Re: List of questions for dr. Rice, what am I missing?

[Guest guest]

You are missing:

" Dr. Rice, mind if I ask you a few questions? "

Since we all suffer from the imperfections of being human, you cannot really

expect answers from him regarding how long it will last, or the certainty of

quality of life. While he may not like all of your questions, these questions

are of matters that concern you and should be voiced.  Expect that a number of

your questions he will not be able to answer at all, for to give an answer

assumes that he knows ahead of time from your tests what the outcome will be.

There are too many stories online indicating that most surgeons cannot tell you

ahead of time exactly what the outcome will be. They can only tell you what it

might be.

 

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Mon, July 5, 2010 9:03:02 PM

Subject: List of questions for dr. Rice, what am I missing?

 

Ectomy questions

How long will it last? (45 years or more?)

I am aware that you use the THE approach? Why not lap?

What is scarring like on THE?

How many have you done?

What is your mortality rate?

What is your morbidity rate?

Common complications?

Hospital stay?

J tube for how long? Chances it will be needed for the rest of my life?

I live in Atlanta, how would this work?  Driving, flying, how many times?

Post op dilatations - how many needed on average? Where are they performed?

Full recovery in how long?

Quality of life after ectomy? I have heard some horror stories?

Will I need to be on any medication for the rest of my life?

Reflux issues after ectomy? How common?

Stomach death? How common?

What determines how well my quality of life will be afterwards? Type of person

best suited for this operation?

Does the size of my E make this surgery more complicated?

Will this shorten my life span?

If the stomach gives out, what then? Do I die?

Personal E questions:

What is my Les pressure?

Do I have any peristalsis?

What is the diameter?

Does my E drop below my esophogastric junction?

How much residual do I retain? Emptying time?

Will I die from this?

Can a dilatation help me at this point?

How thin is my lining?

I heard that people with motility disorders tend to have a thicker E wall. Is

that my case?

What is the pressure inside of my E?

What has caused the stretching of my E, muscle atrophy over time or residual

food?

If I had had a myotomy back in the day, would my E still have stretched out

anyway?

How wide can an E get before it gives out? And what does giving out mean

exactly?

How many more years can I go before I need it out and what could happen to me if

I do nothing?

What is the most likely situatation? Aspiration, cancer or perforation?

How is the lining of my E? Potential for cancer at this stage?

My QOL is great right now, why would I want to rush Into this?

General A questions:

Is it autoimmune?

Any advances in techniques on the horizon?

Stem cell research and growing an esophagus? Will it ever happen?

Gastrin and the relaxation of the les? Is there a correlation and if so are

there meds out there to control the production? Side effects?

Do people who present with this disease early on wind up with an ectomy later in

life regardless of the surgeries or dilatations that have had?

Have you seen anyone go more than 30 years with this and not need an ectomy?

Especially if they presented with A before the age of 20?

Myotomy questions:

Can it be done on my E?

If not why?

What about the studies on dilated tortuous E's that have proven to be a success

after myotomy?

Isn't there a straightening procedure they can do to regain the axis of the E?

How long would it last?

Would it make my quality of life worse In the short term?

Sent from my iPad

[Guest guest]

Which ones won't he like? I don't want to annoy him and have him rush me out of

there..

[Guest guest]

Wow! This is great! Please let the group know the answers you receive. With

all of us working together, maybe we can make some sense of all the current

knowledge.

Thanks!

Steve

On Mon, Jul 5, 2010 at 9:03 PM, spotoca <cspoto@...> wrote:

>

>

> Ectomy questions

>

> How long will it last? (45 years or more?)

>

> I am aware that you use the THE approach? Why not lap?

>

> What is scarring like on THE?

>

> How many have you done?

>

> What is your mortality rate?

>

> What is your morbidity rate?

>

> Common complications?

>

> Hospital stay?

>

> J tube for how long? Chances it will be needed for the rest of my life?

>

> I live in Atlanta, how would this work? Driving, flying, how many times?

>

> Post op dilatations - how many needed on average? Where are they performed?

>

> Full recovery in how long?

>

> Quality of life after ectomy? I have heard some horror stories?

