Re: child with recurring symptoms after Heller Myotomy

[Guest guest]

How old is your son now, and where are you located?

The next option might be a pneumatic dilation or a second myotomy

(laparoscopic or open). Members of the mailing list may be able to

recommend doctors in your area who are highly experienced in achalasia.

in PA

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

From: " Malo " <grneyegrrl@...>

Sent: Tuesday, March 08, 2011 10:43 AM

<achalasia >

Subject: child with recurring symptoms after Heller Myotomy

> Hello all-

>

> New to the group here and hoping to find some info/support, really

> anything at this point. Can't find a lot of info on the web.

> My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

> pounds when we found out. We've gone through feeding tubes, supplements,

> all of that. He had 4 dilations before they determined those weren't

> working. He finally had a myotomy about 2 years ago.

> He's been doing GREAT until recently. I've noticed the same things: not

> eating a lot, frequent trips to the bathroom during meals, rushing for a

> drink while eating.

> We go back to the doctor in a week. My question is what's the next option?

> I read something about an open Heller's Myotomy, which terrifies me.

> Has anyone else been through this? Any advice would be greatly

> appreciated!

>

[Guest guest]

He's 11 now. We live in DC. The doc we have is amazing. He's been treated at

Children's Hospital for the length of this. The dilations have never worked in

the past. He had a lot of scar tissue that they were never able to break. My

fear of course is another myotomy. I really just want him to not have to deal

with this anymore. It breaks my heart to see him like that, and it's unbearable

to see him after surgery. It's one of those things that as a Mom you can't make

better, you know?

>

> How old is your son now, and where are you located?

>

> The next option might be a pneumatic dilation or a second myotomy

> (laparoscopic or open). Members of the mailing list may be able to

> recommend doctors in your area who are highly experienced in achalasia.

>

> in PA

>

> --------------------------------------------------

> From: " Malo " <grneyegrrl@...>

> Sent: Tuesday, March 08, 2011 10:43 AM

> <achalasia >

> Subject: child with recurring symptoms after Heller Myotomy

>

> > Hello all-

> >

> > New to the group here and hoping to find some info/support, really

> > anything at this point. Can't find a lot of info on the web.

> > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

> > pounds when we found out. We've gone through feeding tubes, supplements,

> > all of that. He had 4 dilations before they determined those weren't

> > working. He finally had a myotomy about 2 years ago.

> > He's been doing GREAT until recently. I've noticed the same things: not

> > eating a lot, frequent trips to the bathroom during meals, rushing for a

> > drink while eating.

> > We go back to the doctor in a week. My question is what's the next option?

> > I read something about an open Heller's Myotomy, which terrifies me.

> > Has anyone else been through this? Any advice would be greatly

> > appreciated!

> >

>

[Guest guest]

Thanks! I have to say it's a relief to find parents to talk to about this. I'm

actually in DC. Our GI doc's name is Ali Bader. He's amazing! My son has also

seen a Dr. Kerzner who is equally good. They are both out of Children's Hospital

here in DC. It's such a great place. From what I've gathered, these 2 are the

experts in our area. The surgeon we had is also the only pediatric surgeon in

the area (that I'm aware of) that performs this procedure. There are others, but

not ones that concentrate specifically on peds.

Originally, they tried the dilations as a minimally invasive option. The first 2

did nothing. The second two lasted about a week. They were afraid to use a

bigger balloon so we opted for the myotomy since he had no relief of symptoms.

They did do the myotomy with the dor fundoplication. Things went fairly well

(for him- I was a mess!), but a few months later, same thing. Turns out part of

the flap was bulging in so the did a laparoscopic procedure to fix. All has been

well until the past few months, with things progressively getting worse.

We are going to an appointment on the 17th, so I am hoping for some answers. I

am definitely an aggressive parent when it comes to this issue! I'm hoping at

all costs to avoid another surgical procedure, but he had JUST started putting

weight back on recently, and now we're going back down hill. I don't want him to

be in the same place he was before. And I agree with you, the risk of another

dilation isn't worth the results. I'm not willing to risk a perforation.

I don't know anyone in my area who's been through this, but I'm hoping to find

someone through here!

