Re: Continued problems swallowing a year after surgery

January 12, 2011

Welcome!Â I will put in my 2 cents here and hope I can shed some light!Â

Achalasia means that the esophagus and LES muscles are no longer working, they

are dead muscle, the surgery simply cuts and fixes the plumbing to allow food to

" empty " , but the muscle is still dead and we still don't have muscles pushing

the food down, so eating must still be slower than normal, we will never be

normal.Â After surgery most of us cannot expect to swallow like a normal

person,

we can only be near normal...some are better than others.Â The surgery was

either successful or not, so if he is not doing well, then they should have a

look at things.Â Many times ( I have heard on this support group) a dilation is

done when the person is still having lots of trouble.Â

For me, I had surgery back in August, I can eat amazingly better than before

surgery, because I have no regurgitation, BUT, I can't swallow lots and lots of

food at once, I must still eat smaller bites and not shovel food quickly.Â

Could

his problem be that he is young and wants to eat too fast?Â

Gerd, is acid reflex, which is common with lots of people even without

achalasia.Â

I don't know why your surgeon said that trouble swallowing eventually goes

away?Â Achalasia is not cureable, the muscle is dead and is NOT ever going to

start working again, until they have a miracle cure.Â Some people may need

another surgery down the road, everyone is different and some will lose their

esophagus in the process, it sadly can happen.Â That is why your son needs to

understand that he needs to take care of his esophagus and eat smaller bites and

drink some liquid with it to help the process of pushing the food down.Â Plus,

if things are stuck alot, then he should be checked again...I would pick only

the top doctors who specialize in achalasia..who have this advanced training,

the outcome depends alot on the doctor as well.Â

I wish you all the best!

Julee, So Calif.

________________________________

From: phidgeit <marlino@...>

achalasia

Sent: Wed, January 12, 2011 4:04:01 PM

Subject: Continued problems swallowing a year after surgery

Â

Hi, I'm new to group. My son was diagnosed with achalasia a

year ago at age 17. He had the Heller myotomy and wrap, which

opened up the LES. So getting food down is no longer a problem

for him. Before that, it got to where everything was coming up, and he lost 30

lbs (he has since gained it back). However, he still seems to be having problems

swallowing.

I have several questions for the group.

1) I've searched the comments, and people talk of having to have the procedure

multiple times. It seems to me that trouble swallowing, since it's likely

neurological, would probably not go away just because the LES gets opened up.

But the " hole " is still there - was surgery needed again because it closed back

up? Or is it somehow related to swallowing difficulty, for which I don't see an

obvious connection.

2) The surgeon said for most people, the trouble swallowing does go away. Is it

likely after a year for that to happen?

3) Why would it go away just because the LES gets cut? The nerve problem hasn't

changed. Would that just be because the esophagus " retrains " itself somehow?

4) Is continued problems swallowing (but not getting the food down, and so far

not GERD) somehow dangerous? Should this be looked at? Given more time? Ignored?

Right now it's fairly minor but happens pretty much with every meal - at the

beginning of the meal, then seems to get better as he eats.

5) I may try acupuncture (sure worked for my back, so I know it's not voodoo). I

did read several posts on that, but any thoughts on that would be appreciated.

Thanks for any input. Not having had the disease myself, my questions may be

naive, but I'd really like to understand this. My son is now technically an

adult, but at 18 he of course just wants to ignore this whole thing instead of

being proactive, and as his mom I think I'm going to have to help him manage

this for awhile.

January 13, 2011

Hi New person (what's your name?) - along with everything else, there are some

foods that are just going to be tough for him to swallow and that varies from

one person to the next - he's going to have to do some trial and error.

I always swallowed fairly well but things like skins from fruit and sometimes

salad was hard - kind of felt like it was just stuck - not really painful but I

knew it was there. Some people have problems with meat or rice - like Julee said

- he needs to eat small bites, slowly. The one universal problem food seems to

be raw carrots!! I prefer to shred them or use a veggie peeler if I want some in

a salad.

Where are you located and who are you seeing? Going to the best of the best is

really vital for him - especially given his age. We can help you figure out

where to go.

Glad you found us!!

~ in NC

>

> Hi, I'm new to group. My son was diagnosed with achalasia a

> year ago at age 17. He had the Heller myotomy and wrap, which

> opened up the LES. So getting food down is no longer a problem

> for him. Before that, it got to where everything was coming up, and he lost 30

lbs (he has since gained it back). However, he still seems to be having problems

swallowing.

> I have several questions for the group.

