Re: New to Achalasia and Group.... some questions

[Guest guest]

Glen, welcome to the group. First you need to understand that eventhough this disease effects us all about the same the disease progresses differently in each of us. I have ran the gammit of balloon dilations, botox injections and even two surgeries now. This has been over a ten year span. My advice is to find yourself a doctor that specializes in this disease and go from there. I would also recommend that surgery be one of your first options. This disease is a progressive one so just by doing a ballon dolation that might give you some relief but the question is for how long will that be. In each of us it has been different. There is no cure for "A" as of yet and it seems that the myotomy is the best option for us at this point. As for the beta blockers I cannot really comment on them cause I have not had to take them. I do know they are used for chest pain due to heart issues but our chest pain is not from the heart. I hope this helps you out a little. Feel free to ask any more questions and welcome to the group.

in Suffolk

[Guest guest]

Dear Glen,Welcome to our group. Your situation is very typical of a newcomer. The short answers to your questions..You are probably already doing damage to your esophagus and it is stretching, that is why you can drink water and that is what is pushing the food down, during that process it is stretching. Usually, not always, everyone is different, the more severe the symptoms, including not able to drink fluids, the earlier you are in the achalasia disease and the more likely treatment will be successful.Althernative methods.....many have tried, none seem to have been effective, including drugs, beta blockers etc. Relaxation techniques seem to help handle the emotional processThe most recommended treatment is surgery from absolutely the best surgeon you can find, that is the secret. Dialation seems short-termed for most, although there are some success stories. Botox is usually not recommended unless your condition can't tolerate surgery.Give us your location and chances are we can recommend a surgeon and gi that are experienced with achalasia. That is the key to successful long term treatment.I think all of us would recommend treatment to prevent further damage as soon as you can schedule it. What you describe as life style adjustments are likely damaging your chances for successful treatment.You likely aren't having heartburn but the food stuck in your esophagus is fermenting. Many of us have infections and irritated esophagus, no amount of antireflux meds help.After some types of surgery you may then have acid reflux and need those medications, but chances are slim you have it now.Peggy will chime in soon. She did the water tricks for quite a while. This website has almost all the medical articles summarized and up to date. Type in achalasia etc. and then the major teaching hospitals in your area and myotomy etc and you will be more educated in an hour than most doctors about achalasia. Be very careful about the dates of the articles, trends have changed and you could be misled about things such as botox for example.http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search & DB=pubmedI meant to give a short answer... so here is it, unless you have other medical conditions. Schedule surgery with the best surgeon ASAP, after consulting with a well-versed gi who will look at your overall medical condition. Perhaps there is an alternative, but frankly, we haven't seen much success with alternatives.Sandy in So Cal.>> Greetings,> > I have some questions about Achalasia that some of you that have had > it for many years may want to answer.> > First, my story:> > As early as 1995 (39 at the time) I would get serious hick-ups with > my first bites of food, but one drink would solve it. I'm sure this > was the early onset of this disease for me.> > Didn't notice too much progression until 3 years ago when I stayed at > my inlaws home on a very flat foam bed. I had "acid reflux" symptoms > and ended up spending the nights in a recliner. I realize now that > our regular mattress at home had enough give in the middle.... just > enough to allow my upper torso to be elevated a bit.> > Soon after that I ended up loosing 20 plus pounds over 6 months > without even trying because I found it difficult to keep my food > down. I then realized that drinking copious amounts of water with my > meal helped tremendously and I've since gained some of that back. > > Last year I started seeing a doctor about the problem and at first, > of course, it was all GERD and if you just take these expensive > pills, within a week "you'll experience dramatic relief." I did not.> > Finally a year ago going into early this year, I had all the tests > done. The doctor/technician who did the barium test, when it is all > done, told me.... "I'm not your doctor, and he'll have to see the > results, but there is little doubt to me that you have Achalasia." > Say what? How do you spell that. Went home and did research and > realized how well my live xray showed off my "birds beak" LES.> > The doctor gave me Cardizem to help, but I found the side effects of > constipation not worth what little relief I gained (if any).> > I pretty much handle the disease right now by doing a couple of > things.> 1. I drink lots of water with meals that seems to help both move > things through, and I think (just a guess) that the action at my > throat/top of my esophagus helps with the movement at the bottom. > 2. I eat smaller meals. Of course, when I drink 32 oz. plus of > water, I can't wolf things down like I used to. Two good slices of > pizza, one large sandwich. My wife served me a sandwich AND soup the > other day and it was like I just got away from the Thanksgiving > table. Once in a while, for one reason or another, I can really put > it away.> 3. I used to LOVE a bite to eat just before going to bed. No more. > I still may have something 90 minutes before going to bed, but it > will be something that is dissolvable in water (i.e. cereal). > Anything else and I have problems all night long.> 4. I sleep with both my bed elevated 4" at one end (the whole bed) > and then add to that an incline pillow. I find otherwise, even if I > had nothing to eat all day (I fasted once), even the saliva ends up > coming up. I sooooo miss sleeping on my side and stomach. But given > the treatments that seem to led toward GERD, it is something I am > willing to live with the rest of my life.> 5. Walking after meals. I tend to get up now and walk for 30 minutes > or so after a meal, at least the evening meal. Or make sure I am on > my feet and moving. It just seems to help move things through.> > I have, about once or twice a month, a mroning long bout > of "heartburn" most likely caused by Lactic Acid build up.> > OK, QUESTION TIME:> 1. Is there any benefit of doing the "expanding the LES" thing as > long as my symptoms aren't worse? Would doing so keep my esophagus > from dialting above the LES? Or should I wait until I just can't > stand it anymore? Right now I eat well and sleep well with the > lifestyle changes I have made.> > 2. What has people's experience been with the Beta-blockers (or I > guess calcium blocker) medications? Worth the side effects? I'm not > sure I gave mine a fair shake. I understand it may take several > weeks to notice any benefit.> > 3. What kind of time-line am I looking at for the progression of the > disease?> > 4. Has any one done any long-term fasting (say week or longer) to see > if this helps "reset" anything (kinda like a computer reboot). Or, > as I might suspect, does the lack of food regularly going through the > LES tend to make it even tighter?> > 5. 2% to 7% of those with Achalasia get cancer of the esophagus. yet > one report says this doesn't warrant a regular inspection like for > other cancers. So what is a person supposed to pay attention to know > the early onset of this?> > 6. The heartburn sensations that I get about twice a month.... any > rhyme or reason to them... or should I just be happy that it is only > affecting me twice a month or so? (but when it hits hard, it hits > HARD and lasts for several hours... yuck).> > 7. And with modern technology, why doesn't someone come up with an > artificial valve for the LES that lets stuff mostly pass just one > way? I hate the thought of going from not being able to move my food > into my stomach to my stomach always wantint to push things back.> > Well, thanks for any info you can share on these things.> > Glen>