But, just knowing other parents have been through this and can give me advice

and support is a load off my shoulders. I will let you know what they say.

Thanks so much!

>

> From: Malo <grneyegrrl@...>

> Subject: Re: child with recurring symptoms after Heller Myotomy

> achalasia

> Date: Tuesday, March 8, 2011, 8:12 AM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> He's 11 now. We live in DC. The doc we have is amazing. He's been

treated at Children's Hospital for the length of this. The dilations have never

worked in the past. He had a lot of scar tissue that they were never able to

break. My fear of course is another myotomy. I really just want him to not have

to deal with this anymore. It breaks my heart to see him like that, and it's

unbearable to see him after surgery. It's one of those things that as a Mom you

can't make better, you know?

>

>

>

> > From: " Malo " <grneyegrrl@>

>

> > Sent: Tuesday, March 08, 2011 10:43 AM

>

> > <achalasia >

>

> > Subject: child with recurring symptoms after Heller Myotomy

>

> >

>

> > > Hello all-

>

> > >

>

> > > New to the group here and hoping to find some info/support, really

>

> > > anything at this point. Can't find a lot of info on the web.

>

> > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

>

> > > pounds when we found out. We've gone through feeding tubes, supplements,

>

> > > all of that. He had 4 dilations before they determined those weren't

>

> > > working. He finally had a myotomy about 2 years ago.

>

> > > He's been doing GREAT until recently. I've noticed the same things: not

>

> > > eating a lot, frequent trips to the bathroom during meals, rushing for a

>

> > > drink while eating.

>

> > > We go back to the doctor in a week. My question is what's the next option?

>

> > > I read something about an open Heller's Myotomy, which terrifies me.

>

> > > Has anyone else been through this? Any advice would be greatly

>

> > > appreciated!

>

> > >

>

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Welcome to the group.

Malo wrote:

> ... My son was born w/achalasia but wasn't diagnosed until he was 9. ...

That has to be hard to deal with. Carolyn and the other mothers of

children with achalasia have posted a lot of good advice on this

subject. I would certainly consider what they say.

Here are some links to get you started. Most of them would have been

better to have had before treatment, but you, or someone, may find them

interesting:

A single center 26-year experience with treatment of esophageal

achalasia: is there an optimal method?

http://www.ncbi.nlm.nih.gov/pubmed/19573660

Achalasia in childhood: surgical treatment and outcome

http://www.ncbi.nlm.nih.gov/pubmed/11558010

Achalasia of the cardia: experience with hydrostatic balloon dilatation

in children

http://www.ncbi.nlm.nih.gov/pubmed/12029340

Cardiac achalasia in children. Dilatation or surgery?

http://www.ncbi.nlm.nih.gov/pubmed/10584188

Efficacy of Rigiflex balloon dilatation in 12 children with achalasia: a

6-month prospective study showing weight gain and symptomatic improvement

http://www.ncbi.nlm.nih.gov/pubmed/12220427

Esophageal achalasia of unknown etiology in infants

http://www.ncbi.nlm.nih.gov/pubmed/18402256

Evaluation of minimally invasive approaches to achalasia in children

http://www.ncbi.nlm.nih.gov/pubmed/11329595

Health-related quality of life in children with achalasia

http://www.ncbi.nlm.nih.gov/pubmed/20973860

Infantile achalasia treated by pneumatic dilatation

http://www.ncbi.nlm.nih.gov/pubmed/2131954

Infantile achalasia. Brief clinical report

http://www.ncbi.nlm.nih.gov/pubmed/979322

Intraoperative manometry during laparoscopic Heller myotomy improves

outcome in pediatric achalasia

http://www.ncbi.nlm.nih.gov/pubmed/18206457

Laparoscopic and thoracoscopic esophagomyotomy for children with achalasia

http://www.ncbi.nlm.nih.gov/pubmed/11698765

Laparoscopic Heller's cardiomyotomy

http://www.ncbi.nlm.nih.gov/pubmed/20108807

Laparoscopic oesophageal cardiomyotomy without fundoplication in

children with achalasia:

a 10-year experience: a retrospective review of the results of

laparoscopic oesophageal cardiomyotomy without an anti-reflux procedure

in children with achalasia

http://www.ncbi.nlm.nih.gov/pubmed/19495877

Minimally invasive Heller's myotomy in children: safe and effective

http://www.ncbi.nlm.nih.gov/pubmed/19433168

Outcomes of treatment of childhood achalasia

http://www.ncbi.nlm.nih.gov/pubmed/20620315

Perforation complicating balloon dilation of esophageal strictures in

infants and children

http://www.ncbi.nlm.nih.gov/pubmed/8234699

Pneumatic dilatation for childhood achalasia

http://www.ncbi.nlm.nih.gov/pubmed/11666045

UK incidence of achalasia: an 11-year national epidemiological study

http://www.ncbi.nlm.nih.gov/pubmed/20515971

[Guest guest]

Hi Carolyn, how long did it take for your son to start eating after the HM

surgery. So far so good my daughter is doing a lot better except sometimes she

is has some pains in her belly and she can always feel her stomach growling (she

never felt before). She constantly goes to the bathroom now. Today is her first

treat SHAMROCK MILKSHAKE.... YEHEY BIG SMILE for my girl..  We take one step at

a time and thank the Lord no more throwing up..

________________________________

From: Carolyn <wooleeacre@...>

achalasia

Sent: Tue, March 8, 2011 1:29:08 PM

Subject: child with recurring symptoms after Heller Myotomy

 

Hello, and welcome to the group.

I see you are in New York! you say your specialist is amazing? is he pediatric?

What is his background and what has he suggested.

do you know about Pager? http://www.reflux.org/

Has your surgeon been with you all along?

My question is this, in the original note you say he had 4 dialations,

the second not says " another myotomy " .  Has he had a myotomy?

What age was this? did he have a fundo with it? Was there a growth stitch put in

place?

If he had the myotomy, was the surgeon a pediatric specialist with a lot of

experience? What did they say the condition of the esophagus was in, after 4

dialation at a young age?

He will have this his whole life, and we do what we can to help them get to a

place where their quality of life is good! We work and read and question and

research, but it comes down to having the finest care possible because of the

rarity of this disorder. We CANNOT slack off, not for a moment. It is paramount

we do all we can for our children.

My son had an OPEN procedure in 2005. He has done better, I think because it was

open. His surgeon was able to physically " see " the cut and do the fundo which I

think helped. The recovery time was much much longer, but comparitively speaking

he has done extremely well.

I would NOT allow any more dilations, until I had another opinion. I would not

have thought they would do a dilation on a child so young.  Please let us know,

who your specialist is.  do you need help for a second opinion?  What are the

options they have spoken to you about your child's condition?

Are you an aggressive parent? Do you have an advocate? It does break our

heart... but our children are gifted with Fortitude. We have to help them to the

best of OUR ability. We advocate for them.

Let me know how any of us can help you.

Carolyn

mom of Cameron

myo'd and fundo'd in 05

From: Malo <grneyegrrl@...>

Subject: Re: child with recurring symptoms after Heller Myotomy

achalasia

Date: Tuesday, March 8, 2011, 8:12 AM

 

He's 11 now. We live in DC. The doc we have is amazing. He's been treated at

Children's Hospital for the length of this. The dilations have never worked in

the past. He had a lot of scar tissue that they were never able to break. My

fear of course is another myotomy. I really just want him to not have to deal

with this anymore. It breaks my heart to see him like that, and it's unbearable

to see him after surgery. It's one of those things that as a Mom you can't make

better, you know?

> From: " Malo " <grneyegrrl@...>

> Sent: Tuesday, March 08, 2011 10:43 AM

> <achalasia >

> Subject: child with recurring symptoms after Heller Myotomy

>

> > Hello all-

> >

> > New to the group here and hoping to find some info/support, really

> > anything at this point. Can't find a lot of info on the web.

> > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

> > pounds when we found out. We've gone through feeding tubes, supplements,

> > all of that. He had 4 dilations before they determined those weren't

> > working. He finally had a myotomy about 2 years ago.