> 1) I've searched the comments, and people talk of having to have the procedure

multiple times. It seems to me that trouble swallowing, since it's likely

neurological, would probably not go away just because the LES gets opened up.

But the " hole " is still there - was surgery needed again because it closed back

up? Or is it somehow related to swallowing difficulty, for which I don't see an

obvious connection.

> 2) The surgeon said for most people, the trouble swallowing does go away. Is

it likely after a year for that to happen?

> 3) Why would it go away just because the LES gets cut? The nerve problem

hasn't changed. Would that just be because the esophagus " retrains " itself

somehow?

> 4) Is continued problems swallowing (but not getting the food down, and so far

not GERD) somehow dangerous? Should this be looked at? Given more time? Ignored?

Right now it's fairly minor but happens pretty much with every meal - at the

beginning of the meal, then seems to get better as he eats.

> 5) I may try acupuncture (sure worked for my back, so I know it's not voodoo).

I did read several posts on that, but any thoughts on that would be appreciated.

>

> Thanks for any input. Not having had the disease myself, my questions may be

naive, but I'd really like to understand this. My son is now technically an

adult, but at 18 he of course just wants to ignore this whole thing instead of

being proactive, and as his mom I think I'm going to have to help him manage

this for awhile.

>

January 13, 2011

Thanks for responding and . I'm Phyllis in Northern California. I

am always telling my son () to slow down and take smaller bites, but that

advice is often ignored, unfortunately. The swallowing difficulties don't seem

to bother him much, I think he's used to it (or just doesn't want to say, I'm

not sure). But I do think I should take him to a doc with achalasia experience

in our area for follow up. Does anyone know of any experts in the SF Bay Area?

Perhaps at Stanford? How does one find out who the specialists / experts are in

your area?

When he started having all these GI issues, we took him to a pediatric GI doc

(we didn't know what the problem was of course, so we had no idea what type of

specialist to look for). He is a very good doctor, but has no practical

experience with achalasia, as it's very rare in kids. After diagnosis had

surgery the next day. The surgeon has done several of these surgeries and we

were happy with him. But now I need an adult GI doc who has alot of experience

with this ailment. Please let me know if you have any recommendations.

Thanks,

Phyllis in CA

> >

> > Hi, I'm new to group. My son was diagnosed with achalasia a

> > year ago at age 17. He had the Heller myotomy and wrap, which

> > opened up the LES. So getting food down is no longer a problem

> > for him. Before that, it got to where everything was coming up, and he lost

30 lbs (he has since gained it back). However, he still seems to be having

problems swallowing.

> > I have several questions for the group.

> > 1) I've searched the comments, and people talk of having to have the

procedure multiple times. It seems to me that trouble swallowing, since it's

likely neurological, would probably not go away just because the LES gets opened

up. But the " hole " is still there - was surgery needed again because it closed

back up? Or is it somehow related to swallowing difficulty, for which I don't

see an obvious connection.

> > 2) The surgeon said for most people, the trouble swallowing does go away. Is

it likely after a year for that to happen?

> > 3) Why would it go away just because the LES gets cut? The nerve problem

hasn't changed. Would that just be because the esophagus " retrains " itself

somehow?

> > 4) Is continued problems swallowing (but not getting the food down, and so

far not GERD) somehow dangerous? Should this be looked at? Given more time?

Ignored? Right now it's fairly minor but happens pretty much with every meal -

at the beginning of the meal, then seems to get better as he eats.

> > 5) I may try acupuncture (sure worked for my back, so I know it's not

voodoo). I did read several posts on that, but any thoughts on that would be

appreciated.

> >

> > Thanks for any input. Not having had the disease myself, my questions may be

naive, but I'd really like to understand this. My son is now technically an

adult, but at 18 he of course just wants to ignore this whole thing instead of

being proactive, and as his mom I think I'm going to have to help him manage

this for awhile.

> >

>

January 13, 2011

Phyllis,

I am so sorry that your son is dealing with this but his coping skills are

very common. I was 17 when I first has symptoms. I ignored them for 4 years (or

more) until I couldn't swallow water!

Thankfully I was diagnosed immediately (kind of rare) and had a dilatation.

Unfortunately I was not told that I would need further intervention and when my

swallowing got worse (2 years later), I coped for another 12 years!! Crazy, I

know but common with us Achalasians.

I recently had a Heller Myotomy with Dor fundo by Dr. Luketich at UPMC

(pittsburgh) and I live in Atlanta. I was given a list of all the top surgeons

by the friendly and caring people on this site!

