is viable at this time to replace my esophagus. Plus, the thoracic

surgeon told me that my weight loss surgery would have to be

reversed in order to do the esophagectomy. Is anyone else in this

group in a similar predicament? I look forward to your response(s).

> > Just a short little update as I have been away for

a

> while (pondering).

> >

> > Many thanks to Ed, Carol, is, Jan and to many others. But

I

> have decided to opt for an oesophagectomy. It has taken me a

little

> while to get my head around such a radical solution but I guess

> there comes a time when it seems a sensible option.

> >

> > I have several months now to convince myself that this was the

> right decison as the surgeon is away for quite a bit of the summer

> so we are looking at Autumn for a date. So a few more months of

> struggling (today is a bad day, water only today).

> >

> > Hope everyone is OK. Great to read about 's recovery.

> >

> > STEVE

> >

> >

> >

> >

> >

> >

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

> > Messenger - with free PC-PC calling and photo sharing.

> >

>

[Guest guest]

, great idea for a chat. You’re in NY and I am in Los Angeles. I do not

know were anyone else is located. We will have to coordinate a day and

time. Another option is that we can initiate a conference call one evening or

on a weekend when we have unlimited time on our cell phones. I am inclined to

believe that our experiences are similar and we can be great support for each

other. Even more important is to be able to chat with some folks who have

actually had the procedure, so if any of you are out there please come forward.

As I said in a previous message, I’m a bit complicated because I had

weight loss surgery in 1999 and in order to do esophagectomy, my weight loss

surgery will have to be reversed, adding more time to the surgery and under

general anesthesia. I look forward to chatting with you all.

Z.

From: achalasia [mailto:achalasia ] On Behalf Of Brown

Sent: Saturday, July 15, 2006

11:48 AM

achalasia

Subject: RE: Re:

Oesophagectomy (Steve)

, and Steve,

Sounds like the group of us (and anyone else I may have left off

that is currently facing the e-gectomy decision) should find a way to do a chat

or something.

We are all going through the same thing (although with various

quirks here and there to our stories).

This is a huge decision and talking to one another does nothing but

help. It validates our feelings and is comforting to know there are others out

there trying to make the same “right” choices for ourselves.

Having others that have been through it, like , is also helpful

because he can share his experiences with us.

Are we no longer able to do chats on the board?

in NY

From: achalasia

[mailto:achalasia ]

On Behalf Of smichele2

Sent: Saturday, July 15, 2006

12:30 PM

achalasia

Subject: RE: Re:

Oesophagectomy (Steve)

Steve,

Thank you so much for sharing your experience with me. At

this point in time, my experience parallels yours almost to a “T”.

I will truly appreciate talking to you privately through our email

addresses. Expect to hear from me sometime over the weekend.

Thanks,

From: achalasia

[mailto:achalasia ]

On Behalf Of Steve Lennox

Sent: Saturday, July 15, 2006

2:30 AM

achalasia

Subject: Re: Re:

Oesophagectomy (Steve)

, (This is a

long posting for other people)

Hi there. I

can assure you the surgery terrifies me too. I am a nurse and have cared

for oesophagectomy patients in my time so this is a little daunting.

In terms of

comparing experiences. I have had achalasia since 1985 (diagnosed in

1987). I was initially managed with dilatations. Then I had surgery

in 1993 (Hellers). This was fantastic and as long as I ate with cola

drinks I could get almost anything down (oranges and chips were always tricky).

Then in February

this year I had arrhythmias and went through a series of heart tests that

were all negative, then I went through oesophjageal cancer tests, all

negative. However, what the tests for cancer revealed (through the

endoscopy) was that my achalasia was quite bad. At this point I had no

achalasia symptoms, all was the same as it was 13 years ago. Then the

following week, it started to become symptomatic and food was getting stuck and

at one point I was hospitalised as I totally blocked off (that had never

happened before).