> > He's been doing GREAT until recently. I've noticed the same things: not

> > eating a lot, frequent trips to the bathroom during meals, rushing for a

> > drink while eating.

> > We go back to the doctor in a week. My question is what's the next option?

> > I read something about an open Heller's Myotomy, which terrifies me.

> > Has anyone else been through this? Any advice would be greatly

> > appreciated!

> >

>

[Guest guest]

Hi! i dont' know your name but i just wanted to say I feel for you. As a mom of

twin boys i know how any kind of sickness just weighs on

us and we want to fix it immediately. So I am sending you big hugs. I have

suffered with Achalasia for 20 years and i am only 36.

i live in fear (not major fear, but some fear) of my kids getting this horrific

disease. I saw that you wrote that your son was born with it. How do you know?

Were there any signs when he was very little?

My son Jake sometimes says wierd things like, " mom, I can't burp " after he eats.

This bothers me because my first symptom was the inability to burp.

My other son can release these loud obnoxious burps from the stomach but Jake

does not. I do hear him burp from time to time but its never as loud and

gutteral as his brother.

I have read online about a pediatric case of Achalasia in a 3 year old. That

child presented with regurgitation, nighttime cough and re current chest

infections. Jake has none of these symptoms but I still worry.

I REALLY hope this disease is not hereditary - even though we are learning that

there is a genetic cause for it.

Anyway, I hope that your son gets some good answers from his surgeons. Maybe

another dilitation will do the trick? Maybe a re-do myotomy? Maybe take down the

wrap? Not sure but I will pray for you both anyway!

Cara

[Guest guest]

You mentioned shamrock milkshake and I thought I'd mention that for quite of few

of us achalasians that I've gotten to know, cold dairy things can be icky. Not

sure why. I thought it was just me, but a few others have mentioned it.

Although dieticians make recommendations, for many of us the things that work

and the things that don't are not logical.

Ice cream and milk shakes taste weird to me, it is almost a foamy texture like

the white foam before surgery. Everyone is different, though.

I wouldn't put that much faith in what a dietician says as far as what is easy

to eat. If they are advising about ways to get the right nutrients in, then

fine. Pureed things or finely chopped things are not necessarily any easier.

Adding butter or fat to most anything helps.

Spasms are common after surgery, they taper off usually.

Sandy

>

> From: Malo <grneyegrrl@...>

> Subject: Re: child with recurring symptoms after Heller Myotomy

> achalasia

> Date: Tuesday, March 8, 2011, 8:12 AM

>

>  

>

> He's 11 now. We live in DC. The doc we have is amazing. He's been treated at

> Children's Hospital for the length of this. The dilations have never worked in

> the past. He had a lot of scar tissue that they were never able to break. My

> fear of course is another myotomy. I really just want him to not have to deal

> with this anymore. It breaks my heart to see him like that, and it's

unbearable

> to see him after surgery. It's one of those things that as a Mom you can't

make

> better, you know?

>

> > From: " Malo " <grneyegrrl@>

>

> > Sent: Tuesday, March 08, 2011 10:43 AM

>

> > <achalasia >

>

> > Subject: child with recurring symptoms after Heller Myotomy

>

> >

>

> > > Hello all-

>

> > >

>

> > > New to the group here and hoping to find some info/support, really

>

> > > anything at this point. Can't find a lot of info on the web.

>

> > > My son was born w/achalasia but wasn't diagnosed until he was 9. He was 56

>

> > > pounds when we found out. We've gone through feeding tubes, supplements,

>

> > > all of that. He had 4 dilations before they determined those weren't

>

> > > working. He finally had a myotomy about 2 years ago.

>

> > > He's been doing GREAT until recently. I've noticed the same things: not

>

> > > eating a lot, frequent trips to the bathroom during meals, rushing for a

>

> > > drink while eating.

>

> > > We go back to the doctor in a week. My question is what's the next option?

>

> > > I read something about an open Heller's Myotomy, which terrifies me.

>

> > > Has anyone else been through this? Any advice would be greatly

>

> > > appreciated!

>

> > >

>

> >

>

>

[Guest guest]

Thank you so much. I wish I knew about this group before!