Some of the names you will hear about are:

Dr. Rice (Cleveland CLinic)

Dr. Patti (U of Chicago)

Dr. Luketich (UPMC pittsburgh)

Dr. Pellegrini (Seattle)

And there are others as well. i can't specifically name any in the SFO area.

Maybe others can chime in. But if its the BEST care you are seeking, and I'm

sure you are then traveling may not be out of the

question.

All the best,

Cara

> > >

> > > Hi, I'm new to group. My son was diagnosed with achalasia a

> > > year ago at age 17. He had the Heller myotomy and wrap, which

> > > opened up the LES. So getting food down is no longer a problem

> > > for him. Before that, it got to where everything was coming up, and he

lost 30 lbs (he has since gained it back). However, he still seems to be having

problems swallowing.

> > > I have several questions for the group.

> > > 1) I've searched the comments, and people talk of having to have the

procedure multiple times. It seems to me that trouble swallowing, since it's

likely neurological, would probably not go away just because the LES gets opened

up. But the " hole " is still there - was surgery needed again because it closed

back up? Or is it somehow related to swallowing difficulty, for which I don't

see an obvious connection.

> > > 2) The surgeon said for most people, the trouble swallowing does go away.

Is it likely after a year for that to happen?

> > > 3) Why would it go away just because the LES gets cut? The nerve problem

hasn't changed. Would that just be because the esophagus " retrains " itself

somehow?

> > > 4) Is continued problems swallowing (but not getting the food down, and so

far not GERD) somehow dangerous? Should this be looked at? Given more time?

Ignored? Right now it's fairly minor but happens pretty much with every meal -

at the beginning of the meal, then seems to get better as he eats.

> > > 5) I may try acupuncture (sure worked for my back, so I know it's not

voodoo). I did read several posts on that, but any thoughts on that would be

appreciated.

> > >

> > > Thanks for any input. Not having had the disease myself, my questions may

be naive, but I'd really like to understand this. My son is now technically an

adult, but at 18 he of course just wants to ignore this whole thing instead of

being proactive, and as his mom I think I'm going to have to help him manage

this for awhile.

> > >

> >

>

January 14, 2011

Dear Phyllis,

I'm in Los Angeles area. I'd suggest UCLA or USC or Cedars here. In Northern

CA, there is Dr. Campos. Venable is in N CA and so is Sandi, and they

know most of those doctors.

There are a few other kids your son's age. Adam, is likely your son's age, and

I have his Dad's phone number... they are happy to talk, they just don't come to

the board often any more.

I think your son might find some great friends here, there are others around his

age, but they don't post here often. Not sure about your son, but after

creeping on my kids' facebook, they talk much differently to each other than

they would in a group like this.

It is frustrating to us to hear suggestions from non-achalasians about what we

should try to eat, we tune it out, because the suggestions that seem logical,

like pureeing, do not work the way you'd think. High fat things work and odd

things can work sometimes, like crispy baked nachos. Personally, pureeing

didn't help me at all. The problem isn't chewing, it is getting the les to

open.

If your son is having trouble now, he needs to treat it quickly, often the wrap

is just too tight and a dialation opens it back up and he is back on track. If

he just " lives " with it there are a lot of stories here that the esophagus

stretches, although eating may be easier, and then with a stretched esophagus,

treatment is more difficult.

Not sure if checks in much here anymore, but she has had every

treatment, and has kids that age, so she might be very helpful to you and your

son, the same with Sandi. They will likely find you soon. They read here off

and on. Or let me know and I'll email them to find you.

There are some other teens here, but with what little I know about teens, even

though I have two of them, they would likely talk better through skype or AIM or

facebook chat. The teens themselves don't check in here much. If you think

your son is open to it, Send me his contact info, and I'll forward the info to

Chavez, Adam's Dad.

Sandy in So Cal.

> > >

> > > Hi, I'm new to group. My son was diagnosed with achalasia a

> > > year ago at age 17. He had the Heller myotomy and wrap, which

> > > opened up the LES. So getting food down is no longer a problem

> > > for him. Before that, it got to where everything was coming up, and he

lost 30 lbs (he has since gained it back). However, he still seems to be having

problems swallowing.

> > > I have several questions for the group.

> > > 1) I've searched the comments, and people talk of having to have the

procedure multiple times. It seems to me that trouble swallowing, since it's

likely neurological, would probably not go away just because the LES gets opened

up. But the " hole " is still there - was surgery needed again because it closed

back up? Or is it somehow related to swallowing difficulty, for which I don't

see an obvious connection.

