Re: Heller Myotomy vs Dilation - for Priti

[Guest guest]

Priti,

I am going to go out on a limb here and give you my opinion and advice. Take

it for what its worth as i am not a doctor but just somone who has suffered from

this disease for 20 years now (I am only 36 soon to be 37).

Your son is young. he will have this disease for the rest of his life. I think

its in his best interest to hold onto his esophagus for as long as he can. From

what I have read, myotomy re-do's are complicated and are not as durable as 1st

time myotomies.

1st time myotomies can last upwards of 15 + years. We have seen even more than

20 on this board. This is great news but again, your son is so young and would

like to get way more than 20 years out of his surgery.

With this said, I would try the dilitation first (from an EXPERT) and see how

long it lasts. Plus very frequent check-ups with barium swallow testing to see

how his E is holding up over time. I say this because frankly if you go to the

BEST surgeon (in the future) for a myotomy, any scar tissue from the dilitation

most likely won't matter. i had scar tissue from a dilitation 14 years prior and

my myotomy has been successful so far (7 months post op). Ofcourse I went to one

of the best surgeons (Dr. Luketich). He is comfortable dealing with scar tissue.

So in summary, I would try to exhaust all procedures that will give your son the

longest time with his native esophagus. If the dilitation gives him 5+ or even

10 years and then a myotomy gives him another 15+ or 20 years then he can

possibly manage his entire life without needing to remove his E. There is always

the possiblity that he may need this surgery in the far future but by then maybe

the surgery will be even less invasive than it is now. We can always hope.

I was VERY confused about what to do about a year ago. You can read all my posts

in the history of this group. The more I read, the more confused i got. i needed

to go with my intuition and lean very heavily on God and my faith. This may not

sound like a great plan for some, but I tell you, it is what got me through and

I know I made the right decision.

i hope the best for you and your son. i will pray that you will feel peace and

confidence in the decision you make for him. I will also pray that the outcome

of such decision is a success for many many years.

Cara

> >

> > >

> >

> > > 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 Priti,

It seems to me that to generalize about dilatations, the younger the person is,

the shorter the time it lasts. The inflated balloon ruptures the muscle (LES),

and eventually it heals and contracts again. With an older person, the healing

process is much slower, usually yielding a more effective result. Thus, the

conclusion that younger people might be better off going straight to surgery.

Why not try a dilatation first?  I subscribed to that philosophy in the 1980's

when the surgery was far more major than now. So, what happened in my

thirties? 

I held off the major surgery for 10 years, while having multiple dilatations,

and struggled to keep my esophagus from getting worse. By the time I had my

surgery, my esophagus was in " end-stage " achalasia. Having the surgery earlier

would most likely have prevented it from becoming so " tortured, "   " twisted, "

" mega " that it became by having all the dilatations and holding off on the

surgery.

For everyone its an individual choice. Do what Cara did - seek out as many

opinions from the best doctors out there and draw your own conclusions.  One

problem that I found (as did others) - how does one decide amongst contrary

opinions given by doctors who are far more knowledgeable than we are?  Then,

of

course, as Cara, and others have done, either decide for yourself, or bring back

the opinions to the Board and we can all hash it out. In the end, while the

Board " talks, " you have to decide.  If its any comfort, most people end up

making the right decison for themselves or their family member.

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sun, June 5, 2011 2:58:15 PM

Subject: Re: Heller Myotomy vs Dilation - for Priti

 

Priti,

I am going to go out on a limb here and give you my opinion and advice. Take it

for what its worth as i am not a doctor but just somone who has suffered from

this disease for 20 years now (I am only 36 soon to be 37).

Your son is young. he will have this disease for the rest of his life. I think

its in his best interest to hold onto his esophagus for as long as he can. From

what I have read, myotomy re-do's are complicated and are not as durable as 1st

time myotomies.

1st time myotomies can last upwards of 15 + years. We have seen even more than

20 on this board. This is great news but again, your son is so young and would

like to get way more than 20 years out of his surgery.

