Re: Failed Laproscopic Heler Myotomy - what next? ()

[Guest guest]

Hi ,

I read your first post and your response to Dave. Please just

fill me in on one detail. When did you have your Heller Myotomy

done? If it was done a year ago, I'd be just as pissed off as you

sound. If it was done less than two months ago, I would possibly

question whether there might still be some swelling or trauma in that

area that needs more time to recover.

Interestingly, I've talked about the " Power Swallow " in the past

without giving it such a great sounding title (mind if I adopt it?),

where we are in great distress, and sometimes gasping for air, and

its like an " all or nothing " attempt at clearing the E. I do it with

carbonation, and yes, I too understand what it means when a " Power

Swallow " fails.

Are you able to tolerate drinking carbonation, which gives

much more of an " oomph " to the food going down, than does plain

liquids? For every bite of food I take I try to take a swallow of

soda, knowing that sometimes the food can accumulate in the E without

my knowing it until its too late, and then its either Power swallow

time, or the more gentler alternatives first (sub-ligual nifedipine,

walking, stretching, jumping in place, a forceful regurtitation in

our " home away from home (bathroom), or forcing hiccups or burps, by

first swallowing air then forcing back up.

I'm sorry that it appears to be a failure, but I would love

to hear back from you.

> >

> >

> > Well, my first thought, knowing none of your facts is,

> > is it really failed?

> >

> > One thing you have to remember is that the surgery

> > will do nothing to help the swallowing part. Like my

> > doctor told me, " the muscle action in your E is gone

> > and it is not coming back " .

> >

> > What the surgery did was just give the food someplace

> > to go when it finally hits bottom. You will still

> > have to drinks lots of water, don't lay down several

> > hours after eating, etc. This board has tons of hints

> > about that.

> >

> > Some of us here (me) have to be careful of what we eat

> > and some can eat whatever they want, just pay

> > attention to what foods you tolerate and which you

> > don't.

> >

> > Hope this gives you food for thought about what is

> > really going on in your E( pun intended)

> >

> > Dave

> >

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

> > From: " johnax11 " <johnax11@>

> > Subject: Failed Laproscopic Heler Myotomy - what next?

> >

> > I underwent a lapro heler myotomy, which was

> > completely

> > unsuccessful, because there was no improvement in my

> > ability to

> > swallow after the surgery. The surgeon, who had

> > caused me to believe

> > the success rate of the lapro myotomy was very high,

> > now recommends

> > open surgery, but I am hesitant.

> >

> > __________________________________________________

> >

[Guest guest]

, I have to apologize. With all the recent posts, I missed the

one where you said that you had the surgery a year ago. I had asked

you in my last post how long you had it done.

made some excellent suggestions, and I would definitely look

into what he said. His own experience speaks volumes as to what

might go wrong and that it can be corrected.

> >

> >

> > , welcome to the group. You can have another Heller's

> surgery that is

> > not out of the question. I had an open Heller's redo. But

they

> did not make

> > a new cut but they did extend the original myotomy. Who did

your

> first

> > surgery and where was it done? I would look into a second

> opinion with a doctor

> > that has a very good understanding of this disease. Did you

have

> a wrap with

> > your Heller's? That might be the problem but without proper

> tests and

> > opening you up that would be hard to tell. I had a different

> surgeon on my second

> > surgery and he recommend that he do the surgery open just cause

> he would be

> > able to really see what has been done in the first surgery and

he

> could really

> > take a good look at what needed to be done to improve my

ability

> to eat and

> > drink.

> >

> > I hope this helps you out a little and if you have any other

> questions

> > please feel free to ask. Again welcome to the group and we are

> glad you have

> > found us.

> >

> >

> >

> > in Suffolk

> >

> >

> >

> > In a message dated 4/30/2006 3:27:28 PM GMT Standard Time,

> > johnax11@ writes:

> >

> > I am new to this group. I have had achalasia for 3 years.

