Re: A pneumatic dilation long-term results

[Guest guest]

>

> A pneumatic dilation strategy in achalasia:

I have had 2 pneumatic dilations each 1 year apart. I seem to be great for 6

months after it is done and then symptoms start to slowly come back. I was told

from my doctor that each one should be good for 5 to 10 years but I guess I am

the minority, not the norm. Has anyone else had good luck with this or should

my next step be surgery?

[Guest guest]

I've been symptomatic since the early 1990s, officially diagnosed in 1996.

I've had two pneumatic dilations and no surgery. The second dilation was done

" bigger/longer " (which I assume to mean that they held the inflation for a

longer period of time to get a better stretch, instead of a fast up/down

sequence).

My last dilation was in 1998. I can eat anything I want as long as I have

liquid to wash it down. If I do experience a " stuckage " I can almost always

drink more water and " hold it down " until it finally goes through -- I'd

estimate that I only *have* to regurgitate a stuckage maybe once per year, if

that often.

Debbi in Michigan

[Guest guest]

>

Has anyone else had good luck with this or should my next step be surgery?

>

I had a pneumatic dilatation performed by Dr. Kline at USC in Los

Angeles in February 2008. I'm continuing to eat well two years later.

I was 65 years old at the time of the dilatation. People who are older seem to

do somewhat better with a pneumatic dilatation than younger folks might.

Warm regards,

Love in San Diego

[Guest guest]

--- notan ostrich wrote:

The newcomers in the group may be interested in knowing that your

esophagus has not dilated and that you have it checked. (That's how I

remember it anyway.)

==============================================

notan is correct -- thanks for the reminder, I meant to mention that I

had no ill effects from this treatment, but then I forgot to add it in!

Since my last dilation in May 1998, I have had a barium swallow

(esophagram) performed every 12-24 months. My family doctor lets me run

the show on that, because he knows I'm more educated about achalasia

than he is. ;o) I just remind him when I'm due again, and he pulls out

the radiology order and asks me what I want him to write. (it is SO NICE

to have finally found a doctor without that enormous God Complex thing

going on!)

I direct the radiologist performing the esophagram as well. They have a

special ruler that they can insert into the picture with me so that they

have a scale to use in measuring the width and depth of my esophagus.

The ruler has little dots on it for every centimeter, so that no matter

how enlarged or reduced my x-ray is, they can use the ruler's scale to

get an accurate measurement of my esophagus. I have him take pictures

of my esophagus at its largest during a swallow, from the front and from

the side, so we get a picture of how wide it is front-to-back and

left-to-right.

I have my esophagram performed at the same hospital each time, and they

have digital x-rays, so the radiologist can easily pull up my old films

and compare my progress from one year to the next as well as over time.

The radiologist checks my old films prior to doing my new pictures, too,

so he can make sure he's getting similar shots so he can compare apples

to apples -- there's no benefit to comparing the bottom of my esophagus

one year with the middle of my esophagus the next year!

Debbi in Michigan

[Guest guest]

Debbie, how bad was your achalasia before the dialations? Were you able to eat

w/out taking muscle relaxers? I have to take them now or I will most likely

regurgitate since the food won't go down to my stomach. I need the relaxer to

get my LES to open enough to get food down. I saw one specialist who advised me

to get a botox injection and then surgery. He said he doesn't do dialations

anymore due to the risk of tearing the esophagus which would require emergency

open surgery. I've had an endoscopy and manometry done so far. I'm going to see

another specialist who does dialations. He's having me do a barium swallow as

well since I haven't done one yet. I wonder how difficult that will be though

with the swallowing issues I have.

Vicky in Cape May, NJ

>

> I've been symptomatic since the early 1990s, officially diagnosed in 1996.

>

> I've had two pneumatic dilations and no surgery. The second dilation was done

" bigger/longer " (which I assume to mean that they held the inflation for a

longer period of time to get a better stretch, instead of a fast up/down

sequence).

>

> My last dilation was in 1998. I can eat anything I want as long as I have

liquid to wash it down. If I do experience a " stuckage " I can almost always

drink more water and " hold it down " until it finally goes through -- I'd

estimate that I only *have* to regurgitate a stuckage maybe once per year, if

that often.

>

> Debbi in Michigan

>

[Guest guest]

Vicky --

I was so bad off that I ate nothing but Ensure/Slim-Fast/Boost, oatmeal, and

cream of wheat for TWO YEARS and lost over 100 pounds (yes, I was obese to start

with, but I was stick-thin, to the point that I had to buy my underwear in the

little girl department because they don't make non-thong underwear small enough

for the size I was then!).

I used to keep ziplock baggies in my desk drawer at work and in my car, for when

my saliva (and/or leftover food) just wouldn't go down. I would also wake in

the middle of the night with that searing lung pain from aspirating my own

saliva.

Since my second dilation, I can eat pretty much anything, as long as I have

liquid. Sometimes I feel it backing up and I just stop and wait for it to go

through. If I'm stressed, trying to eat too quickly, or overly fatigued the

" stuckages " are more likely to happen.

