Re: Re: What I am Thankful for

[Guest guest]

Cara,

 

That was a great informative post to and to everyone else needing to

know this information. I would also add that, while its very important to know

just what stage of achalasia you are in, not to get too " wrapped up " in labels

as to what your stage is.

First of all, its not like you have " end stage cancer " and second, sometimes its

not so much the stage you are in, but rather how well you are actually eating,

and how stable you are (i.e. how likely it is that you will not get any worse).

 

From: spotoca <cspoto@...>

Subject: Re: What I am Thankful for

achalasia

Date: Wednesday, November 23, 2011, 7:44 PM

 

,

Sometimes you can be at end stage and not even know it. That was my case. There

is a list of definitions for each stage. I don't have them memorized but it goes

something like this:

Normal esophagus - 2-3cm wide

Stage 2 - 4-5cm wide

Stage 3 - 6-7cm wide

Stage 4 - anything 8cm or more/or a sigmoid esophagus (twist and turn)

End stager - anything over 8cm and a sigmoid

I am at 10.5cm wide and have a sigmoid loop. I am a perfect candidate for an

esophagectomy. I did not know any of this until I got a barium swallow last

year. I had just been going along 14 years post dilitation thinking nothing was

wrong. I would eat and power chug water to get the food to go down. Some would

and the rest would sit in my esophagus stretching it out.

Thankfully Dr. L was able to perform a successful myotomy on me. I had never had

one prior. I hope to have this myotomy last a very long time. So far its been

one year and I am doing fantastic!

Hope this answers some of your questions. The moral of the story is - get a

barium swallow every year to see how your esophagus is faring and if its

stretching or turning sigmoid. You can't tell any other way.

Cara

> >

> > Just got a call from Dr. L. He looked over my barium tests. He says I am

good to go. Its as good as it gets for a person like me (end stager). I am

swallowing well with no stasis (not much anyway) and I can't ask for better than

that.

> >

> > He wants another barium in 1 year.

> >

> > I feel very blessed.

> >

> > Wising all of you a wonderful thanksgiving and good swallowing.

> >

> > Cara

> >

>

[Guest guest]

Help me understand this - does being an " end stager " mean that you're not a

candidate for a HM?

Thanks,

Kim

________________________________

From: RICHARD FRIEDMAN <cynmark24@...>

achalasia

Sent: Wednesday, November 23, 2011 8:03 PM

Subject: Re: Re: What I am Thankful for

 

Cara,

 

That was a great informative post to and to everyone else needing to

know this information. I would also add that, while its very important to know

just what stage of achalasia you are in, not to get too " wrapped up " in labels

as to what your stage is.

First of all, its not like you have " end stage cancer " and second, sometimes its

not so much the stage you are in, but rather how well you are actually eating,

and how stable you are (i.e. how likely it is that you will not get any worse).

 

From: spotoca <cspoto@...>

Subject: Re: What I am Thankful for

achalasia

Date: Wednesday, November 23, 2011, 7:44 PM

 

,

Sometimes you can be at end stage and not even know it. That was my case. There

is a list of definitions for each stage. I don't have them memorized but it goes

something like this:

Normal esophagus - 2-3cm wide

Stage 2 - 4-5cm wide

Stage 3 - 6-7cm wide

Stage 4 - anything 8cm or more/or a sigmoid esophagus (twist and turn)

End stager - anything over 8cm and a sigmoid

I am at 10.5cm wide and have a sigmoid loop. I am a perfect candidate for an

esophagectomy. I did not know any of this until I got a barium swallow last

year. I had just been going along 14 years post dilitation thinking nothing was

wrong. I would eat and power chug water to get the food to go down. Some would

and the rest would sit in my esophagus stretching it out.

Thankfully Dr. L was able to perform a successful myotomy on me. I had never had

one prior. I hope to have this myotomy last a very long time. So far its been

one year and I am doing fantastic!

Hope this answers some of your questions. The moral of the story is - get a

barium swallow every year to see how your esophagus is faring and if its

stretching or turning sigmoid. You can't tell any other way.

Cara

> >

> > Just got a call from Dr. L. He looked over my barium tests. He says I am

good to go. Its as good as it gets for a person like me (end stager). I am

swallowing well with no stasis (not much anyway) and I can't ask for better than

that.

> >

> > He wants another barium in 1 year.

> >

> > I feel very blessed.

> >

> > Wising all of you a wonderful thanksgiving and good swallowing.

> >

> > Cara

> >

>

[Guest guest]

When you have to have the esophagectomy before you can eat again. I am an

endstager.

from the UK

________________________________

From: lindsaykite <lindsaykite@...>

achalasia

Sent: Wednesday, November 23, 2011 11:54 PM

Subject: Re: What I am Thankful for

 

Wondering what an end stager means in terms of eating and symptoms. How do we

know when we are at the end stage?

>

> Just got a call from Dr. L. He looked over my barium tests. He says I am good

to go. Its as good as it gets for a person like me (end stager). I am swallowing

well with no stasis (not much anyway) and I can't ask for better than that.

>

> He wants another barium in 1 year.

>

> I feel very blessed.

>

> Wising all of you a wonderful thanksgiving and good swallowing.

>

> Cara

>

[Guest guest]

Hi, I am a little confused. If you have gotten a HM surgery, are you still in a

stage?

