Re: Coughing and throwing up at night

[Guest guest]

Hi Corri,

Sorry to read that you needed to return here for support. The good news is, as you know, there is plenty of support here to help you through this difficult time. , from Ohio, just gave you an excellent answer. My answer, though slanted, tries to be more analytical.

Among the things you wrote that jump out at me is

"I have chosen not to have the myotomy due to the side effects of the surgery,"

Corri, you are now sitting at the "crossroads" where you need to make a decision that may affect your well being for the rest of your life. Its a matter of considering all of your alternatives, writing down all of the positives and negatives of each one, and then making an informed decision. Let's see what the alternatives are.

1) Do nothing at all;

2) Have another dilatation;

3) See what happens with a botox injection.

4) Have the Heller Myotomy.

5) And not to insult the homeopathic achalasians out there, acupuncture, chiropractic, herbs, meditation, and whatever else.

Advantages of each of the above.

1) Doing nothing - probably no advantages, but you won't be concerning yourself with the side effects of botox, or surgery,or another dilatation that does little to help, etc.

2) Another dilatation - Maybe the next dilatation will work and you won't have to put yourself thru a surgery, or botox.

3) Botox injections are relatively simple to do and usually have good results.

4) HM - when done by the best surgeons returns you to as close as you are going to get to eating normally again.

5) "Natural Cure" - if you can find it, nothing might be better.

Disadvantages of each of the above.

1) Doing nothing - you have obviously reached the point where you are really suffering and its going to get worse. Your esophagus might get so bad that nothing short of its removal might help. A Heller Myotomy is a piece of cake compared to an esophagectomy. The longer you wait the more your esophagus will become mega and the more problems you will have. I would forget about choice #1.

2) Another dilatation. You have said that your results have not been good. Chances are another one won't be any better. You risk a perforation, needlessly, and you might develop scar tissue that could make an operation more complex. You might be buying time for no reason while your esophagus worsens.

3) Botox - proven to be a very temporary fix. Probably best to be used in older individuals who cannot tolerate the surgery, or less likely that the LES will heal and give problems. You don't want to go every 6 months. It might complicate future surgeries.

4) Heller Myotomy - Its major surgery with all the risks inherent with an operation. You can get out in one day, or one week, plus there is recovery time and the risk of perforation. There is also the risk of increased acid reflux, which you would take medication for. Are the results worth the risks? and many others would answer would an enthusiastic "YES." Can the risks be reduced by going to a surgeon who has performed this many times? Yes. You must decide, based on how you feel now, how much more suffering you are going to endure before acting upon it. You are at the point now where you must be "pro-active." You can't hide from yourself.

5) Natural cures - wonderful if it works. If you can't find it, and there are many out there trying, you risk further damage that might lead to an esophagectomy. Its one thing if you were at an early stage. You are not.

Corri, what I wrote above is far from complete. I think you just need a bit of a push in the right direction at this moment. I hope this helped.

In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time, corriellyn@... writes:

Hi All, It has been 2 years since I have posted antyhing on this message board. I was diagnosed 2.5 years ago and have had 2 dilatations, with poor results. Lately I have been waking up 3-4 times a night coughing horribly, and throwing up. I try not to eat anything at least 3 hours before I lay down but nothing seems to help. I sleep atop 5 pillows, and it still doesn't help. I have chosen not to have the myotomy due to the side effects of the surgery, but everyday that passes I am rethinking my decision.Can anyone give me some advice on my nighttime attacks?Thanks All,Corri in MI

See what's free at AOL.com.

[Guest guest]

Not to disagree with what Debbi wrote (as she knows I have the utmost respect for her), I just want to elaborate on what she said.

I had mentioned earlier that after having a couple of bad results with a dilatation that it was unlikely that she was going to get a better result. In Debbi's case a subsequent dilatation helped her more.

In my own case, my first dilatation was a failure. My next three helped, and the last one did nothing. In focusing in on the first one, its important to be aware that a dilatation is more that just sticking an uninflated balloon down our throat and then pumping some air into it. There are a number of factors involved.

The doctor (usually the gastroenterologist) who performs it must be very familiar not only with the disease, but with the patient. For the optimum results, the balloon must be positioned precisely in the right place. It should be inflated to the right amount, enough to rupture the muscle sufficiently, but not too much to cause too much damage or a perforation, and the length of time it is inflated is also a factor. Too little time and nothing gets accomplished; too long a time and the damage might be too great. If you're off on any of these three things (position, amount inflated, and time inflated), the results may not be as good.

In my later "dilatation years," it had nothing to do with the "quality" of the dilatation, but the elasticity of my LES. Nothing further could be done. I had to opt for the surgery when the time came.

Lately I have been getting into "quotations" on this Board, sometimes used as a rallying cry. Debbi's last statement belongs right up there, assuming you can make it thru the "onslaught" of the single and double negatives.

I know it doesn't work for everybody, but that doesn't mean it doesn't work for ANYbody, either.

In a message dated 4/5/2007 4:33:37 P.M. Eastern Daylight Time, imahockeymom@... writes:

wrote:

2) Another dilatation. You have said that your results have not been good. Chances are another one won't be any better.

For what it's worth, my first dilation did little for me. The second one a couple years later gave me results that are probably as good as any Heller Myotomy.

I don't know what the difference was, but it's been 9 years since my last dilation. My main problem now is simply the "bad" peristalsis (I either get no wave function, or else it misfires in a funky order so that food doesn't go down), and I'm able to manage that as long as I remain aware of it.

I know it doesn't work for everybody, but that doesn't mean it doesn't work for ANYbody, either.

Debbi in SW Michigan

See what's free at AOL.com.

[Guest guest]

What "side effects" are you referencing? For me at least, I had the surgery last June and have been pretty close to my pre-Achalasia days ever since. No more nighttime coughing/choking, no more regurgitating, no more having to stop eating because I've run out of room in my esophagus. I had a 24 hour pH test 2 months after the surgery (which I had with a wrap) and it showed no reflux. I am on no medication at this time. I have an occasional spasm and still drink with all of my meals, but otherwise, things are good! If you can't tell yet (lol), my vote is strongly in favor of surgery. It was the best possible decision.

(in Ohio - where it is snowing like crazy this April day - yuck)

From: achalasia [mailto:achalasia ] On Behalf Of CorriSent: Thursday, April 05, 2007 2:58 PMachalasia Subject: Coughing and throwing up at night

Hi All, It has been 2 years since I have posted antyhing on this message board. I was diagnosed 2.5 years ago and have had 2 dilatations, with poor results. Lately I have been waking up 3-4 times a night coughing horribly, and throwing up. I try not to eat anything at least 3 hours before I lay down but nothing seems to help. I sleep atop 5 pillows, and it still doesn't help. I have chosen not to have the myotomy due to the side effects of the surgery, but everyday that passes I am rethinking my decision.Can anyone give me some advice on my nighttime attacks?Thanks All,Corri in MI

[Guest guest]

Corri

It sucks I know I did that for months before my surgery! My only

suggestion if you aren’t gonna have the surgery is to empty your E before

you go to sleep. Kind of a tricky thing to learn to do though.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of Corri

Sent: Thursday, April 05, 2007 2:58 PM

achalasia

Subject: Coughing and throwing up at night

Hi All,

It has been 2 years since I have posted antyhing on this message

board. I was diagnosed 2.5 years ago and have had 2 dilatations, with

poor results. Lately I have been waking up 3-4 times a night coughing

horribly, and throwing up. I try not to eat anything at least 3 hours

before I lay down but nothing seems to help. I sleep atop 5 pillows,

and it still doesn't help. I have chosen not to have the myotomy due

to the side effects of the surgery, but everyday that passes I am

rethinking my decision.

Can anyone give me some advice on my nighttime attacks?

Thanks All,

Corri in MI

[Guest guest]

Thank you ,

I guess I am talking about the problems recurring, and I guess I am

just plain old scared!

Did you have it done at the Cleveland clinic?

Thanks,

Corri in MI ( It is nowing here as well!)

>

> What " side effects " are you referencing? For me at least, I had

the

> surgery last June and have been pretty close to my pre-Achalasia

days

> ever since. No more nighttime coughing/choking, no more

regurgitating,

> no more having to stop eating because I've run out of room in my

> esophagus. I had a 24 hour pH test 2 months after the surgery

(which I

> had with a wrap) and it showed no reflux. I am on no medication

at this

> time. I have an occasional spasm and still drink with all of my

meals,

> but otherwise, things are good! If you can't tell yet (lol), my

vote is

> strongly in favor of surgery. It was the best possible decision.