To cut a long

story short the series of investigations that I had (including manometry)

revealed that there is almost no oesophageal function left at all and the

surgeon thinks I have been like this for some time and my oesophagus has been

coping with gravity and other mechanisms that have finally failed me. My

oesophagus is huge. I had such a shock when I saw it on barium

swallow. Then it all made sense. It has started to twist. I

have that U bend at the bottom of my oesophagus but it is only small at the

moment.

The general

consensus is that this will probably get worse and the oeosophagus will

continue to twist and grow. The surgeon thinks it may already be stuck to

my pericardium (heart). Don't worry this is not that serious to a skilled

surgeon he just needs patience.

I had a dilatation

to get me over this current period so I could think and since then I have been

much better. But prior to that I was getting breathless as the

oesophagus was occupying the space in my chest that the lungs wanted to expand

into.

Now I am better it

is difficult to remember how bad I was back in February. But, I basically

had arrhythmias and brethless ness due to an enlarged oeophagus. Now the

oeophagus has been slightly relieved some of the more recent swelling has

resolved taking the pressure away so I am not having the arrhythmias or

breathless. But, I guess this is the type of thing that you have been

told can happen.

I am happy to chat

further with you if you want to send me a private E-mail as I hate causing

alarm to people with my story.

STEVE

----- Original

Message ----

From: Z <smichele2@...>

achalasia

Sent: Wednesday, 12 July, 2006 3:30:31 AM

Subject: Re: Oesophagectomy (Steve)

To Steve,

My name is and I, too, am faced with the daunting decision to

undergo esophagectomy. I would appreciate an opportunity to compare

notes regarding our experiences with achalasia and what got us to

this point. My disease is very advanced and conventional treatments

have not worked for a number of years. My esophagus continues to

dilate and at some point will begin compressing other organs in my

chest if I do nothing about it. The surgery terrifies me. I am even

more complicated because in 1999 I had bariatric surgery for weight

loss and have not used my real stomach since then. Instead a pouch

was created as a pseudo-stomach and I had Roux-en-y gastric bypass.

My weight loss has been outstanding, but we can't be sure my stomach

is viable at this time to replace my esophagus. Plus, the thoracic

surgeon told me that my weight loss surgery would have to be

reversed in order to do the esophagectomy. Is anyone else in this

group in a similar predicament? I look forward to your response(s).

> > Just a short little update as I have been away for

a

> while (pondering).

> >

> > Many thanks to Ed, Carol, is, Jan and to many others. But

I

> have decided to opt for an oesophagectomy. It has taken me a

little

> while to get my head around such a radical solution but I guess

> there comes a time when it seems a sensible option.

> >

> > I have several months now to convince myself that this was the

> right decison as the surgeon is away for quite a bit of the summer

> so we are looking at Autumn for a date. So a few more months of

> struggling (today is a bad day, water only today).

> >

> > Hope everyone is OK. Great to read about 's recovery.

> >

> > STEVE

> >

> >

> >

> >

> >

> >

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

> > Messenger - with free PC-PC calling and photo sharing.

> >

>

[Guest guest]

Add me to your list. I am also facing this big decision. I have been following the posts but have not written much. I have been going to write to as it sounds like the same thing I have. Any of you may e-mail me at hedied4u@.... Carol in Colorado Brown <tracylb@...> wrote: , and Steve, Sounds like the group of us (and anyone else I may have left off that is currently facing the e-gectomy decision) should find a way to do a chat or something. We are all going through the same thing (although with various quirks here and there to our stories). This is a huge decision and talking to one another does nothing but help. It validates our feelings and is comforting to know there are others out there trying to make the same “right” choices for

ourselves. Having others that have been through it, like , is also helpful because he can share his experiences with us. Are we no longer able to do chats on the board? in NY From: achalasia [mailto:achalasia ] On Behalf Of smichele2Sent: Saturday, July 15, 2006 12:30 PMachalasia Subject: RE: Re: Oesophagectomy (Steve) Steve, Thank you so much for sharing your experience with me. At this point in time, my experience parallels yours almost to a “T”. I will truly appreciate talking to you