With this said, I would try the dilitation first (from an EXPERT) and see how

long it lasts. Plus very frequent check-ups with barium swallow testing to see

how his E is holding up over time. I say this because frankly if you go to the

BEST surgeon (in the future) for a myotomy, any scar tissue from the dilitation

most likely won't matter. i had scar tissue from a dilitation 14 years prior and

my myotomy has been successful so far (7 months post op). Ofcourse I went to one

of the best surgeons (Dr. Luketich). He is comfortable dealing with scar tissue.

So in summary, I would try to exhaust all procedures that will give your son the

longest time with his native esophagus. If the dilitation gives him 5+ or even

10 years and then a myotomy gives him another 15+ or 20 years then he can

possibly manage his entire life without needing to remove his E. There is always

the possiblity that he may need this surgery in the far future but by then maybe

the surgery will be even less invasive than it is now. We can always hope.

I was VERY confused about what to do about a year ago. You can read all my posts

in the history of this group. The more I read, the more confused i got. i needed

to go with my intuition and lean very heavily on God and my faith. This may not

sound like a great plan for some, but I tell you, it is what got me through and

I know I made the right decision.

i hope the best for you and your son. i will pray that you will feel peace and

confidence in the decision you make for him. I will also pray that the outcome

of such decision is a success for many many years.

Cara

> >

> > >

> >

> > > 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]

Thank you very much Cara and .  It is much comfort hearing from your

side as I am feeling lots of confusion before this major decision in my son's

life.  I just hope I do my best for him.  Cara, just sharing my thoughts, I am

thinking maybe dilation was a good choice for you before surgery as Dr. Richter

did say that if it was a young lady he would have said go with dilation but for

young boys surgery is recommended.  I would think dilation would work equally

good if it is done after the 1st surgery and before thinking of re-do surgery if

need comes up in the future.  Would you know how dilation plays out after the

surgery, will it be effective as if it was done the 1st time around before

surgery?????

Thanks,

Priti

From: RICHARD FRIEDMAN <cynmark24@...>

Subject: Re: Re: Heller Myotomy vs Dilation - for Priti

achalasia

Date: Sunday, June 5, 2011, 12:17 PM

 

Hi Priti,

It seems to me that to generalize about dilatations, the younger the person is,

the shorter the time it lasts. The inflated balloon ruptures the muscle (LES),

and eventually it heals and contracts again. With an older person, the healing

process is much slower, usually yielding a more effective result. Thus, the

conclusion that younger people might be better off going straight to surgery.

Why not try a dilatation first?  I subscribed to that philosophy in the 1980's

when the surgery was far more major than now. So, what happened in my

thirties? 

I held off the major surgery for 10 years, while having multiple dilatations,

and struggled to keep my esophagus from getting worse. By the time I had my

surgery, my esophagus was in " end-stage " achalasia. Having the surgery earlier

would most likely have prevented it from becoming so " tortured, "   " twisted, "

" mega " that it became by having all the dilatations and holding off on the

surgery.

For everyone its an individual choice. Do what Cara did - seek out as many

opinions from the best doctors out there and draw your own conclusions.  One

problem that I found (as did others) - how does one decide amongst contrary

opinions given by doctors who are far more knowledgeable than we are?  Then,

of

course, as Cara, and others have done, either decide for yourself, or bring back

the opinions to the Board and we can all hash it out. In the end, while the

Board " talks, " you have to decide.  If its any comfort, most people end up

making the right decison for themselves or their family member.

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Sun, June 5, 2011 2:58:15 PM

Subject: Re: Heller Myotomy vs Dilation - for Priti

 

Priti,

I am going to go out on a limb here and give you my opinion and advice. Take it

for what its worth as i am not a doctor but just somone who has suffered from

this disease for 20 years now (I am only 36 soon to be 37).

Your son is young. he will have this disease for the rest of his life. I think

its in his best interest to hold onto his esophagus for as long as he can. From

what I have read, myotomy re-do's are complicated and are not as durable as 1st

time myotomies.

1st time myotomies can last upwards of 15 + years. We have seen even more than

20 on this board. This is great news but again, your son is so young and would

like to get way more than 20 years out of his surgery.

