Re: Achalasia without eating problems

[Guest guest]

Hello " New Achalasia Sufferer " (to be replaced with your real first name in the

future),

 

The very short answer to your question is the very dubious expression " Just

wait..., "   meaning that you have such early symptoms of A, its as if you don't

have A. Wait until this starts developing some more.  Some of us, develop

symptoms slowly, over decades, while others get it full blown pretty quickly.

Right now, you are so early with symptoms that it might be impossible to predict

the timeline progress of this disease.

 

The long answer ito the question " :  " Ok, I have achalasia, what do I do about

it? " We A people on the Board, to help answer your question would like to know

your age, gender, possible other health history matters, doctor and city

located.

 

My feeling is that since Achalasia is a progressive disorder, that your

symptoms, in time, will worsen, as will the condition of your esophagus. There

are some people on this site who are coping with their achalasia in different

ways, other than having a HM or dilatation. Some people have done very well

having the Heller Myotomy upon being diagnosed, when their esophagus, while

lacking peristalsys, was still structurally sound, and may never have to turn

back again.  While not cured, they eat relatively normally.

 

You need to ask more questions and gather more facts, in order to decide just

what to do.  You took a great first step coming here.

 

________________________________

From: lishanamh <lishanamh@...>

achalasia

Sent: Thursday, March 22, 2012 3:45 PM

Subject: Achalasia without eating problems

 

I have recently been diagnosed with achalasia, after barium swallow, EGD,and

manometry. However, my doctor is very puzzled because I do not have any eating

problems. My only symptom is that I regularly have nocturnal regurgitation which

wakes me up throwing up undigested food. My doctor (who is experienced in

achalasia) tells me he has never come across a case like this and although he

recommends treatment either by surgery or dilation, he thinks the choice to go

ahead with this is not straightforward as I have no problem eating, and with

raising the head of my bed, sleeping on a lot of pillows and not eating late, I

have reduced the nocturnal regurgitation to occurring only once or twice every

few weeks (though the choking sensation is still most unpleasant). So I am

wondering if anyone else on this list has had achalasia whose only real symptom

is nocturnal regurgitation, and if so what treatment has been recommended.

[Guest guest]

Welcome!  Glad you found your way to this group.  How long have you been

having the regurgitation problems?  As stated, this disorder affects

each person very differently and can happen in stages.  Because you had all the

right tests, when they did your barium, did they notice that the liquid was

going down slowly or not clearing right away??  These are things that I would

want to know if I were you.  With your manometry what did they say??? 

 

The most important thing for us with Achalasia is to keep on eye on the size of

our esophagus, because if food is sitting in it and not clearing then it can

stretch out over time for some people.   I had spent years going to doctors

that would not even comprehend my situation, so I'm glad that you found one that

knows something about it.  I had to educate my doctors to finally get the

proper tests done and get help.  Armed with knowledge from this group, I forced

my doctor to get answers and finally researched a qualified surgeon who did a HM

on me in 2010.  My surgery was successful and I no longer have any regurg or

problems and eat fairly normal all the time now.  I can sleep on one pillow

again thankfully....I slept propped up for 22 years! 

 

With achalasia the esophagus becomes unable to push food down, the LES often

doesn't open as it should, that is why food and saliva regurgs back up. 

 

Keep us posted.

 

Julee from Oregon

________________________________

From: lishanamh <lishanamh@...>

achalasia

Sent: Thursday, March 22, 2012 12:45 PM

Subject: Achalasia without eating problems

 

I have recently been diagnosed with achalasia, after barium swallow, EGD,and

manometry. However, my doctor is very puzzled because I do not have any eating

problems. My only symptom is that I regularly have nocturnal regurgitation which

wakes me up throwing up undigested food. My doctor (who is experienced in

achalasia) tells me he has never come across a case like this and although he

recommends treatment either by surgery or dilation, he thinks the choice to go

ahead with this is not straightforward as I have no problem eating, and with

raising the head of my bed, sleeping on a lot of pillows and not eating late, I

have reduced the nocturnal regurgitation to occurring only once or twice every

few weeks (though the choking sensation is still most unpleasant). So I am

wondering if anyone else on this list has had achalasia whose only real symptom

is nocturnal regurgitation, and if so what treatment has been recommended.