privately through our email addresses. Expect to hear from me sometime over the weekend. Thanks, From: achalasia [mailto:achalasia ] On Behalf Of Steve LennoxSent: Saturday, July 15, 2006 2:30 AMachalasia Subject: Re: Re: Oesophagectomy (Steve) , (This is a long posting for other people) Hi there. I can assure you the surgery terrifies me too. I am a nurse and have cared for oesophagectomy patients in my time so this is a little daunting. In terms of comparing

experiences. I have had achalasia since 1985 (diagnosed in 1987). I was initially managed with dilatations. Then I had surgery in 1993 (Hellers). This was fantastic and as long as I ate with cola drinks I could get almost anything down (oranges and chips were always tricky). Then in February this year I had arrhythmias and went through a series of heart tests that were all negative, then I went through oesophjageal cancer tests, all negative. However, what the tests for cancer revealed (through the endoscopy) was that my achalasia was quite bad. At this point I had no achalasia symptoms, all was the same as it was 13 years ago. Then the following week, it

started to become symptomatic and food was getting stuck and at one point I was hospitalised as I totally blocked off (that had never happened before). To cut a long story short the series of investigations that I had (including manometry) revealed that there is almost no oesophageal function left at all and the surgeon thinks I have been like this for some time and my oesophagus has been coping with gravity and other mechanisms that have finally failed me. My oesophagus is huge. I had such a shock when I saw it on barium swallow. Then it all made sense. It has started to twist. I have that U bend at the bottom of my oesophagus but it is only small at the

moment. The general consensus is that this will probably get worse and the oeosophagus will continue to twist and grow. The surgeon thinks it may already be stuck to my pericardium (heart). Don't worry this is not that serious to a skilled surgeon he just needs patience. I had a dilatation to get me over this current period so I could think and since then I have been much better. But prior to that I

was getting breathless as the oesophagus was occupying the space in my chest that the lungs wanted to expand into. Now I am better it is difficult to remember how bad I was back in February. But, I basically had arrhythmias and brethless ness due to an enlarged oeophagus. Now the oeophagus has been slightly relieved some of the more recent swelling has resolved taking the pressure away so I am not having the arrhythmias or breathless. But, I guess this is the type of thing that you have been told can happen. I am happy to chat further with you if you want to send me a private E-mail as I hate causing alarm to people with my story. STEVE Re: Oesophagectomy (Steve) To Steve,My name is and I, too, am faced with the daunting decision to undergo esophagectomy. I would appreciate an opportunity to compare notes regarding our experiences with achalasia and what got us to this point. My disease is very advanced and conventional treatments have not worked for a number of years. My esophagus continues to dilate and at some point will begin compressing other organs in my chest if I do nothing about it. The surgery terrifies me. I am even more complicated because in 1999 I had bariatric surgery for weight loss and have not used my real stomach since then. Instead a pouch was created as a pseudo-stomach and I had Roux-en-y gastric bypass. My weight loss has been outstanding, but we can't be sure my stomach

is viable at this time to replace my esophagus. Plus, the thoracic surgeon told me that my weight loss surgery would have to be reversed in order to do the esophagectomy. Is anyone else in this group in a similar predicament? I look forward to your response(s).> > Just a short little update as I have been away for a > while (pondering).> > > > Many thanks to Ed, Carol, is, Jan and to many others. But I > have decided to opt for an oesophagectomy. It has taken me a little > while to get my head around such a radical solution but I guess > there comes a time when it seems a sensible option.> > > > I have several months now to convince myself that this was the > right decison as the surgeon is away for quite a bit of the summer > so we are looking at Autumn for a date. So a few more months of > struggling (today is a bad day, water only today).> > > > Hope everyone is OK. Great to read about 's recovery.> > > > STEVE> > > > > > > > > > > > > > ------------ --------- ---------

