Re: Not sure I am making the right decision

[Guest guest]

Cara,

There are several things you have to remind yourself of.

First of all, and probably most important, is that everyone is different.

Just as achalasia effects us all differently as far as our symptoms and how

severe they are, it also progresses differently for everyone. Some people

can manage to go years without major issues and only minimal swallowing

issues, and others progress very quickly and can’t even get water down.

There is no textbook case of exactly how it should be or how it should

progress…..as we all know, there are no rules in achalasia.

Secondly, there is no CURE for achalasia. While some people have the myotomy

and do very well for years, others have it and find themselves having

symptoms again after a shorter period of time. I didn’t even have the

myotomy….like you, Dr. Rice wanted to try for it with me if it would be

possible, however after doing his testing on me he determined that my best

outcome would be the ‘ectomy. This was not the first time I had heard it, so

it wasn’t a surprise. Disappointing, yes, but not a surprise. I do not

believe he would tell you to go for the myotomy if he didn’t truly believe

he could help you and maintain your esophagus for a period of time. That

being said, none of us have a crystal ball and there are never any

guarantees. He will do his best by you, and he does care about your outcome,

but he is not God.

I do believe you should seek out additional opinions from Dr. L and even

another doctor if you can. I cannot remember where you are from, but I also

saw Dr. s at Strong Memorial in Rochester, NY. He used to be a

big wig at USC in CA and then relocated east. I don’t hear his name a lot on

the board but he is well respected in the field.

However, I just see that not only have you been doubting Dr. Rice’s opinion,

but you don’t seem to feel a good connection with him. Nobody is pushing you

into anything, and nobody is telling you when you have to make a choice. So

if things are status quo right now, take your time, do the research and see

a few other doctors so you can really make a good decision for yourself.

Regardless of what surgery you are facing, the myotomy or the ‘ectomy, you

owe it to yourself to feel ok with your decision, and right now you are not

at that place. After I saw Dr. s in Rochester, NY and he first told me

‘ectomy, it took me close to two more years to come to terms with that and

go seek out another opinion with Dr. Rice. I was scared out of my mind, but

that is normal. My biggest fears had to do with how I would be afterwards

and would it make me feel worse, because like you I had minimal symptoms. As

crazy as it sounds when you are going to have surgery, some of it is a leap

of faith. It’s not like when you have appendicitis and you have to get it

removed immediately or else…..in our case it is a matter of how bad it is

and when you choose to do it. There are pros and cons to both

situations……the cons being the doubt and fear and indecision over what’s

right, and the pros being able to take your time and be ok with your choice

and to be able to plan it out so you have the support and time you need.

Regardless of what you decide and when, there are no guarantees and

unfortunately you may end up still facing the ‘ectomy in several years. You

need to get additional opinions to see what is best for you.

The best thing in the world when I was making my decision was this group,

because it allowed me to talk to others who were facing the same thing or

who had gone through it. That being said, as supportive as people can be, we

are still all different.

in NY

From: achalasia [mailto:achalasia ] On Behalf

Of spotoca

Sent: Saturday, August 14, 2010 8:43 AM

achalasia

Subject: Not sure I am making the right decision

The more I read on this site the more I think that surgery is only going to

speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice

with a sigmoid esophagus who just went through a myotomy, now needs an

ectomy. Isn't this foreshadowing? Shouldn't I bee looking at signs here?

What makes me think my situation would be different? Rice won't talk to me

at all and I am completely turned off by him.

I haven't had my consult with Dr. L as of yet, not sure if that will give me

more reassurance - probably not.

I'm beginning to feel like my best chance of a good quality of life is to do

NOTHING until problems arise.

If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

If there is anyone who has had a successful myotomy done by Rice, please

speak up if you can. I only have heard of his failures, and there are others

besides . I read those stories in the past.

The only other things I have heard about Rice is his expertise in doing

ectomies.

So why do people consider him the best? I don't get it and I am more

confused than ever. I have my surgery date but no plane tickets. I can

cancel at any time and now I am seriously thinking about it.

