Re: Some More questions for Dr. Rice

[Guest guest]

Cara,

Asking Rice lots of questions may not be the best way to handle your fear.

 

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Thu, July 29, 2010 8:37:05 AM

Subject: Some More questions for Dr. Rice

 

I sent Dr. Rice an email with some additional questions since he really did not

answer anything for me.

Here are my questions and his answers (I think I totally pissed him off), I hope

that doesn't affect my outcome.

It seems as though there are two different experiences of swallowing 1) my

perceived swallowing and 2) what is actually emptying into my stomach. In my

case, my perceived swallowing is much better than the rate that food is actually

getting into my stomach.This is probably due to the large size of my esophagus.

With that said, is there a risk that my perceived swallowing could get worse

after the myotomy?

Dr. Rice: possibly

If that does happen, what would come next? Would you do an endoscopic dilatation

to relieve this?

Dr. Rice: depends on cause

Are you concerned about esophageal perforation during my myotomy? Is it more of

a possibility in my case? If a perforation were to happen during surgery, how do

you repair it? Would the surgery have to revert to an open myotomy in that case?

Dr. Rice: no, yes, direct suture repair at laparoscopy, usually not

Is there ever a possibility that you would go in for a myotomy and realize that

you need to perform an esophagectomy? I am hoping you never had to do this.

Dr. Rice: unlikely

Since I am only about 100lbs right now, should I put on some weight for this

surgery? Will I wind up losing weight with all the fasting and then clear

liquids after the myotomy?

Dr. Rice: no, no...make sure you are protein replete

What is the food regimen post myotomy, (ie. how long on clear liquids, soft

foods, regular foods)?

Dr. Rice: liquids and soft x 1 week then normal diet

Are there any other risks I should be aware of for this myotomy?

Dr. Rice: many bleeding, leak, infection, etc. but uncommon

Since you are recommending the myotomy for someone with such an advanced stage

achalasia, I am assuming you believe that it can work. Are you optimistic about

it?

Dr. Rice: yes, yes...remeber I am on salary and my incentive is to salvage your

esophagus and reduce your symptoms..so why do you ask such a

question????????...it confuses me and the last thing you need in your care is

confusion

you and I need to be positive

Ok, so I guess based on my questions, Rice thinks I am second guessing his

surgical abilities. I am TOTALLY NOT doing that. I am just scared. Is it so

wrong to be scared? Wouldn't you be scared if you had a giant esophagus at 36

years old too? I mean, I am not being completely irrational here, am I?

Thanks for your input

Cara

[Guest guest]

Yeah, I get that. Did you ask Rice any questions ? Were his answers

similar?

>

> Cara,

>

> Asking Rice lots of questions may not be the best way to handle your fear.

>

>

>

>  

>

>

>

> ________________________________

> From: spotoca <cspoto@...>

> achalasia

> Sent: Thu, July 29, 2010 8:37:05 AM

> Subject: Some More questions for Dr. Rice

>

>  

> I sent Dr. Rice an email with some additional questions since he really did

not

> answer anything for me.

>

>

> Here are my questions and his answers (I think I totally pissed him off), I

hope

> that doesn't affect my outcome.

>

>

> It seems as though there are two different experiences of swallowing 1) my

> perceived swallowing and 2) what is actually emptying into my stomach. In my

> case, my perceived swallowing is much better than the rate that food is

actually

> getting into my stomach.This is probably due to the large size of my

esophagus.

> With that said, is there a risk that my perceived swallowing could get worse

> after the myotomy?

>

> Dr. Rice: possibly

>

> If that does happen, what would come next? Would you do an endoscopic

dilatation

> to relieve this?

>

> Dr. Rice: depends on cause

>

> Are you concerned about esophageal perforation during my myotomy? Is it more

of

> a possibility in my case? If a perforation were to happen during surgery, how

do

> you repair it? Would the surgery have to revert to an open myotomy in that

case?

>

> Dr. Rice: no, yes, direct suture repair at laparoscopy, usually not

>

> Is there ever a possibility that you would go in for a myotomy and realize

that

> you need to perform an esophagectomy? I am hoping you never had to do this.

>

> Dr. Rice: unlikely

>

> Since I am only about 100lbs right now, should I put on some weight for this

> surgery? Will I wind up losing weight with all the fasting and then clear

> liquids after the myotomy?