About

> a

> > year ago, I underwent a lapro heler myotomy, which was

completely

> > unsuccessful, because there was no improvement in my ability to

> > swallow after the surgery. The surgeon, who had caused me to

> believe

> > the success rate of the lapro myotomy was very high, now

> recommends

> > open surgery, but I am hesitant. Any recommendations? Can

> another

> > lapro surgery be done, or do I now have to go to open surgery

> because

> > I have already had one failed lapro surgery? Should I use the

> same

> > surgeon, or get a different one?

> >

> > THanks for any thoughts.

> >

> > .

> >

> >

> >

> >

> >

> >

> >

> > Links

> >

>

>

>

>

>

>

>

> Links

>

[Guest guest]

Hi ,

Thanks for your response. If indeed I did just coin the

phrase " power swallow " , then I consider it public domain, so please

feel free to use it.

I had the myotomy in early 2005, I believe it was February, so it

has been a year and two months.

Interesting that you find it effective to drink carbonated liquids.

I myself avoid them at all cost, they cause more trouble for me. I

used to love beer, but now I completely avoid it. Fortunately, I

still like wine, but not the sparkling variety.

I do find it helps to stand up and swallow, and also I tend to stick

my chest out and arch my back a little when I do. Whatever works, I

guess.

Thanks for your thoughts and words of encouragement.

.

> > >

> > >

> > > Well, my first thought, knowing none of your facts is,

> > > is it really failed?

> > >

> > > One thing you have to remember is that the surgery

> > > will do nothing to help the swallowing part. Like my

> > > doctor told me, " the muscle action in your E is gone

> > > and it is not coming back " .

> > >

> > > What the surgery did was just give the food someplace

> > > to go when it finally hits bottom. You will still

> > > have to drinks lots of water, don't lay down several

> > > hours after eating, etc. This board has tons of hints

> > > about that.

> > >

> > > Some of us here (me) have to be careful of what we eat

> > > and some can eat whatever they want, just pay

> > > attention to what foods you tolerate and which you

> > > don't.

> > >

> > > Hope this gives you food for thought about what is

> > > really going on in your E( pun intended)

> > >

> > > Dave

> > >

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

> > > From: " johnax11 " <johnax11@>

> > > Subject: Failed Laproscopic Heler Myotomy - what next?

> > >

> > > I underwent a lapro heler myotomy, which was

> > > completely

> > > unsuccessful, because there was no improvement in my

> > > ability to

> > > swallow after the surgery. The surgeon, who had

> > > caused me to believe

> > > the success rate of the lapro myotomy was very high,

> > > now recommends

> > > open surgery, but I am hesitant.

> > >

> > > __________________________________________________

> > >

[Guest guest]

,

I can relate to the " power swallow "

I love that phrase!

Mine goes like this... big breathe, chin duck, arch back, lift shoulders, and

puff

up chest, then squench up face, and wait for the food to finally burst into my

stomach... then nearly pass out because the food feels like a soft ball going

down a garden hose... and it feels like it stops my heart causing all the blood

to drain from my head.

Sound familiar?

I like you avoid carbonation, I can't burp! So if I drink carbonated beverages,

especially beer, I puff up like a puffer fish.

The only time I have Soda is when I am having chest pains/spasms a warm

can of soda for some reason helps alleviate the spasms. They don't happen

very much anymore. when I first got Achalaisa I got them alot, I thought I was

going to die of a heart attack. But I lived.

Thanks for sharing your phrase Power swallow.

It really helps tp know we are not the only ones dealing with this bizarre

disease.

My experience with the Heller Myotomy sounds similar to yours.

Patti

> > > >

> > > >

> > > > Well, my first thought, knowing none of your facts is,

> > > > is it really failed?

> > > >

> > > > One thing you have to remember is that the surgery

> > > > will do nothing to help the swallowing part. Like my

> > > > doctor told me, " the muscle action in your E is gone

> > > > and it is not coming back " .

> > > >

> > > > What the surgery did was just give the food someplace

> > > > to go when it finally hits bottom. You will still

> > > > have to drinks lots of water, don't lay down several

> > > > hours after eating, etc. This board has tons of hints

> > > > about that.

> > > >

> > > > Some of us here (me) have to be careful of what we eat

> > > > and some can eat whatever they want, just pay

> > > > attention to what foods you tolerate and which you

> > > > don't.