I really need some support if you can spare it.

Cara

[Guest guest]

Cara wrote:

> If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

>

Because that is not the nature of this, or most, support sites. If you

want success stories you have to go to the site and search for older

posts made before the people moved on after receiving their successful

treatments.

Mainly what we get here are people wanting information about problems

and getting treatments. After the problems are taken care of or they

have their treatments they move on until they have a new situation.

People that have new or continued problems after treatment tend to stick

around longer and post more messages.

If at any time you look just at current messages it will look like lots

of people are getting achalasia, dilation almost never works, myotomies

often and quickly fail, wraps always get too tight, and megaesophagus

and esophagectomies are common. None of this is true though. At least

none of this is supported by medical records and statistics provided by

doctors and medical centers.

Achalasia is rare. Dilatation done right works more often than it

doesn't. Myotomies typically last for many years. Only few percent of

wraps have problems (the main problem is over years they become loose).

Only a few percent of people with achalasia will reach end stage or need

an esophagectomy.

In your case you can't just compare your situation to that of just

anyone else with a dilated esophagus possibly needing an esophagectomy.

Some will have larger more dilated esophagi. Some will have kinks or

tight bends in the esophagus where it has collapsed in on itself

possibly completely blocking the esophagus, which is a separate blockage

from the LES. Some will have diverticuli. Some will have a section lower

than their stomachs. LES pressure is lower for some and higher for some.

Some will not have these problems and just have a dilated esophagus. By

the same doctors some would be told there is no reason to even try a

myotomy or dilatation while others will be told they should try one

before going with an esophagectomy. Some have reason for a much better

expectation of outcome than others. How good is your situation in the

context of dilated esophagi I can't say but it seems that Rice thinks it

is better than some have.

notan

[Guest guest]

Thanks for responding ,

My issue with Rice is that he doesn't " get " that my quality of life is really

good right now. No matter what I try to tell him, he thinks I can't swallow. He

is completely basing it on my tests and ignoring what I am telling him. This is

not the best thing because as we all know a person's perceived swallowing can

differ greatly from their actual swallowing and what is actually getting through

the LES.

He does not take any time to answer my questions in a way that would make me

feel comfortable having the surgery. I didn't realize that surgeons would tell

someone they absolutely need a certain surgery and on the same hand tell them

that the really have no idea what the outcome is going to be like. He " wants " to

buy me 20 more years with my E but can't give me ANY percentages of what he

thinks he can do for me.

At least he was cautiously optimistic with and now we all know what

happened there. i am sure he wanted the best outcome for as well. Why

would he want anything different?

I realize that we are all different and I may very well have a better outcome. I

have not heard of a story yet where someone who COULD swallow went in for a

myotomy and came out not being able to swallow. I have only heard the stories

of people not swallowing and then not having any improvement after the myotomy.

However, even Rice admits there is a chance I could wind up swallowing worse

after this surgery. Really encouraging right?

But what are my options? Remember, I have a mega/sigmoid E and its only going to

get worse. I don't clear 100% so stuff is sitting in there stretching it out.

The longer I wait the worse it will be and then maybe a myotomy won't be offered

to me.

The difference between you and I was that you had a larger window to work with

because a myotomy wasn't an option. I think my myotomy window for me is very

small since my E is probably stretching as we speak. If I plan on doing

something, I need to do it soon.

Its a really tough and complicated situation and in the end will 100% be a

complete leap of faith. A total gamble. because if the myotomy fails, I may need

an ectomy in a year whereas if I did nothing right now, then maybe I could have

held out another 5 years before ectomy.

And I am not mentally ready in any way to undergo an ectomy right now.

I just wish I knew of ONE person with sigmoid/mega E who has a successful

myotomy with Dr. Rice. ONE person and I would feel better.

Cara

-- In achalasia , " Brown " <tracylb@...> wrote:

>

> Cara,

>

> There are several things you have to remind yourself of.

