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Re: Taniea/ Shimira-MOM's, Notan.. weigh in!

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To Samira, I agree with Carolyn your daughter is so young to go to ectomy.

Please go a real specialist who really nows more about   ACHALASIA. Let me

know

which part of Oklahoma do you reside and I will ask some GI docs here at Univ of

Mich if they can recommend some docs... I've her from some people sometimes if

the  1st myotomy surg wasn't successful, they have to redo the surg again...

PLEASE ask for 2nd or 3rd opinion. Ask your insurance if they will pay for 2nd

opinion.. Good luck ! I know it is hard for a mom to see their child suffering,

i am feeling the same. My daughter will have her myetomy surg this monday and I

am so nervous. All I do is pray to make me strong bcoz my daughter needs me..

________________________________

From: Carolyn <wooleeacre@...>

achalasia

Sent: Thu, February 24, 2011 1:39:02 PM

Subject: Taniea/ Shimira-MOM's, Notan.. weigh in!

 

Hi Shamira,

I will apologize to start for my harshness...

But....    ABSOLUTELY NOT! NO ECTOMY!!!

ok it is out.. I would rather it said I am out of line, than to suggest again..

get to the best..  I know she is in pain, and having problems swallowing..

but....

Like I have mentioned to you before, first you need to get her to a top notch

specialist.. she needs to be assessed first, by a super qualified Experienced

Achalasia Specialist. Scoped- looked at what is happening at the juncture.

 What ever has been done... is done..   Moving forward...

Ectomies are not done frivolously. They are last result. ( of no offense to

anyone here who has had or considering one)

She is but a young child, not yet to puberty, and no matter what- she needs the

best care that can be given. I hope you have had the opportunity to contact the

specialists I sent you.  Dr Patti recommended Pellegrini to you too.. I am sure

he will talk to you.. , Tia's mom also will give you good insight here.

Your doctor intimated that he may have made too small of an incision, therefore,

you need to actively be researching " the cut " and talking and looking for a

good, scratch that... a GREAT peds specialist.

IF YOU ARE NOT GIFTED TO BE A BULL DOG .. Find a friend or family member who

is.. and fight.. for everything..

Do you need travel money? It is ever so presumptuous of me to ask... but can

this group help? 

 Everything we do for Achalasia is forever, there is no going back .. so with

great trepidation, every one takes baby steps... with good reason. ...

Please only consider or entertain an " ectomy " if the best of the best say it is

neccessary for her " quality of life " ... She is but a child, with a long road to

go.

Carolyn

mom of Cameron..

myo'd and fundo'd  '05

I wrote " who knew the delicate

nature and the importance of " the CUT " .. it is everything... It is

everything... Perhaps no one says that too much on the group site, but

the length and position of the myotomy (the cutting of the sphincter) is

everything. How many children has this guy done? Her peristaltic motion

of the esophagus is gone, it was gone before the myotomy and it was

really gone after, so what is the point of the torture of the manometry?

She needs to have an endoscopy right away to see if she has an ulcers

forming, scar tissue growing, and constrictures going on, and maybe a

biopsy!!!! that is the starting point. then a barium swallow. Ask the

group, talk to Notan but I just think she is a little girl and not to

subject her to any more needless tests by ninnies who don't have all the

answers. It is 800 miles from you to Chicago.. 16 hours driving.. or

....

Here are the Dr. at Baylor in Houston...

BRUNO CHUMPITAZI, M.D., M.P.H. chumpita@...

Assistant Professor

Department

of Pediatrics-Gastroenterology, Hepatology and Nutrition Baylor College

of Medicine Director of Neurogastroenterology and Motility Center

Texas Children's Hospital

Kansas City - Children's Mercy Hosp

Holcomb, MD

Administrative Assistant: Jeannette Whitney, (jwhitney@...), 816-234-7002

http://childrensmercy.org/content/view.aspx?id=9482

***BE

Sure to read the authors of this article and the article. You will see

Dr. Patti co Authored this with some of the folks from Kansas. and Dr.

Way.