[Guest guest]

Glen,

I agree with that you find an Achalasia specialist and go from

there. If you check out the files section of this group, there is a

doctor's reference document. In the midwest US, I highly recommend

traveling to The Cleveland Clinic [one of the best surgeons = Dr.

Rice]. It is good to check out all your options before you choose a

route, even though many sufferers might say surgery is the only way to

go, but long-term esophogial health has to be a priority.

I have been dealing with this disease since 1980, mostly on my own,

until this year when I found this wonderful, supportive group. Because

I didn't know to question my treatment options and I was unable to see

the damage being done to my 'E' while I made most of those " lifestyle

adjustments " you mentioned, my condition is much worse now than if I

had dealt with it earlier.

I had my first [and I hope only] myotomy in September. In the last 5

weeks, I have been able to give up most of my " lifestyle ajustments " ,

which is amazing! I can sleep on my left side & stomach, eat in bed

IMMEDIATELY before sleeping, and only need one pillow with ZERO

additional incline. I haven't had one single night since the surgery

with any coughing or regurigitation issues. And last week I had onion

rings for the first time in years without any issues!

Good luck with your pursuit of a healthy 'E' and keep asking this

terrific group your questions. They are truly a helpful bunch.

in Michigan

[Guest guest]

Glen -- I'm swamped today, so I'll do my best to be brief. People here know that it's RARE that "Pepto-Pink-Debbi" is brief in a reply!OK, QUESTION TIME:1. Is there any benefit of doing the "expanding the LES" thing as long as my symptoms aren't worse? Would doing so keep my esophagus from dialting above the LES? Or should I wait until I just can't stand it anymore? Right now I eat well and sleep well with the lifestyle changes I have made.

The procedure is known as "dilation" or "dilatation" (both terms are considered correct, it's more a matter of personal preference). A few years ago, I was preaching "do surgery first -- it's the most permanent" but I have since learned that it's really a coin-toss. It has been 7+ years since my second dilation, and I'm doing "okay" (not perfect, but not hurling in public, either). My first dilation wasn't very successful, but the second one a couple years later helped tremendously. However, there are people here who have had 2+ dilations w/ no benefit at all. There are also people in the group who had surgery 10-20+ years ago and no further treatment since. And there are people who have to go in for a dilation within a year of their surgery, or who have to have a second surgery. So it's really a "whatever happens to work for you" kind of thing. My best recommendation is to find a doctor WHO IS EXPERIENCED WITH ACHALASIA IN PARTICULAR, not just GI matters or thoracic surgery in general.