>

> (in Ohio - where it is snowing like crazy this April day -

yuck)

>

> ________________________________

>

> From: achalasia [mailto:achalasia ]

On

> Behalf Of Corri

> Sent: Thursday, April 05, 2007 2:58 PM

> achalasia

> Subject: Coughing and throwing up at night

>

>

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations,

with

> poor results. Lately I have been waking up 3-4 times a night

coughing

> horribly, and throwing up. I try not to eat anything at least 3

hours

> before I lay down but nothing seems to help. I sleep atop 5

pillows,

> and it still doesn't help. I have chosen not to have the myotomy

due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

[Guest guest]

,

Thanks so much for the detailed email.

The support here is unreal, and the wealth of knowledge floors me.

You are right, I am at a crossroads. My Docor will not perform

another dilatation,or botox, so it is surgery or let things get

progressively worse. The strange thing is the minute I think I

can't take anymore, I will go without an attack for a few weeks. I

did meet with the Head of Thoracic Surgery at the University of

Michigan hospital about a year ago. But since I am so close to

Cleveland I think I would feel more comfortable going to the

Cleveland Clinic.

Do you happen to know what can happen if you do not get the

surgery? Eventually will your E erode? Am I doing more harm than I

realize? I have not been to my doctor in over a year, since he

wasn't willing to do anything more for me.

Thanks again for your words of wisdom.

Corri in MI

>

>

> Hi Corri,

>

> Sorry to read that you needed to return here for support.

The good news

> is, as you know, there is plenty of support here to help you

through this

> difficult time. , from Ohio, just gave you an excellent

answer. My

> answer, though slanted, tries to be more analytical.

>

> Among the things you wrote that jump out at me is

>

> " I have chosen not to have the myotomy due to the side effects of

the

> surgery, "

>

> Corri, you are now sitting at the " crossroads " where you need to

make a

> decision that may affect your well being for the rest of your

life. Its a matter

> of considering all of your alternatives, writing down all of the

positives

> and negatives of each one, and then making an informed decision.

Let's see

> what the alternatives are.

>

> 1) Do nothing at all;

> 2) Have another dilatation;

> 3) See what happens with a botox injection.

> 4) Have the Heller Myotomy.

> 5) And not to insult the homeopathic achalasians out there,

acupuncture,

> chiropractic, herbs, meditation, and whatever else.

>

> Advantages of each of the above.

>

> 1) Doing nothing - probably no advantages, but you won't be

concerning

> yourself with the side effects of botox, or surgery,or another

dilatation that

> does little to help, etc.

>

> 2) Another dilatation - Maybe the next dilatation will work

and you won't

> have to put yourself thru a surgery, or botox.

>

> 3) Botox injections are relatively simple to do and usually

have good

> results.

>

> 4) HM - when done by the best surgeons returns you to as close

as you are

> going to get to eating normally again.

>

> 5) " Natural Cure " - if you can find it, nothing might be

better.

>

> Disadvantages of each of the above.

>

> 1) Doing nothing - you have obviously reached the point where

you are

> really suffering and its going to get worse. Your esophagus

might get so bad

> that nothing short of its removal might help. A Heller Myotomy

is a piece of

> cake compared to an esophagectomy. The longer you wait the more

your

> esophagus will become mega and the more problems you will have.

I would forget about

> choice #1.

>

> 2) Another dilatation. You have said that your results have

not been

> good. Chances are another one won't be any better. You risk a

perforation,

> needlessly, and you might develop scar tissue that could make an

operation more

> complex. You might be buying time for no reason while your

esophagus worsens.

>

> 3) Botox - proven to be a very temporary fix. Probably best

to be used

> in older individuals who cannot tolerate the surgery, or less

likely that the

> LES will heal and give problems. You don't want to go every 6

months. It

> might complicate future surgeries.

>

> 4) Heller Myotomy - Its major surgery with all the risks

inherent with an

> operation. You can get out in one day, or one week, plus there

is recovery

> time and the risk of perforation. There is also the risk of

increased acid

> reflux, which you would take medication for. Are the results

worth the risks?

> and many others would answer would an enthusiastic " YES. "

Can the

> risks be reduced by going to a surgeon who has performed this

many times? Yes.

> You must decide, based on how you feel now, how much more

suffering you are

> going to endure before acting upon it. You are at the point now

where you

> must be " pro-active. " You can't hide from yourself.

>

> 5) Natural cures - wonderful if it works. If you can't find

it, and

> there are many out there trying, you risk further damage that

might lead to an

> esophagectomy. Its one thing if you were at an early stage. You

are not.

>

> Corri, what I wrote above is far from complete. I think you just

need a bit

> of a push in the right direction at this moment. I hope this

helped.

>

>

>

>

>

>

>

> In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time,

> corriellyn@... writes:

>

>

>

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations,

with

> poor results. Lately I have been waking up 3-4 times a night

coughing

> horribly, and throwing up. I try not to eat anything at least 3

hours

> before I lay down but nothing seems to help. I sleep atop 5

pillows,

> and it still doesn't help. I have chosen not to have the myotomy

due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

>

>

>

>

>

>

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Hello-

I am sorry to hear you are having troubles like this.I guess you

dont need anyone to tell you that this is not going to get better!!

But.....This is not going to get better.I wish I could say it will

but I cant.

You mentioned side effects from surgery-?My son has NONE!Only the

scar on his belly.

You also have to Look at the side effects that doing all this

choking and vomiting is doing to your esophagus over time.

I know you mentioned the fact that you are rethinking the myotomy.I

think just checking into it more will ease your mind and you will

see its not that bad.My son is 13 now and has had the open version

of the myotomy and is doing awesome now! He went form 86 pounds to

121 since his surgery in Oct.There is nothing he cant eat.If its

eatible then hes eating it.He sleeps only with the pillow he lays

on.You deserve to be able to do this as well,not to mention how

much you deserve to lay comfortable in you bed without all those

pillows and not wake up couging and vomiting.That must be horrible

for you to go through.

I cant tell you any thing that would help you other than the fact of

surgery.That is good though your not eating close to bedtime- I have

heard peple say thats a good thing.This could be getting into your

lungs and make things even worse.I am alwyas willing to help answer

any questions about the surgery if you would like to know more to

ask away.

I do wish that you were not having to go through this but I would do

just as you said.rethink the myotomy.You deserve to have a good

night sleep and be able to eat normal.How is your eating ? Any other

problems?

Tonia

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations,

with

> poor results. Lately I have been waking up 3-4 times a night

coughing

> horribly, and throwing up. I try not to eat anything at least 3

hours

> before I lay down but nothing seems to help. I sleep atop 5

pillows,

> and it still doesn't help. I have chosen not to have the myotomy

due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

[Guest guest]

Hey I just read you are close to the Cleveland Clinic-Thats where

has his surgery done.DR Rice done it .He is one of the

top for this surgery.One of our other members from here from Ohio

()is there now having a operation done from him and a few

others here have used him as well.We drive over 8 hours to go to him

cause he is highly known and reccomended for this.Something to think

about..Come on give them a call.

Tonia

> >

> > Hi All,

> >

> > It has been 2 years since I have posted antyhing on this

message

> > board. I was diagnosed 2.5 years ago and have had 2

dilatations,

> with

> > poor results. Lately I have been waking up 3-4 times a night

> coughing

> > horribly, and throwing up. I try not to eat anything at least 3

> hours

> > before I lay down but nothing seems to help. I sleep atop 5

> pillows,

> > and it still doesn't help. I have chosen not to have the

myotomy

> due

> > to the side effects of the surgery, but everyday that passes I

am

> > rethinking my decision.

> >

> > Can anyone give me some advice on my nighttime attacks?

> >

> > Thanks All,

> >

> > Corri in MI

> >

>

[Guest guest]

Hi Tonia,

Thanks for the great response.

I am glad to hear your son is doing well!

Can I ask you you why you chose the open myotomy?

I know this will sound weird, but I can sometimes will the food to

go down if I really concentrate. Other times I have terrible pain

if I take too big of a bite, and sometimes liquid is harder to get

down than solids. I haven't had anything carbonated for over a

year, and I really haven;t lost any weight. Veggies are really hard

to get down and stay there. Heavier foods are easier to eat, such

as stuffing, mashed potatoes, hummous,etc....... The spasms are

terrible, and scary, but I can usual control them by gulping ice

cold water. I ALWAYS have a water bottle with me.

I am definitely going to make an appointment with a surgeon, I

really think it is time. I also think I needed a push.

Thank you for the great email!

