Re: Re: Heller Myotomy vs Dilation

[Guest guest]

I live in Milwaukee suburb so Dr. Patti was one that was recommended on this

forum and Chicago is only 2 hrs from us so its very do able for us. They wanted

to see the reports on what had been done with the surgery and the last 2

dilitations b4 they would see her. So far I am not too impressed with them

getting back to me. I had left numerous messages and they never call me back.

Again today I left a message in the morning and finally at around 4ish I called

again and finally got someone to tell me they still had not received any

reports. So I call the Milwaukee Childrens hospital records dept. and they say

they have not gotten a request from Dr. Pattis office. So I dont know who to

believe other than we have been waiting a week just for that to happen. But make

sure to take care of your son...your going to someone reputable and it should go

fine. Had I not found this forum I would of just settled for what I was getting.

My fear is that the surgery done

might not have been done properly...depending on how many the surgeon actually

had done in the past. But...at the time I was grateful and I still am its just

she obviously needs more than what our present hospital can provide. So a new

set of eyes and thoughts would be good.

From: priti19.mahajan <priti19.mahajan@...>

Subject: Re: Heller Myotomy vs Dilation

achalasia

Date: Wednesday, May 25, 2011, 7:28 PM

 

I am so sorry you and especially your daughter had to go through so much

within a year. It is pretty sad and disappointing to hear it.

Is Dr. Patti suggesting surgery? Why you want to see Dr. Patti and not Dr. Rice,

any reason? It is very confusing when doctor's have different opinion and you

have to base decision on your gut feeling and hope it works out. I thank you

for sharing your story.

>

> From: priti19.mahajan <priti19.mahajan@...>

> Subject: Heller Myotomy vs Dilation

> achalasia

> Date: Wednesday, May 25, 2011, 6:44 PM

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> Just want to hear what your GI or surgeons told you on this subject.

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> When I saw Dr. Richter and Dr. Dempsey at the Temple University both believed

that a young man as young as my son 16 year is a good candidate for surgery

rather than dilation. Also, studies show 90% of the people get atleast 5 years

of relief. But today when a Physician assistant at Dr. Luketich office called

he is of the opinion that surgery is a aggressive approach for a young kid and

if for some reason the 1st surgery does not work then after the second surgery

next is the removal of esophagus. For a young kid it could be as soon as 35

years old so he suggested to 1st go for dilation to stretch it with endoscopy

blue rubber thing (not a balloon) and it may give my son the initial relief and

then if does not work then do the surgery.

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> If anyone knows anything or has experience with choosing between these options

what did they choose and why. Did it work out for you?

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> Thanks,

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> Priti

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[Guest guest]

Thanks Rich, thank you for sharing your story. How long ago did you get

dilation? 

Do you still have relief?

The doctor assistant said that this dilatation that they do is different.  It

is not the big balloon but it is endoscopy with dilation-something with rubber

dilation (blue G??)

I was just thinking since my son is just 16 if dilation does not last and he has

to have it done every 6 months then in college it may be a more of a trouble for

him to deal with it.  So maybe get a surgery, next dilation.  Do you think

after surgery if we have to get  Dilation, it will be less effective?  Any

thoughts or what you may have heard?

Thanks.

Priti

From: richinchicagousa <jazz77@...>

Subject: Re: Heller Myotomy vs Dilation

achalasia

Date: Sunday, May 29, 2011, 11:27 AM

 

Priti

I was in the same situation as you (though at age 45, not 16 as is your son).

Eventually I settled on the approach of starting with simple treatments and

moving to more aggressive treatments as needed. I felt that if dilitation could

offer me relief, then I would start there. I decided to hold off on playing the

'surgery card' as long as dilatation was was working.

I, too, have been told that there are a limited number of times surgery can be

done so this is something to check out. At 16, your son has a long way to go.

I spoke with several experts in my area and read quite a bit online as well. To

me, it seemed that some doctors seemed to have their own biases or 'agenda'. I

was difficult for me to determine whether or not their recommendations were

always in my best interest. The information I got from reading and office

visits with multiple experts helped me understand this and helped me get

comfortable with my ultimate decision.

Above ALL ELSE, my recommendation is to DO SOMETHING. Get treatment this year.

And, avoid Botox.

Since it sounds as if you have access to Chicago area hospitals, I can

personally vouch for Dr. Kahrilas @Northwestern (dilation) and for Dr. Patti @U

of Chicago (myotomy). They are among the best from what I can tell and have

very significant experience with achalasia. The procedures for dilatation

continue to improve and, for me, the whole process was virtually painless and

totally comfortable.