Where do you live? We can probably recommend someone in your region if we know where you live.

2. What has people's experience been with the Beta-blockers (or I guess calcium blocker) medications? Worth the side effects? I'm not sure I gave mine a fair shake. I understand it may take several weeks to notice any benefit.

Depends on what you're trying to use them for. Beta blockers, calcium channel blockers, and nitro are generally only helpful on a temporary basis. When I was to the point of NOTHING going down, I could get some food to go thru if I took a CCB med 30-60 minutes before eating, but within 2 hours of taking the pill I had a "boomerang" headache that would put me in bed for 6 hours. Yes, it worked.... but it wasn't a viable long-term treatment for me. I do still use CCB meds for when I'm hit with a really bad "spasm" pain (aka NCCP -- Non Cardiac Chest Pain) -- I can sleep off the headache, but there is no way to sleep off a NCCP!3. What kind of time-line am I looking at for the progression of the disease?

No way to know. Some people go ten years with only minor symptoms, others are unable to swallow their own spit in less than six months' time. Some people function for quite some time (decades) without any actual treatment, but they're definitely the minority.

Personally, I had intermittent symptoms starting in 1993 and in 1996 I was in the "can't swallow my own saliva" mode.

4. Has any one done any long-term fasting (say week or longer) to see if this helps "reset" anything (kinda like a computer reboot). Or, as I might suspect, does the lack of food regularly going through the LES tend to make it even tighter?

The nerves are actually dead, not just "confused". And even "fasting" isn't going to do any good unless you're going to suction your sinuses and saliva all night long... your sinuses alone produce a quart of drainage fluid going down your throat every day.

5. 2% to 7% of those with Achalasia get cancer of the esophagus. yet one report says this doesn't warrant a regular inspection like for other cancers. So what is a person supposed to pay attention to know the early onset of this?

I would challenge the 2%-7% cancer rate. We have several hundred members here, and the only case of esophageal cancer that I know of was someone who didn't actually have achalasia in the first place -- his esophageal cancer was the cause of his dysphagia, resulting in "pseudoachalasia".

I would be more inclined to believe that achalasia patients have a 2%-7% increased CHANCE of getting esophageal cancer, when compared to the "normal" population. Since esophageal cancer is pretty rare to begin with in the normal population, a 2% increase in the chance of developing cancer is pretty negligible. I'd be much more concerned about having colon cancer, lung cancer, or heart disease.

6. The heartburn sensations that I get about twice a month.... any rhyme or reason to them... or should I just be happy that it is only affecting me twice a month or so? (but when it hits hard, it hits HARD and lasts for several hours... yuck).

Welcome to the joys of NCCP. I'll dig up my "spasm post" on the subject of how to cope with them, rather than type it all out again.

Everyone has different triggers (or no triggers at all). If you notice a correlation with something (food or activity), then discontinue the trigger. (In my case, sneezing, bending over, extreme stress, or having an empty stomach will make me more likely to have a NNCP -- not much I can do about those things!) But in most cases, they just happen whenever they feel like it.

7. And with modern technology, why doesn't someone come up with an artificial valve for the LES that lets stuff mostly pass just one way? I hate the thought of going from not being able to move my food into my stomach to my stomach always wantint to push things back.

There's not enough money in it. The medical community is working on a "pacemaker" device to force the muscles to contract and relax on command, but so far it's still just in development.

Debbi in Michigan

[Guest guest]

Welcome, Glen.

Glen wrote:

I have some questions about Achalasia that some of you that have had it for many years may want to answer.

I will give a quick response to some and leave some for others.

The doctor gave me Cardizem to help, but I found the side effects of constipation not worth what little relief I gained (if any).

I was on the generic version of this and it did give a couple of

years of better symptoms.

OK, QUESTION TIME:

1. Is there any benefit of doing the "expanding the LES" thing as long as my symptoms aren't worse?

Opinions very on this. My view is that there is no right answer, no

one size fits all kind of thing. Learn as much as you can about the

options, then find a doctor you trust and discuss what is best for you.

Best for you may not be best for others, and there are no guaranties.

Whatever way you go, whatever the result, don't look back, just

remember you did your best at the time.

Would doing so keep my esophagus from dialting above the LES?

That depends on how well it works for you.

Or should I wait until I just can't stand it anymore? Right now I eat well and sleep well with the lifestyle changes I have made.