>

> Will I need to be on any medication for the rest of my life?

>

> Reflux issues after ectomy? How common?

>

> Stomach death? How common?

>

> What determines how well my quality of life will be afterwards? Type of

> person best suited for this operation?

>

> Does the size of my E make this surgery more complicated?

>

> Will this shorten my life span?

>

> If the stomach gives out, what then? Do I die?

>

> Personal E questions:

>

> What is my Les pressure?

>

> Do I have any peristalsis?

>

> What is the diameter?

>

> Does my E drop below my esophogastric junction?

>

> How much residual do I retain? Emptying time?

>

> Will I die from this?

>

> Can a dilatation help me at this point?

>

> How thin is my lining?

>

> I heard that people with motility disorders tend to have a thicker E wall.

> Is that my case?

>

> What is the pressure inside of my E?

>

> What has caused the stretching of my E, muscle atrophy over time or

> residual food?

>

> If I had had a myotomy back in the day, would my E still have stretched out

> anyway?

>

> How wide can an E get before it gives out? And what does giving out mean

> exactly?

>

> How many more years can I go before I need it out and what could happen to

> me if I do nothing?

>

> What is the most likely situatation? Aspiration, cancer or perforation?

>

> How is the lining of my E? Potential for cancer at this stage?

>

> My QOL is great right now, why would I want to rush Into this?

>

> General A questions:

>

> Is it autoimmune?

>

> Any advances in techniques on the horizon?

>

> Stem cell research and growing an esophagus? Will it ever happen?

>

> Gastrin and the relaxation of the les? Is there a correlation and if so are

> there meds out there to control the production? Side effects?

>

> Do people who present with this disease early on wind up with an ectomy

> later in life regardless of the surgeries or dilatations that have had?

>

> Have you seen anyone go more than 30 years with this and not need an

> ectomy? Especially if they presented with A before the age of 20?

>

> Myotomy questions:

>

> Can it be done on my E?

>

> If not why?

>

> What about the studies on dilated tortuous E's that have proven to be a

> success after myotomy?

>

> Isn't there a straightening procedure they can do to regain the axis of the

> E?

>

> How long would it last?

>

> Would it make my quality of life worse In the short term?

>

> Sent from my iPad

>

>

>

[Guest guest]

While I can think or guess as to which questions he might find annoying, if any,

I can't put myself in his place.

For my part, I will copy your questions to my daughter, who is a pediatric

orthopaedic surgeon and see what she says.

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Mon, July 5, 2010 9:54:13 PM

Subject: Re: List of questions for dr. Rice, what am I missing?

 

Which ones won't he like? I don't want to annoy him and have him rush me out of

there..

[Guest guest]

spotoca wrote:

> Ectomy questions

>

It may be good to group the questions. Short-term/long-term, philosophy

and technique, condition and effect of current condition on outcome.

Also look at each question and ask yourself what is your specific

concern that leads you to ask the question. For example: " What is

scarring like on THE, " are you concerned about length, how long till

they fade, adhesions or what? For the question about achalasia being an

autoimmune disorder, do you just want a yes no answer or is this leading

somewhere? If you know there is something specific you want from a

question try to ask it in a way that you will get the kind of answer you

need.

> How long will it last? (45 years or more?)

>

>

>

> I am aware that you use the THE approach? Why not lap?

>

>

>

> What is scarring like on THE?

>

>

> How many have you done?

>

>

> What is your mortality rate?

>

>

> What is your morbidity rate?

>

>

> Common complications?

>

>

> Hospital stay?

>

>

> J tube for how long? Chances it will be needed for the rest of my life?

>

>

> I live in Atlanta, how would this work? Driving, flying, how many times?

>

>

> Post op dilatations - how many needed on average? Where are they performed?

>

>

> Full recovery in how long?

>

> Quality of life after ectomy? I have heard some horror stories?

>

>

> Will I need to be on any medication for the rest of my life?

>

>

> Reflux issues after ectomy? How common?

>

>

> Stomach death? How common?

>

>

> What determines how well my quality of life will be afterwards? Type of person

best suited for this operation?

>

>

> Does the size of my E make this surgery more complicated?