>

> Dr. Rice: no, no...make sure you are protein replete

>

> What is the food regimen post myotomy, (ie. how long on clear liquids, soft

> foods, regular foods)?

>

> Dr. Rice: liquids and soft x 1 week then normal diet

>

> Are there any other risks I should be aware of for this myotomy?

>

> Dr. Rice: many bleeding, leak, infection, etc. but uncommon

>

> Since you are recommending the myotomy for someone with such an advanced stage

> achalasia, I am assuming you believe that it can work. Are you optimistic

about

> it?

>

> Dr. Rice: yes, yes...remeber I am on salary and my incentive is to salvage

your

> esophagus and reduce your symptoms..so why do you ask such a

> question????????...it confuses me and the last thing you need in your care is

> confusion

>

> you and I need to be positive

>

> Ok, so I guess based on my questions, Rice thinks I am second guessing his

> surgical abilities. I am TOTALLY NOT doing that. I am just scared. Is it so

> wrong to be scared? Wouldn't you be scared if you had a giant esophagus at 36

> years old too? I mean, I am not being completely irrational here, am I?

>

>

> Thanks for your input

>

> Cara

>

>

>

>

>

>

>

>

[Guest guest]

Cara wrote:

> Since you are recommending the myotomy for someone with such an advanced stage

achalasia, I am assuming you believe that it can work. Are you optimistic about

it?

>

Doctors take many things into account when they decide one procedure is

preferred above another. Take fundoplication with myotomy for example.

You don't have to worry about it interfering with swallowing if you

don't use one. Without a wrap a patient may or may not have an acid

reflux problem and the wrap will reduce or eliminate the problem. If

there is an acid problem that can probably be taken care of with PPIs.

If there are acid problems some patients will not have symptoms. That

means patients should be tested. Some patients will not return for

follow-up tests. Doing a wrap adds time to the operation. A dor wrap

adds protection to the area of the myotomy.

With the same statistics and facts two doctors will decide differently

about fundoplications and then will do most of their patients the way

they decided. But look at one of the item in that decision, will a

patient follow-up after the surgery. Some doctors are going to consider

that some people don't follow-up and so to make sure everyone is

protected everyone gets a wrap. Another doctor may not like wraps and

believe his responsibility ends with telling the patient to return for

follow-up. You may be someone that knows you would alway do the

follow-up and so you don't need the doctors using that as a factor in

your wrap.

You may be someone that does not want to use PPIs, and would never take

them even if prescribed, or that is concerned that in some people they

don't work well enough. In that case you may not want the doctor to make

decisions based on strategies that rely more on PPIs.

These decisions have for the most part been made for us. We get to

choose the doctor but then we get his choices.

So, in the question you asked above, what does " believe that it can

work " mean to him? How well, how long and what are the chances that it

will last at least that long that well? Is 51% optimistic? How well and

how long do you want it to work? What are the chances that you are going

to get that? How well and how long he is optimistic for, may not be

enough for what you would choose over making a different decision. And

it isn't just about what you would like from this surgery but at what

point would you choose a different plan.

> Dr. Rice: yes, yes...remeber I am on salary and my incentive is to salvage

your esophagus and reduce your symptoms..so why do you ask such a

question????????...it confuses me and the last thing you need in your care is

confusion

>

> you and I need to be positive

>

I believe he believes that he knows what you want and that it is what he

has offered and that you should have understood the offer. Why would he

offer something he does not believe could work? (You may want to

consider an apology). So, in his mind this could be a questioning of his

motives, does he have your best interests in mind or not. But, as I have

pointed out two doctors who want the best for their patients can have

differing opinions.

If you wish to pursue this I suggest you confirm that you know he wants

to give you the best in what you choose but that you are still not sure

exactly of the details of what it is you have chosen. There is probably

a better way to say that but you get the idea.

notan

[Guest guest]

Notan,

Thanks for the response. The reason I unintentionally questioned his motives

is a direct result of the phone conversation we had after my visit. He was

brutally short with me and gave me no assurance that a myotomy would work in my

case. He was unwilling to even give a percentage or his feelings on the outcome.

I was left confused because, why would he suggest a myotomy if he is not sure of

the outcome? That is why I asked that clarifying question. Which he indeed

clarified but became upset having to answer it.