With this said, I would try the dilitation first (from an EXPERT) and see how

long it lasts. Plus very frequent check-ups with barium swallow testing to see

how his E is holding up over time. I say this because frankly if you go to the

BEST surgeon (in the future) for a myotomy, any scar tissue from the dilitation

most likely won't matter. i had scar tissue from a dilitation 14 years prior and

my myotomy has been successful so far (7 months post op). Ofcourse I went to one

of the best surgeons (Dr. Luketich). He is comfortable dealing with scar tissue.

So in summary, I would try to exhaust all procedures that will give your son the

longest time with his native esophagus. If the dilitation gives him 5+ or even

10 years and then a myotomy gives him another 15+ or 20 years then he can

possibly manage his entire life without needing to remove his E. There is always

the possiblity that he may need this surgery in the far future but by then maybe

the surgery will be even less invasive than it is now. We can always hope.

I was VERY confused about what to do about a year ago. You can read all my posts

in the history of this group. The more I read, the more confused i got. i needed

to go with my intuition and lean very heavily on God and my faith. This may not

sound like a great plan for some, but I tell you, it is what got me through and

I know I made the right decision.

i hope the best for you and your son. i will pray that you will feel peace and

confidence in the decision you make for him. I will also pray that the outcome

of such decision is a success for many many years.

Cara

> >

> > >

> >

> > > 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]

Cara wrote:

>

> ... If the dilitation gives him 5+ or even 10 years and then a myotomy

> gives him another 15+ or 20 years then he can possibly manage his

> entire life without needing to remove his E. ...

>

That assumes that the durations of benefit are additive for the two

treatments. I doubt that is completely correct but know of any good data

directed at it.

notan

[Guest guest]

>

> > >

>

> > > >

>

> > >

>

> > > > 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-

My son was 9 when he was diagnosed. He had multiple dilations with the bougie

dilators. The longest relief he got was one month before his doc and I decided

to do the HM. Again, everyone is different and as a parent I chose the less

invasive procedure. But the difference between the relief from his dilations and

the HM is night and day. Tough choice to make when it's your child, I know! Good

luck to you in whatever you decide.

Sent from my iPhone

On Jun 5, 2011, at 4:05 PM, Preeti Mahajan <priti19.mahajan@...> wrote:

> Thank you very much Cara and . It is much comfort hearing from your

side as I am feeling lots of confusion before this major decision in my son's

life. I just hope I do my best for him. Cara, just sharing my thoughts, I am

thinking maybe dilation was a good choice for you before surgery as Dr. Richter

did say that if it was a young lady he would have said go with dilation but for

young boys surgery is recommended. I would think dilation would work equally

good if it is done after the 1st surgery and before thinking of re-do surgery if

need comes up in the future. Would you know how dilation plays out after the

surgery, will it be effective as if it was done the 1st time around before

surgery?????

>

> Thanks,

> Priti

>

>

>

> From: RICHARD FRIEDMAN <cynmark24@...>

> Subject: Re: Re: Heller Myotomy vs Dilation - for Priti

> achalasia

> Date: Sunday, June 5, 2011, 12:17 PM

>

>

>

> Hi Priti,

>

> It seems to me that to generalize about dilatations, the younger the person

is,

>

> the shorter the time it lasts. The inflated balloon ruptures the muscle (LES),

>

> and eventually it heals and contracts again. With an older person, the healing

>

> process is much slower, usually yielding a more effective result. Thus, the

>

> conclusion that younger people might be better off going straight to surgery.

>

> Why not try a dilatation first? I subscribed to that philosophy in the 1980's

>

> when the surgery was far more major than now. So, what happened in my

thirties?

>

> I held off the major surgery for 10 years, while having multiple dilatations,

>

> and struggled to keep my esophagus from getting worse. By the time I had my

>

> surgery, my esophagus was in " end-stage " achalasia. Having the surgery earlier

>

> would most likely have prevented it from becoming so " tortured, " " twisted, "

>

> " mega " that it became by having all the dilatations and holding off on the

>

> surgery.