>

>

> Will this shorten my life span?

>

>

> If the stomach gives out, what then? Do I die?

>

>

>

>

> Personal E questions:

>

> What is my Les pressure?

>

> Do I have any peristalsis?

>

> What is the diameter?

>

>

> Does my E drop below my esophogastric junction?

>

>

> How much residual do I retain? Emptying time?

>

>

> Will I die from this?

>

>

> Can a dilatation help me at this point?

>

>

> How thin is my lining?

>

>

>

> I heard that people with motility disorders tend to have a thicker E wall. Is

that my case?

>

>

> What is the pressure inside of my E?

>

>

> What has caused the stretching of my E, muscle atrophy over time or residual

food?

>

>

>

> If I had had a myotomy back in the day, would my E still have stretched out

anyway?

>

>

> How wide can an E get before it gives out? And what does giving out mean

exactly?

>

>

> How many more years can I go before I need it out and what could happen to me

if I do nothing?

>

> What is the most likely situatation? Aspiration, cancer or perforation?

>

>

> How is the lining of my E? Potential for cancer at this stage?

>

>

> My QOL is great right now, why would I want to rush Into this?

>

>

> General A questions:

>

>

> Is it autoimmune?

>

>

> Any advances in techniques on the horizon?

>

> Stem cell research and growing an esophagus? Will it ever happen?

>

>

> Gastrin and the relaxation of the les? Is there a correlation and if so are

there meds out there to control the production? Side effects?

>

>

> Do people who present with this disease early on wind up with an ectomy later

in life regardless of the surgeries or dilatations that have had?

>

>

> Have you seen anyone go more than 30 years with this and not need an ectomy?

Especially if they presented with A before the age of 20?

>

>

>

> Myotomy questions:

>

>

> Can it be done on my E?

>

>

> If not why?

>

>

> What about the studies on dilated tortuous E's that have proven to be a

success after myotomy?

>

> Isn't there a straightening procedure they can do to regain the axis of the E?

>

>

> How long would it last?

>

>

> Would it make my quality of life worse In the short term?

>

>

>

>

>

>

>

> Sent from my iPad

>

>

>

> ------------------------------------

>

>

[Guest guest]

Notan's post got me thinking. How about:

What are your specific criteria for determining the necessity of a myotomy?

e.g. Patient symptoms and QOL, size of E, shape of E, manometry results

- lack of peristalsis, timed swallow results - does barium get through LES,

endoscopy findings - amount of food content in E, amount of nerve cell

destruction.

Can you do a biopsy of my E to determine the amount of nerve cell

destruction? Is there a grading system? Does the amount of nerve cell

destruction have any relationship to the success of a myotomy or ectomy?

What are your specific criteria for determining the necessity of an ectomy?

At what point is a myotomy just not worth doing? (Dr. L was very surprised

that a myotomy was recommended to me in 2006 with a 9 cm dilated and

tortuous E)

Steve (land)

On Mon, Jul 5, 2010 at 9:03 PM, spotoca <cspoto@...> wrote:

>

>

> Ectomy questions

>

> How long will it last? (45 years or more?)

>

> I am aware that you use the THE approach? Why not lap?

>

> What is scarring like on THE?

>

> How many have you done?

>

> What is your mortality rate?

>

> What is your morbidity rate?

>

> Common complications?

>

> Hospital stay?

>

> J tube for how long? Chances it will be needed for the rest of my life?

>

> I live in Atlanta, how would this work? Driving, flying, how many times?

>

> Post op dilatations - how many needed on average? Where are they performed?

>

> Full recovery in how long?

>

> Quality of life after ectomy? I have heard some horror stories?

>

> Will I need to be on any medication for the rest of my life?

>

> Reflux issues after ectomy? How common?

>

> Stomach death? How common?

>

> What determines how well my quality of life will be afterwards? Type of

> person best suited for this operation?

>

> Does the size of my E make this surgery more complicated?

>

> Will this shorten my life span?

>

> If the stomach gives out, what then? Do I die?

>

> Personal E questions:

>

> What is my Les pressure?

>

> Do I have any peristalsis?

>

> What is the diameter?

