Re: My story - nice to find this group!

[Guest guest]

Hi Jerri,

welcome to the group. I enjoyed your message because it gives hope.

My doctors imply or say that achalasia only gets worse over time,

which I know is not true. I am managing myself for many years now,

with ups and downs, but I have also seen an improvement over time.

I don't have the foamy stuff coming up any more, I only occasionally

choke at night any more (and only if I have eaten shortly before

laying down), I sleep on " only " two pillows. I still eat small meals,

but rarely have to get up during meals anymore to walk around or

even " go to the restroom " . I am not sure what caused the improvement.

I got quite angry at my first doctor: He proposed to do a dilatation,

I wanted to wait and see how things develop (which I thought was

reasonable). He just said: " You will be back. " So much for compassion

and support. And yes, I switched doctors.

Achalasia is different for everyone, it is a complex disorder, with

different treatment options and coping techiques. But there is hope,

and I shure like to hear from other people who are getting better

over time.

Thanks again for sharing your story with us, Tanja

> Hi!

>

> I've spent the last few days reading all the posts - and I'm

surprised

> how common this " unusual " condition really is. No one I've ever

known

> beyond the doctor who diagnosed me has ever heard of anything like

it.

>

> In early 1996, I started having difficulty swallowing. It came on

> gradually - my first bad experience was trying to eat a salad and

not

> being able to swallow it. I was on a date, of all things! How

> embarassing. It was 6 months later before my mom convinced me I

> should go and see a doctor about it. My doctor was less than

> sympathetic - I weighed more than 300 lbs at the time and her

comment

> was " It can't be bothering you too much, you're not wasting away! "

> She did, however, refer me to a second doctor, who then referred me

to

> the gastro doctor who ultimately took me seriously.

>

> I had a dilation that year, and was put on Verapamil and

Nifedipine,

> which seemed to help some. In 1997 I had a second dilation, which

was

> miserable as I reacted badly to the anesthetic. I then met with a

> surgeon, who explained the process of stripping away the sphincter

> muscle at the bottom of my esophogus. I had lost some weight, but

was

> still heavy and it would be major surgery. I decided to wait.

>

> Sleeping was the most difficult, as I would wake up choking and

with

> my sinuses burning from whatever had backed up. I never, ever

slept

> thru the night. Eating was always a chore, though after my throat

> " warmed up " I would say, it became easier. The first meal of the

day

> was the worst.

>

> In 1999 I stopped taking the meds. I also moved that year from a

> house I had lived in since 1995. This particular house was built on

a

> filled in wetland, and I had problems with mold and fungus on the

> walls - which is why I moved! After less than 2 nights in my new

> house, I slept through the night. What a miracle!

>

> Slowly my condition started to improve. Sleeping through the night

was

> a regular event, and I never woke up choking. Although it was

still

> difficult to swallow, with enough water I could get anything down,

> including a daily regimen of vitamins. (You never have to tell me

to

> drink more water every day!)

>

> To this day, I am almost convinced that my condition was caused by

the

> moisture and mold in my previous house, though I can't be sure.

But

> the remarkable improvement after leaving that house is quite

amazing

> to me.

>

> Today my condition is nothing more than a minor inconvenience, to

> which I'm very thankful. Swallowing is still difficult, but I've

> learned to adjust and it's just second nature to me to make sure I

> have water with every meal and to chew my food thoroughly. There

is

> nothing I have to avoid, but I find that salad and some

fruit " stick " .

> I haven't seen the doctor in several years, and I'm keeping my

> fingers crossed that I wont't have to!

>

> Sorry I was so long winded ... it felt good to talk to a group of

> people who know what I'm talking about and don't think I'm

crazy.

>

> Jerri

[Guest guest]

At 01:07 AM 7/16/2001 +0000, tbeshear@... wrote:

>My doctors imply or say that achalasia only gets worse over time,

>which I know is not true. I am managing myself for many years now,

>with ups and downs, but I have also seen an improvement over time.

>...

>I shure like to hear from other people who are getting better

>over time.

I agree. I can improve my symptoms by doing a lot of hiking. I have not

heard of this working for anyone else, but it makes a big difference for

me. Your message reminded me of something my doctor said, when I told him

about the messages on this list. He said that people that seek out help on

the internet are most likely less happy with the way their treatment and

progress has gone than people that do not go to the internet for help. So,

the common view we see on this list is probably somewhat worse than the

general view of people with achalasia. Something to consider.

Jerry

[Guest guest]

Jerry recently reported that his doctor believes that those of us on this

list may be those who are particularly unhappy with our treatment and

progress.

