Re: End-stage statistics

[Guest guest]

notan wrote:

> " ... 10% to 15% of those so treated will present progressive deterioration of

their esophageal function and

> up to 5% may eventually require an esophagectomy. "

I received a reply about this messages in private that brought up the

issue of whether this is positive or negative. Personally I wish the

numbers were even smaller but I think they are better than some in this

support group believe they are. I sometimes get the idea that some feel

most of us are doomed to have an esophagectomy some day. These numbers

do not support that kind of gloom. On the other hand some may have been

told that their treatment was all they would ever need. If so, these

numbers are possibly bad news. For me, the 10% to 15% is better than I

expected.

notan

[Guest guest]

I truly believe its a function of how old you are when you present with the

disease. I would venture to say that eventual esophagectomies are much greater

than 5% in the population of Achalasians that present with the disease before

they are 20.

Granted, there are some where the disease never progresses or some where the

disease progresses rapidly. But if you took the subset of folks that had " A "

before they were 20 you will see a higher % with ectomies.

>

> The fallowing abstract had an interesting statement of end-stage statistics.

>

> End-stage achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/21166740

>

> " Despite symptom improvement offered to achalasia patients by either

> pneumatic dilation or surgical myotomy, 10% to 15% of those so treated

> will present progressive deterioration of their esophageal function and

> up to 5% may eventually require an esophagectomy. "

>

> notan

>

[Guest guest]

spotoca wrote:

> I truly believe its a function of how old you are when you present with the

disease. I would venture to say that eventual esophagectomies are much greater

than 5% in the population of Achalasians that present with the disease before

they are 20.

Some progress quickly, some slowly and some don't seem to progress much

at all. Time would be more of a factor to those that progress slowly. If

you progress quickly it won't matter if you are a child or 40y old. You

will have enough time to get there. However, if that 5% is mostly cases

that started in childhood then this is good news to those that developed

achalasia latter.

notan

[Guest guest]

I didn't start having noticeable problems until I was in my early fifties.By

the time I had my Heller Myotomy and Dor Fundo, my doctor told me my esophagus

was spiraled with pockets and that I was looking at an esophagectomy in the

future because of the condition of it.On my last dilation they noticed that I

have Barrett's but it isn't that bad.I am hoping that I won't need the operation

ever, but if I do I will want to have it done before I retire in 10 years.I am

pretty happy about my swallowing now and my only real problems are heartburn,

nausea, and sometimes the inability to swallow on bad days.We are very fortunate

to have the Doctors to get us back in the shape we are in.

> > I truly believe its a function of how old you are when you present with the

disease. I would venture to say that eventual esophagectomies are much greater

than 5% in the population of Achalasians that present with the disease before

they are 20.

>

> Some progress quickly, some slowly and some don't seem to progress much

> at all. Time would be more of a factor to those that progress slowly. If

> you progress quickly it won't matter if you are a child or 40y old. You

> will have enough time to get there. However, if that 5% is mostly cases

> that started in childhood then this is good news to those that developed

> achalasia latter.

>

> notan

>

[Guest guest]

ly I think it's a shame they haven't come up with a better treatment

than dilatation and/or myotomy and that in this day and age of technology

and medicine we need to even resort to an esophagectomy.

That being said, having had a very successful one myself, nearly 4 years

ago, I am also tired of everyone thinking it is such a bad thing. Of course

I was terrified at first and of course I figured how could I possibly

function normally without an esophagus, but I tell you this, I am healthier

now than I ever was with achalasia and I can eat normally and feel good and

not struggle every time I eat. I am glad I did it and I think there are many

success stories out there. The way I see it, the esophagectomy cured me of

achalasia and now I can live a normal life without having my health consumed

by the struggles of eating and swallowing and even the scary " what-if's " of

possible aspiration, pneumonia and all the other nasty stuff that goes along

with it.

It was no walk in the park and it was a scary decision to make, but it is

not the end of the world to have an esophagectomy.

in NY

From: achalasia [mailto:achalasia ] On Behalf

Of notan ostrich

Sent: Thursday, January 20, 2011 2:40 PM

achalasia

Subject: Re: End-stage achalasia statistics

notan wrote:

> " ... 10% to 15% of those so treated will present progressive deterioration

of their esophageal function and

> up to 5% may eventually require an esophagectomy. "

I received a reply about this messages in private that brought up the

issue of whether this is positive or negative. Personally I wish the

numbers were even smaller but I think they are better than some in this

support group believe they are. I sometimes get the idea that some feel

most of us are doomed to have an esophagectomy some day. These numbers

do not support that kind of gloom. On the other hand some may have been

told that their treatment was all they would ever need. If so, these

numbers are possibly bad news. For me, the 10% to 15% is better than I

expected.