Corri in MI

> >

> > Hi All,

> >

> > It has been 2 years since I have posted antyhing on this

message

> > board. I was diagnosed 2.5 years ago and have had 2

dilatations,

> with

> > poor results. Lately I have been waking up 3-4 times a night

> coughing

> > horribly, and throwing up. I try not to eat anything at least 3

> hours

> > before I lay down but nothing seems to help. I sleep atop 5

> pillows,

> > and it still doesn't help. I have chosen not to have the

myotomy

> due

> > to the side effects of the surgery, but everyday that passes I

am

> > rethinking my decision.

> >

> > Can anyone give me some advice on my nighttime attacks?

> >

> > Thanks All,

> >

> > Corri in MI

> >

>

[Guest guest]

Hi ,

Thank you for the response!

I think I know what you mean. Are you referring to regurgitating

befor you go to bed? I have no problem doing that at all, it is

like some weird circus act!

Sometimes I take a sleeping pill, just to get through the night!

Thanks

Corri in MI

>

> Corri

>

> It sucks I know I did that for months before my surgery! My only

suggestion

> if you aren't gonna have the surgery is to empty your E before you

go to

> sleep. Kind of a tricky thing to learn to do though.

>

>

>

> C Warren

>

> Co-Founder

>

> www.achalasia.us

>

> From: achalasia [mailto:achalasia ]

On Behalf

> Of Corri

> Sent: Thursday, April 05, 2007 2:58 PM

> achalasia

> Subject: Coughing and throwing up at night

>

>

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations,

with

> poor results. Lately I have been waking up 3-4 times a night

coughing

> horribly, and throwing up. I try not to eat anything at least 3

hours

> before I lay down but nothing seems to help. I sleep atop 5

pillows,

> and it still doesn't help. I have chosen not to have the myotomy

due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

[Guest guest]

I did. Dr. Rice did a great job. I trust him completely. Would you be able to go to him?

From: achalasia [mailto:achalasia ] On Behalf Of CorriSent: Thursday, April 05, 2007 3:39 PMachalasia Subject: Re: Coughing and throwing up at night

Thank you ,I guess I am talking about the problems recurring, and I guess I am just plain old scared! Did you have it done at the Cleveland clinic?Thanks,Corri in MI ( It is nowing here as well!)>> What "side effects" are you referencing? For me at least, I had the> surgery last June and have been pretty close to my pre-Achalasia days> ever since. No more nighttime coughing/choking, no more regurgitating,> no more having to stop eating because I've run out of room in my> esophagus. I had a 24 hour pH test 2 months after the surgery (which I> had with a wrap) and it showed no reflux. I am on no medication at this> time. I have an occasional spasm and still drink with all of my meals,> but otherwise, things are good! If you can't tell yet (lol), my vote is> strongly in favor of surgery. It was the best possible decision.> > (in Ohio - where it is snowing like crazy this April day - yuck)> > ________________________________> > From: achalasia [mailto:achalasia ] On> Behalf Of Corri> Sent: Thursday, April 05, 2007 2:58 PM> achalasia > Subject: Coughing and throwing up at night> > > > Hi All, > > It has been 2 years since I have posted antyhing on this message > board. I was diagnosed 2.5 years ago and have had 2 dilatations, with > poor results. Lately I have been waking up 3-4 times a night coughing > horribly, and throwing up. I try not to eat anything at least 3 hours > before I lay down but nothing seems to help. I sleep atop 5 pillows, > and it still doesn't help. I have chosen not to have the myotomy due > to the side effects of the surgery, but everyday that passes I am > rethinking my decision.> > Can anyone give me some advice on my nighttime attacks?> > Thanks All,> > Corri in MI>

[Guest guest]

Yes.

I only live a 3 hour drive away from Cleveland.

How long was your recovery period?

Thank you!

> >

> > What " side effects " are you referencing? For me at least, I had

> the

> > surgery last June and have been pretty close to my pre-Achalasia

> days

> > ever since. No more nighttime coughing/choking, no more

> regurgitating,

> > no more having to stop eating because I've run out of room in my

> > esophagus. I had a 24 hour pH test 2 months after the surgery

> (which I

> > had with a wrap) and it showed no reflux. I am on no medication

> at this

> > time. I have an occasional spasm and still drink with all of my

> meals,

> > but otherwise, things are good! If you can't tell yet (lol), my

> vote is

> > strongly in favor of surgery. It was the best possible decision.

> >

> > (in Ohio - where it is snowing like crazy this April day -

> yuck)

> >

> > ________________________________

> >

> > From: achalasia <mailto:achalasia%

40>

> [mailto:achalasia <mailto:achalasia%

40> ]

>

> On

> > Behalf Of Corri

> > Sent: Thursday, April 05, 2007 2:58 PM

> > achalasia <mailto:achalasia%

40>

> > Subject: Coughing and throwing up at night

> >

> >

> >

> > Hi All,

> >

> > It has been 2 years since I have posted antyhing on this message

> > board. I was diagnosed 2.5 years ago and have had 2 dilatations,

> with

> > poor results. Lately I have been waking up 3-4 times a night

> coughing

> > horribly, and throwing up. I try not to eat anything at least 3

> hours

> > before I lay down but nothing seems to help. I sleep atop 5

> pillows,

> > and it still doesn't help. I have chosen not to have the myotomy

> due

> > to the side effects of the surgery, but everyday that passes I

am

> > rethinking my decision.

> >

> > Can anyone give me some advice on my nighttime attacks?

> >

> > Thanks All,

> >

> > Corri in MI

> >

>

[Guest guest]

wrote:

2) Another dilatation. You have said that your results have not been good. Chances are another one won't be any better.

For what it's worth, my first dilation did little for me. The second one a couple years later gave me results that are probably as good as any Heller Myotomy.

I don't know what the difference was, but it's been 9 years since my last dilation. My main problem now is simply the "bad" peristalsis (I either get no wave function, or else it misfires in a funky order so that food doesn't go down), and I'm able to manage that as long as I remain aware of it.

I know it doesn't work for everybody, but that doesn't mean it doesn't work for ANYbody, either.

Debbi in SW Michigan

[Guest guest]

I was where you were - I waited 6 years before i agreed to the surgery. I messed up my gallbladder, and had to have it removed, i had to go off work for a year, i destroyed my metabolism, and when the surgery came due i was weak, dehydrated and a mess. Make the decision soon, and if you proceed your recovery will be faster because you were healthier to begin with.

Re: Coughing and throwing up at night

,Thanks so much for the detailed email.The support here is unreal, and the wealth of knowledge floors me.You are right, I am at a crossroads. My Docor will not perform another dilatation,or botox, so it is surgery or let things get progressively worse. The strange thing is the minute I think I can't take anymore, I will go without an attack for a few weeks. I did meet with the Head of Thoracic Surgery at the University of Michigan hospital about a year ago. But since I am so close to Cleveland I think I would feel more comfortable going to the Cleveland Clinic. Do you happen to know what can happen if you do not get the surgery? Eventually will your E erode? Am I doing more harm than I realize? I have not been to my doctor in over a year, since he wasn't willing to do anything more for me.Thanks again for your words of wisdom.Corri in MI>> > Hi Corri,> > Sorry to read that you needed to return here for support. The good news > is, as you know, there is plenty of support here to help you through this > difficult time. , from Ohio, just gave you an excellent answer. My > answer, though slanted, tries to be more analytical. > > Among the things you wrote that jump out at me is> > "I have chosen not to have the myotomy due to the side effects of the > surgery,"> > Corri, you are now sitting at the "crossroads" where you need to make a > decision that may affect your well being for the rest of your life. Its a matter > of considering all of your alternatives, writing down all of the positives > and negatives of each one, and then

making an informed decision. Let's see > what the alternatives are.> > 1) Do nothing at all;> 2) Have another dilatation;> 3) See what happens with a botox injection.> 4) Have the Heller Myotomy.> 5) And not to insult the homeopathic achalasians out there, acupuncture, > chiropractic, herbs, meditation, and whatever else.> > Advantages of each of the above.> > 1) Doing nothing - probably no advantages, but you won't be concerning > yourself with the side effects of botox, or surgery,or another dilatation that > does little to help, etc.> > 2) Another dilatation - Maybe the next dilatation will work and you won't > have to put yourself thru a surgery, or botox.> > 3) Botox injections are relatively simple to do and usually have good > results.> > 4) HM - when done by the best surgeons returns you to