>

>

>

> First of all, and probably most important, is that everyone is different.

> Just as achalasia effects us all differently as far as our symptoms and how

> severe they are, it also progresses differently for everyone. Some people

> can manage to go years without major issues and only minimal swallowing

> issues, and others progress very quickly and can't even get water down.

> There is no textbook case of exactly how it should be or how it should

> progress…..as we all know, there are no rules in achalasia.

>

>

>

> Secondly, there is no CURE for achalasia. While some people have the myotomy

> and do very well for years, others have it and find themselves having

> symptoms again after a shorter period of time. I didn't even have the

> myotomy….like you, Dr. Rice wanted to try for it with me if it would be

> possible, however after doing his testing on me he determined that my best

> outcome would be the `ectomy. This was not the first time I had heard it, so

> it wasn't a surprise. Disappointing, yes, but not a surprise. I do not

> believe he would tell you to go for the myotomy if he didn't truly believe

> he could help you and maintain your esophagus for a period of time. That

> being said, none of us have a crystal ball and there are never any

> guarantees. He will do his best by you, and he does care about your outcome,

> but he is not God.

>

>

>

> I do believe you should seek out additional opinions from Dr. L and even

> another doctor if you can. I cannot remember where you are from, but I also

> saw Dr. s at Strong Memorial in Rochester, NY. He used to be a

> big wig at USC in CA and then relocated east. I don't hear his name a lot on

> the board but he is well respected in the field.

>

> However, I just see that not only have you been doubting Dr. Rice's opinion,

> but you don't seem to feel a good connection with him. Nobody is pushing you

> into anything, and nobody is telling you when you have to make a choice. So

> if things are status quo right now, take your time, do the research and see

> a few other doctors so you can really make a good decision for yourself.

> Regardless of what surgery you are facing, the myotomy or the `ectomy, you

> owe it to yourself to feel ok with your decision, and right now you are not

> at that place. After I saw Dr. s in Rochester, NY and he first told me

> `ectomy, it took me close to two more years to come to terms with that and

> go seek out another opinion with Dr. Rice. I was scared out of my mind, but

> that is normal. My biggest fears had to do with how I would be afterwards

> and would it make me feel worse, because like you I had minimal symptoms. As

> crazy as it sounds when you are going to have surgery, some of it is a leap

> of faith. It's not like when you have appendicitis and you have to get it

> removed immediately or else…..in our case it is a matter of how bad it is

> and when you choose to do it. There are pros and cons to both

> situations……the cons being the doubt and fear and indecision over what's

> right, and the pros being able to take your time and be ok with your choice

> and to be able to plan it out so you have the support and time you need.

>

>

>

> Regardless of what you decide and when, there are no guarantees and

> unfortunately you may end up still facing the `ectomy in several years. You

> need to get additional opinions to see what is best for you.

>

> The best thing in the world when I was making my decision was this group,

> because it allowed me to talk to others who were facing the same thing or

> who had gone through it. That being said, as supportive as people can be, we

> are still all different.

>

>

>

> in NY

>

>

>

> From: achalasia [mailto:achalasia ] On Behalf

> Of spotoca

> Sent: Saturday, August 14, 2010 8:43 AM

> achalasia

> Subject: Not sure I am making the right decision

>

>

>

>

>

> The more I read on this site the more I think that surgery is only going to

> speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice

> with a sigmoid esophagus who just went through a myotomy, now needs an

> ectomy. Isn't this foreshadowing? Shouldn't I bee looking at signs here?

>

> What makes me think my situation would be different? Rice won't talk to me

> at all and I am completely turned off by him.

>

> I haven't had my consult with Dr. L as of yet, not sure if that will give me

> more reassurance - probably not.

>

> I'm beginning to feel like my best chance of a good quality of life is to do

> NOTHING until problems arise.

>

> If Rice is so damn good and so damn amazing like everyone toutson this site

> why haven't I heard of any success stories?