Debbi

>

> Debbie, how bad was your achalasia before the dialations? Were you able to eat

w/out taking muscle relaxers? I have to take them now or I will most likely

regurgitate since the food won't go down to my stomach. I need the relaxer to

get my LES to open enough to get food down. I saw one specialist who advised me

to get a botox injection and then surgery. He said he doesn't do dialations

anymore due to the risk of tearing the esophagus which would require emergency

open surgery. I've had an endoscopy and manometry done so far. I'm going to see

another specialist who does dialations. He's having me do a barium swallow as

well since I haven't done one yet. I wonder how difficult that will be though

with the swallowing issues I have.

>

> Vicky in Cape May, NJ

[Guest guest]

Debbi,

Wow, you were really bad back then. I lost 25 lbs in the last 6 months prior to

starting the medicine. Since I've been taking it my weight has been easier to

maintain. I don't miss those 25 lbs at all cause I needed to lose them as well.

I keep a plastic shopping bag in my car just incase. Before I started taking

the relaxer I had one instance where I had to regurgitate twice while I was

driving to work (it was the coffee I'd had before I left the house). Do you mind

if I ask how old you were when you had the dialations? I've heard that they are

more successful on older people verses younger people but also that women make

out better than men. I haven't had any treatment done yet besides taking the

medicine so I'm trying to figure out what the best thing to do is.

Vicky in Cape May, NJ

> >

> > Debbie, how bad was your achalasia before the dialations? Were you able to

eat w/out taking muscle relaxers? I have to take them now or I will most likely

regurgitate since the food won't go down to my stomach. I need the relaxer to

get my LES to open enough to get food down. I saw one specialist who advised me

to get a botox injection and then surgery. He said he doesn't do dialations

anymore due to the risk of tearing the esophagus which would require emergency

open surgery. I've had an endoscopy and manometry done so far. I'm going to see

another specialist who does dialations. He's having me do a barium swallow as

well since I haven't done one yet. I wonder how difficult that will be though

with the swallowing issues I have.

> >

> > Vicky in Cape May, NJ

>

[Guest guest]

I had the second dilation in May 1998, a month after my 29th birthday. I'll be

41yo in April.

I had a tonsillectomy a week after my dilation.

I got married in November 1998.

I got pregnant in April 1999.

I had my perfectly healthy son on 1/17/2000.

One thing I've learned over the past decade is that I'm much more able to

control my stuckage/regurgitation response. I don't think it's necessarily that

my dilations have changed that so much as I've learned how to control it through

other means.

For example, I notice now when a stuckage is building up, and I stop eating

until I feel it WHOOOOSH through.

I've also learned better Upper Esophagus/Throat control.... when I have a

stuckage that thinks it wants to go up instead of down, I'm able to close my

throat hard so that it may come " up " but it will not come " out " . Part of

achieving this ability is no doubt due to the fact that the food WILL eventually

go down (due to the dilation), but I'm sure a large part of it is due to the

fact that I've simply become so accustomed to the sensations of achalasia that

I'm able to deal with it better.

For example, in the early months of achalasia, that sensation of " food stuck in

my throat = CHOKING = PANIC!!! " is one of the things that made me WANT to

regurgitate as soon as possible whenever that happened. Now that I'm used to

the feeling and I realize that I can still breath perfectly fine even with a

stuckage, I'm much calmer and more willing/able to wait until the LES opens up

for my WHOOOOSH effect.

This same Upper Control also allows me to actively PUSH the stuckage, by taking

extra drinks of water. When I feel a stuckage starting, I drink some water to

add weight and lubrication to the stuckage, then I squeeze my Upper hard and

" push " the stuckage through.

The only time I ever *need* to regurgitate is if I have a Totally Insurmountable

Stuckage. This will start as a normal stuckage, and I'll add my water and try

to push and it won't go through, so I'll add some more water and try to push

again. If I get to the point that my eyes are watering from the pressure, I'll

leave the table and empty my esophagus into the toilet (comes up nice and easy

with all that water in there too!).

Another thing that's changed over time is my belief that " what comes up must

come out " . Not everything that comes back up needs to be spit out... just try,

try again! The only times I spit stuff out is when I've had an Insurmountable

Stuckage, and that's because the regurge on that one is likely to be large and

powerful because of how much water I've packed in there while trying to get it

to push through. Anything else, and I just rechew, reswallow, and hope for a

better result the next time.

Keep in mind that I only do this because I know that it WILL go through

eventually -- it's never a good idea to go long periods of time with a bunch of

stuff just sitting in your esophagus -- that's what stretches out the body of

the esophagus and leads to future esophagectomy.

Debbi in Michigan

>

> Debbi,

>

> Wow, you were really bad back then. I lost 25 lbs in the last 6 months prior

to starting the medicine. Since I've been taking it my weight has been easier

to maintain. I don't miss those 25 lbs at all cause I needed to lose them as

well. I keep a plastic shopping bag in my car just incase. Before I started

taking the relaxer I had one instance where I had to regurgitate twice while I

was driving to work (it was the coffee I'd had before I left the house). Do you

mind if I ask how old you were when you had the dialations? I've heard that they

are more successful on older people verses younger people but also that women

make out better than men. I haven't had any treatment done yet besides taking

the medicine so I'm trying to figure out what the best thing to do is.