Thanks

in philly

________________________________

From: Hulmes <christine.hulmes@...>

" achalasia " <achalasia >

Sent: Thursday, November 24, 2011 4:11 AM

Subject: Re: Re: What I am Thankful for

 

When you have to have the esophagectomy before you can eat again. I am an

endstager.

from the UK

________________________________

From: lindsaykite <lindsaykite@...>

achalasia

Sent: Wednesday, November 23, 2011 11:54 PM

Subject: Re: What I am Thankful for

 

Wondering what an end stager means in terms of eating and symptoms. How do we

know when we are at the end stage?

>

> Just got a call from Dr. L. He looked over my barium tests. He says I am good

to go. Its as good as it gets for a person like me (end stager). I am swallowing

well with no stasis (not much anyway) and I can't ask for better than that.

>

> He wants another barium in 1 year.

>

> I feel very blessed.

>

> Wising all of you a wonderful thanksgiving and good swallowing.

>

> Cara

>

[Guest guest]

Leda wrote:

>

> Help me understand this - does being an " end stager " mean that you're

> not a candidate for a HM?

>

The only thing " end stage " refers to is the size and shape of the

esophagus, nothing else. It does not refer to your health, symptoms, the

utility of surgery, the need for an esophagectomy or anything other than

the size and shape. The size and shape of your esophagus can be a factor

in your symptoms, the utility of surgery, and the need for an

esophagectomy but these things are not part of the determination of

stage. It is called end stage because no stages beyond it are defined.

It is the end of the stages, nothing else, not necessarily the end of an

esophagus even if it is the last defined stage for an esophagus.

notan

[Guest guest]

wrote:

>

> Hi, I am a little confused. If you have gotten a HM surgery, are you

> still in a stage?

>

Yes. Even if your esophagus looks normal you are in a stage, stage I.

Stage has nothing to do with having had surgery or not, just the size

and shape of the esophagus. It does not indicate whether one has had

surgery or not. Reduction of esophageal diameter after surgery could

lower the stage, but stating the stage does would not indicate how the

esophagus got that way.

notan

[Guest guest]

Thank you Notan.

Happy Thanksgiving everyone.

Kim

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Thursday, November 24, 2011 10:04 AM

Subject: Re: Re: What I am Thankful for

 

Leda wrote:

>

> Help me understand this - does being an " end stager " mean that you're

> not a candidate for a HM?

>

The only thing " end stage " refers to is the size and shape of the

esophagus, nothing else. It does not refer to your health, symptoms, the

utility of surgery, the need for an esophagectomy or anything other than

the size and shape. The size and shape of your esophagus can be a factor

in your symptoms, the utility of surgery, and the need for an

esophagectomy but these things are not part of the determination of

stage. It is called end stage because no stages beyond it are defined.

It is the end of the stages, nothing else, not necessarily the end of an

esophagus even if it is the last defined stage for an esophagus.

notan

[Guest guest]

Thank you notan. That helped alot.

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Thursday, November 24, 2011 7:11 AM

Subject: Re: Re: What I am Thankful for

 

wrote:

>

> Hi, I am a little confused. If you have gotten a HM surgery, are you

> still in a stage?

>

Yes. Even if your esophagus looks normal you are in a stage, stage I.

Stage has nothing to do with having had surgery or not, just the size

and shape of the esophagus. It does not indicate whether one has had

surgery or not. Reduction of esophageal diameter after surgery could

lower the stage, but stating the stage does would not indicate how the

esophagus got that way.

notan

[Guest guest]

Wow - I was right there with you. My swallowing issues started in May of

this year but hit me hard and quick. A couple more months and I think I would

have lost 60 pounds. I have a lot of pressure in my sphincter as well and kept

down maybe, and I mean maybe 5-10%. Mine was completely closed as well. Since my

last dilation it is much better. I have put some weight back on and am

realizing I don't really have to eat for the calories so now I need to stop

eating the more fattening foods I so love, like carbs! But some foods are really

tough to get down and blenderized is probably in our best interest!!! I am suire

I am not the only one who cuts up all the food on their plate like they are

feeding a 3 or 4 year old????

 

Oh, by the way - I don't get online to read my emails everday so usually I am a

little behind in case anyone was wondering why I am sending a response now.

 

Kim in Keno

 

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Wednesday, November 23, 2011 9:10 PM

Subject: Re: What I am Thankful for

 

Going to agree with everybody, lol! But the thing is " end stage " for an

esophagus may or may not be " end stage " for YOU. . . . My esophagus is hardly

dilated at all. But my LES is FIRMLY closed. Three/four months prior to ER, I

don't think more than 5 or 10% of what I was eating was getting past it. I lost

60 pounds. Almost everything was reverse swallowing. Thing is I was so used to

that, I wasn't thinking how much MORE it was happening. . . . And irony, NONE of

this is painful. I no longer have DES, I swallow easily (this past year), I

hardly cough at night, no heartburn at all. And it *still* came very close to

killing me. This is *not* a condition to mess with, and dat's da troot!

My turkey and everything else this year is blenderized, but it's working. And

I'm very thankful.

xox

> > > >

> > > > Just got a call from Dr. L. He looked over my barium tests. He says I am

good to go. Its as good as it gets for a person like me (end stager). I am

swallowing well with no stasis (not much anyway) and I can't ask for better than

that.

> > > >

> > > > He wants another barium in 1 year.

> > > >

> > > > I feel very blessed.

> > > >

> > > > Wising all of you a wonderful thanksgiving and good swallowing.

> > > >

> > > > Cara

> > > >

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >