recommendation

[Guest guest]

In a message dated 12/1/05 11:58:14 PM Eastern Standard Time,

pingzhiw@... writes:

> www.teahistory.net

this wouldn't open for me.

[Guest guest]

,

You don't need a timed barium swallow to diagnose achalasia, just

a regular barium swallow (showing the lower esophageal sphincter)

and manometry and probably endoscopy.

The purpose of the timed barium swallow is to be able to measure

the effectiveness of treatment, so it is good to have one of

those before surgery or endoscopic therapy (Caroline - that's

balloon dilation and/or Botox) in order to have a baseline for

measuring the results. But it isn't necessary for diagnosis.

Are you aware of Dr. Rosemurgy in Tampa, Florida? He is a highly

experienced surgeon for achalasia.

Email: arosemur@...

Phone: (813) 844-7393

Fax: (813) 844-7396

But I just looked up Dr. C. and it seems he is also

a highly experienced surgeon for achalasia. So if one or the

other is closer to you geographically you could take that into

consideration. The surgeons often prefer to have testing done in

their own institution.

in PA

----- Original Message -----

From: " kare4266 " <guerralkml@...>

>I contacted C. in ville to ask for a name of

>a

> doctor that he would highly recommend that would have the

> experience

> and knowledge to properly conduct the tests and perform any

> necessary treatments. He told me he would be willing to have me

> see

> one of his GI experts, and then see me himself and discuss

> surgery

> if needed. He did not recommend any other doctors. He is the

> one

> that participated in the article from the ls of Surgery

> that

> Peggy posted. Based on this article he is not too keen on

> preoperative endoscopic therapy because of more intraoperative

> complications, primarily perforation, more postoperative

> complications, and a higher rate of failure than when no

> preoperative therapy was used. He believes that endoscopic

> therapy

> for achalasia should not be used unless patients are not

> candidates

> for surgery. Anyway, I wanted to find out what everyone feels

> should

> be the first steps taken and what to be aware of. For example,

> should I first insist on having a Timed Barrium done to confirm

> that

> I actually do have Achalasia and if so, what do I need to be

> aware

> of when going to have this test done? Or is there something

> else I

> should do first?

>

> Thank you,

>

>

[Guest guest]

,

Thank you so much for the information!

I have not had any tests performed since 2002 when I had a monemetry

and scope. They diagnosed me with acid reflux and a spastic

esophagus. The doctor I saw said he thinks I may have Achalasia and

wants to do a scope and Botox. Well I just think it would be better

to do a Barium to confirm this before I let him start messing around

with me and doing treatments of any kind.I was just thinking that if

they are going to have to do the regular Barium to confirm and then

maybe turn around and do another timed one to get a baseline before

Botox or whatever...then why not do it from the very get go? I hate

doing those kind of tests so why torture myself twice!! I don't

know if the doctors would agree to my logic though. Does anyone know

how much these tests costs. I am still working on the insurance part.

Also, I am familiar with Dr. Rosemurgy because another member

recommended him to me. Yet another member told me that she went to

him. She said he was a good surgeon but not much on after care. She

said she has been having a lot of issue since June. So I don't know.

He is closer to me than Dr. is. I live in Orlando, FL. Dr.

Rosemurgy is in Tampa which is about a 1 1/2 hour drive. Dr.

is in ville which is about a 2 1/2 hour drive. So it would be

half the distance to go to Dr. Rosemurgy which might be better if I

have to go back and forth. I have a friend that lives in Tampa that

I can probably stay with if needed. I can't believe there are no

experts in Orlando. But I guess the real issue is to go to the best

doctor and not the driving time. I wonder how far in advance these

doctors are booked up.

>

> ,

>

> You don't need a timed barium swallow to diagnose achalasia, just

> a regular barium swallow (showing the lower esophageal sphincter)

> and manometry and probably endoscopy.

>

> The purpose of the timed barium swallow is to be able to measure

> the effectiveness of treatment, so it is good to have one of

> those before surgery or endoscopic therapy (Caroline - that's

> balloon dilation and/or Botox) in order to have a baseline for

> measuring the results. But it isn't necessary for diagnosis.

>

> Are you aware of Dr. Rosemurgy in Tampa, Florida? He is a highly

> experienced surgeon for achalasia.

> Email: arosemur@...

> Phone: (813) 844-7393

> Fax: (813) 844-7396

>

> But I just looked up Dr. C. and it seems he is also

> a highly experienced surgeon for achalasia. So if one or the

> other is closer to you geographically you could take that into

> consideration. The surgeons often prefer to have testing done in

> their own institution.

>

> in PA

>

> ----- Original Message -----

> From: " kare4266 " <guerralkml@...>

>

>

> >I contacted C. in ville to ask for a name of

> >a

> > doctor that he would highly recommend that would have the

> > experience

> > and knowledge to properly conduct the tests and perform any

> > necessary treatments. He told me he would be willing to have me

> > see

> > one of his GI experts, and then see me himself and discuss

> > surgery

> > if needed. He did not recommend any other doctors. He is the

> > one

> > that participated in the article from the ls of Surgery

> > that

> > Peggy posted. Based on this article he is not too keen on

> > preoperative endoscopic therapy because of more intraoperative

> > complications, primarily perforation, more postoperative

> > complications, and a higher rate of failure than when no

> > preoperative therapy was used. He believes that endoscopic

> > therapy

> > for achalasia should not be used unless patients are not

> > candidates

> > for surgery. Anyway, I wanted to find out what everyone feels

> > should

> > be the first steps taken and what to be aware of. For example,

> > should I first insist on having a Timed Barrium done to confirm

> > that

> > I actually do have Achalasia and if so, what do I need to be

> > aware

> > of when going to have this test done? Or is there something

> > else I

> > should do first?

> >

> > Thank you,

> >

> >

>

[Guest guest]

wrote:

> ...should I first insist on having a Timed Barrium done to confirm that

> I actually do have Achalasia ...

This question is interesting, considering your history. The way most

people find out they have achalasia is that they tell their doctors that

they have difficulty swallowing, the last thing he is going to think of,

if he even knows about it, is achalasia, and he either orders a barium

swallow or he has an endoscope view the esophagus expecting to find

something other than achalasia. The scope will not find achalasia but

the barium may indicate achalasia. If the scope and barium don't find

anything else, or are inconclusive, or either suggests achalasia, a

manometry is often ordered. The manometry is considered " the gold

standard " for diagnosing achalasia and is a better indicator of how

effective treatment will be than a scope or barium swallow. So,

considering that you had the " gold standard " years ago did it not

confirm achalasia then? Maybe not. You could have progressed to

achalasia over the years and at that time it may have indicated a pre

achalasia condition. If it did indicate achalasia years ago then you

should still have achalasia now. If it did not indicate achalasia before

then I would want another manometry to compare now and clear up any

doubt from the last time. If this were for me, I would find a doctor

expert in achalasia and have him review your old manometry and see what

test he would have done now.

Insurance can be a problem. After you start you may have to wait months,

maybe a year, to have a preexisting condition covered. I would find some

experts in achalasia and find out what insurance they are in network

for. If you need to go to one that is out of network you will have the

headache of getting approval and even after getting approval you may in

up in a " Usual and Customary " payment nightmare.

notan

[Guest guest]

Hi Notan,

I am not sure why my doctor did not even suggest doing a Barium. He

wanted to go in and do a scope I guess to see the condition of the

esophagus and to do a biopsy if needed. This I don't have a problem

with. I appreciate your providing me with all the insight on the

different tests. When I had the monometry done they told me it was

DES but maybe they questioned Achalasia. But they still don't know

looking at it now, they said it should be considered. Well you are

right I do need to take the tests to someone who has more experience

with Achalasia and have them look at the tests from before and let

them decide what test would be the best to confirm whether this is

what I have or not. But does the monometry show whether the

spinchter is staying closed or do you need to do the barium to for

this?

I certainly hope that I don't run into any problems with getting

coverage for this now. I am so nervous about this. This is not in

any of my doctors records although the acid reflux may be. But I am

not concerned about that. I just don't want there to be a rider for

the Achalasia. The records department at the GI office told me the

doctor wrote that I had acid reflux and spastic esophagus and check

Achalasia. I don't know if this would be considered a diagnose or

not. I will give the insurance company the name of my other primary

doctor in hopes they do not find out about the A word. Otherwise it

would be pointless for me to get the coverage at all.

