Not so new member; but finally have diagnosis

Posted March 9, 2011 · March 9, 2011

Good morning everyone,

I started having difficulty swallowing a few years ago. I've had the

tightness/pain in chest for a long time. The cardiologist did all sorts of

tests, could find nothing. They put me on prilosec which did nothing. Finally

that chest pain went away and then the swallowing problems began. It wasn't

often (and at the time I ate a LOT) so I did nothing. Then the choking began.

It seems about a year ago the choking got bad enough that I've stopped eating

dinner, eat mostly soup for lunch and have dropped quite a bit of weight.

I did a Barium swallow and have the classic Bird's beak. The doctor sent me to

a GI specialist who immediately said surgery. He didn't say what kind, I just

assumed the HM because that's what I had been reading about.

I'm not sure if I should just take him at his word, research more ... and I'm

not sure where to go for information. My insurance also wont cover the hospital

I've been to for all my other things, so I'm not sure what doctor or hospital to

go to.

I've lurked on these forums for quite some time now as I was trying to pay off

medical bills last year so I didn't pursue a doctor visit until this year, but

now that i have a diagnosis of Achalasia, I thought I " d post...

Any help/ideas/advice are most welcome.

Posted March 9, 2011 · March 9, 2011

The clear consensus of this group is, of course, that you really need to make

sure you are dealing with an experienced surgeon who does a lot of myotomies.

Less of a consensus is baloon dilation vs. Myotomy. Dr. Richter, my doc

now, who is very good, wrote a couple of papers you could find on this groups

page. He cites studes showing that the older dilations were not effective as the

new ones which are giving good results.

Dan

suekw71 <suekw71@...> wrote:

>Good morning everyone,

>

>I started having difficulty swallowing a few years ago. I've had the

tightness/pain in chest for a long time. The cardiologist did all sorts of

tests, could find nothing. They put me on prilosec which did nothing. Finally

that chest pain went away and then the swallowing problems began. It wasn't

often (and at the time I ate a LOT) so I did nothing. Then the choking began.

It seems about a year ago the choking got bad enough that I've stopped eating

dinner, eat mostly soup for lunch and have dropped quite a bit of weight.

>

>I did a Barium swallow and have the classic Bird's beak. The doctor sent me to

a GI specialist who immediately said surgery. He didn't say what kind, I just

assumed the HM because that's what I had been reading about.

>

>I'm not sure if I should just take him at his word, research more ... and I'm

not sure where to go for information. My insurance also wont cover the hospital

I've been to for all my other things, so I'm not sure what doctor or hospital to

go to.

>

>I've lurked on these forums for quite some time now as I was trying to pay off

medical bills last year so I didn't pursue a doctor visit until this year, but

now that i have a diagnosis of Achalasia, I thought I " d post...

>

>Any help/ideas/advice are most welcome.

>

Posted March 9, 2011 · March 9, 2011

--what kind of treatment did you receive--and where-- from Boston

________________________________

From: Hoffman <rp518dan@...>

achalasia

Sent: Wed, March 9, 2011 10:23:20 AM

Subject: Re: Not so new member; but finally have diagnosis

Â

The clear consensus of this group is, of course, that you really need to make

sure you are dealing with an experienced surgeon who does a lot of myotomies.

Less of a consensus is baloon dilation vs. Myotomy. Dr. Richter, my doc

now, who is very good, wrote a couple of papers you could find on this groups

page. He cites studes showing that the older dilations were not effective as the

new ones which are giving good results.

Dan

suekw71 <suekw71@...> wrote:

>Good morning everyone,

>

>I started having difficulty swallowing a few years ago. I've had the

>tightness/pain in chest for a long time. The cardiologist did all sorts of

>tests, could find nothing. They put me on prilosec which did nothing. Finally

>that chest pain went away and then the swallowing problems began. It wasn't

>often (and at the time I ate a LOT) so I did nothing. Then the choking began.

It

>seems about a year ago the choking got bad enough that I've stopped eating

>dinner, eat mostly soup for lunch and have dropped quite a bit of weight.

>

>I did a Barium swallow and have the classic Bird's beak. The doctor sent me to

a

>GI specialist who immediately said surgery. He didn't say what kind, I just

>assumed the HM because that's what I had been reading about.

>

>I'm not sure if I should just take him at his word, research more ... and I'm

>not sure where to go for information. My insurance also wont cover the hospital

>I've been to for all my other things, so I'm not sure what doctor or hospital

to

>go to.

>

>I've lurked on these forums for quite some time now as I was trying to pay off

>medical bills last year so I didn't pursue a doctor visit until this year, but

>now that i have a diagnosis of Achalasia, I thought I " d post...

>

>Any help/ideas/advice are most welcome.

>

Posted March 9, 2011 · March 9, 2011

Sent from my Samsung Epicâ„¢ 4G

Capone <rebeccacapone@...> wrote:

>--what kind of treatment did you receive--and where-- from Boston

>

>________________________________

>From: Hoffman <rp518dan@...>

>achalasia

>Sent: Wed, March 9, 2011 10:23:20 AM

>Subject: Re: Not so new member; but finally have diagnosis

>

>Â

>The clear consensus of this group is, of course, that you really need to make

>sure you are dealing with an experienced surgeon who does a lot of myotomies.