And, as far as I know, having dilatation does not preclude surgery in the

future.

Good luck!

--Rich

[Guest guest]

Hi Priti-

My son is almost 12. He was diagnosed w achalasia at 9. They started out with

dilations using bougie catheters. These are rigid catheters that come in various

widths that they basically insert to try and stretch out the e and break any

scar tissue. I can tell you from our experience that he had about 5 dilations,

the last with the biggest bougie they had. It only lasted a couple months. He

had theheller about 3 months after diagnosis and trying the dilations. He did

great until about 6 months ago when his symptoms returned, thankfully not as

severe. He is going to need a dilation soon. I think there may be sone

differences on the effects of treatment between kids and adults, and I think

everybody has different results. I know for us the less invasive methods were

the best way to start. After the heller though he was a brand new kid! Good luck

to you! I know it's tough to see your child go through this.

Sent from my iPhone

On May 30, 2011, at 2:19 PM, Preeti Mahajan <priti19.mahajan@...> wrote:

> Thanks Rich, thank you for sharing your story. How long ago did you get

dilation?

> Do you still have relief?

>

> The doctor assistant said that this dilatation that they do is different. It

is not the big balloon but it is endoscopy with dilation-something with rubber

dilation (blue G??)

>

> I was just thinking since my son is just 16 if dilation does not last and he

has to have it done every 6 months then in college it may be a more of a trouble

for him to deal with it. So maybe get a surgery, next dilation. Do you think

after surgery if we have to get Dilation, it will be less effective? Any

thoughts or what you may have heard?

>

> Thanks.

> Priti

>

>

>

> From: richinchicagousa <jazz77@...>

> Subject: Re: Heller Myotomy vs Dilation

> achalasia

> Date: Sunday, May 29, 2011, 11:27 AM

>

>

>

> Priti

>

> I was in the same situation as you (though at age 45, not 16 as is your son).

>

> Eventually I settled on the approach of starting with simple treatments and

moving to more aggressive treatments as needed. I felt that if dilitation could

offer me relief, then I would start there. I decided to hold off on playing the

'surgery card' as long as dilatation was was working.

>

> I, too, have been told that there are a limited number of times surgery can be

done so this is something to check out. At 16, your son has a long way to go. I

spoke with several experts in my area and read quite a bit online as well. To

me, it seemed that some doctors seemed to have their own biases or 'agenda'. I

was difficult for me to determine whether or not their recommendations were

always in my best interest. The information I got from reading and office visits

with multiple experts helped me understand this and helped me get comfortable

with my ultimate decision.

>

> Above ALL ELSE, my recommendation is to DO SOMETHING. Get treatment this year.

And, avoid Botox.

>

> Since it sounds as if you have access to Chicago area hospitals, I can

personally vouch for Dr. Kahrilas @Northwestern (dilation) and for Dr. Patti @U

of Chicago (myotomy). They are among the best from what I can tell and have very

significant experience with achalasia. The procedures for dilatation continue to

improve and, for me, the whole process was virtually painless and totally

comfortable.

>

> And, as far as I know, having dilatation does not preclude surgery in the

future.

>

> Good luck!

>

> --Rich

>

>

[Guest guest]

Priti wrote:

>

> It is not the big balloon but it is endoscopy with

> dilation-something with rubber dilation (blue G??)

>

That would be a bougie dilator.

http://www.medivisuals.com/images/view.aspx?productId=1158

>

> I was just thinking since my son is just 16 if dilation does not last

> and he has to have it done every 6 months then in college it may be a

> more of a trouble for him to deal with it. So maybe get a surgery,

> next dilation. Do you think after surgery if we have to get

> Dilation, it will be less effective? Any thoughts or what you may

> have heard?

>

Before surgery dilatation is for stretching and breaking muscle fibers.

After surgery, if the myotomy was complete enough, dilatation may be

mainly for breaking scar tissue. Sometime a " tune-up " dilatation after

some healing is needed and then it is possible that another would not be

needed for many years, but there are no guarantees.

notan

[Guest guest]

Hi Notan,

Appreciate your reply.  Oh yes, it is bougie dilator, that is the 1st time I

heard of it from the doctor assistant.  I didn't remember reading on it here so

was unfamiliar to it.

I am still lost and confused, not sure which path to take...as I have

conflicting suggestion from the doctor's.  I feel surgery may give my son

longer relief as everywhere I read the research shows for young boys that works

well than dilation.  Notan, what is your opinion? You have a wealth of

knowledge on this disease.  If you were in my situation which direction you

would have chosen?  If you do not mind can you let me know your opinion in

simple words what are your thoughts?  I know you are not a doctor and neither

am I so I need to work with my inner feeling, the more I read, it gets more

confusing.  So I know at one point on another I will have to just decide and

try it but knowing your thoughts will give me some peace in my decision making

too.  I will appreciate your opinion.

