Re: Esophagectomy - for ine

June 24, 2012

Hiya Notan

Â

The Dr discussed the myotomy with me, he said this wouldnt work for me as my

case is not straight forward. He was telling me so much that my useless brain

didnt take it all in and remember it. I know he mentioned a certain part of my

oes. He is also taking it to a meeting with other surgeons to see if there is

any other option for me but said he is sure this is the only way to go for me

and said this will prob b the outcome of the meeting.Â

Â

I have my fingers crossed that they have another solution for me, as this is

such a big op.

Â

I really dont have a clue of where to start for second opinions. Also if i had

to go private i wouldnt b able to raise the funds. If the op is private do u

know roughly how much it would cost.

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Wednesday, 20 June 2012, 23:51

Subject: Esophagectomy - for ine

Â

ine wrote:

>

> .... My consultant said he normally operates on patients once a year

> but normally they have cancer. ...

>

There are a lot more esophagectomies for cancer than there are for

achalasia. Even doctors that treat a lot of achalasia patients don't

necessarily see many esophagectomies. There are some that do though. It

may be worth it to find one that does, even if you have to travel. Most

people with cancer, even if the cancer is cured, don't have a lot a

years left because often they are already old. Others just don't survive

the cancer and the surgery is just to make the remaining time a little

better or a hope to get enough of the cancer that there may be a chance

to survive. At your age you could have a lot of years left. You don't

want a surgery that is just good enough to get you by for a time. You

want one to last the many years you have left at let you live as

normally as possible. If it were me, I would want a surgeon that does

this for people like us that are expected to live many more years and

has done follow-up on them for more than a few years.

> Was told that the muscles in my oesophagus has completely stopped

> working ...

Muscles not working in achalasia are common. Esophagectomies in

achalasia are not common. Most people with achalasia who don't have

working muscles in the esophagus don't have esophagectomies. The main

diagnostic feature of achalasia is a lack of the esophageal muscle

activity in the lower esophagus called peristalsis. We have achalasia

because those muscles are not working. One can question what

" completely " means in this context. You can have not working with

dysfunctional activity or no activity. Some people may have muscles that

are more dysfunctional than others have. In any case only a few will

have esophagectomies.

If the esophagus was hosiery a normal one would be like a knee high

stocking for a skinny girl with the foot cut off. If a person gets to

what is called end-stage achalasia then the lower esophagus is more like

a large Christmas stocking (sigmoid) with a tiny hole in the toe. When

the esophagus is large and bent like that it wouldn't matter if the

muscles could still contract. They wouldn't be able to contract far

enough. By this time the muscles have sometime before stopped working.

At this time treatments are often not as successful and esophagectomy is

sometimes considered, but not always as the first option. Just because a

dilation didn't work does not mean a myotomy will not work. Maybe it

won't but you can't prove that by doing a dilatation that fails.

> ... this operation is now really my only option, or i can continue the

> way i am and suffer. Really dont think that can be an option anymore.

I wouldn't take one doctor's opinion on that unless I just wanted to

give up and be done with the esophagus. I would want to talk to a

surgeon that does esophagectomies for achalasia and does myotomies for

end-stage achalasia when possible. We have people in this support group

that had myotomies and are happy with them after doctors told them they

had to have esophagectomies. We also have some end-stage members that

decided to wait and see after being told to have an esophagectomy and

after some years are still happy they waited.

If you are ready to give up on the esophagus then be sure you understand

what a you will be going through, risking and have to live with if you

have an esophagectomy. Your risks will be much less than some old person

with cancer but there are still some serious risks. There are a number

of members of this group that had esophagectomies and are happy they did

and would do it again. They will also tell you it is hard to get over

and some things will never be the same. There is another person in this

group that has had lots of difficulty fallowing her esophagectomy.

The outcome of laparoscopic Heller myotomy for achalasia is not

influenced by the degree of esophageal dilatation.

http://www.ncbi.nlm.nih.gov/pubmed/17710504

" None required an esophagectomy to maintain clinically adequate swallowing. "

The risk of esophageal resection after esophagomyotomy for achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/19379905

" The overall esophagectomy rate was only 2%. "

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. "

Improving the surgery for sigmoid achalasia: long-term results of a

technical detail.

http://www.ncbi.nlm.nih.gov/pubmed/17931877

" The Heller-Dor operation is effective in the presence of sigmoid

achalasia. "

Minimally invasive surgical treatment of sigmoidal esophagus in achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/19326178

" MIM affords symptomatic improvement in many patients. "

There may be hope that a myotomy would still work for you. Some of the

members in this group who faced similar situations and sought out more

than one opinion received more than one option depending on the

surgeons. If it matters to you I suggest you find someone that is an

expert by experience, in the surgery options for end-stage achalasia,

having done the surgeries multiple times.

notan

June 24, 2012

What country are you in?

Sent from my iPod

On Jun 24, 2012, at 11:09, pauline ferries <pferries31@...> wrote:

> Hiya Notan

>

> The Dr discussed the myotomy with me, he said this wouldnt work for me as my

case is not straight forward. He was telling me so much that my useless brain

didnt take it all in and remember it. I know he mentioned a certain part of my

oes. He is also taking it to a meeting with other surgeons to see if there is

any other option for me but said he is sure this is the only way to go for me

and said this will prob b the outcome of the meeting.