---> > Messenger - with free PC-PC calling and photo sharing.> >> __________________________________________________

[Guest guest]

Add me to the list I will see Dr Richter Monday Hope I hear good news Dr Katz from NY wants to do Oesophagectomy Now let me get this straight Dr Katz doesn't know what he will do When I am in the O.R And a sleep He sees my "E" He will then decide what to do ...another Heller??? Remove the sphincter?? Or the "E" I am not comfortable not being in control Soooo hope Dr Richter can sort this out Last time I had A Ba Swallow 3 years ago my "E" wasn't THAT big I can't have any solids am on liquids for about 1 year or more It's getting worse... Eating solids that is

-- RE: Re: Oesophagectomy (Steve)

, and Steve,

Sounds like the group of us (and anyone else I may have left off that is currently facing the e-gectomy decision) should find a way to do a chat or something.

We are all going through the same thing (although with various quirks here and there to our stories).

This is a huge decision and talking to one another does nothing but help. It validates our feelings and is comforting to know there are others out there trying to make the same “right” choices for ourselves.

Having others that have been through it, like , is also helpful because he can share his experiences with us.

Are we no longer able to do chats on the board?

in NY

From: achalasia [mailto:achalasia ] On Behalf Of smichele2Sent: Saturday, July 15, 2006 12:30 PMachalasia Subject: RE: Re: Oesophagectomy (Steve)

Steve,

Thank you so much for sharing your experience with me. At this point in time, my experience parallels yours almost to a “T”. I will truly appreciate talking to you privately through our email addresses. Expect to hear from me sometime over the weekend.

Thanks,

From: achalasia [mailto:achalasia ] On Behalf Of Steve LennoxSent: Saturday, July 15, 2006 2:30 AMachalasia Subject: Re: Re: Oesophagectomy (Steve)

, (This is a long posting for other people)

Hi there. I can assure you the surgery terrifies me too. I am a nurse and have cared for oesophagectomy patients in my time so this is a little daunting.

In terms of comparing experiences. I have had achalasia since 1985 (diagnosed in 1987). I was initially managed with dilatations. Then I had surgery in 1993 (Hellers). This was fantastic and as long as I ate with cola drinks I could get almost anything down (oranges and chips were always tricky).

Then in February this year I had arrhythmias and went through a series of heart tests that were all negative, then I went through oesophjageal cancer tests, all negative. However, what the tests for cancer revealed (through the endoscopy) was that my achalasia was quite bad. At this point I had no achalasia symptoms, all was the same as it was 13 years ago. Then the following week, it started to become symptomatic and food was getting stuck and at one point I was hospitalised as I totally blocked off (that had never happened before).

To cut a long story short the series of investigations that I had (including manometry) revealed that there is almost no oesophageal function left at all and the surgeon thinks I have been like this for some time and my oesophagus has been coping with gravity and other mechanisms that have finally failed me. My oesophagus is huge. I had such a shock when I saw it on barium swallow. Then it all made sense. It has started to twist. I have that U bend at the bottom of my oesophagus but it is only small at the moment.

The general consensus is that this will probably get worse and the oeosophagus will continue to twist and grow. The surgeon thinks it may already be stuck to my pericardium (heart). Don't worry this is not that serious to a skilled surgeon he just needs patience.

I had a dilatation to get me over this current period so I could think and since then I have been much better. But prior to that I was getting breathless as the oesophagus was occupying the space in my chest that the lungs wanted to expand into.

Now I am better it is difficult to remember how bad I was back in February. But, I basically had arrhythmias and brethless ness due to an enlarged oeophagus. Now the oeophagus has been slightly relieved some of the more recent swelling has resolved taking the pressure away so I am not having the arrhythmias or breathless. But, I guess this is the type of thing that you have been told can happen.