Sent from my iPhone

On Mar 8, 2011, at 4:32 PM, notan ostrich <notan_ostrich@...> wrote:

> Welcome to the group.

>

> Malo wrote:

> > ... My son was born w/achalasia but wasn't diagnosed until he was 9. ...

>

> That has to be hard to deal with. Carolyn and the other mothers of

> children with achalasia have posted a lot of good advice on this

> subject. I would certainly consider what they say.

>

> Here are some links to get you started. Most of them would have been

> better to have had before treatment, but you, or someone, may find them

> interesting:

>

> A single center 26-year experience with treatment of esophageal

> achalasia: is there an optimal method?

> http://www.ncbi.nlm.nih.gov/pubmed/19573660

>

> Achalasia in childhood: surgical treatment and outcome

> http://www.ncbi.nlm.nih.gov/pubmed/11558010

>

> Achalasia of the cardia: experience with hydrostatic balloon dilatation

> in children

> http://www.ncbi.nlm.nih.gov/pubmed/12029340

>

> Cardiac achalasia in children. Dilatation or surgery?

> http://www.ncbi.nlm.nih.gov/pubmed/10584188

>

> Efficacy of Rigiflex balloon dilatation in 12 children with achalasia: a

> 6-month prospective study showing weight gain and symptomatic improvement

> http://www.ncbi.nlm.nih.gov/pubmed/12220427

>

> Esophageal achalasia of unknown etiology in infants

> http://www.ncbi.nlm.nih.gov/pubmed/18402256

>

> Evaluation of minimally invasive approaches to achalasia in children

> http://www.ncbi.nlm.nih.gov/pubmed/11329595

>

> Health-related quality of life in children with achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/20973860

>

> Infantile achalasia treated by pneumatic dilatation

> http://www.ncbi.nlm.nih.gov/pubmed/2131954

>

> Infantile achalasia. Brief clinical report

> http://www.ncbi.nlm.nih.gov/pubmed/979322

>

> Intraoperative manometry during laparoscopic Heller myotomy improves

> outcome in pediatric achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/18206457

>

> Laparoscopic and thoracoscopic esophagomyotomy for children with achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/11698765

>

> Laparoscopic Heller's cardiomyotomy

> http://www.ncbi.nlm.nih.gov/pubmed/20108807

>

> Laparoscopic oesophageal cardiomyotomy without fundoplication in

> children with achalasia:

> a 10-year experience: a retrospective review of the results of

> laparoscopic oesophageal cardiomyotomy without an anti-reflux procedure

> in children with achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/19495877

>

> Minimally invasive Heller's myotomy in children: safe and effective

> http://www.ncbi.nlm.nih.gov/pubmed/19433168

>

> Outcomes of treatment of childhood achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/20620315

>

> Perforation complicating balloon dilation of esophageal strictures in

> infants and children

> http://www.ncbi.nlm.nih.gov/pubmed/8234699

>

> Pneumatic dilatation for childhood achalasia

> http://www.ncbi.nlm.nih.gov/pubmed/11666045

>

> UK incidence of achalasia: an 11-year national epidemiological study

> http://www.ncbi.nlm.nih.gov/pubmed/20515971

>

>

[Guest guest]

My name is - nice to meet you : )

My son never showed any outright symptoms, but I do remember when he was a baby

that he threw up a lot. As he got older, he never said a word to me about

anything. I noticed at some point that he was going to the bathroom 3 to 5 times

a meal. I thought he just couldn't sit still like most kids. When I asked if he

was okay, he said " I have to throw up when I eat, but after I do I feel

better. " My first thought and the pediatrician's was acid reflux. They sent him

for a swallow study and as SOON as he swallowed that barium I knew something was

really wrong. He also had the night time cough a lot. Turns out it was

micro-aspiration pneumonia from the food he couldn't get down.

I'm sorry to hear that you've dealt with this for so long, but it gives me hope

that my son can eventually live with it as well! And you're right, as a mom I

would take on this for him in a second if I could.

Nobody else in our family or his father's family has had this though. Hope

that's somewhat encouraging!