The article is very good. "

http://www.childrensmercy.org/Content/UploadedFiles/lap.pdf

If you need some other close contacts let me know.. I will find them...

http://www.childrensmercy.org/Content/UploadedFiles/lap.pdfwww.childrensmercy.or\

g

From: shareedanieal <shareedanieal@...>

achalasia

Sent: Wed, February 23, 2011 2:22:01 PM

Subject: Taniea

I am wondering what the groups thoughts are on Taniea having an ectomy. I have

been reading and some seem to act to like it an ectomy gave them better results

then the myotomy. With surgery being a possible treatment plan I was thinking

it may be easier to just get an ectomy? I don't know if its even an option. I

also wondering what the pro's and con's are of having an ectomy. What is

dumping, ect?

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Carolyn wrote:

> But.... ABSOLUTELY NOT! NO ECTOMY!!!

If it were for my child that would be my first thought, but I don't

know, if it would be my final thought, or that it is right for every

child even if it is right for most. I have stayed out of this discussion

because I feel I am in the dark on this. I can't find enough information

about long-term result in children to even guess if this is a good

long-term solution or not for children. Even when esophagectomies have

been done for children for other reasons there does not seem be any

long-term results, good or bad. Most of what I find are case studies of

one or a few cases for at most a few years.

We have adults in this support group that have had esophagectomies who

can tell their stories of how esophagectomy has help them. They can do

that better than I could. We also had someone that had an esophagectomy

who argued against them. Remember Joe? Eight years after his

esophagectomy he was having another surgery to fix a problem with the

esophagectomy and did not survive. Then there was Joan Pearse. We don't

know how the esophagectomy would turned out for her because she didn't

survive the surgery. We dismiss it because she had issues besides the

achalasia, but she was cleared for surgery or she would not have had

it. If we are going to listen to the accounts of good outcomes we

should probably also consider those that can not give an account. Then

we have . At least she has survived but it is hard for me to be

more positive about her story than that lone fact.

So, we don't have long-term studies for children and the adult case

accounts on this site are mixed. Putting that together with the studies

in children and adults that do exist and I don't feel like making a bet

either way.

If the esophagectomy works it can be very good, but you have to survive

and the results may not be good and may not last. There are surgeries to

fix problems after an esophagectomy but the more of these major

surgeries you have the harder it gets to fix things.

It may sound like I am making a case against esophagectomy. I don't mean

to do that. The rewards may justify the risk, but the risks are serious,

and I don't know if esophagectomy is worth the risk or not. Much would

depend on the circumstance of each case. Being a child may or may not be

reason enough to decide one way or another but if it is I don't know

which way.

notan

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I also had to add my part. I was in the hospital for 1 1 /2 months because my

Surgeon would not touch me until I gained enough weight or my chances of a full

recovery were pretty slim. First month was being tube fed and also to preserve

my stomach for the esophagectomy. I have gained almost 30 pounds, but I was

only 97 pounds when I went into the hospital. Now I am normal weight, healthy

and active two years later. Personally, I waited until I was over 40. I

couldn't imagine having an esophagectomy as a child. I was very weak for months

after.

Best of luck to Taniea

Thunder Bay, Ontario

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Dear Notan,

In your research did you investigate " Oesophageal Atresia " where Colon

interposition is carried out due to a genetic birth defect affecting the

esophagus in new born babies?

Being a esophagectomy patient myself I am interested in the long term

consequences of my situation. When I asked in the hospital they said that there

was not many statistics available as most people that had the op had it for

cancer, were older, and did not survive long enough to generate long term

statistics.

I would be interested in anything that you found out.

As regards to Taniea, I do not know enough about her story to make an

intelligent comment, other than to say that I was always told my the medical

staff at Oxford that the Esophagectomy was the surgery of last resort for

Achalasia. Mr Maynard had performed over 500 esophagectomies but I was the

first that he had to perform for Achalasia. Unfortunately I reached " the last

resort " and though it has worked for me so far, the fact that I am the only one

he has done for Achalsia speaks volumes I believe.

regards

tim

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Notan..

and I agree 100%.. I should have qualified my statement more fully with.. until

she has been seen by experts in the field.  The specialists I gave her also

have specialties in atresia, so they know the long terms stats.  Who is to say

'ectomy is not the way to go, or ultimately where anyone will go.. but it is

just not the short answer she may be looking for.  Some times parents need some

help in finding the answers and figuring out the questions. They really just

need an objective ear to hear for them..