as close as you are > going to get to eating normally again.> > 5) "Natural Cure" - if you can find it, nothing might be better.> > Disadvantages of each of the above.> > 1) Doing nothing - you have obviously reached the point where you are > really suffering and its going to get worse. Your esophagus might get so bad > that nothing short of its removal might help. A Heller Myotomy is a piece of > cake compared to an esophagectomy. The longer you wait the more your > esophagus will become mega and the more problems you will have. I would forget about > choice #1.> > 2) Another dilatation. You have said that your results have not been > good. Chances are another one won't be any better. You risk a perforation, > needlessly, and you might develop scar tissue that could make an operation more > complex. You might be

buying time for no reason while your esophagus worsens.> > 3) Botox - proven to be a very temporary fix. Probably best to be used > in older individuals who cannot tolerate the surgery, or less likely that the > LES will heal and give problems. You don't want to go every 6 months. It > might complicate future surgeries.> > 4) Heller Myotomy - Its major surgery with all the risks inherent with an > operation. You can get out in one day, or one week, plus there is recovery > time and the risk of perforation. There is also the risk of increased acid > reflux, which you would take medication for. Are the results worth the risks? > and many others would answer would an enthusiastic "YES." Can the > risks be reduced by going to a surgeon who has performed this many times? Yes. > You must decide, based on how you feel now, how much more

suffering you are > going to endure before acting upon it. You are at the point now where you > must be "pro-active. " You can't hide from yourself.> > 5) Natural cures - wonderful if it works. If you can't find it, and > there are many out there trying, you risk further damage that might lead to an > esophagectomy. Its one thing if you were at an early stage. You are not.> > Corri, what I wrote above is far from complete. I think you just need a bit > of a push in the right direction at this moment. I hope this helped.> > > > > > > > In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time, > corriellyn@. .. writes:> > > > > Hi All, > > It has been 2 years since I have posted antyhing on this message > board. I was diagnosed 2.5 years ago and have had 2

dilatations, with > poor results. Lately I have been waking up 3-4 times a night coughing > horribly, and throwing up. I try not to eat anything at least 3 hours > before I lay down but nothing seems to help. I sleep atop 5 pillows, > and it still doesn't help. I have chosen not to have the myotomy due > to the side effects of the surgery, but everyday that passes I am > rethinking my decision.> > Can anyone give me some advice on my nighttime attacks?> > Thanks All,> > Corri in MI> > > > > > > > > > > ************ ********* ********* ******** See what's free at http://www.aol. com.>

Inbox full of unwanted email? Get leading protection and 1GB storage with All New .

[Guest guest]

Hi Debbi,

Wow, that is great news for you. If my doctor would perform another

one I would be all for it. I had 2 done within 9 months of each

other. At first the results were amazing. Then, 3 weeks down the

road, I was back to the symptoms.

Maybe I need a second opinion?

> 2) Another dilatation. You have said that your results have not

been good. Chances are another one won't be any better.

>

> For what it's worth, my first dilation did little for me. The

second one a couple years later gave me results that are probably as

good as any Heller Myotomy.

>

> I don't know what the difference was, but it's been 9 years since

my last dilation. My main problem now is simply the " bad "

peristalsis (I either get no wave function, or else it misfires in a

funky order so that food doesn't go down), and I'm able to manage

that as long as I remain aware of it.

>

> I know it doesn't work for everybody, but that doesn't mean it

doesn't work for ANYbody, either.

>

> Debbi in SW Michigan

>

[Guest guest]

Corri- I did not choose for to have the open myotomy.We took

to a DR who was not qualified as a Achalasia Specialist and he

screwed up his operation.Dr Rice had to go in open to repair and fix

everything that was done wrong.That was the only way to fix it.

His down time was 8 1/2 days in hospital(normal myotomy is only 2-3

max).He was out of school 6-8 weeks and no sports and such.After a

few days at home he was up and at it.He did so well!

Your operation(if you decided) more than likely be done

laproscopicaly.Most are done that way.Only in certain cases goes as

far as open.Dont even worry about that.

If you call Dr Rice he will set up a time to do his own test and

then take it from there.

Tonia

> > >

> > > Hi All,

> > >

> > > It has been 2 years since I have posted antyhing on this

> message

> > > board. I was diagnosed 2.5 years ago and have had 2

> dilatations,

> > with

> > > poor results. Lately I have been waking up 3-4 times a night

> > coughing

> > > horribly, and throwing up. I try not to eat anything at least

3

> > hours

> > > before I lay down but nothing seems to help. I sleep atop 5

> > pillows,

> > > and it still doesn't help. I have chosen not to have the

> myotomy

> > due

> > > to the side effects of the surgery, but everyday that passes I

> am

> > > rethinking my decision.

> > >

> > > Can anyone give me some advice on my nighttime attacks?

> > >

> > > Thanks All,

> > >

> > > Corri in MI

> > >

> >

>

[Guest guest]

---Dr. Rice also did my myotomy two weeks ago. I was in the hospital

over night. Had some pain but not terrible. I got out of the hospital

on Thursday and on Sunday I went to the art museum. Got tired but

really enjoyed it. They had a special exhibit of Monet paintings.

I'm feeling very good now and am planning on going back to work on

Monday. Am starting back on normal foods and everything is going

down and staying down. I am having some spasms. I feel very

confident in Dr. Rice.

JoAnn in New Mexico

In achalasia , " Lay, A. " <lalay@...> wrote:

>

> What " side effects " are you referencing? For me at least, I had the

> surgery last June and have been pretty close to my pre-Achalasia

days

> ever since. No more nighttime coughing/choking, no more

regurgitating,

> no more having to stop eating because I've run out of room in my

> esophagus. I had a 24 hour pH test 2 months after the surgery

(which I

> had with a wrap) and it showed no reflux. I am on no medication at

this

> time. I have an occasional spasm and still drink with all of my

meals,

> but otherwise, things are good! If you can't tell yet (lol), my

vote is

> strongly in favor of surgery. It was the best possible decision.

>

> (in Ohio - where it is snowing like crazy this April day -

yuck)

>

> ________________________________

>

> From: achalasia [mailto:achalasia ]

On

> Behalf Of Corri

> Sent: Thursday, April 05, 2007 2:58 PM

> achalasia

> Subject: Coughing and throwing up at night

>

>

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations,

with

> poor results. Lately I have been waking up 3-4 times a night

coughing

> horribly, and throwing up. I try not to eat anything at least 3

hours

> before I lay down but nothing seems to help. I sleep atop 5

pillows,

> and it still doesn't help. I have chosen not to have the myotomy

due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

[Guest guest]

Corri,

So sorry to hear about your night time episodes! Are you in the

Detroit area? I am. I think that's great advice that you've gotten,

to see Dr. Rice for a consult. If you want another opinion on

dilation, you could also consult with a gastro. doc at Cleveland

Clinic (CCF). Dr. Edgar Achkar is the head of the Swallowing

Disorders Department at CCF, but there are others in that department.

My husband saw Dr. Achkar and later consulted with Dr. Rice. It does

sound like you should do something, rather than risk aspiration

pneumonia and be miserable. CCF is the place to go, too. Good luck!

in cold, snowy SE Michigan

>

> Hi All,

>

> It has been 2 years since I have posted antyhing on this message

> board. I was diagnosed 2.5 years ago and have had 2 dilatations, with

> poor results. Lately I have been waking up 3-4 times a night coughing

> horribly, and throwing up. I try not to eat anything at least 3 hours

> before I lay down but nothing seems to help. I sleep atop 5 pillows,

> and it still doesn't help. I have chosen not to have the myotomy due

> to the side effects of the surgery, but everyday that passes I am

> rethinking my decision.

>

> Can anyone give me some advice on my nighttime attacks?

>

> Thanks All,

>

> Corri in MI

>

[Guest guest]

I wrote this post yesterday around 5PM, thought I clicked on "Send Now" but apparently did not, just discovering that it was not sent. I hope that it does not appear too much out of context considering posts that followed. I was responding to Corri's questions directed to me. Debbi has since made comments, all of which I agree with.

Hi Corri,

In response to your questions to me, as you know most of the people in this group, including myself, have been where you are now. There were many times that symptoms would lessen, we would feel pretty good, then it would come back with a vengeance. Those momentary breaks are only a "tease." Often the stretching esophagus will "accommodate" the food going thru by enlarging even more and we will mistakenly think we are better. Your X-rays will dispute how you think you feel, as will your doctors.