I am happy to chat further with you if you want to send me a private E-mail as I hate causing alarm to people with my story.

STEVE

Re: Oesophagectomy (Steve)

To Steve,My name is and I, too, am faced with the daunting decision to undergo esophagectomy. I would appreciate an opportunity to compare notes regarding our experiences with achalasia and what got us to this point. My disease is very advanced and conventional treatments have not worked for a number of years. My esophagus continues to dilate and at some point will begin compressing other organs in my chest if I do nothing about it. The surgery terrifies me. I am even more complicated because in 1999 I had bariatric surgery for weight loss and have not used my real stomach since then. Instead a pouch was created as a pseudo-stomach and I had Roux-en-y gastric bypass. My weight loss has been outstanding, but we can't be sure my stomach is viable at this time to replace my esophagus. Plus, the thoracic surgeon told me that my weight loss surgery would have to be reversed in order to do the esophagectomy. Is anyone else in this group in a similar predicament? I look forward to your response(s).> > Just a short little update as I have been away for a > while (pondering).> > > > Many thanks to Ed, Carol, is, Jan and to many others. But I > have decided to opt for an oesophagectomy. It has taken me a little > while to get my head around such a radical solution but I guess > there comes a time when it seems a sensible option.> > > > I have several months now to convince myself that this was the > right decison as the surgeon is away for quite a bit of the summer > so we are looking at Autumn for a date. So a few more months of > struggling (today is a bad day, water only today).> > > > Hope everyone is OK. Great to read about 's recovery.> > > > STEVE> > > > > > > > > > > > > > ------------ --------- --------- ---> > Messenger - with free PC-PC calling and photo sharing.> >>

[Guest guest]

Me too I live in Central,NJ

-- RE: Re: Oesophagectomy (Steve)

, great idea for a chat. You’re in NY and I am in Los Angeles. I do not know were anyone else is located. We will have to coordinate a day and time. Another option is that we can initiate a conference call one evening or on a weekend when we have unlimited time on our cell phones. I am inclined to believe that our experiences are similar and we can be great support for each other. Even more important is to be able to chat with some folks who have actually had the procedure, so if any of you are out there please come forward. As I said in a previous message, I’m a bit complicated because I had weight loss surgery in 1999 and in order to do esophagectomy, my weight loss surgery will have to be reversed, adding more time to the surgery and under general anesthesia. I look forward to chatting with you all.

Z.

From: achalasia [mailto:achalasia ] On Behalf Of BrownSent: Saturday, July 15, 2006 11:48 AMachalasia Subject: RE: Re: Oesophagectomy (Steve)

, and Steve,

Sounds like the group of us (and anyone else I may have left off that is currently facing the e-gectomy decision) should find a way to do a chat or something.

We are all going through the same thing (although with various quirks here and there to our stories).

This is a huge decision and talking to one another does nothing but help. It validates our feelings and is comforting to know there are others out there trying to make the same “right” choices for ourselves.

Having others that have been through it, like , is also helpful because he can share his experiences with us.

Are we no longer able to do chats on the board?

in NY

From: achalasia [mailto:achalasia ] On Behalf Of smichele2Sent: Saturday, July 15, 2006 12:30 PMachalasia Subject: RE: Re: Oesophagectomy (Steve)

Steve,

Thank you so much for sharing your experience with me. At this point in time, my experience parallels yours almost to a “T”. I will truly appreciate talking to you privately through our email addresses. Expect to hear from me sometime over the weekend.

Thanks,

From: achalasia [mailto:achalasia ] On Behalf Of Steve LennoxSent: Saturday, July 15, 2006 2:30 AMachalasia Subject: Re: Re: Oesophagectomy (Steve)

, (This is a long posting for other people)

Hi there. I can assure you the surgery terrifies me too. I am a nurse and have cared for oesophagectomy patients in my time so this is a little daunting.