[Guest guest]

In 2005, I was *only* regurging at night. Every two or three months. It was

clear it wasn't reflux, and I wasn't too worried. Mentioned it to my doc, and

neither was she. The next year, it was every two or three weeks. Ditto. In

2007, every two or three months I'd have difficulty swallowing, and some

regurging. The next year, the regurging was pretty much daily, but not all that

hard to live with, and not that much. The regurging night and day got worse.

The swallowing/stuck feeling got worse. I was about ready to go ahead and see a

GI, when all the hurty difficulty swallowing just stopped. I continued to

regurge, but heck, I was used to it. As far as I was concerned, I was better.

(Whatever the heck was going on.) I did check out the 'nets, and decided, on my

own, that I simply had a dysmotile esophagus, ruled out (oh wise one I was)

Achalasia.

Last June, the gas pedal got stuck. I started losing weight. A lot of weight,

and fast. End of September, I ended up in ER, weighing 120 pounds, down 60 from

June. . . . dehydrated, and electrolytes waaaaaaaaaaay out of balance. Spent

five days in the cardiac unit. But I got my diagnosis. Looking at the barium

swallow, there was NO mistaking that bird's beak! Alas, by that time, my LES

was in permanent spasm, and only (on a good day) about 5% of what I was

eating/drinking was getting through. Switched to a totally puree diet, held on

for three more months, and got my Heller on December 27. By then I'd lost about

half my hair. Lost most of the other half in the following month. I now have

very thick, but very short curly hair. Associated with the starvation is

peripheral nerve damage and pedal edema. The edema is *slowly* being resolved.

The nerve damage no so much.

So. I'd say -- Tell your doc he just caught it early, and lucky you!

As said: it progresses. Period. Slowly or quickly, and sometimes in

turn. But progress it does. There are minor things to do to " manage " it, but

it's going to progress.

If it were ME, and I had good insurance NOW. I'd go ahead and get the Heller.

Good luck, and bon courage.

in WV

>

> I have recently been diagnosed with achalasia, after barium swallow, EGD,and

manometry. However, my doctor is very puzzled because I do not have any eating

problems. My only symptom is that I regularly have nocturnal regurgitation which

wakes me up throwing up undigested food. My doctor (who is experienced in

achalasia) tells me he has never come across a case like this and although he

recommends treatment either by surgery or dilation, he thinks the choice to go

ahead with this is not straightforward as I have no problem eating, and with

raising the head of my bed, sleeping on a lot of pillows and not eating late, I

have reduced the nocturnal regurgitation to occurring only once or twice every

few weeks (though the choking sensation is still most unpleasant). So I am

wondering if anyone else on this list has had achalasia whose only real symptom

is nocturnal regurgitation, and if so what treatment has been recommended.

>

[Guest guest]

" Lishanamh, " (until we know your name)

 

Just to give you some perspective, most people do not get diagnosed as quickly

as you did, and that's a great thing in your favor.

 

When my achalasia first started, it was the night I lay down to rest after a

dinner and all of a sudden my dinner came up thru my nose! After that, there

were no other symptoms for a couple of months. I ate fine, slept well, did not

think much of that freaky occurence. Within a couple of months though, symptoms

intensified, where I no longer could eat, the only way I could sleep was

standing against a wall, and the weight began melting off (not a good thing). It

took nearly 6 months from the onset to get properly diagnosed (circa 1982).

 

No knock on your doc, but most achalasia patients don't necessarily end up

seeing the right doctor right away. Somehow you did, a huge plus!

 

I had repeated dilatations performed with the hope that it would succeed long

term, and I would not need surgery (only open back then). That was from age

33-42. Generally speaking, if you are young and healthy, having the surgery is

the better choice, and regardless of the temptation to wait and see if things

will get worse, your smarter choice is usually to have the surgery done, then

move on with your life (unfortunately though, its not always that simple).

 

After doing more research you will come to understand that this is not a " wait

and see " disorder. If you're going to be " around " another 40-50 years, I am sure

you're interested in keeping your esophagus right where it is. If you are in

your 70's or 80's (which it does not sound like), you might have a different

perspective where dilatations are sometimes more successful (meaning they last

longer), or you might have a better chance maintaining your health by what what

our resident octogenarian (Ray) does. That's why knowing your age is important

in advising you.  I'm sure by now you have read that having a very experienced

surgeon is a far superior choice to a novice.  