Thanks for being there for us all.

Priti

>

> It is not the big balloon but it is endoscopy with

> dilation-something with rubber dilation (blue G??)

>

That would be a bougie dilator.

http://www.medivisuals.com/images/view.aspx?productId=1158

>

> I was just thinking since my son is just 16 if dilation does not last

> and he has to have it done every 6 months then in college it may be a

> more of a trouble for him to deal with it. So maybe get a surgery,

> next dilation. Do you think after surgery if we have to get

> Dilation, it will be less effective? Any thoughts or what you may

> have heard?

>

Before surgery dilatation is for stretching and breaking muscle fibers.

After surgery, if the myotomy was complete enough, dilatation may be

mainly for breaking scar tissue. Sometime a " tune-up " dilatation after

some healing is needed and then it is possible that another would not be

needed for many years, but there are no guarantees.

notan

[Guest guest]

Priti wrote:

>

> I feel surgery may give my son longer relief as everywhere I read the

> research shows for young boys that works well than dilation. Notan,

> what is your opinion?

>

The research is not 100% convincing. I kind of hate to show you this

because it may make your decision harder, but I want to make a point and

this study helps. It is a lot to read and much of it may not mean a lot

to you, but I will try to point out the important parts and make them clear.

Predictors for outcome of failure of balloon dilatation in patients with

achalasia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002841/

(Lets call this study POFBD for short.)

First of all this is bigger than many of the studies on dilatation, 336

patients, with 122 under 40 years of age and 31 of those under 21 years

of age. Next, one of the things they did find was that dilatation did

not work as well in younger patients. No surprise there, but they didn't

find that being a male made any difference. In fact, the women are

reported to have done a little, very little, worse in this study than

the men. What can we make of this finding about male patients? Well, it

tells me that doctors and studies don't agree with each other. I don't

know if this one study is right or the ones that say being male makes a

difference are right.

Lets ask another question. If being male does make a difference, how

much difference does it make? According to:

Predictors of outcome of pneumatic dilation in achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15118976

" In 25 of 68 patients (37%) initially treated with a 3.0-cm balloon, PD

failed within 3 months. Twenty-two of 25 patients (88%) with early

failure were men. "

Usually the gender mix for achalasia is about even, so assuming there

were 34 men and 34 women then men had about a 65% chance of failing in

that three months and women had about a 9% chance. You can't really

compare that result to those in POFBD because here they only had one

30mm dilatation but in POFBD they either had dilated the patients on

three consecutive days with 30, 35 and 40 mm dilators or all 40mm. In

this study, not POFBD, if the dilatation failed then they did another

with a bigger balloon with a max of 40mm. After repeat dilatation the

success rates increased. Neither of these studies is about bougie

dilators. Not everyone does dilatations the same way so the success and

failure rates may change with the methods. In this study males were

still more likely to fail even after graded dilatation than woman but

the abstract does not say what that rate was but it must have been less

than for the single dilatation.

> You have a wealth of knowledge on this disease. If you were in my

> situation which direction you would have chosen? If you do not mind

> can you let me know your opinion in simple words what are your

> thoughts? I know you are not a doctor and neither am I so I need to

> work with my inner feeling, the more I read, it gets more confusing.

>

I probably don't have the wealth of knowledge you think I do. I don't

think there is a right answer. Don't think you have to find the right

answer because it probably doesn't exist. The answer for one person is

not the same for another in the same situation. They will have different

things that matter to them. One will be more concerned with risk and

another more concerned with benefits. One more with short-term the other

more with long-term results. Some may need to know that they gave the

alternative a chance before passing it by. That would not matter to others.

> So I know at one point on another I will have to just decide and try

> it but knowing your thoughts will give me some peace in my decision

> making too. I will appreciate your opinion.

>

Decide what is most important for you and your son now. Is it the risk

of needing more treatments? The risk of failure at a particular time,

such as higher education? The fear of surgery? Feeling the best now? The

cost? Choose what you are aiming for. There are some trade offs. Then

see what fits your concerns the best. For me, if I was concerned about

surgery I might give dilatation a try. I don't think trying it is likely

to ruin his esophagus. The more you do it the more chance there could be

for that, but it wouldn't stop me from trying it. I would not be stuck

to one plan though. If things seemed to need reevaluation I would and if

needed change the plan, but it would be good to chose one and set things

in motion. If my concern was about reducing the interference for school

years then I would give surgery a strong consideration. If there were

certain years of concern some time in the future. I would consider if I

wanted to postpone surgery for a time closer to those years. I am not

saying I would but I would think about that.