> > > 2) The surgeon said for most people, the trouble swallowing does go away.

Is it likely after a year for that to happen?

> > > 3) Why would it go away just because the LES gets cut? The nerve problem

hasn't changed. Would that just be because the esophagus " retrains " itself

somehow?

> > > 4) Is continued problems swallowing (but not getting the food down, and so

far not GERD) somehow dangerous? Should this be looked at? Given more time?

Ignored? Right now it's fairly minor but happens pretty much with every meal -

at the beginning of the meal, then seems to get better as he eats.

> > > 5) I may try acupuncture (sure worked for my back, so I know it's not

voodoo). I did read several posts on that, but any thoughts on that would be

appreciated.

> > >

> > > Thanks for any input. Not having had the disease myself, my questions may

be naive, but I'd really like to understand this. My son is now technically an

adult, but at 18 he of course just wants to ignore this whole thing instead of

being proactive, and as his mom I think I'm going to have to help him manage

this for awhile.

> > >

> >

>

January 14, 2011

phidgeit wrote:

> 1)...It seems to me that trouble swallowing, since it's likely neurological,

would probably not go away just because the LES gets opened up. ...

The reasons for resurgery depend on how soon after the surgery the

problems start. If the problems are right away then the myotomy may not

have been complete, or in some cases (not " often " ) the wrap may be too

tight, or more time is needed for healing, or there are problems that

the myotomy can't fix. If the myotomy was a success and then failed it

could be because the condition has progressed (dilated or bent

esophagus, spasms, or less peristalsis), or the myotomy may have grown

back or scarred over, or acid reflux may have caused scarring of the

inside of the esophagus.

> 2) The surgeon said for most people, the trouble swallowing does go away. Is

it likely after a year for that to happen?

He may have been referring to people that need time to heal so

inflammation and swelling go away. I would be looking for help, or

another opinion if I was waiting a year to heal.

> 3) Why would it go away just because the LES gets cut?

There are two main sources of pressure pushing food through the LES and

into the stomach, muscles and gravity. The LES is normally too tight for

gravity to do it alone but if you cut the LES so the pressure there is

reduced you can get gravity to move most of the food through. A drink on

top of the food helps.

> 4) Is continued problems swallowing (but not getting the food down, and so far

not GERD) somehow dangerous?

Not very, but yes it can be. The main danger is aspiration pneumonia

from getting food into the lungs. If he ever has pneumonia be sure the

doctors treating him know that he has achalasia and that he should be

check for aspiration pneumonia and not just assume it is a typical

pneumonia. Food rotting in the esophagus can cause irritation,

inflammation and infections. There is some concern that it may increase

the risk of esophageal cancer.

When we have the surgery we hope to be like new, even if the achalasia

in still there, but often the best we can get is just better. Some

people end up better than others. There are variations in what the

muscles do in achalasia. For some spasms above the LES will still cause

trouble swallowing even if the LES is no longer a problem. We don't all

scar or heal the same.

If it were me, I would want to know if there was a fixable problem

remaining. Maybe there is, maybe not.

> 5) ...(sure worked for my back, so I know it's not voodoo). ...

If you had tried voodoo and it worked would it still be voodoo? ;-)

notan

January 14, 2011

wrote:

> ...Achalasia means that the esophagus and LES muscles are no longer working,

they

> are dead muscle, the surgery simply cuts and fixes the plumbing...

Careful there.

Achalasia is not the same in everyone, and saying the muscles are dead

could be misleading. Although you will see people refer to them as dead

in this support group it is not a good description. For some people

their muscles in a dilated esophagus may be very atrophied, somewhat

like dead. For others the muscles may be dysfunctional but very active

and strong. A " dead muscle " is not the image of a muscle that can spasm,

or force food up instead of down. Often, but not always, the LES muscles

are overly strong and stay constricted too much. Sometimes, even after a

myotomy, the muscles above the LES spasm with great force and block food

or even move it backward.

We all have dysfunction esophageal muscles. For some than means the

muscles that produce peristalsis have little or no activity, but for

others it means they have dysfunctional, possibly strong, activity but

not peristalsis.

notan

January 14, 2011

Yours is a much better answer, sorry if I simplified incorrectly!Â

Julee So calif.

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Fri, January 14, 2011 2:42:08 PM

Subject: Re: Continued problems swallowing a year after surgery

Â

wrote:

> ...Achalasia means that the esophagus and LES muscles are no longer working,

>they