Who is ever to say where the road will lead.  Many ectomies have been very

successful and likewise the myotomies and fundo's on children.

Most of these are performed for severe gerd, atresia, reflux, etc. and not for

achalasia!

Carolyn

 

> But.... ABSOLUTELY NOT! NO ECTOMY!!!

If it were for my child that would be my first thought, but I don't

know, if it would be my final thought, or that it is right for every

child even if it is right for most. I have stayed out of this discussion

because I feel I am in the dark on this. I can't find enough information

about long-term result in children to even guess if this is a good

long-term solution or not for children. Even when esophagectomies have

been done for children for other reasons there does not seem be any

long-term results, good or bad. Most of what I find are case studies of

one or a few cases for at most a few years.

We have adults in this support group that have had esophagectomies who

can tell their stories of how esophagectomy has help them. They can do

that better than I could. We also had someone that had an esophagectomy

who argued against them. Remember Joe? Eight years after his

esophagectomy he was having another surgery to fix a problem with the

esophagectomy and did not survive. Then there was Joan Pearse. We don't

know how the esophagectomy would turned out for her because she didn't

survive the surgery. We dismiss it because she had issues besides the

achalasia, but she was cleared for surgery or she would not have had

it. If we are going to listen to the accounts of good outcomes we

should probably also consider those that can not give an account. Then

we have . At least she has survived but it is hard for me to be

more positive about her story than that lone fact.

So, we don't have long-term studies for children and the adult case

accounts on this site are mixed. Putting that together with the studies

in children and adults that do exist and I don't feel like making a bet

either way.

If the esophagectomy works it can be very good, but you have to survive

and the results may not be good and may not last. There are surgeries to

fix problems after an esophagectomy but the more of these major

surgeries you have the harder it gets to fix things.

It may sound like I am making a case against esophagectomy. I don't mean

to do that. The rewards may justify the risk, but the risks are serious,

and I don't know if esophagectomy is worth the risk or not. Much would

depend on the circumstance of each case. Being a child may or may not be

reason enough to decide one way or another but if it is I don't know

which way.

notan

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Hi Notan

I just read your post. Who was " Joe " . I am not familiar with him. All i know is

what you put in the post. I would look further back in the posts but i do not

know his full name to do that. Can you please send me a summary of what happened

to him when he went back for more surgery after his esophagectomy? I am curious

as i may have to have my intestines re-plumbed along with my stomach (which is

already a tube in my chest) due to severe reflux problems. This is unknown

territory for me as i have no knowledge of what surgery is available to treat

reflux once a patient has had the transhiatal esphagectomy. Can you help me in

this Notan as i know you are such a fountain of knowledge. I am due to be

assessed for surgery on May 16th once my endoscopy and dilation results are in

the surgeons hands. Thank you.

from the UK

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Saturday, February 26, 2011 10:22 PM

Subject: Re: Taniea/ Shimira-MOM's, Notan.. weigh in!

 

Carolyn wrote:

> But.... ABSOLUTELY NOT! NO ECTOMY!!!

If it were for my child that would be my first thought, but I don't

know, if it would be my final thought, or that it is right for every

child even if it is right for most. I have stayed out of this discussion

because I feel I am in the dark on this. I can't find enough information

about long-term result in children to even guess if this is a good

long-term solution or not for children. Even when esophagectomies have

been done for children for other reasons there does not seem be any

long-term results, good or bad. Most of what I find are case studies of

one or a few cases for at most a few years.

We have adults in this support group that have had esophagectomies who

can tell their stories of how esophagectomy has help them. They can do

that better than I could. We also had someone that had an esophagectomy

who argued against them. Remember Joe? Eight years after his

esophagectomy he was having another surgery to fix a problem with the

esophagectomy and did not survive. Then there was Joan Pearse. We don't

know how the esophagectomy would turned out for her because she didn't

survive the surgery. We dismiss it because she had issues besides the

achalasia, but she was cleared for surgery or she would not have had

it. If we are going to listen to the accounts of good outcomes we

should probably also consider those that can not give an account. Then

we have . At least she has survived but it is hard for me to be

more positive about her story than that lone fact.