>

> If there is anyone who has had a successful myotomy done by Rice, please

> speak up if you can. I only have heard of his failures, and there are others

> besides . I read those stories in the past.

>

> The only other things I have heard about Rice is his expertise in doing

> ectomies.

>

> So why do people consider him the best? I don't get it and I am more

> confused than ever. I have my surgery date but no plane tickets. I can

> cancel at any time and now I am seriously thinking about it.

>

> I really need some support if you can spare it.

>

> Cara

>

>

>

>

>

>

[Guest guest]

Notan,

Yes you are right about everything you said. I need to go back and do a search

to find success stories. And maybe I won't even be able to read anything because

those people may have just stopped posting right after their surgery.

I just remember one woman (forget her name) who had a myotomy with Rice, it

failed and then needed and ectomy. Now I am reading about . So its

discouraging.

But yes, maybe my E is different from the others. I CAN swallow. Maybe that is a

good sign. I just don't know.

Either way, I can go back and forth and back and forth. I am taking a leap of

faith and I don't have too much of a window of opportunity. So I need to take

this leap of faith soon or just deal with an ectomy in a couple of years. I so

very much would like to avoid that until I am in my 50's (if I can). Who knows,

maybe there will be advances in the surgery - less morbidity or what not.

i don't think I have ever had to make a decision like this in my life (about my

life) so its really weighing heavily on me right now.

Cara

> > If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

> >

>

> Because that is not the nature of this, or most, support sites. If you

> want success stories you have to go to the site and search for older

> posts made before the people moved on after receiving their successful

> treatments.

>

> Mainly what we get here are people wanting information about problems

> and getting treatments. After the problems are taken care of or they

> have their treatments they move on until they have a new situation.

> People that have new or continued problems after treatment tend to stick

> around longer and post more messages.

>

> If at any time you look just at current messages it will look like lots

> of people are getting achalasia, dilation almost never works, myotomies

> often and quickly fail, wraps always get too tight, and megaesophagus

> and esophagectomies are common. None of this is true though. At least

> none of this is supported by medical records and statistics provided by

> doctors and medical centers.

>

> Achalasia is rare. Dilatation done right works more often than it

> doesn't. Myotomies typically last for many years. Only few percent of

> wraps have problems (the main problem is over years they become loose).

> Only a few percent of people with achalasia will reach end stage or need

> an esophagectomy.

>

> In your case you can't just compare your situation to that of just

> anyone else with a dilated esophagus possibly needing an esophagectomy.

> Some will have larger more dilated esophagi. Some will have kinks or

> tight bends in the esophagus where it has collapsed in on itself

> possibly completely blocking the esophagus, which is a separate blockage

> from the LES. Some will have diverticuli. Some will have a section lower

> than their stomachs. LES pressure is lower for some and higher for some.

> Some will not have these problems and just have a dilated esophagus. By

> the same doctors some would be told there is no reason to even try a

> myotomy or dilatation while others will be told they should try one

> before going with an esophagectomy. Some have reason for a much better

> expectation of outcome than others. How good is your situation in the

> context of dilated esophagi I can't say but it seems that Rice thinks it

> is better than some have.

>

> notan

>

[Guest guest]

Cara

Get that consult with dr luketich. I found it very helpful to consult

with dr rice, dr Patti, dr luketich, and dr orringer (emails).

Of course I don't want to have an ectomy, but my situation dictates

that I must. If more than one dr thinks a myotomy is worth a try then

go with the one that you feel most comfortable with (assuming all have

done lots of myotomies on patients with similar findings).

Then get youself physically and mentally ready for a positive outcome.

Steve

Sent from my iPhone

On Aug 14, 2010, at 8:42 AM, " spotoca " <cspoto@...> wrote:

> The more I read on this site the more I think that surgery is only

> going to speed my road to an ectomy. I find it unsettling that a

> patient of Dr. Rice with a sigmoid esophagus who just went through a

> myotomy, now needs an ectomy. Isn't this foreshadowing? Shouldn't I

> bee looking at signs here?