Its really not right that we as patients (who are dealing with this horrendous

disease) have to just take the few, sporadic words that these surgeons give us

and then just trust them 100% that everything is going to be alright.

Unfortunately I need to be in a little more control. Although, I am realizing

that I actually don't have much control in this situation anyway.

Well, I sent Rice another email explaining that I wasn't questioning his skills

or intentions, that I am just nervous about the surgery in general, having

nothing to do with him. I mean frankly, I am still flabbergasted that he didn't

recommend an ectomy!

I hope that explains things. I really am not an arrogant person, I just want to

be informed and feel confident about the decisions I make. There is nothing

worse than feeling unsure about the outcome of a decision, especially when it

concerns your health.

Thanks for reading

Cara

> > Since you are recommending the myotomy for someone with such an advanced

stage achalasia, I am assuming you believe that it can work. Are you optimistic

about it?

> >

>

> Doctors take many things into account when they decide one procedure is

> preferred above another. Take fundoplication with myotomy for example.

> You don't have to worry about it interfering with swallowing if you

> don't use one. Without a wrap a patient may or may not have an acid

> reflux problem and the wrap will reduce or eliminate the problem. If

> there is an acid problem that can probably be taken care of with PPIs.

> If there are acid problems some patients will not have symptoms. That

> means patients should be tested. Some patients will not return for

> follow-up tests. Doing a wrap adds time to the operation. A dor wrap

> adds protection to the area of the myotomy.

>

> With the same statistics and facts two doctors will decide differently

> about fundoplications and then will do most of their patients the way

> they decided. But look at one of the item in that decision, will a

> patient follow-up after the surgery. Some doctors are going to consider

> that some people don't follow-up and so to make sure everyone is

> protected everyone gets a wrap. Another doctor may not like wraps and

> believe his responsibility ends with telling the patient to return for

> follow-up. You may be someone that knows you would alway do the

> follow-up and so you don't need the doctors using that as a factor in

> your wrap.

>

> You may be someone that does not want to use PPIs, and would never take

> them even if prescribed, or that is concerned that in some people they

> don't work well enough. In that case you may not want the doctor to make

> decisions based on strategies that rely more on PPIs.

>

> These decisions have for the most part been made for us. We get to

> choose the doctor but then we get his choices.

>

> So, in the question you asked above, what does " believe that it can

> work " mean to him? How well, how long and what are the chances that it

> will last at least that long that well? Is 51% optimistic? How well and

> how long do you want it to work? What are the chances that you are going

> to get that? How well and how long he is optimistic for, may not be

> enough for what you would choose over making a different decision. And

> it isn't just about what you would like from this surgery but at what

> point would you choose a different plan.

>

> > Dr. Rice: yes, yes...remeber I am on salary and my incentive is to salvage

your esophagus and reduce your symptoms..so why do you ask such a

question????????...it confuses me and the last thing you need in your care is

confusion

> >

> > you and I need to be positive

> >

>

> I believe he believes that he knows what you want and that it is what he

> has offered and that you should have understood the offer. Why would he

> offer something he does not believe could work? (You may want to

> consider an apology). So, in his mind this could be a questioning of his

> motives, does he have your best interests in mind or not. But, as I have

> pointed out two doctors who want the best for their patients can have

> differing opinions.

>

> If you wish to pursue this I suggest you confirm that you know he wants

> to give you the best in what you choose but that you are still not sure

> exactly of the details of what it is you have chosen. There is probably

> a better way to say that but you get the idea.

>

> notan

>

[Guest guest]

Right, exactly. He mentioned that he wants to give me 20 more years with my

esophagus. So I guess he believes his myotomy with Dor fundo can achieve that.

But again, he has a really wierd and evasive way of making the patient feel good

about it.

I still have a 2nd opinion with Dr. L out there. Maybe he will talk to me a

little more. He is not in my insurance plan so I couldn't have him do my surgery

but talking to him about my concerns may be just what I need. It seems from our

email conversation that he is willing to " divulge " more technical information

about the " whys " and " hows " of one procedure vs. another. If anything, I will

feel more informed from our conversation. I think his bedside manner is

completely different from Rice's. I bet Steve can vouch for that!