You ask what might happen if you don't have the surgery. 10 years ago I would not have a clue since Achalasians rarely, if ever, met another person with this disease. From this group I have learned that some people can go many years and do alright, while others suffer more and sooner. There is no way of telling except to see over time how it all plays out. In some cases the problem can be "passive," other times more "aggressive." In thinking about your night time "adventures," your situation appears more serious. Worse case scenario would be our beloved , who was a teenager living with her parents when she had her dilatation and nothing more. Now, 17 years later she's recovering from an esophagectomy done by Dr. Rice. You DON'T want that to happen to you. BTW, Dr. Rice is the "goto" surgeon, as you have probably been reading, at TCC.

Getting back to your questions (copied below), yes you could be doing more harm to your esophagus by doing nothing. A barium swallow and endoscopy might get you some answers, especially if it can be compared against earlier tests.

This is one disease where it is in your best interests to get yourself evaluated by more than one doctor. Don't hesitate to go out there and get second opinions. Sometimes a doctor might sound really knowledgeable about this disease, until you speak to someone who really knows achalasia and you get a wakeup call.

Debbi gave you some good advice. I would be very curious to try to find out precisely why your dilatations failed before having another one. Maybe you need a more skilled doctor to perform it should there be a next time. Some have as many as half a dozen before it either helps or surgery must be done. Seek out more opinions.

In a message dated 4/5/2007 3:55:34 P.M. Eastern Daylight Time, corriellyn@... writes:

,Thanks so much for the detailed email.The support here is unreal, and the wealth of knowledge floors me.You are right, I am at a crossroads. My Doctor will not perform another dilatation,or botox, so it is surgery or let things get progressively worse. The strange thing is the minute I think I can't take anymore, I will go without an attack for a few weeks. I did meet with the Head of Thoracic Surgery at the University of Michigan hospital about a year ago. But since I am so close to Cleveland I think I would feel more comfortable going to the Cleveland Clinic. Do you happen to know what can happen if you do not get the surgery? Eventually will your E erode? Am I doing more harm than I realize? I have not been to my doctor in over a year, since he wasn't willing to do anything more for me.Thanks again for your words of wisdom.Corri in MI>> > Hi Corri,> > Sorry to read that you needed to return here for support. The good news > is, as you know, there is plenty of support here to help you through this > difficult time. , from Ohio, just gave you an excellent answer. My > answer, though slanted, tries to be more analytical. > > Among the things you wrote that jump out at me is> > "I have chosen not to have the myotomy due to the side effects of the > surgery,"> > Corri, you are now sitting at the "crossroads" where you need to make a > decision that may affect your well being for the rest of your life. Its a matter > of considering all of your alternatives, writing down all of the positives > and negatives of each one, and then making an informed decision. Let's see > what the alternatives are.> > 1) Do nothing at all;> 2) Have another dilatation;> 3) See what happens with a botox injection.> 4) Have the Heller Myotomy.> 5) And not to insult the homeopathic achalasians out there, acupuncture, > chiropractic, herbs, meditation, and whatever else.> > Advantages of each of the above.> > 1) Doing nothing - probably no advantages, but you won't be concerning > yourself with the side effects of botox, or surgery,or another dilatation that > does little to help, etc.> > 2) Another dilatation - Maybe the next dilatation will work and you won't > have to put yourself thru a surgery, or botox.> > 3) Botox injections are relatively simple to do and usually have good > results.> > 4) HM - when done by the best surgeons returns you to as close as you are > going to get to eating normally again.> > 5) "Natural Cure" - if you can find it, nothing might be better.> > Disadvantages of each of the above.> > 1) Doing nothing - you have obviously reached the point where you are > really suffering and its going to get worse. Your esophagus might get so bad > that nothing short of its removal might help. A Heller Myotomy is a piece of > cake compared to an esophagectomy. The longer you wait the more your > esophagus will become mega and the more problems you will have. I would forget about > choice #1.> > 2) Another dilatation. You have said that your results have not been > good. Chances are another one won't be any better. You risk a perforation, > needlessly, and you might develop scar tissue that could make an operation more > complex. You might be buying time for no reason while your esophagus worsens.> > 3) Botox - proven to be a very temporary fix. Probably best to be used > in older individuals who cannot tolerate the surgery, or less likely that the > LES will heal and give problems. You don't want to go every 6 months. It > might complicate future surgeries.> > 4) Heller Myotomy - Its major surgery with all the risks inherent with an > operation. You can get out in one day, or one week, plus there is recovery > time and the risk of perforation. There is also the risk of increased acid > reflux, which you would take medication for. Are the results worth the risks? > and many others would answer would an enthusiastic "YES." Can the > risks be reduced by going to a surgeon who has performed this many times? Yes. > You must decide, based on how you feel now, how much more suffering you are > going to endure before acting upon it. You are at the point now where you > must be "pro-active." You can't hide from yourself.> > 5) Natural cures - wonderful if it works. If you can't find it, and > there are many out there trying, you risk further damage that might lead to an > esophagectomy. Its one thing if you were at an early stage. You are not.> > Corri, what I wrote above is far from complete. I think you just need a bit > of a push in the right direction at this moment. I hope this helped.> > > > > > > > In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time, > corriellyn@... writes:> > > > > Hi All, > > It has been 2 years since I have posted antyhing on this message > board. I was diagnosed 2.5 years ago and have had 2 dilatations, with > poor results. Lately I have been waking up 3-4 times a night coughing > horribly, and throwing up. I try not to eat anything at least 3 hours > before I lay down but nothing seems to help. I sleep atop 5 pillows, > and it still doesn't help. I have chosen not to have the myotomy due > to the side effects of the surgery, but everyday that passes I am > rethinking my decision.> > Can anyone give me some advice on my nighttime attacks?> > Thanks All,> > Corri in MI> > > > > > > > > > > ************************************** See what's free at http://www.aol.com.>

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See what's free at AOL.com.

[Guest guest]

Corri -- as said, the experience level of the doctor is CRUCIAL.

In my opinion, it is DEFINITELY worth a second opinion, and many on this board know that, living in Michigan, I wouldn't go ANYWHERE but The Cleveland Clinic from this point forward.

The staff at TCC knows what they're doing. They can do the appropriate testing (manometry, endoscopy, timed barium swallow) to get an accurate picture of what exactly your problem entails at this point in time.

It's possible that your esophagus is so stretched out and twisty that another dilation wouldn't help at this point, because the problem isn't your LES but rather the " bucket of retained contents " that your esophagus has become. Or, as in my case, the peristaltic function (or lack thereof) might be the problem. In those situations, neither a dilation nor a myotomy is really going to help.

But if your LES *is* tightened up again and if a dilation or myotomy *is* the appropriate solution for you, the staff at TCC is the place to go.

As another of our " rallying cries " around here goes: Doing nothing is not an option! You have to be proactive and seek out the best possible care for your very unique situation. This is NOT something that the typical doctor --even a specialist-- sees much of.

I think if you polled the group members who are within a day's drive of TCC, you'd be amazed at the percentage of people who would say " I won't go anywhere but TCC " . There are no guarantees, of course, but your odds are going to be better there than anywhere else in our region!

Debbi in SW Michigan

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

Hi Debbi,Wow, that is great news for you. If my doctor would perform another one I would be all for it. I had 2 done within 9 months of each other. At first the results were amazing. Then, 3 weeks down the road, I was back to the symptoms.

Maybe I need a second opinion?

[Guest guest]

Thank you to everyone for all the emails, and wealth of knowledge.

I do have an appointment with Dr. rice scheduled in May. I do

realize that for my health I should not put it off any longer.

The thing that boggles my mind is that I am overweight, but

continually throw-up my food. It must be the heavy foods I eat.

Thanks again,

Corri in MI

>

>

> I wrote this post yesterday around 5PM, thought I clicked

on " Send Now " but

> apparently did not, just discovering that it was not sent. I

hope that it

> does not appear too much out of context considering posts that

followed. I was

> responding to Corri's questions directed to me. Debbi has since

made

> comments, all of which I agree with.

>

>

> Hi Corri,

>

> In response to your questions to me, as you know most of the

people in

> this group, including myself, have been where you are now. There

were many

> times that symptoms would lessen, we would feel pretty good, then

it would come

> back with a vengeance. Those momentary breaks are only

a " tease. " Often

> the stretching esophagus will " accommodate " the food going thru

by enlarging

> even more and we will mistakenly think we are better. Your X-

rays will dispute

> how you think you feel, as will your doctors.

>

> You ask what might happen if you don't have the surgery. 10

years ago I

> would not have a clue since Achalasians rarely, if ever, met

another person

> with this disease. From this group I have learned that some

people can go

> many years and do alright, while others suffer more and sooner.