I have waited over 30 years to do something about it. I not saying

that is a good idea for you though. Maybe, maybe not.

2. What has people's experience been with the Beta-blockers (or I guess calcium blocker) medications? Worth the side effects?

The calcium channel blocker made a subtle difference in my symptoms

which made them much easier to live with. So, for me even though it did

only a little, that little bit made a big difference for me. However,

after a couple years things are back to where they were. I would guess

that without the CCB things would be even worse now as otherwise things

have over the years continued to get worse, with some ups and downs

along the way.

I understand it may take several weeks to notice any benefit.

It can and for the side effects to quit.

3. What kind of time-line am I looking at for the progression of the disease?

Some people go from having no symptoms to not being able eat or

drink almost over night. Others, like me, get worse very slowly over

many years.

5. 2% to 7% of those with Achalasia get cancer of the esophagus. yet one report says this doesn't warrant a regular inspection like for other cancers.

Actually, especially at the higher percentages, some of the people

in those numbers probably had cancer before the achalasia was found.

The achalasia can be secondary to the cancer but the cancer is missed.

If you factor out this kind of situation the numbers drop. You have had

achalasia long enough that you would probably already know if you had

it. The risk, if any, with primary achalasia may be very low. Better

studies are needed.

7. And with modern technology, why doesn't someone come up with an artificial valve for the LES that lets stuff mostly pass just one way?

It is called a partial wrap and is made from your stomach, and done

when you have a myotomy. Not the answer you wanted, but there it is.

Consider the myotomy and wrap to be a form of plastic surgery, (which

it is), in which the junction of the esophagus to the stomach is

remade.

notan

[Guest guest]

Glen,

Welcome to the group! I just recently joined myself after going through the research, etc. after being diagnosed with Achalasia earlier this year. My symptoms seem very familiar to yours. Losing weight, nightime coughing, diagnosed first with GERD! After being diagnosed, I was given procardia (a calcium channel blocker) and experienced immediate relief in eating. I was to take it 1/2 hour prior to meals and had about a 1 hour window where I could eat. However the side effects were headache, lower blood pressure (mine was low enough!) and dizziness, but were worth eating for!

I had the heller myotomy with parital wrap on October 18th, well worth it, I am eating now and feeling so much better and not having any coughing. No more extra symptoms.

Follow everyone elses' advise, find the expert in your area. Post where you are from and we will all help, we all have stories to tell!

Good luck!

Crystalglenoak2319 <greatoaks@...> wrote:

Greetings,I have some questions about Achalasia that some of you that have had it for many years may want to answer.First, my story:As early as 1995 (39 at the time) I would get serious hick-ups with my first bites of food, but one drink would solve it. I'm sure this was the early onset of this disease for me.Didn't notice too much progression until 3 years ago when I stayed at my inlaws home on a very flat foam bed. I had "acid reflux" symptoms and ended up spending the nights in a recliner. I realize now that our regular mattress at home had enough give in the middle.... just enough to allow my upper torso to be elevated a bit.Soon after that I ended up loosing 20 plus pounds over 6 months without even trying because I found it difficult to keep my food down. I then realized that

drinking copious amounts of water with my meal helped tremendously and I've since gained some of that back. Last year I started seeing a doctor about the problem and at first, of course, it was all GERD and if you just take these expensive pills, within a week "you'll experience dramatic relief." I did not.Finally a year ago going into early this year, I had all the tests done. The doctor/technician who did the barium test, when it is all done, told me.... "I'm not your doctor, and he'll have to see the results, but there is little doubt to me that you have Achalasia." Say what? How do you spell that. Went home and did research and realized how well my live xray showed off my "birds beak" LES.The doctor gave me Cardizem to help, but I found the side effects of constipation not worth what little relief I gained (if any).I pretty much handle the disease right now by doing a couple of

things.1. I drink lots of water with meals that seems to help both move things through, and I think (just a guess) that the action at my throat/top of my esophagus helps with the movement at the bottom. 2. I eat smaller meals. Of course, when I drink 32 oz. plus of water, I can't wolf things down like I used to. Two good slices of pizza, one large sandwich. My wife served me a sandwich AND soup the other day and it was like I just got away from the Thanksgiving table. Once in a while, for one reason or another, I can really put it away.3. I used to LOVE a bite to eat just before going to bed. No more. I still may have something 90 minutes before going to bed, but it will be something that is dissolvable in water (i.e. cereal). Anything else and I have problems all night long.4. I sleep with both my bed elevated 4" at one end (the whole bed) and then add to that an incline