So, we don't have long-term studies for children and the adult case

accounts on this site are mixed. Putting that together with the studies

in children and adults that do exist and I don't feel like making a bet

either way.

If the esophagectomy works it can be very good, but you have to survive

and the results may not be good and may not last. There are surgeries to

fix problems after an esophagectomy but the more of these major

surgeries you have the harder it gets to fix things.

It may sound like I am making a case against esophagectomy. I don't mean

to do that. The rewards may justify the risk, but the risks are serious,

and I don't know if esophagectomy is worth the risk or not. Much would

depend on the circumstance of each case. Being a child may or may not be

reason enough to decide one way or another but if it is I don't know

which way.

notan

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possibly Joe Rodgers... I wasn't around, but there is something in the files

section about his passing in 2008.

kim in canada

> But.... ABSOLUTELY NOT! NO ECTOMY!!!

If it were for my child that would be my first thought, but I don't

know, if it would be my final thought, or that it is right for every

child even if it is right for most. I have stayed out of this discussion

because I feel I am in the dark on this. I can't find enough information

about long-term result in children to even guess if this is a good

long-term solution or not for children. Even when esophagectomies have

been done for children for other reasons there does not seem be any

long-term results, good or bad. Most of what I find are case studies of

one or a few cases for at most a few years.

We have adults in this support group that have had esophagectomies who

can tell their stories of how esophagectomy has help them. They can do

that better than I could. We also had someone that had an esophagectomy

who argued against them. Remember Joe? Eight years after his

esophagectomy he was having another surgery to fix a problem with the

esophagectomy and did not survive. Then there was Joan Pearse. We don't

know how the esophagectomy would turned out for her because she didn't

survive the surgery. We dismiss it because she had issues besides the

achalasia, but she was cleared for surgery or she would not have had

it. If we are going to listen to the accounts of good outcomes we

should probably also consider those that can not give an account. Then

we have . At least she has survived but it is hard for me to be

more positive about her story than that lone fact.

So, we don't have long-term studies for children and the adult case

accounts on this site are mixed. Putting that together with the studies

in children and adults that do exist and I don't feel like making a bet

either way.

If the esophagectomy works it can be very good, but you have to survive

and the results may not be good and may not last. There are surgeries to

fix problems after an esophagectomy but the more of these major

surgeries you have the harder it gets to fix things.

It may sound like I am making a case against esophagectomy. I don't mean

to do that. The rewards may justify the risk, but the risks are serious,

and I don't know if esophagectomy is worth the risk or not. Much would

depend on the circumstance of each case. Being a child may or may not be

reason enough to decide one way or another but if it is I don't know

which way.

notan

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incorrect spelling on the last name... my apologies... *

kim in canada

From: Kim <kimmydawn42@...>

Subject: Re: Taniea/ Shimira-MOM's, Notan.. weigh in!

achalasia

Date: Monday, February 28, 2011, 9:43 AM

 

possibly Joe Rodgers... I wasn't around, but there is something in the

files section about his passing in 2008.

kim in canada

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Tim wrote:

> In your research did you investigate " Oesophageal Atresia " where Colon

interposition is carried out due to a genetic birth defect affecting the

esophagus in new born babies?

Yes, I did. There are some studies that can be considered " long-term "

but even 30 years may not be long enough to know what will happen in 50

years. The studies are also not very large.

Atresia esophagectomy long-term

http://www.ncbi.nlm.nih.gov/pubmed/18852638

Repair of long-gap esophageal atresia: gastric conduits may improve

outcome—a 20-year single center experience

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777230

> Being a esophagectomy patient myself I am interested in the long term

consequences of my situation. When I asked in the hospital they said that there

was not many statistics available as most people that had the op had it for

cancer, were older, and did not survive long enough to generate long term

statistics.

Most people are cancer patients and most of them are older. There are

others though. Among them are people that ingest strong acids or lye.