>

> What makes me think my situation would be different? Rice won't talk

> to me at all and I am completely turned off by him.

>

> I haven't had my consult with Dr. L as of yet, not sure if that will

> give me more reassurance - probably not.

>

> I'm beginning to feel like my best chance of a good quality of life

> is to do NOTHING until problems arise.

>

> If Rice is so damn good and so damn amazing like everyone toutson

> this site why haven't I heard of any success stories?

>

> If there is anyone who has had a successful myotomy done by Rice,

> please speak up if you can. I only have heard of his failures, and

> there are others besides . I read those stories in the past.

>

> The only other things I have heard about Rice is his expertise in

> doing ectomies.

>

> So why do people consider him the best? I don't get it and I am more

> confused than ever. I have my surgery date but no plane tickets. I

> can cancel at any time and now I am seriously thinking about it.

>

> I really need some support if you can spare it.

>

> Cara

>

>

[Guest guest]

Before i mentioned about two case report from turkey .two patient had sigmoid

achalasia with giant 10cm and 15 sm diameter. Surgeon presents 2 patients with

sigmoid

achalasia in whom we successfully performed open  esophagogastrostomy with

Dor fundoplication.

 

in such a case without using esophagoectomy at six years followup patients live

without having any problems.

Esophagogastrostomy with Dor fundoplication represents an alternative

to esophagectomy and Heller-Dor surgery. Because of the wide sideto-

side anastomoses, there is no risk of persisting stenosis such as that reported

for the Heller operation, and the procedure certainly is less invasive than

esophagectomy.

Laparoscopic esophagogastrostomy and Dor fundoplication is an

alternative minimally invasive treatment for sigmoid achalasia.

 

Surgeon says due to wide side bye side anostomosis there is no longterm risk for

dysphagy.

 

i dont know this type of an operation is alternative to ectomy or not?

 

http://www.journalagent.com/z4/download_fulltext.asp?pdir=istanbultd & plng=tur & un\

=ITD-29392

 

 

 

 

Banu

 

 

 

> The more I read on this site the more I think that surgery is only

> going to speed my road to an ectomy. I find it unsettling that a

> patient of Dr. Rice with a sigmoid esophagus who just went through a

> myotomy, now needs an ectomy. Isn't this foreshadowing? Shouldn't I

> bee looking at signs here?

>

> What makes me think my situation would be different? Rice won't talk

> to me at all and I am completely turned off by him.

>

> I haven't had my consult with Dr. L as of yet, not sure if that will

> give me more reassurance - probably not.

>

> I'm beginning to feel like my best chance of a good quality of life

> is to do NOTHING until problems arise.

>

> If Rice is so damn good and so damn amazing like everyone toutson

> this site why haven't I heard of any success stories?

>

> If there is anyone who has had a successful myotomy done by Rice,

> please speak up if you can. I only have heard of his failures, and

> there are others besides . I read those stories in the past.

>

> The only other things I have heard about Rice is his expertise in

> doing ectomies.

>

> So why do people consider him the best? I don't get it and I am more

> confused than ever. I have my surgery date but no plane tickets. I

> can cancel at any time and now I am seriously thinking about it.

>

> I really need some support if you can spare it.

>

> Cara

>

>

[Guest guest]

> My issue with Rice is that he doesn't " get " that my quality of life is really

good right now. No matter what I try to tell him, he thinks I can't swallow. He

is completely basing it on my tests and ignoring what I am telling him.

======================

Cara, you already know my thoughts on this subject, as I've shared them with you

privately, but I'm going to offer my $.02 here where others can also see it.

*You are able to eat.

*You are able to drink.

*You are not losing weight uncontrollably.

*You are able to eat a variety of foods to provide your body with the nutrition

it needs.

*You are able to take care of your family.

*You are able to sleep without aspirating on your own saliva.

*You do not have any cancerous or pre-cancerous conditions.

If it ain't broke, why fix it???