>

> For everyone its an individual choice. Do what Cara did - seek out as many

>

> opinions from the best doctors out there and draw your own conclusions. One

>

> problem that I found (as did others) - how does one decide amongst contrary

>

> opinions given by doctors who are far more knowledgeable than we are? Then,

of

>

> course, as Cara, and others have done, either decide for yourself, or bring

back

>

> the opinions to the Board and we can all hash it out. In the end, while the

>

> Board " talks, " you have to decide. If its any comfort, most people end up

>

> making the right decison for themselves or their family member.

>

>

>

> ________________________________

>

> From: spotoca <cspoto@...>

>

> achalasia

>

> Sent: Sun, June 5, 2011 2:58:15 PM

>

> Subject: Re: Heller Myotomy vs Dilation - for Priti

>

>

>

> Priti,

>

> I am going to go out on a limb here and give you my opinion and advice. Take

it

>

> for what its worth as i am not a doctor but just somone who has suffered from

>

> this disease for 20 years now (I am only 36 soon to be 37).

>

> Your son is young. he will have this disease for the rest of his life. I think

>

> its in his best interest to hold onto his esophagus for as long as he can.

From

>

> what I have read, myotomy re-do's are complicated and are not as durable as

1st

>

> time myotomies.

>

> 1st time myotomies can last upwards of 15 + years. We have seen even more than

>

> 20 on this board. This is great news but again, your son is so young and would

>

> like to get way more than 20 years out of his surgery.

>

> With this said, I would try the dilitation first (from an EXPERT) and see how

>

> long it lasts. Plus very frequent check-ups with barium swallow testing to see

>

> how his E is holding up over time. I say this because frankly if you go to the

>

> BEST surgeon (in the future) for a myotomy, any scar tissue from the

dilitation

>

> most likely won't matter. i had scar tissue from a dilitation 14 years prior

and

>

> my myotomy has been successful so far (7 months post op). Ofcourse I went to

one

>

> of the best surgeons (Dr. Luketich). He is comfortable dealing with scar

tissue.

>

> So in summary, I would try to exhaust all procedures that will give your son

the

>

> longest time with his native esophagus. If the dilitation gives him 5+ or even

>

> 10 years and then a myotomy gives him another 15+ or 20 years then he can

>

> possibly manage his entire life without needing to remove his E. There is

always

>

> the possiblity that he may need this surgery in the far future but by then

maybe

>

> the surgery will be even less invasive than it is now. We can always hope.

>

> I was VERY confused about what to do about a year ago. You can read all my

posts

>

> in the history of this group. The more I read, the more confused i got. i

needed

>

> to go with my intuition and lean very heavily on God and my faith. This may

not

>

> sound like a great plan for some, but I tell you, it is what got me through

and

>

> I know I made the right decision.

>

> i hope the best for you and your son. i will pray that you will feel peace and

>

> confidence in the decision you make for him. I will also pray that the outcome

>

> of such decision is a success for many many years.

>

> Cara

>

>

>

> > >

>

> > > >

>

> > >

>

> > > > 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,

I know what kind of pressure and stress you must be feeling right now. I have

2 young sons and one of them stopped eating at 3 months old. Ofcourse the first

thing I thought of was Achalasia and did everything in my power to get to the

bottom of the problem. I felt so helpless at that time. There were no answers at

first to why he was not eating and they had to put an NG tube into him to get

nutrition and to stay dehydrated. We did a barium swallow and an endoscopy test

and both were normal. They said it was reflux. They were wrong. But i had to

live with that NG tube in his nose until he was almost 7 months old. He had been

put on the max dosage of prevacid too. We come to find out he had a terribly

thick and long tongue tie and once it was cut he took the bottle again. It was

like a miracle. But i can not tell you the depression and axiety and

helplessness i felt during those 4 months that I had to give him tube feeds. It

was a nightmare.

So I just want to say, I understand how you feel. You have his utte rmost best

interests at heart and your intuition is going to play a big role in this

decision. Listen to it. It won't steer you wrong.