notan

[Guest guest]

I agree with . It was very scary, and I put it off an extra 3 years than

what I should have. Looking back now the only thing I would change is that I

would have had the surgery three years earlier when Dr. Rice recommended it to

me. It was no walk in the park, but I get to enjoy life now and not get the

looks and stares when I'm out eating and would have to keep walking back and

forth to the restroom. The only issue that hasn't changed is my heartburn. But

this is due to my medicine I'm on for my back and other issues. At least now I

feel normal and am enjoying life with my niece and nephew. Ectomy December 2007.

Sent from 's iPhone

On Jan 20, 2011, at 6:38 PM, " Brown " <tracylb@...> wrote:

> ly I think it's a shame they haven't come up with a better treatment

> than dilatation and/or myotomy and that in this day and age of technology

> and medicine we need to even resort to an esophagectomy.

>

> That being said, having had a very successful one myself, nearly 4 years

> ago, I am also tired of everyone thinking it is such a bad thing. Of course

> I was terrified at first and of course I figured how could I possibly

> function normally without an esophagus, but I tell you this, I am healthier

> now than I ever was with achalasia and I can eat normally and feel good and

> not struggle every time I eat. I am glad I did it and I think there are many

> success stories out there. The way I see it, the esophagectomy cured me of

> achalasia and now I can live a normal life without having my health consumed

> by the struggles of eating and swallowing and even the scary " what-if's " of

> possible aspiration, pneumonia and all the other nasty stuff that goes along

> with it.

>

> It was no walk in the park and it was a scary decision to make, but it is

> not the end of the world to have an esophagectomy.

>

> in NY

>

> From: achalasia [mailto:achalasia ] On Behalf

> Of notan ostrich

> Sent: Thursday, January 20, 2011 2:40 PM

> achalasia

> Subject: Re: End-stage achalasia statistics

>

> notan wrote:

> > " ... 10% to 15% of those so treated will present progressive deterioration

> of their esophageal function and

> > up to 5% may eventually require an esophagectomy. "

>

> I received a reply about this messages in private that brought up the

> issue of whether this is positive or negative. Personally I wish the

> numbers were even smaller but I think they are better than some in this

> support group believe they are. I sometimes get the idea that some feel

> most of us are doomed to have an esophagectomy some day. These numbers

> do not support that kind of gloom. On the other hand some may have been

> told that their treatment was all they would ever need. If so, these

> numbers are possibly bad news. For me, the 10% to 15% is better than I

> expected.

>

> notan

>

>

[Guest guest]

Interesting post Notan. I had the transhiatal oesophagectomy done back in

October 2004 with a gastric resection done at the same time. It is therefore

with regret that I inform the group that I am now having such severe reflux

problems that the GP that i have seen this week wants me to see surgeon in

Liverpool ASAP and not wait until April to see him. We are talking replumbing my

intestines here and the op is called Intestinal resection with Gastrectomy

performed on what is left of my stomach. Now bearing in mind that I only have a

bit of stomach left after the ectomy which was made into a new oesophagus, this

new operation will have to be done by the thoracic surgeon who did my ectomy. My

intestinal configuration is weird to say the least so any major operation on my

stomach (that is in my chest) is a really, really major operation and I will be

stepping into the unknown here.

This is a last ditch resort to resolve what has now become a major issue for me

and that is very, very severe reflux that is so unbearable that now amount of

medication is now controlling it. Saying that, I may also have a Hiatus Hernia

and that may be contributing to my reflux problems.

from the UK

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Thu, January 20, 2011 6:00:19 PM

Subject: End-stage achalasia statistics

 

The fallowing abstract had an interesting statement of end-stage statistics.

End-stage achalasia

http://www.ncbi.nlm.nih.gov/pubmed/21166740

" Despite symptom improvement offered to achalasia patients by either

pneumatic dilation or surgical myotomy, 10% to 15% of those so treated

will present progressive deterioration of their esophageal function and

up to 5% may eventually require an esophagectomy. "

notan

[Guest guest]

- I too agree with you. I accommodate so much less now than I used to. I

have fewer food restrictions, NO SPASMS, no other pain of any kind and the rare

bout of dumping I have (maybe once a month now) is mild and over quickly. I was

actually telling someone about my surgery recently and explained that what I

have is very similar to what someone has after gastric bypass - that seems to

help people wrap their brains around it better. Gastric bypass is so common now

that I find that most people know of at least one person who has had it.