There is no

> way of telling except to see over time how it all plays out. In

some cases the

> problem can be " passive, " other times more " aggressive. " In

thinking about

> your night time " adventures, " your situation appears more

serious. Worse

> case scenario would be our beloved , who was a teenager

living with her

> parents when she had her dilatation and nothing more. Now, 17

years later she's

> recovering from an esophagectomy done by Dr. Rice. You DON'T

want that to

> happen to you. BTW, Dr. Rice is the " goto " surgeon, as you have

probably been

> reading, at TCC.

>

> Getting back to your questions (copied below), yes you could

be doing

> more harm to your esophagus by doing nothing. A barium swallow

and endoscopy

> might get you some answers, especially if it can be compared

against earlier

> tests.

>

> This is one disease where it is in your best interests to get

yourself

> evaluated by more than one doctor. Don't hesitate to go out

there and get

> second opinions. Sometimes a doctor might sound really

knowledgeable about

> this disease, until you speak to someone who really knows

achalasia and you get

> a wakeup call.

>

> Debbi gave you some good advice. I would be very curious to

try to find

> out precisely why your dilatations failed before having another

one. Maybe

> you need a more skilled doctor to perform it should there be a

next time.

> Some have as many as half a dozen before it either helps or

surgery must be

> done. Seek out more opinions.

>

> In a message dated 4/5/2007 3:55:34 P.M. Eastern Daylight Time,

> corriellyn@... writes:

>

>

> ,

>

> Thanks so much for the detailed email.

>

> The support here is unreal, and the wealth of knowledge floors me.

>

> You are right, I am at a crossroads. My Doctor will not perform

> another dilatation,or botox, so it is surgery or let things get

> progressively worse. The strange thing is the minute I think I

> can't take anymore, I will go without an attack for a few weeks.

I

> did meet with the Head of Thoracic Surgery at the University of

> Michigan hospital about a year ago. But since I am so close to

> Cleveland I think I would feel more comfortable going to the

> Cleveland Clinic.

>

> Do you happen to know what can happen if you do not get the

> surgery? Eventually will your E erode? Am I doing more harm than

I

> realize? I have not been to my doctor in over a year, since he

> wasn't willing to do anything more for me.

>

> Thanks again for your words of wisdom.

>

> Corri in MI

>

> --- In _achalasia@grouachala_

(mailto:achalasia ) ,

> cynmark24@, cy

> >

> >

> > Hi Corri,

> >

> > Sorry to read that you needed to return here for support.

> The good news

> > is, as you know, there is plenty of support here to help you

> through this

> > difficult time. , from Ohio, just gave you an excellent

> answer. My

> > answer, though slanted, tries to be more analytical.

> >

> > Among the things you wrote that jump out at me is

> >

> > " I have chosen not to have the myotomy due to the side effects

of

> the

> > surgery, "

> >

> > Corri, you are now sitting at the " crossroads " where you need

to

> make a

> > decision that may affect your well being for the rest of your

> life. Its a matter

> > of considering all of your alternatives, writing down all of

the

> positives

> > and negatives of each one, and then making an informed

decision.

> Let's see

> > what the alternatives are.

> >

> > 1) Do nothing at all;

> > 2) Have another dilatation;

> > 3) See what happens with a botox injection.

> > 4) Have the Heller Myotomy.

> > 5) And not to insult the homeopathic achalasians out there,

> acupuncture,

> > chiropractic, herbs, meditation, and whatever else.

> >

> > Advantages of each of the above.

> >

> > 1) Doing nothing - probably no advantages, but you won't be

> concerning

> > yourself with the side effects of botox, or surgery,or another

> dilatation that

> > does little to help, etc.

> >

> > 2) Another dilatation - Maybe the next dilatation will work

> and you won't

> > have to put yourself thru a surgery, or botox.

> >

> > 3) Botox injections are relatively simple to do and usually

> have good

> > results.

> >

> > 4) HM - when done by the best surgeons returns you to as close

> as you are

> > going to get to eating normally again.

> >

> > 5) " Natural Cure " - if you can find it, nothing might be

> better.

> >

> > Disadvantages of each of the above.

> >

> > 1) Doing nothing - you have obviously reached the point where

> you are

> > really suffering and its going to get worse. Your esophagus

> might get so bad

> > that nothing short of its removal might help. A Heller Myotomy

> is a piece of

> > cake compared to an esophagectomy. The longer you wait the more

> your

> > esophagus will become mega and the more problems you will have.

> I would forget about

> > choice #1.

> >

> > 2) Another dilatation. You have said that your results have

> not been

> > good. Chances are another one won't be any better. You risk a

> perforation,

> > needlessly, and you might develop scar tissue that could make

an

> operation more

> > complex. You might be buying time for no reason while your

> esophagus worsens.

> >

> > 3) Botox - proven to be a very temporary fix. Probably best

> to be used

> > in older individuals who cannot tolerate the surgery, or less

> likely that the

> > LES will heal and give problems. You don't want to go every 6

> months. It

> > might complicate future surgeries.

> >

> > 4) Heller Myotomy - Its major surgery with all the risks

> inherent with an

> > operation. You can get out in one day, or one week, plus there

> is recovery

> > time and the risk of perforation. There is also the risk of

> increased acid

> > reflux, which you would take medication for. Are the results

> worth the risks?

> > and many others would answer would an enthusiastic " YES. "

> Can the

> > risks be reduced by going to a surgeon who has performed this

> many times? Yes.

> > You must decide, based on how you feel now, how much more

> suffering you are

> > going to endure before acting upon it. You are at the point now

> where you

> > must be " pro-active. must be " pro-active.<WBR> " You

> >

> > 5) Natural cures - wonderful if it works. If you can't find

> it, and

> > there are many out there trying, you risk further damage that

> might lead to an

> > esophagectomy. Its one thing if you were at an early stage. You

> are not.

> >

> > Corri, what I wrote above is far from complete. I think you

just

> need a bit

> > of a push in the right direction at this moment. I hope this

> helped.

> >

> >

> >

> >

> >

> >

> >

> > In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time,

> > corriellyn@ corri

> >

> >

> >

> >

> > Hi All,

> >

> > It has been 2 years since I have posted antyhing on this

message

> > board. I was diagnosed 2.5 years ago and have had 2

dilatations,

> with

> > poor results. Lately I have been waking up 3-4 times a night

> coughing

> > horribly, and throwing up. I try not to eat anything at least 3

> hours

> > before I lay down but nothing seems to help. I sleep atop 5

> pillows,

> > and it still doesn't help. I have chosen not to have the

myotomy

> due

> > to the side effects of the surgery, but everyday that passes I

am

> > rethinking my decision.

> >

> > Can anyone give me some advice on my nighttime attacks?

> >

> > Thanks All,

> >

> > Corri in MI

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ************ ******** ******** ************<WBR>*********<WBR>

> _http://www.aol.http_ (http://www.aol.com./)

> >

>

>

>

> _Messages in this topic _

>

(achalasia/message/41616;_ylc=X3oDMTM2Z

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>

DYxNTg5BG1zZ0lkAzQxNjIzBHNlYwNmdHIEc2xrA3Z0cGMEc3RpbWUDMTE3NTgwMjg2OA

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> c1ODAyODY4)

>

>

>

>

>

>

>

> ************************************** See what's free at

http://www.aol.com.

>

[Guest guest]

Corri,

I'm so glad to hear that you'll be seeing Dr. Rice next month!

You'll be in very qualified hands at Cleveland. Please keep us posted

on how things go for you there and any questions you have. Also,

there is a list (I believe it's under Files) of questions for the

surgeon on this website. We printed that out when my husband saw Dr.

Rice. It helps to give you ideas on what to ask. Good luck and have

a Happy Holiday!

in St. Clair Shores

>

> Thank you to everyone for all the emails, and wealth of knowledge.

> I do have an appointment with Dr. rice scheduled in May. I do

> realize that for my health I should not put it off any longer.

>

> The thing that boggles my mind is that I am overweight, but

> continually throw-up my food. It must be the heavy foods I eat.

>

> Thanks again,

>

> Corri in MI

>

>

[Guest guest]

Thanks so much .

you have a nice Holiday as well!

> >

> > Thank you to everyone for all the emails, and wealth of

knowledge.

> > I do have an appointment with Dr. rice scheduled in May. I do

> > realize that for my health I should not put it off any longer.

> >

> > The thing that boggles my mind is that I am overweight, but

> > continually throw-up my food. It must be the heavy foods I eat.