Cara

> > I hope that explains things. I really am not an arrogant person, I just want

to be informed and feel confident about the decisions I make. There is nothing

worse than feeling unsure about the outcome of a decision, especially when it

concerns your health.

> >

>

> I understand.

>

> I don't understand him not giving percentages, and " optimistic " can be a

> relative thing. Something may be expected to work only 10% of the time

> but if the other options are terrible then hey lets be optimistic that

> the 10% option will work. But his affirming that he thinks this surgery

> will work says to me that he thinks it is at least above 50%. That still

> does not answer how well and for how long. Only that he must expect how

> well and how long to be " good " , or again why would he offer it.

>

> notan

>

[Guest guest]

,

I just emailed him with the abbreviated details of my test results from Dr.

Rice. I was specific, I gave him numbers, diameters, pressures, etc. He emailed

me back within 2 hours and explained how an aggressive myotomy can sometimes

yield good results in end stagers like me. He even went on to add that there is

a pull down procedure that can straighten out sigmoid E's but its a complicated

procedure and only certain types of sigmoids will qualify. For example, if your

sigmoid turn defies gravity (like a drain pipe), there won't be any way for a

pull down to reverse that. Since mine just takes a 90 degree turn there is a

possibility. I even asked Rice about this and he said it wasn't possible.

So I am very interested in what Dr. L has to say. Plus, he is the co-author of

the study that lists the 4 predictors of a failed myotomy. Dr. L said he needs

to see my barium swallow and my test results and then we will talk. I think he

has most of that stuff by now but he is out of the office until late Aug. Since

my surgery is not until October, I have time.

> > > I hope that explains things. I really am not an arrogant person, I just

want

> >to be informed and feel confident about the decisions I make. There is

nothing

> >worse than feeling unsure about the outcome of a decision, especially when it

> >concerns your health.

> > >

> >

> > I understand.

> >

> > I don't understand him not giving percentages, and " optimistic " can be a

> > relative thing. Something may be expected to work only 10% of the time

> > but if the other options are terrible then hey lets be optimistic that

> > the 10% option will work. But his affirming that he thinks this surgery

> > will work says to me that he thinks it is at least above 50%. That still

> > does not answer how well and for how long. Only that he must expect how

> > well and how long to be " good " , or again why would he offer it.

> >

> > notan

> >

>

>

>

>

>

>

>

>

[Guest guest]

Here is what I am thinking about the wrap. If there is trouble after the myotomy

(ie dysphagia) there are three possible causes that come to mind. 1) scar tissue

at the myotomy site 2) incomplete myotomy 3) wrap too tight

For 1) they can do an endoscopic dilatation to relive this

For 2) we should be going to the best of the best surgeons to avoid this from

happening

And for 3) they can always undo the wrap

So I would personally choose a wrap over not having a wrap because there is that

possibility of reflux, however not sure how high that possibility really is. And

like Notan mentioned, it does " protect " the myotomy and in my case my E is so

stretched, maybe I need that protection.

I am also not sure how complicated it is to take down a wrap vs. going back in

an adding a wrap. So that may factor into your consideration.

There are people on this board who are perfectly happy with no wrap. I think

Sandy is one of them. And there are people who are perfectly happy with a wrap.

Its definitely a crap shoot in my opinion.

That is why I need to make a decision, stick with it and pray to God that I

receive the best outcome. I need to release control and let the universe do its

work. However, I am still not 100% there yet. Maybe I will be after I speak with

Dr. L. I wonder if he will suggest a Dor wrap....

> > > > I hope that explains things. I really am not an arrogant person, I just

> >want

> >

> > >to be informed and feel confident about the decisions I make. There is

nothing

> >

> > >worse than feeling unsure about the outcome of a decision, especially when

it

>

> > >concerns your health.

> > > >

> > >

> > > I understand.

> > >

> > > I don't understand him not giving percentages, and " optimistic " can be a

> > > relative thing. Something may be expected to work only 10% of the time

> > > but if the other options are terrible then hey lets be optimistic that

> > > the 10% option will work. But his affirming that he thinks this surgery

> > > will work says to me that he thinks it is at least above 50%. That still

> > > does not answer how well and for how long. Only that he must expect how

> > > well and how long to be " good " , or again why would he offer it.

> > >

> > > notan

> > >

> >

> >

> >

> >

> >

> >

> >

> >