>

> > ...should I first insist on having a Timed Barrium done to

confirm that

> > I actually do have Achalasia ...

>

> This question is interesting, considering your history. The way

most

> people find out they have achalasia is that they tell their

doctors that

> they have difficulty swallowing, the last thing he is going to

think of,

> if he even knows about it, is achalasia, and he either orders a

barium

> swallow or he has an endoscope view the esophagus expecting to

find

> something other than achalasia. The scope will not find achalasia

but

> the barium may indicate achalasia. If the scope and barium don't

find

> anything else, or are inconclusive, or either suggests achalasia,

a

> manometry is often ordered. The manometry is considered " the gold

> standard " for diagnosing achalasia and is a better indicator of

how

> effective treatment will be than a scope or barium swallow. So,

> considering that you had the " gold standard " years ago did it not

> confirm achalasia then? Maybe not. You could have progressed to

> achalasia over the years and at that time it may have indicated a

pre

> achalasia condition. If it did indicate achalasia years ago then

you

> should still have achalasia now. If it did not indicate achalasia

before

> then I would want another manometry to compare now and clear up

any

> doubt from the last time. If this were for me, I would find a

doctor

> expert in achalasia and have him review your old manometry and see

what

> test he would have done now.

>

> Insurance can be a problem. After you start you may have to wait

months,

> maybe a year, to have a preexisting condition covered. I would

find some

> experts in achalasia and find out what insurance they are in

network

> for. If you need to go to one that is out of network you will have

the

> headache of getting approval and even after getting approval you

may in

> up in a " Usual and Customary " payment nightmare.

>

> notan

>

[Guest guest]

wrote:

> I am not sure why my doctor did not even suggest doing a Barium. He

> wanted to go in and do a scope I guess to see the condition of the

> esophagus and to do a biopsy if needed.

The scope is good at finding many problems, some which could result from

food being stuck. Some doctors like to check us for cancer and

infections. The risk of cancer is low but some doctors like to make sure.

> When I had the monometry done they told me it was

> DES but maybe they questioned Achalasia.

There has been some thought that DES can become achalasia. Also, some

people have symptoms that don't always fit nicely into a diagnosis of

one or the other. The way to be sure about something like DES is with a

very high tech manometry, high resolution. You won't find those high

resolution manometry devices in most labs. Ask about that. If

your symptoms are DES like, you may not receive as much benefit from a

myotomy as someone with classic achalasia. With achalasia the main spasm

is in the LES at the end of the esophagus, and that is the main source

of blockage for food. In DES the spasms are more along the body of the

esophagus and food can be blocked anywhere in it. In achalasia the

myotomy is done to weaken the LES. In the past, for DES a long myotomy

was done along the body of the esophagus, but this does not seem to be

done much any more. One of the indicators that a patient will benefit

from a Heller myotomy is a high resting pressure in the LES. The higher

the LES pressure the more likely there will be significant benefit. A

manometry gives useful data about these things. One other way to see if

a Heller myotomy will help is to try Botox, but some surgeons will not

be happy if you do that. Some others don't seem to care.

> But does the monometry show whether the

> spinchter is staying closed or do you need to do the barium to for

> this?

>

It not only tells when it is closed, but also when it is closed when it

should not be, when it is open (relaxed) when it should not be, how much

pressure there is when closed and how much pressure there is when open

and how strong and functional your peristalsis is.

One more thing on the insurance. If you end up with an 80/20 plan the

cost of a myotomy can still be high. The cost can vary a lot. Mine at

Mayo sdale was about $30,000. On an 80/20 plan I would have owed

about $6,000.

notan

[Guest guest]

Hi

Dr Lee - Mass Eye and Ear in Boston --I believe he is

adult and pediatric - Best of luck with your son! You can

check out mass eye and ears web sites and read about their doctors.

>

> Hi everyone,

> My 9 yo son may have a possible Ctoma in his left ear. All this talk about

surgery is really freaking me out. I want him to have the best pedi ENT,

so......

>

> looking for recommendations for pediatric ENT's in the Boston or Hartford, CT

areas.

>

>

> Also, are CT scans routinely used in the diagnosis?

>

> Thanks

>