>

> Vicky in Cape May, NJ

[Guest guest]

I know this is from a couple years ago but I wish I had found it before the 2nd

upper GI... I've been scouring my Sara's reports, making my surgeon appts... her

endoscopy showed food in the middle 1/3 and also showed upper 1/3 was dilated...

she had manometry that showed low LES but with anesthesia: I think they gave her

too much meds, even thought they are short acting and they waited 20minutes for

her to wake up and start the test with fluoroscopy... the anesthesiologist

commented that the guidewire seemed to go around the liver? I'm trying to be

optimistic... I know we can get through this, I've told her about Debbi and few

other's journeys.

I was wondering if they can see the E with MRI or CT scan or even 4D sonogram

like they do for babies. I'll do more searches on this site... thanks for

listening, Sue

> The newcomers in the group may be interested in knowing that your

> esophagus has not dilated and that you have it checked. (That's how I

> remember it anyway.)

> ==============================================

> notan is correct -- thanks for the reminder, I meant to mention that I

> had no ill effects from this treatment, but then I forgot to add it in!

> Since my last dilation in May 1998, I have had a barium swallow

> (esophagram) performed every 12-24 months. My family doctor lets me run

> the show on that, because he knows I'm more educated about achalasia

> than he is. ;o) I just remind him when I'm due again, and he pulls out

> the radiology order and asks me what I want him to write. (it is SO NICE

> to have finally found a doctor without that enormous God Complex thing

> going on!)

> I direct the radiologist performing the esophagram as well. They have a

> special ruler that they can insert into the picture with me so that they

> have a scale to use in measuring the width and depth of my esophagus.

> The ruler has little dots on it for every centimeter, so that no matter

> how enlarged or reduced my x-ray is, they can use the ruler's scale to

> get an accurate measurement of my esophagus. I have him take pictures

> of my esophagus at its largest during a swallow, from the front and from

> the side, so we get a picture of how wide it is front-to-back and

> left-to-right.

> I have my esophagram performed at the same hospital each time, and they

> have digital x-rays, so the radiologist can easily pull up my old films

> and compare my progress from one year to the next as well as over time.

> The radiologist checks my old films prior to doing my new pictures, too,

> so he can make sure he's getting similar shots so he can compare apples

> to apples -- there's no benefit to comparing the bottom of my esophagus

> one year with the middle of my esophagus the next year!

> Debbi in Michigan

>

>

>

[Guest guest]

Debbi,

You're lucky doctors don't claim you're 'dictating' your regimen.

Sue,

Yeah, CT scans can provide an accurate modeling of the structure of the

esophagus, and its contents; but the CT Scan won't provide much information on

your symptoms.

Steve

> > The newcomers in the group may be interested in knowing that your

> > esophagus has not dilated and that you have it checked. (That's how I

> > remember it anyway.)

> > ==============================================

> > notan is correct -- thanks for the reminder, I meant to mention that I

> > had no ill effects from this treatment, but then I forgot to add it in!

> > Since my last dilation in May 1998, I have had a barium swallow

> > (esophagram) performed every 12-24 months. My family doctor lets me run

> > the show on that, because he knows I'm more educated about achalasia

> > than he is. ;o) I just remind him when I'm due again, and he pulls out

> > the radiology order and asks me what I want him to write. (it is SO NICE

> > to have finally found a doctor without that enormous God Complex thing

> > going on!)

> > I direct the radiologist performing the esophagram as well. They have a

> > special ruler that they can insert into the picture with me so that they

> > have a scale to use in measuring the width and depth of my esophagus.

> > The ruler has little dots on it for every centimeter, so that no matter

> > how enlarged or reduced my x-ray is, they can use the ruler's scale to

> > get an accurate measurement of my esophagus. I have him take pictures

> > of my esophagus at its largest during a swallow, from the front and from

> > the side, so we get a picture of how wide it is front-to-back and

> > left-to-right.

> > I have my esophagram performed at the same hospital each time, and they

> > have digital x-rays, so the radiologist can easily pull up my old films

> > and compare my progress from one year to the next as well as over time.

> > The radiologist checks my old films prior to doing my new pictures, too,

> > so he can make sure he's getting similar shots so he can compare apples

> > to apples -- there's no benefit to comparing the bottom of my esophagus

> > one year with the middle of my esophagus the next year!

> > Debbi in Michigan

> >

> >

> >

[Guest guest]

>

> Debbi,

>

> You're lucky doctors don't claim you're 'dictating' your regimen.

It's my body and I have the right to say what happens to it. I refuse to

subject myself to doctors who don't allow me to have input into my own

treatment.

My general practitioner knows that I know more about achalasia than he does, and

he has no problem letting me run the show.

Debbi in Michigan