In terms of comparing experiences. I have had achalasia since 1985 (diagnosed in 1987). I was initially managed with dilatations. Then I had surgery in 1993 (Hellers). This was fantastic and as long as I ate with cola drinks I could get almost anything down (oranges and chips were always tricky).

Then in February this year I had arrhythmias and went through a series of heart tests that were all negative, then I went through oesophjageal cancer tests, all negative. However, what the tests for cancer revealed (through the endoscopy) was that my achalasia was quite bad. At this point I had no achalasia symptoms, all was the same as it was 13 years ago. Then the following week, it started to become symptomatic and food was getting stuck and at one point I was hospitalised as I totally blocked off (that had never happened before).

To cut a long story short the series of investigations that I had (including manometry) revealed that there is almost no oesophageal function left at all and the surgeon thinks I have been like this for some time and my oesophagus has been coping with gravity and other mechanisms that have finally failed me. My oesophagus is huge. I had such a shock when I saw it on barium swallow. Then it all made sense. It has started to twist. I have that U bend at the bottom of my oesophagus but it is only small at the moment.

The general consensus is that this will probably get worse and the oeosophagus will continue to twist and grow. The surgeon thinks it may already be stuck to my pericardium (heart). Don't worry this is not that serious to a skilled surgeon he just needs patience.

I had a dilatation to get me over this current period so I could think and since then I have been much better. But prior to that I was getting breathless as the oesophagus was occupying the space in my chest that the lungs wanted to expand into.

Now I am better it is difficult to remember how bad I was back in February. But, I basically had arrhythmias and brethless ness due to an enlarged oeophagus. Now the oeophagus has been slightly relieved some of the more recent swelling has resolved taking the pressure away so I am not having the arrhythmias or breathless. But, I guess this is the type of thing that you have been told can happen.

I am happy to chat further with you if you want to send me a private E-mail as I hate causing alarm to people with my story.

STEVE

Re: Oesophagectomy (Steve)

To Steve,My name is and I, too, am faced with the daunting decision to undergo esophagectomy. I would appreciate an opportunity to compare notes regarding our experiences with achalasia and what got us to this point. My disease is very advanced and conventional treatments have not worked for a number of years. My esophagus continues to dilate and at some point will begin compressing other organs in my chest if I do nothing about it. The surgery terrifies me. I am even more complicated because in 1999 I had bariatric surgery for weight loss and have not used my real stomach since then. Instead a pouch was created as a pseudo-stomach and I had Roux-en-y gastric bypass. My weight loss has been outstanding, but we can't be sure my stomach is viable at this time to replace my esophagus. Plus, the thoracic surgeon told me that my weight loss surgery would have to be reversed in order to do the esophagectomy. Is anyone else in this group in a similar predicament? I look forward to your response(s).> > Just a short little update as I have been away for a > while (pondering).> > > > Many thanks to Ed, Carol, is, Jan and to many others. But I > have decided to opt for an oesophagectomy. It has taken me a little > while to get my head around such a radical solution but I guess > there comes a time when it seems a sensible option.> > > > I have several months now to convince myself that this was the > right decison as the surgeon is away for quite a bit of the summer > so we are looking at Autumn for a date. So a few more months of > struggling (today is a bad day, water only today).> > > > Hope everyone is OK. Great to read about 's recovery.> > > > STEVE> > > > > > > > > > > > > > ------------ --------- --------- ---> > Messenger - with free PC-PC calling and photo sharing.> >>

[Guest guest]

Hi Steve, Carol, , , and . I have remained

quiet on the board for many months, but I try to read quite a few of

the posts. I am also facing having an esophagectomy. I have just

turned 40. I am 5'7 " and weigh about 115 pounds right now. I am

having a difficult summer as I have a hard time drinking and eating

enough in the heat. I live in Thunder Bay, Ontario. I have had two

unsuccessful open myotomies. Dr. Gehman was very blunt and promised

no guarantees for long term success. My " new " esophagus would

eventually stretch and I might only get about 5 " good " years. What

then? I'd only be 45 years old in the same predicament I'm at now.