 

The other people who have already written back to you have given excellent

advice. Research this, get more opinions, and remember " Doing nothing is not an

option. "

 

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Thursday, March 22, 2012 5:18 PM

Subject: Re: Achalasia without eating problems

 

In 2005, I was *only* regurging at night. Every two or three months. It was

clear it wasn't reflux, and I wasn't too worried. Mentioned it to my doc, and

neither was she. The next year, it was every two or three weeks. Ditto. In 2007,

every two or three months I'd have difficulty swallowing, and some regurging.

The next year, the regurging was pretty much daily, but not all that hard to

live with, and not that much. The regurging night and day got worse. The

swallowing/stuck feeling got worse. I was about ready to go ahead and see a GI,

when all the hurty difficulty swallowing just stopped. I continued to regurge,

but heck, I was used to it. As far as I was concerned, I was better. (Whatever

the heck was going on.) I did check out the 'nets, and decided, on my own, that

I simply had a dysmotile esophagus, ruled out (oh wise one I was) Achalasia.

Last June, the gas pedal got stuck. I started losing weight. A lot of weight,

and fast. End of September, I ended up in ER, weighing 120 pounds, down 60 from

June. . . . dehydrated, and electrolytes waaaaaaaaaaay out of balance. Spent

five days in the cardiac unit. But I got my diagnosis. Looking at the barium

swallow, there was NO mistaking that bird's beak! Alas, by that time, my LES was

in permanent spasm, and only (on a good day) about 5% of what I was

eating/drinking was getting through. Switched to a totally puree diet, held on

for three more months, and got my Heller on December 27. By then I'd lost about

half my hair. Lost most of the other half in the following month. I now have

very thick, but very short curly hair. Associated with the starvation is

peripheral nerve damage and pedal edema. The edema is *slowly* being resolved.

The nerve damage no so much.

So. I'd say -- Tell your doc he just caught it early, and lucky you!

As said: it progresses. Period. Slowly or quickly, and sometimes in

turn. But progress it does. There are minor things to do to " manage " it, but

it's going to progress.

If it were ME, and I had good insurance NOW. I'd go ahead and get the Heller.

Good luck, and bon courage.

in WV

>

> I have recently been diagnosed with achalasia, after barium swallow, EGD,and

manometry. However, my doctor is very puzzled because I do not have any eating

problems. My only symptom is that I regularly have nocturnal regurgitation which

wakes me up throwing up undigested food. My doctor (who is experienced in

achalasia) tells me he has never come across a case like this and although he

recommends treatment either by surgery or dilation, he thinks the choice to go

ahead with this is not straightforward as I have no problem eating, and with

raising the head of my bed, sleeping on a lot of pillows and not eating late, I

have reduced the nocturnal regurgitation to occurring only once or twice every

few weeks (though the choking sensation is still most unpleasant). So I am

wondering if anyone else on this list has had achalasia whose only real symptom

is nocturnal regurgitation, and if so what treatment has been recommended.

>

[Guest guest]

>because I do not have any eating problems

You do have eating problems that is how it starts, like throwing up at night.

That is how mine happened 5 years ago and I lost 35 lbs in a few months.

Your doctor is not very experienced in how Achalasia starts and continues, but

he got it early. I went through four GI assholes before I got a diagnosis. I had

a stroke during an angiogram and a heart bypass 15 years ago, so have stayed

away from doctors. No more operations for me!

Since I was retired, decided to study it and found this site. helped me

when I was really down several years ago. I have had no operations or dilations

so I found in my case how to " manage " A. And it can be managed if you have time,

want to experiment, not working etc!

I have posted many times what I have found that works for me. Now I am very

active painting the outside of the house, feeling better each day, heart seems

great, no more indigestion and spasms. I eat the same thing every day, sort of

boring except when we go out.

You can search Ray, Rayme, butter, magnesium, CO2, if interested.

I have recently joined facebook, like and many others on this site, not

experienced in just how it works. This site is great.

Ray CA OC 81 old as dirt.

>

> I have recently been diagnosed with achalasia, after barium swallow, EGD,and

manometry. However, my doctor is very puzzled because I do not have any eating

problems. My only symptom is that I regularly have nocturnal regurgitation which

wakes me up throwing up undigested food. My doctor (who is experienced in

achalasia) tells me he has never come across a case like this and although he

recommends treatment either by surgery or dilation, he thinks the choice to go

ahead with this is not straightforward as I have no problem eating, and with

raising the head of my bed, sleeping on a lot of pillows and not eating late, I

have reduced the nocturnal regurgitation to occurring only once or twice every

few weeks (though the choking sensation is still most unpleasant). So I am

wondering if anyone else on this list has had achalasia whose only real symptom

is nocturnal regurgitation, and if so what treatment has been recommended.