Often these are children. Because so much scar tissue in the esophagus

sometimes dilatation is not enough to keep the esophagus open and an

esophagectomy is done. There are some small studies on these people but

children and adults get lump together and the studies are not as

long-term as you would like.

Long-term outcome of colon interposition after esophagectomy in children.

http://www.ncbi.nlm.nih.gov/pubmed/18852638

Esophageal replacement with colon interposition in children.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1251116

Oesophageal Replacement in Children

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2216706

Total gastric transposition is better than partial gastric tube

esophagoplasty for esophageal replacement in children.

http://www.ncbi.nlm.nih.gov/pubmed/18197943

Gastric Transposition for Esophageal Replacement in Children

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422608

Colon interposition in the treatment of esophageal caustic strictures:

40 years of experience.

http://www.ncbi.nlm.nih.gov/pubmed/17958730

Late morbidity after colon interposition for corrosive esophageal

injury: risk factors, management, and outcome. A 20-years experience.

http://www.ncbi.nlm.nih.gov/pubmed/20622655

Long-term functional results of transhiatal oesophagectomy and colonic

interposition for caustic oesophageal stricture.

http://www.ncbi.nlm.nih.gov/pubmed/12369001

> ... the medical staff at Oxford that the Esophagectomy was the surgery of

last resort for Achalasia. ...

I think so too. For some people the reason can be different though. One

parson may not be able to get enough food without tube feeding and that

may lead to problems or just not be right for other reasons. Another

person may have too much pain from spasms and does not want to live

doped up. But if you go the esophagectomy route as a child the fix needs

to last for maybe 70 years or more. One problem is that if it goes wrong

or fails at some time, then what? How many times can you safely keep

fixing things. Also, the upper esophagus was never meant to be connected

to the stomach, neither was the colon. Doing so puts it in contact with

an environment that over years may cause cellular changes due to

problems of acid and bile reflux. On the other hand, achalasia can

create an environment in the esophagus that it was not meant to have.

You don't just want to compare esophagectomy to normal controls

long-term you need to compare esophagectomy to achalasia without

esophagectomy long-term, and that study probably does not exist. But I

do have these:

Barrett's esophagus (BE) and carcinoma in the esophageal stump (ES)

after esophagectomy with gastric pull-up in achalasia patients: a study

based on 10 years follow-up.

http://www.ncbi.nlm.nih.gov/pubmed/18618179

Subtotal esophageal resection in motility disorders of the esophagus.

http://www.ncbi.nlm.nih.gov/pubmed/15812166

Preoperative gastric acid secretion and the risk to develop Barrett's

esophagus after esophagectomy for chagasic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/19756883

(I know, its chagas, but we take what we can.)

notan

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Guest guest

Hi Notan

Interesting post about the risks of cancer in the oesophageal stump rising as

the years pass. But how would surgeons deal with reflux in an ectomy patient.

Chriatine from the UK

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, March 1, 2011 12:09 AM

Subject: Re: Re: Taniea/ Shimira-MOM's, Notan.. weigh in!

Tim wrote:

> In your research did you investigate " Oesophageal Atresia " where Colon

interposition is carried out due to a genetic birth defect affecting the

esophagus in new born babies?

Yes, I did. There are some studies that can be considered " long-term "

but even 30 years may not be long enough to know what will happen in 50

years. The studies are also not very large.

Atresia esophagectomy long-term

http://www.ncbi.nlm.nih.gov/pubmed/18852638

Repair of long-gap esophageal atresia: gastric conduits may improve

outcome—a 20-year single center experience

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2777230

> Being a esophagectomy patient myself I am interested in the long term

consequences of my situation.  When I asked in the hospital they said that

there was not many statistics available as most people that had the op had it

for cancer, were older, and did not survive long enough to generate long term

statistics.

Most people are cancer patients and most of them are older. There are

others though. Among them are people that ingest strong acids or lye.

Often these are children. Because so much scar tissue in the esophagus

sometimes dilatation is not enough to keep the esophagus open and an

esophagectomy is done. There are some small studies on these people but

children and adults get lump together and the studies are not as

long-term as you would like.