It would all depend on what was important to me at the time and what

doctors were saying about my concerns and how I took their responses.

There are no guarantees. Any choice can become a disaster or be a great

benefit. All you can do is try to understand the risks then try to put

out of your mind the risk that are too small to compare to the benefits

and chose the benefits that fit your concerns. Make a choice and once

the treatment is done never look back no matter how it turns out.

Remember you did what you could at the time.

notan

[Guest guest]

Thanks Notan!

>

> I feel surgery may give my son longer relief as everywhere I read the

> research shows for young boys that works well than dilation. Notan,

> what is your opinion?

>

The research is not 100% convincing. I kind of hate to show you this

because it may make your decision harder, but I want to make a point and

this study helps. It is a lot to read and much of it may not mean a lot

to you, but I will try to point out the important parts and make them clear.

Predictors for outcome of failure of balloon dilatation in patients with

achalasia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002841/

(Lets call this study POFBD for short.)

First of all this is bigger than many of the studies on dilatation, 336

patients, with 122 under 40 years of age and 31 of those under 21 years

of age. Next, one of the things they did find was that dilatation did

not work as well in younger patients. No surprise there, but they didn't

find that being a male made any difference. In fact, the women are

reported to have done a little, very little, worse in this study than

the men. What can we make of this finding about male patients? Well, it

tells me that doctors and studies don't agree with each other. I don't

know if this one study is right or the ones that say being male makes a

difference are right.

Lets ask another question. If being male does make a difference, how

much difference does it make? According to:

Predictors of outcome of pneumatic dilation in achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15118976

" In 25 of 68 patients (37%) initially treated with a 3.0-cm balloon, PD

failed within 3 months. Twenty-two of 25 patients (88%) with early

failure were men. "

Usually the gender mix for achalasia is about even, so assuming there

were 34 men and 34 women then men had about a 65% chance of failing in

that three months and women had about a 9% chance. You can't really

compare that result to those in POFBD because here they only had one

30mm dilatation but in POFBD they either had dilated the patients on

three consecutive days with 30, 35 and 40 mm dilators or all 40mm. In

this study, not POFBD, if the dilatation failed then they did another

with a bigger balloon with a max of 40mm. After repeat dilatation the

success rates increased. Neither of these studies is about bougie

dilators. Not everyone does dilatations the same way so the success and

failure rates may change with the methods. In this study males were

still more likely to fail even after graded dilatation than woman but

the abstract does not say what that rate was but it must have been less

than for the single dilatation.

> You have a wealth of knowledge on this disease. If you were in my

> situation which direction you would have chosen? If you do not mind

> can you let me know your opinion in simple words what are your

> thoughts? I know you are not a doctor and neither am I so I need to

> work with my inner feeling, the more I read, it gets more confusing.

>

I probably don't have the wealth of knowledge you think I do. I don't

think there is a right answer. Don't think you have to find the right

answer because it probably doesn't exist. The answer for one person is

not the same for another in the same situation. They will have different

things that matter to them. One will be more concerned with risk and

another more concerned with benefits. One more with short-term the other

more with long-term results. Some may need to know that they gave the

alternative a chance before passing it by. That would not matter to others.

> So I know at one point on another I will have to just decide and try

> it but knowing your thoughts will give me some peace in my decision

> making too. I will appreciate your opinion.

>

Decide what is most important for you and your son now. Is it the risk

of needing more treatments? The risk of failure at a particular time,

such as higher education? The fear of surgery? Feeling the best now? The

cost? Choose what you are aiming for. There are some trade offs. Then

see what fits your concerns the best. For me, if I was concerned about

surgery I might give dilatation a try. I don't think trying it is likely

to ruin his esophagus. The more you do it the more chance there could be

for that, but it wouldn't stop me from trying it. I would not be stuck

to one plan though. If things seemed to need reevaluation I would and if

needed change the plan, but it would be good to chose one and set things

in motion. If my concern was about reducing the interference for school

years then I would give surgery a strong consideration. If there were

certain years of concern some time in the future. I would consider if I

wanted to postpone surgery for a time closer to those years. I am not

saying I would but I would think about that.

It would all depend on what was important to me at the time and what

doctors were saying about my concerns and how I took their responses.