>

[Guest guest]

This was my main symptom as well. I also had no other syptoms initially,

but then all of a sudden I started throwing up food as well and everything

started sticking. It seemed to get worse very quickly. I had a heller

myotomy in February. The problem seems to be not the fact that everything

sticks, but that every time you eat you stretch the oesophagus. When I had

the HM my oesophagus was paper thin and tore during surgery. So please be

careful even though you don't feel as though anything is wrong.

(Melbourne)

[Guest guest]

Sorry I think I may have just sent an empty message to the list. I just wanted

to say how brilliant it was to get such quick replies. I was asked for some more

detail so here it is.

I started having nocturnal regurgitation just under two years ago. I went to my

GP who tried tablets to reduce stomach acid in case I had reflux, but when these

did not work after a while she referred me to the hospital for a barium swallow.

When I had this, I was told that it looked like I had achalasia, because the

barium was going into my stomach very slowly and there was a 'bird's beak'

appearance. I was then referred to a specialist who did an endoscopy, which

found food in my esophagus (though I hadn't eaten for many hours) and slight

widening of the esophagus. I was then sent to another hospital to have a

manometry, which confirmed achalasia. I am in the UK so there is no issue about

insurance as I can get treatment free on the NHS. The specialist has suggested

an HM (which he doesn't do himself, but will refer me to another specialist who

does), a dilation (which he would do - he tells me he has done over 100 of these

for achalasia patients in the US and UK, I suppose this is quite a lot for a

rare illness, and has never had problems with rupturing the esophagus, but that

is is a definite possibility that this can happen),or wait and see while keeping

a close eye on what is happening to my esophagus. He also mentioned botox but

said he thought it was not advisable.

The nocturnal regurgitation does not seem to be getting any worse since it

started, and as I said food does not 'stick' perceptibly and I do not have any

regurgitation during the day. Rather than losing weight I appear to be gaining

it. One thing I wonder is whether if I wait better treatments might become

available, and also I worry that if I have treatment it might make the situation

worse.

I'm in my late 50s and otherwise healthy apart from taking tablets for high

blood pressure.

Alison

[Guest guest]

Hi lishanamh,

I opted for the HM as soon as I was diagnosed (after digging through hundreds of

posts here and considerable research on my own), and have never regretted that

choice. I had my HM/Dor in May, 2008.

I don't have the luxury of being able to spend a lot of time on this board, but

I do try to read most of the posts. Between the stories of the members, and the

actual medical research that exists (there are links to most of that in the

posts here), you should be able to make an educated decision. This board was a

Godsend to me back when I had no clue as to what was going on.

Best of Luck to You!

Lee in Santa Barbara

>

>

> Sorry I think I may have just sent an empty message to the list. I just wanted

to say how brilliant it was to get such quick replies. I was asked for some more

detail so here it is.

> I started having nocturnal regurgitation just under two years ago. I went to

my GP who tried tablets to reduce stomach acid in case I had reflux, but when

these did not work after a while she referred me to the hospital for a barium

swallow. When I had this, I was told that it looked like I had achalasia,

because the barium was going into my stomach very slowly and there was a 'bird's

beak' appearance. I was then referred to a specialist who did an endoscopy,

which found food in my esophagus (though I hadn't eaten for many hours) and

slight widening of the esophagus. I was then sent to another hospital to have a

manometry, which confirmed achalasia. I am in the UK so there is no issue about

insurance as I can get treatment free on the NHS. The specialist has suggested

an HM (which he doesn't do himself, but will refer me to another specialist who

does), a dilation (which he would do - he tells me he has done over 100 of these

for achalasia patients in the US and UK, I suppose this is quite a lot for a

rare illness, and has never had problems with rupturing the esophagus, but that

is is a definite possibility that this can happen),or wait and see while keeping

a close eye on what is happening to my esophagus. He also mentioned botox but

said he thought it was not advisable.

> The nocturnal regurgitation does not seem to be getting any worse since it

started, and as I said food does not 'stick' perceptibly and I do not have any

regurgitation during the day. Rather than losing weight I appear to be gaining

it. One thing I wonder is whether if I wait better treatments might become

available, and also I worry that if I have treatment it might make the situation

worse.

> I'm in my late 50s and otherwise healthy apart from taking tablets for high

blood pressure.

> Alison

>