What's the worst that can happen if you don't have a myotomy right now? At some

point in the future, maybe 10-20-30 years down the road, you might need either a

myotomy or an ectomy.

What about if you have a myotomy right now? At some point in the future, maybe

10-20-30 years down the road, you might need an ectomy.

What else could happen if you have a myotomy right now? You could end up with a

hospital-acquired infection, resulting in additional pain and/or healing time or

even death (our dear friend Joan Pearse, who was herself an infection-control

nurse, passed away five years ago as the result of a post-operative infection:

achalasia/message/26255). You could have

complications during surgery that necessitate an immediate ectomy. You could

have digestion problems after surgery, such as " dumping syndrome " or side

effects of a too-tight fundoplication. You could end up missing out on

activities in your children's lives while you're recovering (can you really go

for a month without picking up your kids and hugging/tickling the dickens out of

them?).

I'm not trying to make surgery sound like the worst thing in the world --

myotomies and ectomies have given countless achalasians a new lease on life, and

surgeries in general have saved the lives of billions of people through the

ages. However, ANY surgery has risks associated with it, and one should not

undergo an elective procedure without being aware of and willing to live with

the possible consequences.

If you were experiencing any of the negative achalasia-related situations I

noted at the beginning of my post, I would say " go for it " when you asked me

about surgery. But if a myotomy now is not going to benefit your quality of

life (and will actually detract from it during the post-operative healing

period), I can honestly see no reason to put your body (and your family) through

it at this point in time.

Here's another way of looking at it. Roughly 25% of women in the USA will have

a hysterectomy by the time they are 65yo. Does that mean that you and I should

go get ours removed now -- even though we're not experiencing any problems in

that area -- " just in case " we need to have it removed down the road? If we had

pre-cancerous cells or huge fibroids or something like that, then a hysterectomy

might be appropriate... but in the absence of a valid reason for a hysterectomy,

we'd be fools to put ourselves through the surgery " just in case " we'd need it

25 years down the road.

I will now step back down off my soapbox...

Debbi in Michigan

[Guest guest]

Debbi,

I am REALLY beginning to feel like I am going to cancel surgery. There are too

many risks and my QOL is too good right now. The only thing I am afraid of is

getting my tests done next year and then being beyond the ability for a myotomy

and needing an ectomy in a couple o f years.

Why do you think I can make it 10-20-30 years without an ectomy? Can the

esophagus really hold up like that? I don't think mine will considering I still

retain food and the stretching will continue.

I just don'tknow...

Cara

>

> > My issue with Rice is that he doesn't " get " that my quality of life is

really good right now. No matter what I try to tell him, he thinks I can't

swallow. He is completely basing it on my tests and ignoring what I am telling

him.

>

> ======================

>

> Cara, you already know my thoughts on this subject, as I've shared them with

you privately, but I'm going to offer my $.02 here where others can also see it.

>

> *You are able to eat.

> *You are able to drink.

> *You are not losing weight uncontrollably.

> *You are able to eat a variety of foods to provide your body with the

nutrition it needs.

> *You are able to take care of your family.

> *You are able to sleep without aspirating on your own saliva.

> *You do not have any cancerous or pre-cancerous conditions.

>

>

> If it ain't broke, why fix it???

>

>

> What's the worst that can happen if you don't have a myotomy right now? At

some point in the future, maybe 10-20-30 years down the road, you might need

either a myotomy or an ectomy.

>

> What about if you have a myotomy right now? At some point in the future,

maybe 10-20-30 years down the road, you might need an ectomy.

>

>

> What else could happen if you have a myotomy right now? You could end up with

a hospital-acquired infection, resulting in additional pain and/or healing time

or even death (our dear friend Joan Pearse, who was herself an infection-control

nurse, passed away five years ago as the result of a post-operative infection:

achalasia/message/26255). You could have

complications during surgery that necessitate an immediate ectomy. You could

have digestion problems after surgery, such as " dumping syndrome " or side

effects of a too-tight fundoplication. You could end up missing out on

activities in your children's lives while you're recovering (can you really go

for a month without picking up your kids and hugging/tickling the dickens out of

them?).