> > > >

> > > > Hope this gives you food for thought about what is

> > > > really going on in your E( pun intended)

> > > >

> > > > Dave

> > > >

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

> > > > From: " johnax11 " <johnax11@>

> > > > Subject: Failed Laproscopic Heler Myotomy - what next?

> > > >

> > > > I underwent a lapro heler myotomy, which was

> > > > completely

> > > > unsuccessful, because there was no improvement in my

> > > > ability to

> > > > swallow after the surgery. The surgeon, who had

> > > > caused me to believe

> > > > the success rate of the lapro myotomy was very high,

> > > > now recommends

> > > > open surgery, but I am hesitant.

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

Patti,

Thanks for your note. It is somehow a relief for me to hear that

someone else can relate to the " power swallow " . Your description

was perfect! For me, I would only add a large gulp of room

temperature water right after the " big breath " .

I will probably undergo another HM with an open procedure this

time. I have a consult appointment with the Cleveland Clinic in

June, a Dr. Rice. He has been mentioned here several times. I'll

post results here if I do work up the courage to go through with it.

Good luck to you, and others here.

.

> > > > >

> > > > >

> > > > > Well, my first thought, knowing none of your facts is,

> > > > > is it really failed?

> > > > >

> > > > > One thing you have to remember is that the surgery

> > > > > will do nothing to help the swallowing part. Like my

> > > > > doctor told me, " the muscle action in your E is gone

> > > > > and it is not coming back " .

> > > > >

> > > > > What the surgery did was just give the food someplace

> > > > > to go when it finally hits bottom. You will still

> > > > > have to drinks lots of water, don't lay down several

> > > > > hours after eating, etc. This board has tons of hints

> > > > > about that.

> > > > >

> > > > > Some of us here (me) have to be careful of what we eat

> > > > > and some can eat whatever they want, just pay

> > > > > attention to what foods you tolerate and which you

> > > > > don't.

> > > > >

> > > > > Hope this gives you food for thought about what is

> > > > > really going on in your E( pun intended)

> > > > >

> > > > > Dave

> > > > >

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

> > > > > From: " johnax11 " <johnax11@>

> > > > > Subject: Failed Laproscopic Heler Myotomy - what next?

> > > > >

> > > > > I underwent a lapro heler myotomy, which was

> > > > > completely

> > > > > unsuccessful, because there was no improvement in my

> > > > > ability to

> > > > > swallow after the surgery. The surgeon, who had

> > > > > caused me to believe

> > > > > the success rate of the lapro myotomy was very high,

> > > > > now recommends

> > > > > open surgery, but I am hesitant.

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

,

Welcome to the group! So glad to hear you've made an appointment

with Dr. Rice. He has an excellent reputation and does many, many

Hellers each year. We met him in January. He is direct and I think

he'll be honest with you about possible outcomes. We were impressed

and I think you'll be in good hands with Dr. Rice. Did you let them

know that you'll be traveling a distance to see him (if that's the

case)? We did, and they scheduled tests for my husband to have, all

within a couple of days, to save us some trips to Cleveland. Also,

their website, www.clevelandclinic.org, has some listings for hotels

in the area, in case you need that as well. Keep us posted on how

you're doing in the meantime. Many here have been through the same

things and can offer support! Good luck!

in Michigan

[Guest guest]

Dear Patti,

Perhaps you could send us a photo of you doing that movement. I could do with a good laugh- heehee. I was trying to imagine you as you were describing it and was giggling.

Also, I think I should warn you about two young men on this Board who are extremely naughty with their advice. One is Dave H. who keeps prescribing alcohol, and the other is , who tells everyone to eat ice cream. I have taken their advice in all good faith and now I find I am an alcoholic and chronically obese !!!!

Also I tend to worry about all the people who advice carbonation - all those bubbles have to end up somewhere - Yikes.