> >

> > Thanks again,

> >

> > Corri in MI

> >

> >

>

[Guest guest]

Hi , What a great post of you again! It's always a pleasure to read your supportive and informative mails! Isabellacynmark24@... wrote: I wrote this post yesterday around 5PM, thought I clicked on "Send Now" but apparently did not, just discovering that it was not sent. I hope that it does not appear too much out of context considering posts that followed. I was

responding to Corri's questions directed to me. Debbi has since made comments, all of which I agree with. Hi Corri, In response to your questions to me, as you know most of the people in this group, including myself, have been where you are now. There were many times that symptoms would lessen, we would feel pretty good, then it would come back with a vengeance. Those momentary breaks are only a "tease." Often the stretching esophagus will "accommodate" the food going thru by enlarging even more and we will mistakenly think we are better. Your X-rays will dispute how you think you feel, as will your doctors. You ask what might happen if you don't have the

surgery. 10 years ago I would not have a clue since Achalasians rarely, if ever, met another person with this disease. From this group I have learned that some people can go many years and do alright, while others suffer more and sooner. There is no way of telling except to see over time how it all plays out. In some cases the problem can be "passive," other times more "aggressive." In thinking about your night time "adventures," your situation appears more serious. Worse case scenario would be our beloved , who was a teenager living with her parents when she had her dilatation and nothing more. Now, 17 years later she's recovering from an esophagectomy done by Dr. Rice. You DON'T want that to happen to you. BTW, Dr. Rice is the "goto" surgeon, as you have probably been reading, at TCC. Getting back to your

questions (copied below), yes you could be doing more harm to your esophagus by doing nothing. A barium swallow and endoscopy might get you some answers, especially if it can be compared against earlier tests. This is one disease where it is in your best interests to get yourself evaluated by more than one doctor. Don't hesitate to go out there and get second opinions. Sometimes a doctor might sound really knowledgeable about this disease, until you speak to someone who really knows achalasia and you get a wakeup call. Debbi gave you some good advice. I would be very curious to try to find out precisely why your dilatations failed before having another one. Maybe you need a more skilled doctor to perform it should there be a next time. Some have as

many as half a dozen before it either helps or surgery must be done. Seek out more opinions. In a message dated 4/5/2007 3:55:34 P.M. Eastern Daylight Time, corriellyn writes: ,Thanks so much for the detailed email.The support here is unreal, and the wealth of knowledge floors me.You are right, I am at a crossroads. My Doctor will not perform another dilatation,or botox, so it is surgery or let things get progressively worse. The strange thing is the minute I think I can't take anymore, I will go without an attack for a few weeks. I did meet with the Head of Thoracic Surgery at the University of Michigan hospital about a year ago. But since I am so close to Cleveland I think I would feel

more comfortable going to the Cleveland Clinic. Do you happen to know what can happen if you do not get the surgery? Eventually will your E erode? Am I doing more harm than I realize? I have not been to my doctor in over a year, since he wasn't willing to do anything more for me.Thanks again for your words of wisdom.Corri in MI>> > Hi Corri,> > Sorry to read that you needed to return here for support. The good news > is, as you know, there is plenty of support here to help you through this > difficult time. , from Ohio, just gave you an excellent answer. My > answer, though slanted, tries to be more analytical. > > Among the things you wrote that jump out at me is> > "I have

chosen not to have the myotomy due to the side effects of the > surgery,"> > Corri, you are now sitting at the "crossroads" where you need to make a > decision that may affect your well being for the rest of your life. Its a matter > of considering all of your alternatives, writing down all of the positives > and negatives of each one, and then making an informed decision. Let's see > what the alternatives are.> > 1) Do nothing at all;> 2) Have another dilatation;> 3) See what happens with a botox injection.> 4) Have the Heller Myotomy.> 5) And not to insult the homeopathic achalasians out there, acupuncture, > chiropractic, herbs, meditation, and whatever else.> > Advantages of each of the above.> > 1) Doing nothing - probably no advantages, but you won't be concerning > yourself with the side effects of botox, or

surgery,or another dilatation that > does little to help, etc.> > 2) Another dilatation - Maybe the next dilatation will work and you won't > have to put yourself thru a surgery, or botox.> > 3) Botox injections are relatively simple to do and usually have good > results.> > 4) HM - when done by the best surgeons returns you to as close as you are > going to get to eating normally again.> > 5) "Natural Cure" - if you can find it, nothing might be better.> > Disadvantages of each of the above.> > 1) Doing nothing - you have obviously reached the point where you are > really suffering and its going to get worse. Your esophagus might get so bad > that nothing short of its removal might help. A Heller Myotomy is a piece of > cake compared to an esophagectomy. The longer you wait the more your > esophagus

will become mega and the more problems you will have. I would forget about > choice #1.> > 2) Another dilatation. You have said that your results have not been > good. Chances are another one won't be any better. You risk a perforation, > needlessly, and you might develop scar tissue that could make an operation more > complex. You might be buying time for no reason while your esophagus worsens.> > 3) Botox - proven to be a very temporary fix. Probably best to be used > in older individuals who cannot tolerate the surgery, or less likely that the > LES will heal and give problems. You don't want to go every 6 months. It > might complicate future surgeries.> > 4) Heller Myotomy - Its major surgery with all the risks inherent with an > operation. You can get out in one day, or one week, plus there is recovery > time and the risk of

perforation. There is also the risk of increased acid > reflux, which you would take medication for. Are the results worth the risks? > and many others would answer would an enthusiastic "YES." Can the > risks be reduced by going to a surgeon who has performed this many times? Yes. > You must decide, based on how you feel now, how much more suffering you are > going to endure before acting upon it. You are at the point now where you > must be "pro-active." You can't hide from yourself.> > 5) Natural cures - wonderful if it works. If you can't find it, and > there are many out there trying, you risk further damage that might lead to an > esophagectomy. Its one thing if you were at an early stage. You are not.> > Corri, what I wrote above is far from complete. I think you just need a bit > of a push in the right direction at this

moment. I hope this helped.> > > > > > > > In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight Time, > corriellyn@... writes:> > > > > Hi All, > > It has been 2 years since I have posted antyhing on this message > board. I was diagnosed 2.5 years ago and have had 2 dilatations, with > poor results. Lately I have been waking up 3-4 times a night coughing > horribly, and throwing up. I try not to eat anything at least 3 hours > before I lay down but nothing seems to help. I sleep atop 5 pillows, > and it still doesn't help. I have chosen not to have the myotomy due > to the side effects of the surgery, but everyday that passes I am > rethinking my decision.> > Can anyone give me some advice on my nighttime attacks?> > Thanks All,> >

Corri in MI> > > > > > > > > > > ************************************** See what's free at http://www.aol.com.> Messages in this topic (0) Reply (via web post) | Start a new topic See what's free at AOL.com.

Need Mail bonding?Go to the Q&A for great tips from Answers users.

[Guest guest]

Best news I have heard all day! Glad your going to seE Dr Rice!!

Let me know if you have any questions at all,I am here for you.

Tonia

> >

> >

> > I wrote this post yesterday around 5PM, thought I clicked

> on " Send Now " but

> > apparently did not, just discovering that it was not sent. I

> hope that it

> > does not appear too much out of context considering posts that

> followed. I was

> > responding to Corri's questions directed to me. Debbi has

since

> made

> > comments, all of which I agree with.

> >

> >

> > Hi Corri,

> >

> > In response to your questions to me, as you know most of

the

> people in

> > this group, including myself, have been where you are now.

There

> were many

> > times that symptoms would lessen, we would feel pretty good,

then

> it would come

> > back with a vengeance. Those momentary breaks are only

> a " tease. " Often

> > the stretching esophagus will " accommodate " the food going thru

> by enlarging

> > even more and we will mistakenly think we are better. Your X-

> rays will dispute

> > how you think you feel, as will your doctors.

> >

> > You ask what might happen if you don't have the surgery.

10

> years ago I

> > would not have a clue since Achalasians rarely, if ever, met

> another person

> > with this disease. From this group I have learned that some

> people can go

> > many years and do alright, while others suffer more and

sooner.

> There is no

> > way of telling except to see over time how it all plays out.

In

> some cases the

> > problem can be " passive, " other times more " aggressive. " In

> thinking about

> > your night time " adventures, " your situation appears more

> serious. Worse

> > case scenario would be our beloved , who was a teenager

> living with her

> > parents when she had her dilatation and nothing more. Now, 17

> years later she's

> > recovering from an esophagectomy done by Dr. Rice. You DON'T

> want that to

> > happen to you. BTW, Dr. Rice is the " goto " surgeon, as you

have

> probably been

> > reading, at TCC.