>

>

> I'm not trying to make surgery sound like the worst thing in the world --

myotomies and ectomies have given countless achalasians a new lease on life, and

surgeries in general have saved the lives of billions of people through the

ages. However, ANY surgery has risks associated with it, and one should not

undergo an elective procedure without being aware of and willing to live with

the possible consequences.

>

> If you were experiencing any of the negative achalasia-related situations I

noted at the beginning of my post, I would say " go for it " when you asked me

about surgery. But if a myotomy now is not going to benefit your quality of

life (and will actually detract from it during the post-operative healing

period), I can honestly see no reason to put your body (and your family) through

it at this point in time.

>

> Here's another way of looking at it. Roughly 25% of women in the USA will

have a hysterectomy by the time they are 65yo. Does that mean that you and I

should go get ours removed now -- even though we're not experiencing any

problems in that area -- " just in case " we need to have it removed down the

road? If we had pre-cancerous cells or huge fibroids or something like that,

then a hysterectomy might be appropriate... but in the absence of a valid reason

for a hysterectomy, we'd be fools to put ourselves through the surgery " just in

case " we'd need it 25 years down the road.

>

> I will now step back down off my soapbox...

>

> Debbi in Michigan

>

[Guest guest]

This is my opinion.  Get as much information as you can about this disease. 

Get

educated about it.  Talk to as many people as you can, get there stories, talk

to doctors and surgeons.  In the end it is up to you.  You need to do what is

right for you, don't let someone force you into something that you do not want

to do.

There are several here that are willing to lend an ear here, I am one of

them. 

If you have any questions or just want to talk please feel free to ask.

in Georgia.

 <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sat, August 14, 2010 8:42:53 AM

Subject: Not sure I am making the right decision

 

The more I read on this site the more I think that surgery is only going to

speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice with

a sigmoid esophagus who just went through a myotomy, now needs an ectomy. Isn't

this foreshadowing? Shouldn't I bee looking at signs here?

What makes me think my situation would be different? Rice won't talk to me at

all and I am completely turned off by him.

I haven't had my consult with Dr. L as of yet, not sure if that will give me

more reassurance - probably not.

I'm beginning to feel like my best chance of a good quality of life is to do

NOTHING until problems arise.

If Rice is so damn good and so damn amazing like everyone toutson this site why

haven't I heard of any success stories?

If there is anyone who has had a successful myotomy done by Rice, please speak

up if you can. I only have heard of his failures, and there are others besides

. I read those stories in the past.

The only other things I have heard about Rice is his expertise in doing

ectomies.

So why do people consider him the best? I don't get it and I am more confused

than ever. I have my surgery date but no plane tickets. I can cancel at any time

and now I am seriously thinking about it.

I really need some support if you can spare it.

Cara

[Guest guest]

Cara,

I have a success story with Dr. Rice. Most people come here for support, as I

did. We tend to stay quiet unless a helping hand is needed, and that's why I'm

replying to your post. Dr. Rice performed a myotomy on my son 3 years ago. He

was only 14. I live in land, so I have access to s Hopkins, town

and more. I chose Dr. Rice because of his experience. I wanted the best for my

son. Dr. Rice has absolutely no bedside manner, and can be quite arrogant.

However, I wanted a skilled surgeon operating on my son, and he was it.

is now 17 and doing very well. He does have occasional spasms and uses a lot of

water to help with his swallowing, but that's pretty normal. Hope this helps.

Vicki

>

> The more I read on this site the more I think that surgery is only going to

speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice

with a sigmoid esophagus who just went through a myotomy, now needs an ectomy.

Isn't this foreshadowing? Shouldn't I bee looking at signs here?

>

> What makes me think my situation would be different? Rice won't talk to me at

all and I am completely turned off by him.

>

> I haven't had my consult with Dr. L as of yet, not sure if that will give me

more reassurance - probably not.