pillow. I find otherwise, even if I had nothing to eat all day (I fasted once), even the saliva ends up coming up. I sooooo miss sleeping on my side and stomach. But given the treatments that seem to led toward GERD, it is something I am willing to live with the rest of my life.5. Walking after meals. I tend to get up now and walk for 30 minutes or so after a meal, at least the evening meal. Or make sure I am on my feet and moving. It just seems to help move things through.I have, about once or twice a month, a mroning long bout of "heartburn" most likely caused by Lactic Acid build up.OK, QUESTION TIME:1. Is there any benefit of doing the "expanding the LES" thing as long as my symptoms aren't worse? Would doing so keep my esophagus from dialting above the LES? Or should I wait until I just can't stand it anymore? Right now I eat well and sleep well with the

lifestyle changes I have made.2. What has people's experience been with the Beta-blockers (or I guess calcium blocker) medications? Worth the side effects? I'm not sure I gave mine a fair shake. I understand it may take several weeks to notice any benefit.3. What kind of time-line am I looking at for the progression of the disease?4. Has any one done any long-term fasting (say week or longer) to see if this helps "reset" anything (kinda like a computer reboot). Or, as I might suspect, does the lack of food regularly going through the LES tend to make it even tighter?5. 2% to 7% of those with Achalasia get cancer of the esophagus. yet one report says this doesn't warrant a regular inspection like for other cancers. So what is a person supposed to pay attention to know the early onset of this?6. The heartburn sensations that I get about twice a month.... any

rhyme or reason to them... or should I just be happy that it is only affecting me twice a month or so? (but when it hits hard, it hits HARD and lasts for several hours... yuck).7. And with modern technology, why doesn't someone come up with an artificial valve for the LES that lets stuff mostly pass just one way? I hate the thought of going from not being able to move my food into my stomach to my stomach always wantint to push things back.Well, thanks for any info you can share on these things.Glen

FareChase - Search multiple travel sites in one click.

[Guest guest]

Crystal,

I actually had the opposite effect of the

procardia after some time on it. My heart rate when wild up to 168 bpm. I had

to go the hospital and have it slowed down. But it did work at first. I was

able to eat anything. By the way WELCOME GLEN!!!!!

From:

achalasia [mailto:achalasia ] On Behalf Of Crystal Rodbourn

Sent: Tuesday, November 08, 2005

5:15 PM

achalasia

Subject: Re: New to

Achalasia and Group.... some questions

Glen,

Welcome to the group! I just recently joined myself after going

through the research, etc. after being diagnosed with Achalasia earlier this

year. My symptoms seem very familiar to yours. Losing weight,

nightime coughing, diagnosed first with GERD! After being diagnosed, I

was given procardia (a calcium channel blocker) and experienced immediate

relief in eating. I was to take it 1/2 hour prior to meals and had about

a 1 hour window where I could eat. However the side effects were

headache, lower blood pressure (mine was low enough!) and dizziness, but were

worth eating for!

I had the heller myotomy with parital wrap on October 18th, well worth

it, I am eating now and feeling so much better and not having any

coughing. No more extra symptoms.

Follow everyone elses' advise, find the expert in your area. Post

where you are from and we will all help, we all have stories to tell!

Good luck!

Crystal

glenoak2319

<greatoaks@...> wrote:

Greetings,

I have some questions about Achalasia that some of

you that have had

it for many years may want to answer.

First, my story:

As early as 1995 (39 at the time) I would get

serious hick-ups with

my first bites of food, but one drink would solve

it. I'm sure this

was the early onset of this disease for me.

Didn't notice too much progression until 3 years

ago when I stayed at

my inlaws home on a very flat foam bed. I

had " acid reflux " symptoms

and ended up spending the nights in a recliner.

I realize now that

our regular mattress at home had enough give in

the middle.... just

enough to allow my upper torso to be elevated a

bit.

Soon after that I ended up loosing 20 plus pounds

over 6 months

without even trying because I found it difficult

to keep my food

down. I then realized that drinking copious

amounts of water with my

meal helped tremendously and I've since gained

some of that back.

Last year I started seeing a doctor about the

problem and at first,

of course, it was all GERD and if you just take

these expensive

pills, within a week " you'll experience

dramatic relief. " I did not.

Finally a year ago going into early this year, I

had all the tests

done. The doctor/technician who did the

barium test, when it is all

done, told me.... " I'm not your doctor, and

he'll have to see the

results, but there is little doubt to me that you

have Achalasia. "

Say what? How do you spell that. Went

home and did research and

realized how well my live xray showed off my

" birds beak " LES.

The doctor gave me Cardizem to help, but I found

the side effects of

constipation not worth what little relief I gained

(if any).

I pretty much handle the disease right now by

doing a couple of

things.