Not to sound too self serving about this, but I think there may be an

entirely different explanation re those of us on the listserv.

It may be that those of us who have been participating in this extended

electronic conversation have two very specific things in common:

1. we have access to computers

2. we are ready to gain some understanding, and therefore we hope,

control over this disease

Just by coincidence, I happen to work a lot with people with disabilities,

and I've found that many people, even those with severe situations, don't

necessarily seek out information and suggestions at first. This " advice

seeking " is something many people work their way towards, regardless of the

severity of their condition.

So I respectfully disagree with your doctor's opinion here. I think there

are plenty of people out there who are having many of the same problems

with the diagnosis and treatment of achalasia that we all have, but they

don't have access to computers and/or they aren't quite ready to jump into

this information-gathering thing we all share!

Took me a long time to get serious about learning more about this disease,

even though I had perfectly dreadful symptoms for years. (Maybe I'm just a

slow learner!)

Vicki

>

>I agree. I can improve my symptoms by doing a lot of hiking. I have not

>heard of this working for anyone else, but it makes a big difference for

>me. Your message reminded me of something my doctor said, when I told him

>about the messages on this list. He said that people that seek out help on

>the internet are most likely less happy with the way their treatment and

>progress has gone than people that do not go to the internet for help. So,

>the common view we see on this list is probably somewhat worse than the

>general view of people with achalasia. Something to consider.

>

>Jerry

>

>

>

>

[Guest guest]

I think the group provides some relief from the isolation that most of us must feel. I live in a large metro area and don't know anyone else who has achalasia. I work in an agency that adjudicates disability claims, and none of my co-workers had heard of achalsia. There are no Achalasia Suppor Groups at our local churches or community centers!

Re: Re: My story - nice to find this group!

Jerry recently reported that his doctor believes that those of us on thislist may be those who are particularly unhappy with our treatment andprogress.Not to sound too self serving about this, but I think there may be anentirely different explanation re those of us on the listserv.It may be that those of us who have been participating in this extendedelectronic conversation have two very specific things in common: 1. we have access to computers 2. we are ready to gain some understanding, and therefore we hope, control over this diseaseJust by coincidence, I happen to work a lot with people with disabilities,and I've found that many people, even those with severe situations, don'tnecessarily seek out information and suggestions at first. This "adviceseeking" is something many people work their way towards, regardless of theseverity of their condition.So I respectfully disagree with your doctor's opinion here. I think thereare plenty of people out there who are having many of the same problemswith the diagnosis and treatment of achalasia that we all have, but theydon't have access to computers and/or they aren't quite ready to jump intothis information-gathering thing we all share!Took me a long time to get serious about learning more about this disease,even though I had perfectly dreadful symptoms for years. (Maybe I'm just aslow learner!)Vicki>>I agree. I can improve my symptoms by doing a lot of hiking. I have not>heard of this working for anyone else, but it makes a big difference for>me. Your message reminded me of something my doctor said, when I told him>about the messages on this list. He said that people that seek out help on>the internet are most likely less happy with the way their treatment and>progress has gone than people that do not go to the internet for help. So,>the common view we see on this list is probably somewhat worse than the>general view of people with achalasia. Something to consider.>>Jerry>>>>

[Guest guest]

At 03:41 PM 7/16/2001 -0400, Vicki Roth wrote:

>Jerry recently reported that his doctor believes that those of us on this

>list may be those who are particularly unhappy with our treatment and

>progress.

It was more like we would be likely to have some of those people on the

list. Not that the list is a collection of those people.

>Not to sound too self serving about this, but I think there may be an

>entirely different explanation re those of us on the listserv.

I think there are a number of different reasons different people may have.

>It may be that those of us who have been participating in this extended

>electronic conversation have two very specific things in common:

>

> 1. we have access to computers

> 2. we are ready to gain some understanding, and therefore we hope,

> control over this disease

How many people with achalasia that have a computer are not on this list?

Why are people " ready " ? I think of this list as a support list. It is more

than that, but I think a number of people are here for the support and

sharing. Does everyone with achalasia want support? If not, why are they

different. Some people are here just for the information. Does everyone

with achalasia want more information, or are some content with what they know?

I had achalasia for many years before I even told my doctor I was having

problems. If I had told him years earlier, when my problems were not so

bad, I would not have been as motivated as I am now to know about it and to

know others with it.

>Just by coincidence, I happen to work a lot with people with disabilities,

>and I've found that many people, even those with severe situations, don't

>necessarily seek out information and suggestions at first. This " advice

>seeking " is something many people work their way towards, regardless of the

>severity of their condition.