There are no guarantees. Any choice can become a disaster or be a great

benefit. All you can do is try to understand the risks then try to put

out of your mind the risk that are too small to compare to the benefits

and chose the benefits that fit your concerns. Make a choice and once

the treatment is done never look back no matter how it turns out.

Remember you did what you could at the time.

notan

[Guest guest]

Interesting read...my dd has had two dilitations since Jan and they both have

failed and she is 14. I sure wish I wouldve found this group earlier. Such great

advice. Thanks everyone.

>

> I feel surgery may give my son longer relief as everywhere I read the

> research shows for young boys that works well than dilation. Notan,

> what is your opinion?

>

The research is not 100% convincing. I kind of hate to show you this

because it may make your decision harder, but I want to make a point and

this study helps. It is a lot to read and much of it may not mean a lot

to you, but I will try to point out the important parts and make them clear.

Predictors for outcome of failure of balloon dilatation in patients with

achalasia

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002841/

(Lets call this study POFBD for short.)

First of all this is bigger than many of the studies on dilatation, 336

patients, with 122 under 40 years of age and 31 of those under 21 years

of age. Next, one of the things they did find was that dilatation did

not work as well in younger patients. No surprise there, but they didn't

find that being a male made any difference. In fact, the women are

reported to have done a little, very little, worse in this study than

the men. What can we make of this finding about male patients? Well, it

tells me that doctors and studies don't agree with each other. I don't

know if this one study is right or the ones that say being male makes a

difference are right.

Lets ask another question. If being male does make a difference, how

much difference does it make? According to:

Predictors of outcome of pneumatic dilation in achalasia.

http://www.ncbi.nlm.nih.gov/pubmed/15118976

" In 25 of 68 patients (37%) initially treated with a 3.0-cm balloon, PD

failed within 3 months. Twenty-two of 25 patients (88%) with early

failure were men. "

Usually the gender mix for achalasia is about even, so assuming there

were 34 men and 34 women then men had about a 65% chance of failing in

that three months and women had about a 9% chance. You can't really

compare that result to those in POFBD because here they only had one

30mm dilatation but in POFBD they either had dilated the patients on

three consecutive days with 30, 35 and 40 mm dilators or all 40mm. In

this study, not POFBD, if the dilatation failed then they did another

with a bigger balloon with a max of 40mm. After repeat dilatation the

success rates increased. Neither of these studies is about bougie

dilators. Not everyone does dilatations the same way so the success and

failure rates may change with the methods. In this study males were

still more likely to fail even after graded dilatation than woman but

the abstract does not say what that rate was but it must have been less

than for the single dilatation.

> You have a wealth of knowledge on this disease. If you were in my

> situation which direction you would have chosen? If you do not mind

> can you let me know your opinion in simple words what are your

> thoughts? I know you are not a doctor and neither am I so I need to

> work with my inner feeling, the more I read, it gets more confusing.

>

I probably don't have the wealth of knowledge you think I do. I don't

think there is a right answer. Don't think you have to find the right

answer because it probably doesn't exist. The answer for one person is

not the same for another in the same situation. They will have different

things that matter to them. One will be more concerned with risk and

another more concerned with benefits. One more with short-term the other

more with long-term results. Some may need to know that they gave the

alternative a chance before passing it by. That would not matter to others.

> So I know at one point on another I will have to just decide and try

> it but knowing your thoughts will give me some peace in my decision

> making too. I will appreciate your opinion.

>

Decide what is most important for you and your son now. Is it the risk

of needing more treatments? The risk of failure at a particular time,

such as higher education? The fear of surgery? Feeling the best now? The

cost? Choose what you are aiming for. There are some trade offs. Then

see what fits your concerns the best. For me, if I was concerned about

surgery I might give dilatation a try. I don't think trying it is likely

to ruin his esophagus. The more you do it the more chance there could be

for that, but it wouldn't stop me from trying it. I would not be stuck

to one plan though. If things seemed to need reevaluation I would and if

needed change the plan, but it would be good to chose one and set things

in motion. If my concern was about reducing the interference for school

years then I would give surgery a strong consideration. If there were

certain years of concern some time in the future. I would consider if I

wanted to postpone surgery for a time closer to those years. I am not

saying I would but I would think about that.

It would all depend on what was important to me at the time and what

doctors were saying about my concerns and how I took their responses.

There are no guarantees. Any choice can become a disaster or be a great

benefit. All you can do is try to understand the risks then try to put

out of your mind the risk that are too small to compare to the benefits

and chose the benefits that fit your concerns. Make a choice and once

the treatment is done never look back no matter how it turns out.

Remember you did what you could at the time.

notan