1. I drink lots of water with meals that seems to

help both move

things through, and I think (just a guess) that

the action at my

throat/top of my esophagus helps with the movement

at the bottom.

2. I eat smaller meals. Of course, when I

drink 32 oz. plus of

water, I can't wolf things down like I used

to. Two good slices of

pizza, one large sandwich. My wife served me

a sandwich AND soup the

other day and it was like I just got away from the

Thanksgiving

table. Once in a while, for one reason or

another, I can really put

it away.

3. I used to LOVE a bite to eat just before going

to bed. No more.

I still may have something 90 minutes before going

to bed, but it

will be something that is dissolvable in water

(i.e. cereal).

Anything else and I have problems all night long.

4. I sleep with both my bed elevated 4 " at

one end (the whole bed)

and then add to that an incline pillow. I

find otherwise, even if I

had nothing to eat all day (I fasted once), even

the saliva ends up

coming up. I sooooo miss sleeping on my side

and stomach. But given

the treatments that seem to led toward GERD, it is

something I am

willing to live with the rest of my life.

5. Walking after meals. I tend to get up now

and walk for 30 minutes

or so after a meal, at least the evening

meal. Or make sure I am on

my feet and moving. It just seems to help

move things through.

I have, about once or twice a month, a mroning

long bout

of " heartburn " most likely caused by

Lactic Acid build up.

OK, QUESTION TIME:

1. Is there any benefit of doing the

" expanding the LES " thing as

long as my symptoms aren't worse? Would

doing so keep my esophagus

from dialting above the LES? Or should I

wait until I just can't

stand it anymore? Right now I eat well and

sleep well with the

lifestyle changes I have made.

2. What has people's experience been with the

Beta-blockers (or I

guess calcium blocker) medications? Worth

the side effects? I'm not

sure I gave mine a fair shake. I understand

it may take several

weeks to notice any benefit.

3. What kind of time-line am I looking at for the

progression of the

disease?

4. Has any one done any long-term fasting (say

week or longer) to see

if this helps " reset " anything (kinda

like a computer reboot). Or,

as I might suspect, does the lack of food

regularly going through the

LES tend to make it even tighter?

5. 2% to 7% of those with Achalasia get cancer of

the esophagus. yet

one report says this doesn't warrant a regular

inspection like for

other cancers. So what is a person supposed

to pay attention to know

the early onset of this?

6. The heartburn sensations that I get about twice

a month.... any

rhyme or reason to them... or should I just be

happy that it is only

affecting me twice a month or so? (but when it

hits hard, it hits

HARD and lasts for several hours... yuck).

7. And with modern technology, why doesn't someone

come up with an

artificial valve for the LES that lets stuff

mostly pass just one

way? I hate the thought of going from not

being able to move my food

into my stomach to my stomach always wantint to

push things back.

Well, thanks for any info you can share on these

things.

Glen

FareChase - Search multiple travel sites in one click.

[Guest guest]

Hi Glen,

Welcome to the group and welcome to Achalasia (great isn't it!)

The group is great support. The dilation gives varied releif, I had 2

months but so many more people get up to a year relief with this

alone. Don't wait for things to get worse. Most of us have done this

to some degree. Achalasia tends to get worse and then lessens and we

get a false sense security until it hits hard again. It is still

degenerating while we think we are doing OK. I have only had a

hellers myotomy in October and am now recovering really well, and

eating and drinking without trouble. IWe all fully understand how you

feel. Only a month ago I was kidding myself that I could wait too.

The group, my surgeon and family all recommended not too and they

were right. I feel I am getting a life back slowly now.

The heartburn problem you are getting is most likely spasms. I had

been getting them for a year until I was diagnosed and told I had no

heartburn damage and they were spasms. I am afraid it is a part of A

that has not yet been investigated into fully and we each have ways

of dealing with them. Most of us drink water, try to relax more,

maybe eat certain foods( I try cool yoghurt). I can not find a cause,

they come when they like.

We are all regressing at a different rate and different procedures

give us different time relief.

Since surgery I still sleep slightly elevated but only with a pillow.

I used to have all the problems you mentioned and now I don't.

Good luck with your choices. It's not worth hoping to wait and

loosing lots of weight (and sanity).

We are all here to help you.

Regards

>

> Greetings,

>

> I have some questions about Achalasia that some of you that have

had

> it for many years may want to answer.

>

> First, my story:

>

> As early as 1995 (39 at the time) I would get serious hick-ups with

> my first bites of food, but one drink would solve it. I'm sure

this

> was the early onset of this disease for me.