> >

> > Getting back to your questions (copied below), yes you

could

> be doing

> > more harm to your esophagus by doing nothing. A barium swallow

> and endoscopy

> > might get you some answers, especially if it can be compared

> against earlier

> > tests.

> >

> > This is one disease where it is in your best interests to

get

> yourself

> > evaluated by more than one doctor. Don't hesitate to go out

> there and get

> > second opinions. Sometimes a doctor might sound really

> knowledgeable about

> > this disease, until you speak to someone who really knows

> achalasia and you get

> > a wakeup call.

> >

> > Debbi gave you some good advice. I would be very curious

to

> try to find

> > out precisely why your dilatations failed before having another

> one. Maybe

> > you need a more skilled doctor to perform it should there be a

> next time.

> > Some have as many as half a dozen before it either helps or

> surgery must be

> > done. Seek out more opinions.

> >

> > In a message dated 4/5/2007 3:55:34 P.M. Eastern Daylight Time,

> > corriellyn@ writes:

> >

> >

> > ,

> >

> > Thanks so much for the detailed email.

> >

> > The support here is unreal, and the wealth of knowledge floors

me.

> >

> > You are right, I am at a crossroads. My Doctor will not perform

> > another dilatation,or botox, so it is surgery or let things get

> > progressively worse. The strange thing is the minute I think I

> > can't take anymore, I will go without an attack for a few

weeks.

> I

> > did meet with the Head of Thoracic Surgery at the University of

> > Michigan hospital about a year ago. But since I am so close to

> > Cleveland I think I would feel more comfortable going to the

> > Cleveland Clinic.

> >

> > Do you happen to know what can happen if you do not get the

> > surgery? Eventually will your E erode? Am I doing more harm

than

> I

> > realize? I have not been to my doctor in over a year, since he

> > wasn't willing to do anything more for me.

> >

> > Thanks again for your words of wisdom.

> >

> > Corri in MI

> >

> > --- In _achalasia@grouachala_

> (mailto:achalasia ) ,

> > cynmark24@, cy

> > >

> > >

> > > Hi Corri,

> > >

> > > Sorry to read that you needed to return here for support.

> > The good news

> > > is, as you know, there is plenty of support here to help you

> > through this

> > > difficult time. , from Ohio, just gave you an excellent

> > answer. My

> > > answer, though slanted, tries to be more analytical.

> > >

> > > Among the things you wrote that jump out at me is

> > >

> > > " I have chosen not to have the myotomy due to the side

effects

> of

> > the

> > > surgery, "

> > >

> > > Corri, you are now sitting at the " crossroads " where you need

> to

> > make a

> > > decision that may affect your well being for the rest of your

> > life. Its a matter

> > > of considering all of your alternatives, writing down all of

> the

> > positives

> > > and negatives of each one, and then making an informed

> decision.

> > Let's see

> > > what the alternatives are.

> > >

> > > 1) Do nothing at all;

> > > 2) Have another dilatation;

> > > 3) See what happens with a botox injection.

> > > 4) Have the Heller Myotomy.

> > > 5) And not to insult the homeopathic achalasians out there,

> > acupuncture,

> > > chiropractic, herbs, meditation, and whatever else.

> > >

> > > Advantages of each of the above.

> > >

> > > 1) Doing nothing - probably no advantages, but you won't be

> > concerning

> > > yourself with the side effects of botox, or surgery,or

another

> > dilatation that

> > > does little to help, etc.

> > >

> > > 2) Another dilatation - Maybe the next dilatation will work

> > and you won't

> > > have to put yourself thru a surgery, or botox.

> > >

> > > 3) Botox injections are relatively simple to do and usually

> > have good

> > > results.

> > >

> > > 4) HM - when done by the best surgeons returns you to as

close

> > as you are

> > > going to get to eating normally again.

> > >

> > > 5) " Natural Cure " - if you can find it, nothing might be

> > better.

> > >

> > > Disadvantages of each of the above.

> > >

> > > 1) Doing nothing - you have obviously reached the point where

> > you are

> > > really suffering and its going to get worse. Your esophagus

> > might get so bad

> > > that nothing short of its removal might help. A Heller

Myotomy

> > is a piece of

> > > cake compared to an esophagectomy. The longer you wait the

more

> > your

> > > esophagus will become mega and the more problems you will

have.

> > I would forget about

> > > choice #1.

> > >

> > > 2) Another dilatation. You have said that your results have

> > not been

> > > good. Chances are another one won't be any better. You risk a

> > perforation,

> > > needlessly, and you might develop scar tissue that could make

> an

> > operation more

> > > complex. You might be buying time for no reason while your

> > esophagus worsens.

> > >

> > > 3) Botox - proven to be a very temporary fix. Probably best

> > to be used

> > > in older individuals who cannot tolerate the surgery, or less

> > likely that the

> > > LES will heal and give problems. You don't want to go every 6

> > months. It

> > > might complicate future surgeries.

> > >

> > > 4) Heller Myotomy - Its major surgery with all the risks

> > inherent with an

> > > operation. You can get out in one day, or one week, plus

there

> > is recovery

> > > time and the risk of perforation. There is also the risk of

> > increased acid

> > > reflux, which you would take medication for. Are the results

> > worth the risks?

> > > and many others would answer would an

enthusiastic " YES. "

> > Can the

> > > risks be reduced by going to a surgeon who has performed this

> > many times? Yes.

> > > You must decide, based on how you feel now, how much more

> > suffering you are

> > > going to endure before acting upon it. You are at the point

now

> > where you

> > > must be " pro-active. must be " pro-active.<WBR> " You

> > >

> > > 5) Natural cures - wonderful if it works. If you can't find

> > it, and

> > > there are many out there trying, you risk further damage that

> > might lead to an

> > > esophagectomy. Its one thing if you were at an early stage.

You

> > are not.

> > >

> > > Corri, what I wrote above is far from complete. I think you

> just

> > need a bit

> > > of a push in the right direction at this moment. I hope this

> > helped.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > In a message dated 4/5/2007 3:03:00 P.M. Eastern Daylight

Time,

> > > corriellyn@ corri

> > >

> > >

> > >

> > >

> > > Hi All,

> > >

> > > It has been 2 years since I have posted antyhing on this

> message

> > > board. I was diagnosed 2.5 years ago and have had 2

> dilatations,

> > with

> > > poor results. Lately I have been waking up 3-4 times a night

> > coughing

> > > horribly, and throwing up. I try not to eat anything at least

3

> > hours

> > > before I lay down but nothing seems to help. I sleep atop 5

> > pillows,

> > > and it still doesn't help. I have chosen not to have the

> myotomy

> > due

> > > to the side effects of the surgery, but everyday that passes

I

> am

> > > rethinking my decision.

> > >

> > > Can anyone give me some advice on my nighttime attacks?

> > >

> > > Thanks All,

> > >

> > > Corri in MI

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > ************ ******** ******** ************<WBR>*********<WBR>

> > _http://www.aol.http_ (http://www.aol.com./)

> > >

> >

> >

> >

> > _Messages in this topic _

> >

>

(achalasia/message/41616;_ylc=X3oDMTM2Z

> m9zcWNuBF9TAzk3MzU5NzE0BGdycElkAzEwNzM0NDUEZ3Jwc3BJZAMxNzA1M

> >

>

DYxNTg5BG1zZ0lkAzQxNjIzBHNlYwNmdHIEc2xrA3Z0cGMEc3RpbWUDMTE3NTgwMjg2OA

> R0cGNJZAM

> > 0MTYxNg--) (0) _Reply (via web post) _

> >

>

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> >

>

A1MDYxNTg5BG1zZ0lkAzQxNjIzBHNlYwNmdHIEc2xrA3JwbHkEc3RpbWUDMTE3NTgwMjg

> 2OA--?act

> > =reply & messageNum=41623) | _Start a new topic _

> >

>

(achalasia/post;_ylc=X3oDMTJlOWs2aWJmBF

> 9TAzk3MzU5NzE0BGdycElkAzEwNzM0NDUEZ3Jw

> >

c3BJZAMxNzA1MDYxNTg5BHNlYwNmdHIEc2xrA250cGMEc3RpbWUDMTE3NTgwMjg2OA-

> -)

> > _Messages_

> >

>

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>

lkBF9TAzk3MzU5NzE0BGdycElkAzEwNzM0NDUEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwN

> mdHIEc2

> > xrA21zZ3MEc3RpbWUDMTE3NTgwMjg2OA--) | _Files_

> >

>

(achalasia/files;_ylc=X3oDMTJmNGFrcjhlB

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> > ************************************** See what's free at

> http://www.aol.com.

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