>

> I have my fingers crossed that they have another solution for me, as this is

such a big op.

>

> I really dont have a clue of where to start for second opinions. Also if i had

to go private i wouldnt b able to raise the funds. If the op is private do u

know roughly how much it would cost.

>

> ________________________________

> From: notan ostrich <notan_ostrich@...>

> achalasia

> Sent: Wednesday, 20 June 2012, 23:51

> Subject: Esophagectomy - for ine

>

> ine wrote:

> >

> > .... My consultant said he normally operates on patients once a year

> > but normally they have cancer. ...

> >

>

> There are a lot more esophagectomies for cancer than there are for

> achalasia. Even doctors that treat a lot of achalasia patients don't

> necessarily see many esophagectomies. There are some that do though. It

> may be worth it to find one that does, even if you have to travel. Most

> people with cancer, even if the cancer is cured, don't have a lot a

> years left because often they are already old. Others just don't survive

> the cancer and the surgery is just to make the remaining time a little

> better or a hope to get enough of the cancer that there may be a chance

> to survive. At your age you could have a lot of years left. You don't

> want a surgery that is just good enough to get you by for a time. You

> want one to last the many years you have left at let you live as

> normally as possible. If it were me, I would want a surgeon that does

> this for people like us that are expected to live many more years and

> has done follow-up on them for more than a few years.

>

> > Was told that the muscles in my oesophagus has completely stopped

> > working ...

>

> Muscles not working in achalasia are common. Esophagectomies in

> achalasia are not common. Most people with achalasia who don't have

> working muscles in the esophagus don't have esophagectomies. The main

> diagnostic feature of achalasia is a lack of the esophageal muscle

> activity in the lower esophagus called peristalsis. We have achalasia

> because those muscles are not working. One can question what

> " completely " means in this context. You can have not working with

> dysfunctional activity or no activity. Some people may have muscles that

> are more dysfunctional than others have. In any case only a few will

> have esophagectomies.

>

> If the esophagus was hosiery a normal one would be like a knee high

> stocking for a skinny girl with the foot cut off. If a person gets to

> what is called end-stage achalasia then the lower esophagus is more like

> a large Christmas stocking (sigmoid) with a tiny hole in the toe. When

> the esophagus is large and bent like that it wouldn't matter if the

> muscles could still contract. They wouldn't be able to contract far

> enough. By this time the muscles have sometime before stopped working.

> At this time treatments are often not as successful and esophagectomy is

> sometimes considered, but not always as the first option. Just because a

> dilation didn't work does not mean a myotomy will not work. Maybe it

> won't but you can't prove that by doing a dilatation that fails.

>

> > ... this operation is now really my only option, or i can continue the

> > way i am and suffer. Really dont think that can be an option anymore.

>

> I wouldn't take one doctor's opinion on that unless I just wanted to

> give up and be done with the esophagus. I would want to talk to a

> surgeon that does esophagectomies for achalasia and does myotomies for

> end-stage achalasia when possible. We have people in this support group

> that had myotomies and are happy with them after doctors told them they

> had to have esophagectomies. We also have some end-stage members that

> decided to wait and see after being told to have an esophagectomy and

> after some years are still happy they waited.

>

> If you are ready to give up on the esophagus then be sure you understand

> what a you will be going through, risking and have to live with if you

> have an esophagectomy. Your risks will be much less than some old person

> with cancer but there are still some serious risks. There are a number

> of members of this group that had esophagectomies and are happy they did

> and would do it again. They will also tell you it is hard to get over

> and some things will never be the same. There is another person in this

> group that has had lots of difficulty fallowing her esophagectomy.

>

> The outcome of laparoscopic Heller myotomy for achalasia is not

> influenced by the degree of esophageal dilatation.

> http://www.ncbi.nlm.nih.gov/pubmed/17710504

> " None required an esophagectomy to maintain clinically adequate swallowing. "

>

> The risk of esophageal resection after esophagomyotomy for achalasia.

> http://www.ncbi.nlm.nih.gov/pubmed/19379905

> " The overall esophagectomy rate was only 2%. "

>

> 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. "

>

> Improving the surgery for sigmoid achalasia: long-term results of a

> technical detail.

> http://www.ncbi.nlm.nih.gov/pubmed/17931877

> " The Heller-Dor operation is effective in the presence of sigmoid

> achalasia. "

>

> Minimally invasive surgical treatment of sigmoidal esophagus in achalasia.

> http://www.ncbi.nlm.nih.gov/pubmed/19326178

> " MIM affords symptomatic improvement in many patients. "

>

> There may be hope that a myotomy would still work for you. Some of the

> members in this group who faced similar situations and sought out more

> than one opinion received more than one option depending on the

> surgeons. If it matters to you I suggest you find someone that is an

> expert by experience, in the surgery options for end-stage achalasia,

> having done the surgeries multiple times.

>

> notan

>

June 24, 2012

Hiya

Ime in Scotland, UK

________________________________

From: Faith Weiss <weissf@...>

" achalasia " <achalasia >

Sent: Sunday, 24 June 2012, 17:22

Subject: Re: Esophagectomy - for ine