So, I'm just coping on a daily basis with my crackers, soup, cheese,

pop, milk. Crunching ice helps too. I've stopped taking Nexium as I

didn't feel any different when using it and my nightmares have

stopped. I don't eat anything I " know " won't stay down like meat,

bread, vegetables, fruit. I eat several small " meals " each day and

also drink hot chocolate each night just for the extra calories. I

have ensure and boost as well. I'm healthier at 125 lbs, but the heat

is making it difficult to keep the pounds on! I also wanted to wish

a speedy recovery! All the best to everyone, .

P.S. Congratulations and Brent on the birth of your son.

[Guest guest]

Hey , and Steve:

It would be much appreciated by those of us in the group who have not gotten to

this

point (hopefully, most of us never will) if you all could continue to chronicle

and post

regarding your processes. Possibly we could set up a file/database that could be

accessed

for those who are facing this difficult procedure and decision.

Our hearts go out to each one of you, and wish you all the best of success and

health.

Some of us on this site learned a great deal from the process of decision making

and fact

finding by our beloved Joan Pearce of So. Africa, who was a published author and

RN.

Unfortunately, we lost Joan due to the hospital's lack of control over infection

(a big

problem in So. Africa), her ill health and complications after this significant

procedure

caused her death a little over a year ago. Many, such as you three, who have

faced this

decision since then have had to reinvent the wheel of information gathering. It

would be a

great service.

We are here to support you. Take good care.

Peggy from Lompoc

> > > Just a short little update as I have been away for

> a

> > while (pondering).

> > >

> > > Many thanks to Ed, Carol, is, Jan and to many others. But

> I

> > have decided to opt for an oesophagectomy. It has taken me a

> little

> > while to get my head around such a radical solution but I guess

> > there comes a time when it seems a sensible option.

> > >

> > > I have several months now to convince myself that this was the

> > right decison as the surgeon is away for quite a bit of the summer

> > so we are looking at Autumn for a date. So a few more months of

> > struggling (today is a bad day, water only today).

> > >

> > > Hope everyone is OK. Great to read about 's recovery.

> > >

> > > STEVE

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Messenger - with free PC-PC calling and photo sharing.

> > >

> >

>

[Guest guest]

,

Nice to hear from you. Like you I am finding the heat a little tricky. On some days I am having to keep a fluiod chart to make sure I am drinking enough. I'm in London and we are having our hottest July in well over 100 years. I am trying to drink as much as possible but it is really tricky when your drinks just build up in your oesophagus.

Have you progressed your decision yet?

STEVE

Re: Oesophagectomy (Steve)

Hi Steve, Carol, , , and . I have remained quiet on the board for many months, but I try to read quite a few of the posts. I am also facing having an esophagectomy. I have just turned 40. I am 5'7" and weigh about 115 pounds right now. I am having a difficult summer as I have a hard time drinking and eating enough in the heat. I live in Thunder Bay, Ontario. I have had two unsuccessful open myotomies. Dr. Gehman was very blunt and promised no guarantees for long term success. My "new" esophagus would eventually stretch and I might only get about 5 "good" years. What then? I'd only be 45 years old in the same predicament I'm at now. So, I'm just coping on a daily basis with my crackers, soup, cheese, pop, milk. Crunching ice helps too. I've stopped taking Nexium as I didn't feel any different when using it and my nightmares have stopped. I don't eat anything I "know" won't stay down like meat,

bread, vegetables, fruit. I eat several small "meals" each day and also drink hot chocolate each night just for the extra calories. I have ensure and boost as well. I'm healthier at 125 lbs, but the heat is making it difficult to keep the pounds on! I also wanted to wish a speedy recovery! All the best to everyone, . P.S. Congratulations and Brent on the birth of your son.