Long-term outcome of colon interposition after esophagectomy in children.

http://www.ncbi.nlm.nih.gov/pubmed/18852638

Esophageal replacement with colon interposition in children.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1251116

Oesophageal Replacement in Children

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2216706

Total gastric transposition is better than partial gastric tube

esophagoplasty for esophageal replacement in children.

http://www.ncbi.nlm.nih.gov/pubmed/18197943

Gastric Transposition for Esophageal Replacement in Children

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422608

Colon interposition in the treatment of esophageal caustic strictures:

40 years of experience.

http://www.ncbi.nlm.nih.gov/pubmed/17958730

Late morbidity after colon interposition for corrosive esophageal

injury: risk factors, management, and outcome. A 20-years experience.

http://www.ncbi.nlm.nih.gov/pubmed/20622655

Long-term functional results of transhiatal oesophagectomy and colonic

interposition for caustic oesophageal stricture.

http://www.ncbi.nlm.nih.gov/pubmed/12369001

> ...  the medical staff at Oxford that the Esophagectomy was the surgery of

last resort for Achalasia. ...

I think so too. For some people the reason can be different though. One

parson may not be able to get enough food without tube feeding and that

may lead to problems or just not be right for other reasons. Another

person may have too much pain from spasms and does not want to live

doped up. But if you go the esophagectomy route as a child the fix needs

to last for maybe 70 years or more. One problem is that if it goes wrong

or fails at some time, then what? How many times can you safely keep

fixing things. Also, the upper esophagus was never meant to be connected

to the stomach, neither was the colon. Doing so puts it in contact with

an environment that over years may cause cellular changes due to

problems of acid and bile reflux. On the other hand, achalasia can

create an environment in the esophagus that it was not meant to have.

You don't just want to compare esophagectomy to normal controls

long-term you need to compare esophagectomy to achalasia without

esophagectomy long-term, and that study probably does not exist. But I

do have these:

Barrett's esophagus (BE) and carcinoma in the esophageal stump (ES)

after esophagectomy with gastric pull-up in achalasia patients: a study

based on 10 years follow-up.

http://www.ncbi.nlm.nih.gov/pubmed/18618179

Subtotal esophageal resection in motility disorders of the esophagus.

http://www.ncbi.nlm.nih.gov/pubmed/15812166

Preoperative gastric acid secretion and the risk to develop Barrett's

esophagus after esophagectomy for chagasic achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/19756883

(I know, its chagas, but we take what we can.)

notan

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Guest guest

wrote:

> Interesting post about the risks of cancer in the oesophageal stump rising as

the years pass.

One has to weigh that against the possible increase in cancer risk for

just having achalasia or having end stage achalasia. I have heard the

risk of cancer from achalasia used as partial justification for having

an esophagectomy. I don't think these risks are very well defined.

Better studies are needed. Until then, who knows.

> But how would surgeons deal with reflux in an ectomy patient.

Medication and diet first. They can open the pylorus a little with

dilatation or surgery so the gastric tube (stomach) empties faster. That

may increase the risk of bile reflux. Then there is the roux-en-y that

Joe had.

notan

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Guest guest

Thanks Notan. The Roux-En-Y that Joe had is the operation that my surgeon has

mentioned that i will have if i need surgery for the reflux that is why i am

trying to find out as much as possible about the op. done for reflux who have

had ectomies in the past.

from the UK

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Tuesday, March 1, 2011 4:24 PM

Subject: Re: Re: Taniea/ Shimira-MOM's, Notan.. weigh in!

 

wrote:

> Interesting post about the risks of cancer in the oesophageal stump rising as

the years pass.

One has to weigh that against the possible increase in cancer risk for

just having achalasia or having end stage achalasia. I have heard the

risk of cancer from achalasia used as partial justification for having

an esophagectomy. I don't think these risks are very well defined.

Better studies are needed. Until then, who knows.

> But how would surgeons deal with reflux in an ectomy patient.

Medication and diet first. They can open the pylorus a little with

dilatation or surgery so the gastric tube (stomach) empties faster. That

may increase the risk of bile reflux. Then there is the roux-en-y that

Joe had.

notan

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