Thanks for the hugs : )

>

> Hi! i dont' know your name but i just wanted to say I feel for you. As a mom

of twin boys i know how any kind of sickness just weighs on

> us and we want to fix it immediately. So I am sending you big hugs. I have

suffered with Achalasia for 20 years and i am only 36.

>

> i live in fear (not major fear, but some fear) of my kids getting this

horrific disease. I saw that you wrote that your son was born with it. How do

you know?

>

> Were there any signs when he was very little?

>

> My son Jake sometimes says wierd things like, " mom, I can't burp " after he

eats. This bothers me because my first symptom was the inability to burp.

>

> My other son can release these loud obnoxious burps from the stomach but Jake

does not. I do hear him burp from time to time but its never as loud and

gutteral as his brother.

>

> I have read online about a pediatric case of Achalasia in a 3 year old. That

child presented with regurgitation, nighttime cough and re current chest

infections. Jake has none of these symptoms but I still worry.

>

> I REALLY hope this disease is not hereditary - even though we are learning

that there is a genetic cause for it.

>

> Anyway, I hope that your son gets some good answers from his surgeons. Maybe

another dilitation will do the trick? Maybe a re-do myotomy? Maybe take down the

wrap? Not sure but I will pray for you both anyway!

>

> Cara

>

[Guest guest]

I am looking for info that pertains to the progressive course of treatment as in

if the hm and dilations don't work, what is typically the next course of action?

>

> > ... next week she will be going back to her apt and back to school.

>

>

>

> It may be good to give the school a heads up on the possibility of

>

> spasms. If they don't understand what is happening they could cause your

>

> child to needlessly suffer more or needlessly call a ambulance. A spasm

>

> can be as painful as a heart attack and perfectly mimic one. (There is a

>

> reason the LES is called the cardiac sphincter). If she has a spasm with

>

> that much pain they may panic and do something unneeded. On the other

>

> hand, if the pain is bad but they don't believe it they may force her to

>

> sit it out instead of letting her have a drink to stop it. A note to the

>

> office, nurse and the teachers may be wise. Keeping a water bottle on

>

> hand can be a good precaution at this time. Some schools have a problem

>

> with that. Some kids need a snack to stop spasms. Good luck with that in

>

> class. Also, surprisingly some doctors that treat achalasia seem to be

>

> ignorant of how common and painful spasm can be for us. Those that don't

>

> treat achalasia are probably clueless about it. Many heart doctors

>

> understand because they see the achalasia patients that are in the ER

>

> being treated for a supposed heart attack.

>

>

>

> notan

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

>

>

>

>

>

>

>

[Guest guest]

Unfortunately, for a child at such a young age, I don't know if there is a next

course of action (short of an esophagectomy). We just recently had this

discussion with another mom of a child with A. She also had a myotomy and is

still having issues.

There are risks with removing the esophagus in someone so young. There are not

enough long term studies that allow us to see the durability of such a surgery.

We know the stomach can last as an esophagus for more than 20 years and I think

even for 30 but we don't have info going further out. I would be hesitant to

take that route right now. YOur child is still growing and changing. Too much

still going on inside of the body.

I really hope that you find the BEST GI doctor for your son and get a 2nd

opinion. If you have to travel out of state to do so, then do it. It will make

all the difference!

C

> >

> > > ... next week she will be going back to her apt and back to school.

> >

> >

> >

> > It may be good to give the school a heads up on the possibility of

> >

> > spasms. If they don't understand what is happening they could cause your

> >

> > child to needlessly suffer more or needlessly call a ambulance. A spasm

> >

> > can be as painful as a heart attack and perfectly mimic one. (There is a

> >

> > reason the LES is called the cardiac sphincter). If she has a spasm with

> >

> > that much pain they may panic and do something unneeded. On the other

> >

> > hand, if the pain is bad but they don't believe it they may force her to

> >

> > sit it out instead of letting her have a drink to stop it. A note to the

> >

> > office, nurse and the teachers may be wise. Keeping a water bottle on

> >

> > hand can be a good precaution at this time. Some schools have a problem

> >

> > with that. Some kids need a snack to stop spasms. Good luck with that in

> >

> > class. Also, surprisingly some doctors that treat achalasia seem to be

> >

> > ignorant of how common and painful spasm can be for us. Those that don't

> >

> > treat achalasia are probably clueless about it. Many heart doctors

> >

> > understand because they see the achalasia patients that are in the ER

> >

> > being treated for a supposed heart attack.