>

>Less of a consensus is baloon dilation vs. Myotomy. Dr. Richter, my doc

>now, who is very good, wrote a couple of papers you could find on this groups

>page. He cites studes showing that the older dilations were not effective as

the

>new ones which are giving good results.

>

>Dan

>

>suekw71 <suekw71@...> wrote:

>

>>Good morning everyone,

>>

>>I started having difficulty swallowing a few years ago. I've had the

>>tightness/pain in chest for a long time. The cardiologist did all sorts of

>>tests, could find nothing. They put me on prilosec which did nothing. Finally

>>that chest pain went away and then the swallowing problems began. It wasn't

>>often (and at the time I ate a LOT) so I did nothing. Then the choking began.

It

>>seems about a year ago the choking got bad enough that I've stopped eating

>>dinner, eat mostly soup for lunch and have dropped quite a bit of weight.

>>

>>I did a Barium swallow and have the classic Bird's beak. The doctor sent me to

a

>>GI specialist who immediately said surgery. He didn't say what kind, I just

>>assumed the HM because that's what I had been reading about.

>>

>>I'm not sure if I should just take him at his word, research more ... and I'm

>>not sure where to go for information. My insurance also wont cover the

hospital

>>I've been to for all my other things, so I'm not sure what doctor or hospital

to

>>go to.

>>

>>I've lurked on these forums for quite some time now as I was trying to pay off

>>medical bills last year so I didn't pursue a doctor visit until this year, but

>>now that i have a diagnosis of Achalasia, I thought I " d post...

>>

>>Any help/ideas/advice are most welcome.

>>

>

Posted March 9, 2011 · March 9, 2011

That is exactly the same symptoms my daughter had and her PCP said it is a

charlie horse that can happen. They did the chest xray and it all came normal

but she keeps on having the same issues after 2 yrs, I found out from her that

she is getting worst (bcoz she thought it was normal). I changed primary care

doc and they did endoscope in 3 days.

Where are you and what kind of insurance you have. Do you know what hosp you are

in-Network with or your primary care doc can write you a referral. Make sure to

ask some hospitals if they take your insurance. If you go out of network, ask

what your deductible, co-pay and out of pocket. It is really important to find a

good GI who knows a lot about ACHALASIA.... Good luck!

Â

________________________________

From: suekw71 <suekw71@...>

achalasia

Sent: Wed, March 9, 2011 9:53:03 AM

Subject: Not so new member; but finally have diagnosis

Â

Good morning everyone,

I started having difficulty swallowing a few years ago. I've had the

tightness/pain in chest for a long time. The cardiologist did all sorts of

tests, could find nothing. They put me on prilosec which did nothing. Finally

that chest pain went away and then the swallowing problems began. It wasn't

often (and at the time I ate a LOT) so I did nothing. Then the choking began. It

seems about a year ago the choking got bad enough that I've stopped eating

dinner, eat mostly soup for lunch and have dropped quite a bit of weight.

I did a Barium swallow and have the classic Bird's beak. The doctor sent me to a

GI specialist who immediately said surgery. He didn't say what kind, I just

assumed the HM because that's what I had been reading about.

I'm not sure if I should just take him at his word, research more ... and I'm

not sure where to go for information. My insurance also wont cover the hospital

I've been to for all my other things, so I'm not sure what doctor or hospital to

go to.

I've lurked on these forums for quite some time now as I was trying to pay off

medical bills last year so I didn't pursue a doctor visit until this year, but

now that i have a diagnosis of Achalasia, I thought I " d post...

Any help/ideas/advice are most welcome.

Posted March 9, 2011 · March 9, 2011

suekw71 wrote:

> ... I'm not sure if I should just take him at his word, research more ...

The only test result you reported was the bird's beak. There is more to

achalasia than that, which you may want to consider. There are also

other problems, some of them referred to as, pseudo or secondary

achalasia. These are not the same as the primary/idiopathic achalasia

most of us have. Then, even in primary achalasia there are variations

that can suggest that a myotomy may be likely to work or less likely to

be completely successful. The pain you used to have could have been

spasms. If you are still having them, even if you don't feel them, they

may make a myotomy not as effective. One way to tell is to have a high

resolution manometry. There are older manometry devices around that are

not high resolution. Then you need someone that is up to date on what it

all means. Also, how much peristalsis do you still have and how high is

your LES pressure. Again, a high resolution manometry can help. If you

have some flags that indicate that a myotomy may not be as successful as

one would otherwise expect you may want to consider another treatment,

or not. You may want to consider another treatment anyways depending on

your financial, insurance, and work situations. If you think you are

interested in surgery pick a surgeon and see what he thinks. If you

think a non-surgical method may be better talk to a GI that does

dilatation and even Botox. It can't hurt to have both opinions.

notan

Posted March 10, 2011 · March 10, 2011

Hi Sue,

Have you had a manometry test yet?Â This would be the most valuable test to

consider, this test would help a prospective surgeon also to determine if you

are a good candidate for the Heller Myotomy.Â My advise would be to have this

test since your barium already shows the signs of achalasia.Â This is what I

did

and then had a successful surgery at UCLA in Calif.Â Finding the best surgeon

is

MOST important, one that has done several of these and has extensive knowledge

of achalasia.Â

Julee So Calif.

________________________________

From: suekw71 <suekw71@...>

achalasia

Sent: Wed, March 9, 2011 6:53:03 AM