The reason I got a dilitation back in 1996 was because surgery was out of the

question in my mind. My parents are also surgery averse and a laproscopic

myotomy at that time was in its infancy. We had no idea that we needed to go to

a TOP GI or TOP surgeon. We went to a good doctor on Long Island that had a low

rate of perforations and that did a lot of dilitations. At least we knew that

much. It worked for about 2 years for me. HOWEVER, it was completely my fault as

to why my esophagus became so out of shape over the years. I never followed up.

I never kept up with GI visits and barium swallows to see the progression. I

just " managed " with power chugging water to get food to go down.

Those GI's that did my dilitation never told me I needed to seek further

treatment or checkups either. They told me I was good to go for life!

So what i am saying is that those studies that show a dilitation is better for

young women may not be accurate in all cases. i only got 2 years. What i should

have done is gotten the myotomy at the first sign that my swallowing was getting

worse and then myabe my E wouldn't be so stretched out as it is.

As for dilitations post myotomy, well I am not as well versed on that subject. I

haven't crossed that bridge yet. I do hope that if I have a return of symptoms

that i will qualify for additional dilitations before I need to cross the

esophagectomy bridge. I also do not know if dilitations post myotomy are more or

less effective than dilitations pre myotomy.

As notan said, any of these procedures could be worthless or actually have long

lasting benefits. It all depends on the person and the surgeon doing the work.

I feel like you are leaning towards surgery. And if you are and that makes you

feel comfortable, then stick with that decision, pick the best surgeon possible

and dont' look back. Everything will work out in the end.

All the best

Cara

>

> <priti19.mahajan@> wrote:

> >

> > Thank you very much Cara and .  It is much comfort hearing from your

side as I am feeling lots of confusion before this major decision in my son's

life.  I just hope I do my best for him.  Cara, just sharing my thoughts, I am

thinking maybe dilation was a good choice for you before surgery as Dr. Richter

did say that if it was a young lady he would have said go with dilation but for

young boys surgery is recommended.  I would think dilation would work equally

good if it is done after the 1st surgery and before thinking of re-do surgery if

need comes up in the future.  Would you know how dilation plays out after the

surgery, will it be effective as if it was done the 1st time around before

surgery?????

> >

> > Thanks,

> > Priti

[Guest guest]

One more thing.....

I did not have a bougie dialator when I had my dilitation. It was a pneumatic

dilitation with a balloon. I don't remember how big the balloon was. Maybe 30mm?

35mm? Not sure but it was done only once. Not progressive dilitations. I am glad

i got those 2 years of relief, my only regret is not getting the myotomy sooner.

I think I still would have chosen the dilitation first if I had to do it all

over again. I was young, graduation college that May and heading off to Europe

that summer. Surgery was not an option for me at that time.

Cara

> > >

> > > Thank you very much Cara and .  It is much comfort hearing from

your side as I am feeling lots of confusion before this major decision in my

son's life.  I just hope I do my best for him.  Cara, just sharing my

thoughts, I am thinking maybe dilation was a good choice for you before surgery

as Dr. Richter did say that if it was a young lady he would have said go with

dilation but for young boys surgery is recommended.  I would think dilation

would work equally good if it is done after the 1st surgery and before thinking

of re-do surgery if need comes up in the future.  Would you know how dilation

plays out after the surgery, will it be effective as if it was done the 1st time

around before surgery?????

> > >

> > > Thanks,

> > > Priti

>

[Guest guest]

Hi everyone,

Hope every on is doing great today, God knows how much we all wanted to escape

the fact that any of this procedure cannot withstand the disease long enough to

live a much better lifestyle. I was 15 when diagnosed having " A " , i tried to

hold on as much as I could not to undergo any these operation but after a year

my " E " worsen and cannot even intake any form of food even liquids so we decided

to undergo " dialation " , operation last for about 30-45mins and I can say that it

was a good decision. I'm 24 now in good shape and my " E " is working well though

sometimes I feel chest pain, but those pain occurs when I broke any of my own

" A " Rules " .

Godbless...