>

> Didn't notice too much progression until 3 years ago when I stayed

at

> my inlaws home on a very flat foam bed. I had " acid reflux "

symptoms

> and ended up spending the nights in a recliner. I realize now that

> our regular mattress at home had enough give in the middle.... just

> enough to allow my upper torso to be elevated a bit.

>

> Soon after that I ended up loosing 20 plus pounds over 6 months

> without even trying because I found it difficult to keep my food

> down. I then realized that drinking copious amounts of water with

my

> meal helped tremendously and I've since gained some of that back.

>

> Last year I started seeing a doctor about the problem and at first,

> of course, it was all GERD and if you just take these expensive

> pills, within a week " you'll experience dramatic relief. " I did

not.

>

> Finally a year ago going into early this year, I had all the tests

> done. The doctor/technician who did the barium test, when it is

all

> done, told me.... " I'm not your doctor, and he'll have to see the

> results, but there is little doubt to me that you have Achalasia. "

> Say what? How do you spell that. Went home and did research and

> realized how well my live xray showed off my " birds beak " LES.

>

> The doctor gave me Cardizem to help, but I found the side effects

of

> constipation not worth what little relief I gained (if any).

>

> I pretty much handle the disease right now by doing a couple of

> things.

> 1. I drink lots of water with meals that seems to help both move

> things through, and I think (just a guess) that the action at my

> throat/top of my esophagus helps with the movement at the bottom.

> 2. I eat smaller meals. Of course, when I drink 32 oz. plus of

> water, I can't wolf things down like I used to. Two good slices of

> pizza, one large sandwich. My wife served me a sandwich AND soup

the

> other day and it was like I just got away from the Thanksgiving

> table. Once in a while, for one reason or another, I can really

put

> it away.

> 3. I used to LOVE a bite to eat just before going to bed. No

more.

> I still may have something 90 minutes before going to bed, but it

> will be something that is dissolvable in water (i.e. cereal).

> Anything else and I have problems all night long.

> 4. I sleep with both my bed elevated 4 " at one end (the whole bed)

> and then add to that an incline pillow. I find otherwise, even if

I

> had nothing to eat all day (I fasted once), even the saliva ends up

> coming up. I sooooo miss sleeping on my side and stomach. But

given

> the treatments that seem to led toward GERD, it is something I am

> willing to live with the rest of my life.

> 5. Walking after meals. I tend to get up now and walk for 30

minutes

> or so after a meal, at least the evening meal. Or make sure I am

on

> my feet and moving. It just seems to help move things through.

>

> I have, about once or twice a month, a mroning long bout

> of " heartburn " most likely caused by Lactic Acid build up.

>

> OK, QUESTION TIME:

> 1. Is there any benefit of doing the " expanding the LES " thing as

> long as my symptoms aren't worse? Would doing so keep my esophagus

> from dialting above the LES? Or should I wait until I just can't

> stand it anymore? Right now I eat well and sleep well with the

> lifestyle changes I have made.

>

> 2. What has people's experience been with the Beta-blockers (or I

> guess calcium blocker) medications? Worth the side effects? I'm

not

> sure I gave mine a fair shake. I understand it may take several

> weeks to notice any benefit.

>

> 3. What kind of time-line am I looking at for the progression of

the

> disease?

>

> 4. Has any one done any long-term fasting (say week or longer) to

see

> if this helps " reset " anything (kinda like a computer reboot). Or,

> as I might suspect, does the lack of food regularly going through

the

> LES tend to make it even tighter?

>

> 5. 2% to 7% of those with Achalasia get cancer of the esophagus.

yet

> one report says this doesn't warrant a regular inspection like for

> other cancers. So what is a person supposed to pay attention to

know

> the early onset of this?

>

> 6. The heartburn sensations that I get about twice a month.... any

> rhyme or reason to them... or should I just be happy that it is

only

> affecting me twice a month or so? (but when it hits hard, it hits

> HARD and lasts for several hours... yuck).

>

> 7. And with modern technology, why doesn't someone come up with an

> artificial valve for the LES that lets stuff mostly pass just one

> way? I hate the thought of going from not being able to move my

food

> into my stomach to my stomach always wantint to push things back.

>

> Well, thanks for any info you can share on these things.

>

> Glen

>

[Guest guest]

Wow -- you about sum up all of our lives in your email.

I used cardizem for two years, both before I was diagnosed properly and after

until

surgery. It worked okay for me -- have have IBS so constipation wasn't an

issue. It

allowed me to maintain but not gain back weight.

The heartburn is likely spasms of your esophagus -- your LES is shut tight --

I learned that surgery works best as it clears the obstruction so that the

damage to the

esophagus caused by food sitting in there gets better,

I am getting endoscopy annually from now on, thank you.