>

> I'm beginning to feel like my best chance of a good quality of life is to do

NOTHING until problems arise.

>

> If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

>

> If there is anyone who has had a successful myotomy done by Rice, please

speak up if you can. I only have heard of his failures, and there are others

besides . I read those stories in the past.

>

> The only other things I have heard about Rice is his expertise in doing

ectomies.

>

> So why do people consider him the best? I don't get it and I am more confused

than ever. I have my surgery date but no plane tickets. I can cancel at any time

and now I am seriously thinking about it.

>

> I really need some support if you can spare it.

>

> Cara

>

[Guest guest]

As a side note......how does one know when their E is not emptying?? Is it just

something you know?? I'm asking because my husband is still tooling along....he

seems to be eating ok, although he did throw up the other night about 2 hours

after dinner....but after all the posts I've read here about people swallowing

ok & thinking everything is ok, but they can tell there is still food in their

E. I was just wondering if there is a way to tell if this is the case with my

husband, or if the only way to tell is TO GO TO A DOCTOR (which we all know

won't happen).

I guess I worry since he had that month-long episode a few months ago when he

wasn't able to eat anything again, just like when he was first diagnosed. Then

slowly he was able to eat again....he kept saying it was the flu. I don't know

of any flu that lasts a month!

(WI)

>

> The more I read on this site the more I think that surgery is only going to

speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice

with a sigmoid esophagus who just went through a myotomy, now needs an ectomy.

Isn't this foreshadowing? Shouldn't I bee looking at signs here?

>

> What makes me think my situation would be different? Rice won't talk to me at

all and I am completely turned off by him.

>

> I haven't had my consult with Dr. L as of yet, not sure if that will give me

more reassurance - probably not.

>

> I'm beginning to feel like my best chance of a good quality of life is to do

NOTHING until problems arise.

>

> If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

>

> If there is anyone who has had a successful myotomy done by Rice, please

speak up if you can. I only have heard of his failures, and there are others

besides . I read those stories in the past.

>

> The only other things I have heard about Rice is his expertise in doing

ectomies.

>

> So why do people consider him the best? I don't get it and I am more confused

than ever. I have my surgery date but no plane tickets. I can cancel at any time

and now I am seriously thinking about it.

>

> I really need some support if you can spare it.

>

> Cara

>

[Guest guest]

Thanks for taking the time to come on and post about your son's success story

Vicki. I appreciate it. Its good to hear. My situation is a little different

because my esophagus is end stage and I would like to know his success rate

with end stagers and myotomies. I don't want to jump to conclusions but since

your son was 14 I would assume that his esophagus was still in pretty good

shape.

Either way, its helpful to hear these stories. Thank you for sharing and I hope

your son get years and years of relief from his myotomy!

Cara

> >

> > The more I read on this site the more I think that surgery is only going

to speed my road to an ectomy. I find it unsettling that a patient of Dr. Rice

with a sigmoid esophagus who just went through a myotomy, now needs an ectomy.

Isn't this foreshadowing? Shouldn't I bee looking at signs here?

> >

> > What makes me think my situation would be different? Rice won't talk to me

at all and I am completely turned off by him.

> >

> > I haven't had my consult with Dr. L as of yet, not sure if that will give

me more reassurance - probably not.

> >

> > I'm beginning to feel like my best chance of a good quality of life is to do

NOTHING until problems arise.

> >

> > If Rice is so damn good and so damn amazing like everyone toutson this site

why haven't I heard of any success stories?

> >

> > If there is anyone who has had a successful myotomy done by Rice, please

speak up if you can. I only have heard of his failures, and there are others

besides . I read those stories in the past.

> >

> > The only other things I have heard about Rice is his expertise in doing

ectomies.

> >

> > So why do people consider him the best? I don't get it and I am more

confused than ever. I have my surgery date but no plane tickets. I can cancel at

any time and now I am seriously thinking about it.

> >

> > I really need some support if you can spare it.

> >

> > Cara

> >

>