Thank you so much,

Regards,

Mark

>

> From: RICHARD FRIEDMAN <cynmark24@...>

> Subject: Re: Re: Heller Myotomy vs Dilation - for Priti

> achalasia

> Date: Sunday, June 5, 2011, 12:17 PM

>

>

>

> Hi Priti,

>

> It seems to me that to generalize about dilatations, the younger the person

is,

>

> the shorter the time it lasts. The inflated balloon ruptures the muscle (LES),

>

> and eventually it heals and contracts again. With an older person, the healing

>

> process is much slower, usually yielding a more effective result. Thus, the

>

> conclusion that younger people might be better off going straight to surgery.

>

> Why not try a dilatation first? I subscribed to that philosophy in the 1980's

>

> when the surgery was far more major than now. So, what happened in my

thirties?

>

> I held off the major surgery for 10 years, while having multiple dilatations,

>

> and struggled to keep my esophagus from getting worse. By the time I had my

>

> surgery, my esophagus was in " end-stage " achalasia. Having the surgery earlier

>

> would most likely have prevented it from becoming so " tortured, " " twisted, "

>

> " mega " that it became by having all the dilatations and holding off on the

>

> surgery.

>

> For everyone its an individual choice. Do what Cara did - seek out as many

>

> opinions from the best doctors out there and draw your own conclusions. One

>

> problem that I found (as did others) - how does one decide amongst contrary

>

> opinions given by doctors who are far more knowledgeable than we are? Then,

of

>

> course, as Cara, and others have done, either decide for yourself, or bring

back

>

> the opinions to the Board and we can all hash it out. In the end, while the

>

> Board " talks, " you have to decide. If its any comfort, most people end up

>

> making the right decison for themselves or their family member.

>

>

>

> ________________________________

>

> From: spotoca <cspoto@...>

>

> achalasia

>

> Sent: Sun, June 5, 2011 2:58:15 PM

>

> Subject: Re: Heller Myotomy vs Dilation - for Priti

>

>

>

> Priti,

>

> I am going to go out on a limb here and give you my opinion and advice. Take

it

>

> for what its worth as i am not a doctor but just somone who has suffered from

>

> this disease for 20 years now (I am only 36 soon to be 37).

>

> Your son is young. he will have this disease for the rest of his life. I think

>

> its in his best interest to hold onto his esophagus for as long as he can.

From

>

> what I have read, myotomy re-do's are complicated and are not as durable as

1st

>

> time myotomies.

>

> 1st time myotomies can last upwards of 15 + years. We have seen even more than

>

> 20 on this board. This is great news but again, your son is so young and would

>

> like to get way more than 20 years out of his surgery.

>

> With this said, I would try the dilitation first (from an EXPERT) and see how

>

> long it lasts. Plus very frequent check-ups with barium swallow testing to see

>

> how his E is holding up over time. I say this because frankly if you go to the

>

> BEST surgeon (in the future) for a myotomy, any scar tissue from the

dilitation

>

> most likely won't matter. i had scar tissue from a dilitation 14 years prior

and

>

> my myotomy has been successful so far (7 months post op). Ofcourse I went to

one

>

> of the best surgeons (Dr. Luketich). He is comfortable dealing with scar

tissue.

>

> So in summary, I would try to exhaust all procedures that will give your son

the

>

> longest time with his native esophagus. If the dilitation gives him 5+ or even

>

> 10 years and then a myotomy gives him another 15+ or 20 years then he can

>

> possibly manage his entire life without needing to remove his E. There is

always

>

> the possiblity that he may need this surgery in the far future but by then

maybe

>

> the surgery will be even less invasive than it is now. We can always hope.

>

> I was VERY confused about what to do about a year ago. You can read all my

posts

>

> in the history of this group. The more I read, the more confused i got. i

needed

>

> to go with my intuition and lean very heavily on God and my faith. This may

not

>

> sound like a great plan for some, but I tell you, it is what got me through

and

>

> I know I made the right decision.

>

> i hope the best for you and your son. i will pray that you will feel peace and

>

> confidence in the decision you make for him. I will also pray that the outcome

>

> of such decision is a success for many many years.

>

> Cara

>

>

>

> > >

>

> > > >

>

> > >

>

> > > > 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

>

> > >

>

> > >

>

> > >

>

> > >