Peggy

>

> Greetings,

>

> I have some questions about Achalasia that some of you that have had

> it for many years may want to answer.

>

> First, my story:

>

> As early as 1995 (39 at the time) I would get serious hick-ups with

> my first bites of food, but one drink would solve it. I'm sure this

> was the early onset of this disease for me.

>

> Didn't notice too much progression until 3 years ago when I stayed at

> my inlaws home on a very flat foam bed. I had " acid reflux " symptoms

> and ended up spending the nights in a recliner. I realize now that

> our regular mattress at home had enough give in the middle.... just

> enough to allow my upper torso to be elevated a bit.

>

> Soon after that I ended up loosing 20 plus pounds over 6 months

> without even trying because I found it difficult to keep my food

> down. I then realized that drinking copious amounts of water with my

> meal helped tremendously and I've since gained some of that back.

>

> Last year I started seeing a doctor about the problem and at first,

> of course, it was all GERD and if you just take these expensive

> pills, within a week " you'll experience dramatic relief. " I did not.

>

> Finally a year ago going into early this year, I had all the tests

> done. The doctor/technician who did the barium test, when it is all

> done, told me.... " I'm not your doctor, and he'll have to see the

> results, but there is little doubt to me that you have Achalasia. "

> Say what? How do you spell that. Went home and did research and

> realized how well my live xray showed off my " birds beak " LES.

>

> The doctor gave me Cardizem to help, but I found the side effects of

> constipation not worth what little relief I gained (if any).

>

> I pretty much handle the disease right now by doing a couple of

> things.

> 1. I drink lots of water with meals that seems to help both move

> things through, and I think (just a guess) that the action at my

> throat/top of my esophagus helps with the movement at the bottom.

> 2. I eat smaller meals. Of course, when I drink 32 oz. plus of

> water, I can't wolf things down like I used to. Two good slices of

> pizza, one large sandwich. My wife served me a sandwich AND soup the

> other day and it was like I just got away from the Thanksgiving

> table. Once in a while, for one reason or another, I can really put

> it away.

> 3. I used to LOVE a bite to eat just before going to bed. No more.

> I still may have something 90 minutes before going to bed, but it

> will be something that is dissolvable in water (i.e. cereal).

> Anything else and I have problems all night long.

> 4. I sleep with both my bed elevated 4 " at one end (the whole bed)

> and then add to that an incline pillow. I find otherwise, even if I

> had nothing to eat all day (I fasted once), even the saliva ends up

> coming up. I sooooo miss sleeping on my side and stomach. But given

> the treatments that seem to led toward GERD, it is something I am

> willing to live with the rest of my life.

> 5. Walking after meals. I tend to get up now and walk for 30 minutes

> or so after a meal, at least the evening meal. Or make sure I am on

> my feet and moving. It just seems to help move things through.

>

> I have, about once or twice a month, a mroning long bout

> of " heartburn " most likely caused by Lactic Acid build up.

>

> OK, QUESTION TIME:

> 1. Is there any benefit of doing the " expanding the LES " thing as

> long as my symptoms aren't worse? Would doing so keep my esophagus

> from dialting above the LES? Or should I wait until I just can't

> stand it anymore? Right now I eat well and sleep well with the

> lifestyle changes I have made.

>

> 2. What has people's experience been with the Beta-blockers (or I

> guess calcium blocker) medications? Worth the side effects? I'm not

> sure I gave mine a fair shake. I understand it may take several

> weeks to notice any benefit.

>

> 3. What kind of time-line am I looking at for the progression of the

> disease?

>

> 4. Has any one done any long-term fasting (say week or longer) to see

> if this helps " reset " anything (kinda like a computer reboot). Or,

> as I might suspect, does the lack of food regularly going through the

> LES tend to make it even tighter?

>

> 5. 2% to 7% of those with Achalasia get cancer of the esophagus. yet

> one report says this doesn't warrant a regular inspection like for

> other cancers. So what is a person supposed to pay attention to know

> the early onset of this?

>

> 6. The heartburn sensations that I get about twice a month.... any

> rhyme or reason to them... or should I just be happy that it is only

> affecting me twice a month or so? (but when it hits hard, it hits

> HARD and lasts for several hours... yuck).

>

> 7. And with modern technology, why doesn't someone come up with an

> artificial valve for the LES that lets stuff mostly pass just one

> way? I hate the thought of going from not being able to move my food

> into my stomach to my stomach always wantint to push things back.

>

> Well, thanks for any info you can share on these things.

>

> Glen

>