I long ago accepted that I would never be 'normal' from a GI perspective but I'm

hugely more 'normal' now than I was before my ectomy.

Cara - I think you make an interesting point about people who develop A before

age 20 being more likely to have an ectomy. I think there might be something to

that but I also think we're finding right now that many of us who had surgery

say 15-20 years ago - too often from doctors who didn't know what they were

doing - are now having to deal with removal and we are at an age where having an

ectomy is practical and relatively safe. Does that make sense? It does seem that

in the past say 5 years on this group - all the ectomy patients have been

between 30 and 65? Maybe it's also the case that this is the age group that

surgeons are the most likely to recommend ectomies. Younger than that and they

don't want to do something so radical yet, older and it's not as safe.

Hmmm. if we were to poll on it, we'd have to control for so many

variables...interesting.

> > " ... 10% to 15% of those so treated will present progressive deterioration

> of their esophageal function and

> > up to 5% may eventually require an esophagectomy. "

>

> I received a reply about this messages in private that brought up the

> issue of whether this is positive or negative. Personally I wish the

> numbers were even smaller but I think they are better than some in this

> support group believe they are. I sometimes get the idea that some feel

> most of us are doomed to have an esophagectomy some day. These numbers

> do not support that kind of gloom. On the other hand some may have been

> told that their treatment was all they would ever need. If so, these

> numbers are possibly bad news. For me, the 10% to 15% is better than I

> expected.

>

> notan

>

>

>

>

>

>

[Guest guest]

I think the reason we see an increase in esophagectomy and the correlation

with age has to do with the huge number of us that were diagnosed in the

time when myotomy was seen as the last resort and dilatation was the

preferred method of treatment, and usually multiple dilitations. I was

diagnosed when I was 15 and I remember them putting the fear of God into my

parents about the myotomy. Back then, which was only in the mid 80's, they

recommended dilitations more often than not, and the importance of follow up

care and regular monitoring was not stressed. So, you ended up with a huge

population of achalasia patients who ended up with such bad achalasia that

the myotomy was not a very viable option, and we were to the point that

dilitations weren't helping.

I am certainly NOT suggesting that the esophagectomy is a cure-all, and I am

not saying it is the right choice for everyone. It is a very serious surgery

with a long recovery. But for those of us who are end-stage who have no

other options, it is a good choice when done by a very experienced surgeon

and it can return us to a more normal state than we ever were with our

esophagus.

From: achalasia [mailto:achalasia ] On Behalf

Of zlmmom1

Sent: Friday, January 21, 2011 8:08 AM

achalasia

Subject: Re: End-stage achalasia statistics

- I too agree with you. I accommodate so much less now than I used to.

I have fewer food restrictions, NO SPASMS, no other pain of any kind and the

rare bout of dumping I have (maybe once a month now) is mild and over

quickly. I was actually telling someone about my surgery recently and

explained that what I have is very similar to what someone has after gastric

bypass - that seems to help people wrap their brains around it better.

Gastric bypass is so common now that I find that most people know of at

least one person who has had it.

I long ago accepted that I would never be 'normal' from a GI perspective but

I'm hugely more 'normal' now than I was before my ectomy.

Cara - I think you make an interesting point about people who develop A

before age 20 being more likely to have an ectomy. I think there might be

something to that but I also think we're finding right now that many of us

who had surgery say 15-20 years ago - too often from doctors who didn't know

what they were doing - are now having to deal with removal and we are at an

age where having an ectomy is practical and relatively safe. Does that make

sense? It does seem that in the past say 5 years on this group - all the

ectomy patients have been between 30 and 65? Maybe it's also the case that

this is the age group that surgeons are the most likely to recommend

ectomies. Younger than that and they don't want to do something so radical

yet, older and it's not as safe.

Hmmm. if we were to poll on it, we'd have to control for so many

variables...interesting.

> > " ... 10% to 15% of those so treated will present progressive

deterioration

> of their esophageal function and

> > up to 5% may eventually require an esophagectomy. "

>

> I received a reply about this messages in private that brought up the

> issue of whether this is positive or negative. Personally I wish the

> numbers were even smaller but I think they are better than some in this

> support group believe they are. I sometimes get the idea that some feel

> most of us are doomed to have an esophagectomy some day. These numbers

> do not support that kind of gloom. On the other hand some may have been

> told that their treatment was all they would ever need. If so, these

> numbers are possibly bad news. For me, the 10% to 15% is better than I

> expected.

>

> notan

>

>

>

>

>

>