>

> Does my E drop below my esophogastric junction?

>

> How much residual do I retain? Emptying time?

>

> Will I die from this?

>

> Can a dilatation help me at this point?

>

> How thin is my lining?

>

> I heard that people with motility disorders tend to have a thicker E wall.

> Is that my case?

>

> What is the pressure inside of my E?

>

> What has caused the stretching of my E, muscle atrophy over time or

> residual food?

>

> If I had had a myotomy back in the day, would my E still have stretched out

> anyway?

>

> How wide can an E get before it gives out? And what does giving out mean

> exactly?

>

> How many more years can I go before I need it out and what could happen to

> me if I do nothing?

>

> What is the most likely situatation? Aspiration, cancer or perforation?

>

> How is the lining of my E? Potential for cancer at this stage?

>

> My QOL is great right now, why would I want to rush Into this?

>

> General A questions:

>

> Is it autoimmune?

>

> Any advances in techniques on the horizon?

>

> Stem cell research and growing an esophagus? Will it ever happen?

>

> Gastrin and the relaxation of the les? Is there a correlation and if so are

> there meds out there to control the production? Side effects?

>

> Do people who present with this disease early on wind up with an ectomy

> later in life regardless of the surgeries or dilatations that have had?

>

> Have you seen anyone go more than 30 years with this and not need an

> ectomy? Especially if they presented with A before the age of 20?

>

> Myotomy questions:

>

> Can it be done on my E?

>

> If not why?

>

> What about the studies on dilated tortuous E's that have proven to be a

> success after myotomy?

>

> Isn't there a straightening procedure they can do to regain the axis of the

> E?

>

> How long would it last?

>

> Would it make my quality of life worse In the short term?

>

> Sent from my iPad

>

>

>

[Guest guest]

Brilliant list of questions. I may ask a few of them when i see surgeon on

Monday July 12th in Liverpool. Very interesting.

from the UK

________________________________

From: RICHARD FRIEDMAN <cynmark24@...>

achalasia

Sent: Tue, July 6, 2010 6:10:09 AM

Subject: Re: List of questions for dr. Rice, what am I missing?

 

While I can think or guess as to which questions he might find annoying, if any,

I can't put myself in his place.

For my part, I will copy your questions to my daughter, who is a pediatric

orthopaedic surgeon and see what she says.

________________________________

From: Cara Spoto <cspoto@...>

achalasia

Sent: Mon, July 5, 2010 9:54:13 PM

Subject: Re: List of questions for dr. Rice, what am I missing?

 

Which ones won't he like? I don't want to annoy him and have him rush me out of

there..

[Guest guest]

Thanks notan. Good points about grouping. As for my questions, these are basic

guidelines for me to glance at and make sure I hit the point but in my head i

know what I am trying to gain from the answer. For scarring, yes, I want to know

what my body is going to look like after I get cut open. I want to hear inches

and shape.

If I typed out long drawn out questions and " read " them to him, I would get off

track. With this list, I know exactly what I want to find out and can ask

additional questions based on his responses.

As for annoying him, I am so over it. This is my body and my life and frankly I

am terrified. If he can't understand that, then oh well. I will be seeing other

surgeons for additional opinions.

Also, and I am praying as I write this, I do not plan on doing anything for a

while. I would like to hang on to my native esophagus for as long as humanly

possible because, as you mention, rice won't be able to tell me how long an

ectomy will last. ly, I am not so keen on shortening my life span right now

if an ectomy should give out. The idea sounds absolutely ludacris to me and if

he hasn't heard of any ectmy lasting 45 years then I am no way having this

surgery any time soon.

It reminds me of the myotomy beliefs back in the 90's. My gi told me that a

myotomy was 98% successful and would last a lifetime. Now I am seeing that's not

true at all. Who has seen a myotomy last more than 15 years? Maybe in some cases

but I read a lot of information to the contrary.

I know sone one who is 9 years post ectomy ( in person) and he is doing fine.

But he was 47 when he had it done. I am 36. Big difference. Plus, my QOL is

great. I am not suffering, except for the mental crap I am putting myself

through gearing up to see dr. Rice.