Re: Heller Myotomy vs Dilation

[Guest guest]

Being that I am new to this whole thing I can give you from my experience. My

daughter was diagnosed with achalasia at age 13.Christmas eve of 2009 we had a

balloon dilation which did nothing . We finally opted for surgery...she had lost

50 lbs and we had been to 4 different ER rooms for fluids and her last one she

literally passed out. We were very close to a feeding tube to keep her hydrated.

Surgery for me couldnt come soon enough. We had the surgery and for the 9 mos.

afterward it was great. Then it started again....and here I sit...we have had 2

balloon dilations in 4 mos. with no relief. I am now in the process of trying to

get my records moved for Dr. Patti...which that in it self seems to be a royal

pain. She needs some relief...so...that is my experience and now my daughter is

14. I hope and pray everything turns out great for you but it can be short lived

like mine.

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

Subject: Heller Myotomy vs Dilation

achalasia

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

 

Hi,

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

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.

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

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

Thanks,

Priti

[Guest guest]

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

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Hi,

>

>

>

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

>

>

>

> 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.

>

>

>

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

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

>

>

>

> Thanks,

>

> Priti

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear Priti,

Nothing stops you from going to the hospital picking up the records and over

nighting them to the physician. Be prepared to wait for the physician to look at

them. More than likely the Dr's office didn't send a request. The hospitals,

always keep paper trails of faxes. Sometimes you have to deal with a not so

competent office staff to see a good physician. You might check out Dr Ferguson

who is a thoracic surgeon in Chicago if your not happy with Dr. Patti. I can

promise his office was wonderful. He is a good surgeon. I have seen Rice,

Ferguson, and opted for luketich for my ectomy. Not saying that is where your at

yet, but all these physicians perform myotomy's. Re-do's are very tricky.

Kristi

>

> >

>

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

>

> > Subject: Heller Myotomy vs Dilation

>

> > achalasia

>

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

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >  

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> > Hi,

>

> >

>

> >

>

> >

>

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

>

> >

>

> >

>

> >

>

> > 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.

>

> >

>

> >

>

> >

>

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

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

>

> >

>

> >

>

> >

>

> > Thanks,

>

> >

>

> > Priti

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

>

> >

[Guest guest]

" ...the next step is removal of esophagus.. " I don't think that's necessarily

true. Some people here have had multiple Myotomy procedures, I think.

I was 33 when I had my Myotomy and it so far has been great (I'm 6 months in). I

know someone who dies the dilation every few years, and it just seemed like a

lot to be signing up for - a risky procedure every 2-3 years for the rest of my

life.

>

> Hi,

>

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

>

> 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.

>

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

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

>

> Thanks,

> Priti

>

[Guest guest]

Priti wrote:

> 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.

>

Was the physician assistant conveying Dr. Luketich's opinion or just

doing triage based on his own understanding?

According to some studies males do not do as well as females with

dilatation and young patients don't do as well as older patients with

dilatation, young males, under 40, seem to do the worst with dilatation.

That is all statical and how any person will do can not be completely

predicted by the statistics. Your son may do well and beat the

statistics, or maybe he is one that the more ominous statistics applies

to. Dilatation is less invasive but not if there is a bad perforation of

the esophagus while doing it. The risk of that is probably small though.

There is some debate about how much dilatation may cause problems with a

myotomy later. Personally, I don't think that would stop me, as an

adult, from trying dilatation before surgery. I went with surgery first

because it looked to me like my best chance to get the best result.

Dr. Richter strikes me as being more pro dilatation than many doctors.

If he is not for dilatation in this case that would mean a lot to me. On

the other hand, if Dr. Luketich is for trying dilatation in this case

that would also mean a lot to me.

There is a chance that either way, at some point in time, a myotomy or

another myotomy is going to be needed and eventually even an

esophagectomy. Hopefully that will not be the case. You can only, with

your doctors, try to make the best guess.

notan

[Guest guest]

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, I agree with Rich. Dr. Kahrilas did my dilatation and he is very good.

I've heard nothing good reports on Dr Patti. I had the dilatation done in Feb

2010 and am doing really well. I've also had some other treatments done which

have helped me a lot. See other emails from me.

Eva in Chicagoland

>

> 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]

This last weekend I attend a Symposium for Achalasia sufferers and it was

interesting to note that these doctors (3 of them) have performed 300 myotomies

and there research seem to show that younger patients respond well to surgery

why older patients respond better to botox or dilation. Older being over 50.

Just a thought

Blessings,

Jc

------------------------

http://www.facebook.com/home.php?sk=group_200707803300303 & ap=1

> >

> > 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]

>

> 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]

You will need to deal with your feelings. What are you most afraid of??

--Rich

>

> >

>

> > 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

>

>

>

>