Love from Ann in England xxx> > > > >> > > > > > > > > > Well, my first thought, knowing none of your facts is,> > > > > is it really failed?> > > > > > > > > > One thing you have to remember is that the surgery> > > > > will do nothing to help the swallowing part. Like my> > > > > doctor told me, "the muscle action in your E is gone> > > > > and it is not coming back".> > > > > > > > > > What the surgery did was just give the food someplace> > > > > to go when it finally hits bottom. You will still> > > > > have to drinks lots of water, don't lay down several> > > > > hours after eating, etc. This board has tons of hints> > > > > about that.> > > > > > > > > > Some of us here (me) have to be careful of what we eat> > > > > and some can eat whatever they want, just pay> > > > > attention to what foods you tolerate and which you> > > > > don't.> > > > > > > > > > Hope this gives you food for thought about what is> > > > > really going on in your E( pun intended)> > > > > > > > > > Dave> > > > > > > > > > ===================================================> > > > > From: "johnax11" <johnax11@>> > > > > Subject: Failed Laproscopic Heler Myotomy - what next?> > > > > > > > > > I underwent a lapro heler myotomy, which was > > > > > completely > > > > > unsuccessful, because there was no improvement in my > > > > > ability to > > > > > swallow after the surgery. The surgeon, who had > > > > > caused me to believe > > > > > the success rate of the lapro myotomy was very high, > > > > > now recommends > > > > > open surgery, but I am hesitant. > > > > > > > > > > __________________________________________________> > > > >

[Guest guest]

,

Thanks for your note. I'm pleased to hear of your good experiences

with Dr Rice. I did let him know I would be traveling, however they

did not suggest scheduling any tests in advance. i have already had 3

barium swallows, 3 endoscopies, 3 chest x-rays, 2 motiltiy tests, 1 24

hr Ph test, and i will have results in hand. Having said that, I'm

sure I'll be in for more tests!

Thanks again.

john.

>

> ,

> Welcome to the group! So glad to hear you've made an appointment

> with Dr. Rice. He has an excellent reputation and does many, many

> Hellers each year. We met him in January. He is direct and I think

> he'll be honest with you about possible outcomes. We were impressed

> and I think you'll be in good hands with Dr. Rice. Did you let them

> know that you'll be traveling a distance to see him (if that's the

> case)? We did, and they scheduled tests for my husband to have, all

> within a couple of days, to save us some trips to Cleveland. Also,

> their website, www.clevelandclinic.org, has some listings for hotels

> in the area, in case you need that as well. Keep us posted on how

> you're doing in the meantime. Many here have been through the same

> things and can offer support! Good luck!

>

> in Michigan

>

[Guest guest]

Prior to my Heller -- that describes EXACTLY my actions!

Peggy

> > > > >

> > > > >

> > > > > Well, my first thought, knowing none of your facts is,

> > > > > is it really failed?

> > > > >

> > > > > One thing you have to remember is that the surgery

> > > > > will do nothing to help the swallowing part. Like my

> > > > > doctor told me, " the muscle action in your E is gone

> > > > > and it is not coming back " .

> > > > >

> > > > > What the surgery did was just give the food someplace

> > > > > to go when it finally hits bottom. You will still

> > > > > have to drinks lots of water, don't lay down several

> > > > > hours after eating, etc. This board has tons of hints

> > > > > about that.

> > > > >

> > > > > Some of us here (me) have to be careful of what we eat

> > > > > and some can eat whatever they want, just pay

> > > > > attention to what foods you tolerate and which you

> > > > > don't.

> > > > >

> > > > > Hope this gives you food for thought about what is

> > > > > really going on in your E( pun intended)

> > > > >

> > > > > Dave

> > > > >

> > > > >

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

> > > > > From: " johnax11 " <johnax11@>

> > > > > Subject: Failed Laproscopic Heler Myotomy - what next?

> > > > >

> > > > > I underwent a lapro heler myotomy, which was

> > > > > completely

> > > > > unsuccessful, because there was no improvement in my

> > > > > ability to

> > > > > swallow after the surgery. The surgeon, who had

> > > > > caused me to believe

> > > > > the success rate of the lapro myotomy was very high,

> > > > > now recommends

> > > > > open surgery, but I am hesitant.

> > > > >

> > > > > __________________________________________________

> > > > >