> >

> >

> >

> > notan

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[Guest guest]

Thanks. That's what I was afraid of

Sent from my iPhone

[Guest guest]

Exactly true.

> > I am looking for info that pertains to the progressive course of treatment

as in if the hm and dilations don't work, what is typically the next course of

action?

>

> Nothing official here. This is just off the top of my head.

> notan

>

> Start: 1) have problems

> 2) get tested

> 3) if not diagnosed with achalasia,

> are you nuts or is it your doctor, return to 1

> 4) Finally diagnosed with achalasia, others may still

> think you are nuts,

> chose from plans A, B, C, or D

>

> Plan A: 1) (do nothing)

> or (study and learn about achalasia)

> or (wait for money, time or insurance)

> or (try alt-med)

> or (wait for stem cells)

> or (wait for replacement esophagus)

> or (hope for a miracle)

> 2) (continue as needed, here on 2 until problems develop)

> or (try and convince yourself and others you are

> being cured, continue here on 2 until problems prove otherwise)

> or (goto either 3 or 4)

> 3) get more testing

> 4) if it is not too late (chose from plans A, B, C, or D)

> or if it is too late (go directly to plan E do not

> pass go)

>

> Plan B: 1) have myotomy, hope it lasts the rest of your life

> 2) continue here on 2 until

> (problems) or (myotomy failure)

> 3) do EGD or barium

> 4) (try dilatation or Botox or medications then return to 2)

> or (go right to 5 or 6)

> 5) manometry again and/or possibly other tests

> 6) (redo myotomy and return to 2)

> or (return to 4)

> or (go right to 7)

> 7) (goto plan E)

> or (goto plan A)

>

> Plan C: 1) have dilatation, hope it lasts the rest of your life

> 2) continue here on 2 until

> (problems) or (dilatation failure)

> or if doing graded dilatation (return to 1 for next grade)

> 3) do EGD or barium

> 4) (return to 1)

> or (try Botox and return to 2)

> or (try medications and return to 2)

> or (go right to 5 or 6)

> 5) manometry again and/or possibly other tests

> 6) (goto plan A, B, D or E)

> or (return to 4)

>

> Plan D: 1) have Botox, be careful telling others,

> they already think you are nuts

> 2) If no results (goto 4)

> if it works (hope it lasts, lots of luck with that)

> 3) symptoms return, of course

> 4) if still willing to try Botox (return to 1 for another

> possibly bigger dose)

> or (if not too late, goto to plan A, B, or C)

> or (if too late goto plan E)

>

> Plan E: 1) ask self and doctorS, " do I really want or need to be here? "

> 2) If agreed answer is " no " then try plan A, B, C or D

> per doctorS

> 3) have esophagectomy

> 4) miss months of life

> 5) wait for complete recovery and hope not to get stuck

> here on 5

> and hope you don't skip step 6

> 6) recovered, you survived, hope to stay here the rest

> of your life

> or (skip right to 7)

> 7) problems

> 8) try (feeding tube)

> or (medications)

> or (dilatation)

> 9) if not doing too bad return to 5

> 10) major failure, bummer

> 11) Roux-en-Y or other revisional surgery

> to modify, replace, bypass or reroute portions of

> failed GI organs.

> 12) return to 4 or 5

>

[Guest guest]

Notan, you are so knowledgeable about Achalasia. You mention " there are rarer

familial types that are inherited. " Can you provide more information or a link

to this information? Thanks.

Barb

> > ... I REALLY hope this disease is not hereditary - even though we are

learning that there is a genetic cause for it. ...

>

> What is known as primary or idiopathic achalasia, the type most of us

> have, is not inherited. This may be picky, but there is not a known

> genetic cause for it but perhaps a genetic susceptibility to it. There

> are much rarer familial types that are inherited.

>

> notan

>