Why do they get to that point? Is there something different about the ones

that never get there?

>So I respectfully disagree with your doctor's opinion here. I think there

>are plenty of people out there who are having many of the same problems

>with the diagnosis and treatment of achalasia that we all have, but they

>don't have access to computers and/or they aren't quite ready to jump into

>this information-gathering thing we all share!

I agree there are probably many times the number of people here who have

the problems but are not on the list. Let us assume that people with

computers have the same ratio of worse verses better symptoms and outcomes

as people without computers . Let us also assume that all the people on the

list have computers. (This is not completely true but it simplifies the

problem for consideration.) Then if the list is just a random, unbiased,

sampling of the people with computers that have achalasia, the list will

also be an unbiased sampling of the general population of people with

achalasia. Then we only need to be concerned with the people that have

computers and have achalasia, and having a computer is then not a factor.

Then the only question is, what makes people " ready to jump into this

information-gathering thing? " And, does that bias the messages posted.

>Took me a long time to get serious about learning more about this disease,

>even though I had perfectly dreadful symptoms for years. (Maybe I'm just a

>slow learner!)

If your symptoms were not bad as they were would you have gotten " serious

about learning more? " Even if you would still have gotten serious but it

would have taken longer for you to get there, that to could indicate a

possible biasing.

Call it denial, if you wish, but I would be glad to find out that the list

is biased toward having an abundance of the worst of the worst. I hope I

can get by with little treatment and it have turn out better with longer

lasting results than some on this list have had. I hate to think that

multiple myotomies and an esophagectomy are in my future. I would like to

think that the odds are close to zero.

Sure, there are people on the list that are doing well and are happy with

their treatment and outcome. But there are some that have not done very

well. I hope the chances of having an outcome like those have had is less

than you would think from reading the posts.

Jerry

[Guest guest]

Do you think you would be here is your symptoms were less of a problem?

Jerry

At 04:34 PM 7/18/2001 -0400, Bill Leavitt wrote:

>I think the group provides some relief from the isolation that most of us

>must feel. I live in a large metro area and don't know anyone else who

>has achalasia. I work in an agency that adjudicates disability claims,

>and none of my co-workers had heard of achalsia. There are no Achalasia

>Suppor Groups at our local churches or community centers!

[Guest guest]

I think my reason for discovery of this group is sort of a combination of the two other opinions. I first had a myotomy in 1971 when I was 19, and knew virtually nothing about what I was undertaking. The surgery went well, and my achalasia was quite manageable for years, except for one more balloon dilatation in 1981. About 5 years ago, my symptoms became worse, and I began research then, not because I was dissatisfied with anything, but because I didn't know what to do next!

I ended up having botox injections for a few years, but this year, those were no longer effective, so I was back into research, and found the group. The group has helped me know what kinds of treatment other people are getting, what their doctors are saying, and I've even gotten a referral on the net.

So I don't think I was dissatisfied with my treatment, but my symptoms had progressed and I needed to know where to go next. I've also learned a lot of things to ask the doctors I've seen, as to why this or that wouldn't work.

I've learned my disease is somewhat complicated, as well as the fact that no two people experience exactly the same progress in this.So it has helped me to understand why the doctors can't give me a pat answer.

a

[Guest guest]

Although I myself began having trouble in my teens, from what I've read, the "mid-years" are the usual time people are diagnosed.

a

[Guest guest]

> >Jerry recently reported that his doctor believes that those of us

on this

> >list may be those who are particularly unhappy with our treatment

and

> >progress.

I just want to comment that my take isn't that the majority of people

on this group are unhappy with their treatment (see my survey thread

I don't think anyone but me indicated they were unhappy with their

treatment). And when I joined this list quite a while ago, I wasn't

particularly unhappy with my heath care.

I think it is related to the fact that the doctors don't know much of

anything about this terrible disease/condition. When you're told you

have this terrible problem but that nothing is known about the cause

and the treatments are only palliative then I think the logical thing

to do is search out information. How can we not have questions when

there is almost no information out there.

I do think that now that there is so much access to information that

people don't want to rely on one doctor's opinion/information. That

doctor may be so busy in his practice that he doesn't keep up with

new medical information. Also since achalasia is supposedly so rare,

it seems like there have been a lot of stories about doctors who know

basically nothing about it. And if people are being treated by a

family or general practitioner, they have to know that their doctor

isn't as experienced or knowlegable than a GI specialist might be.

People do need to take charge of their health care and they should.

Only by having information can they feel secure in their treatment.

Passivity doesn't work well in most health problems.

Personally, I have had a lot of problems with doctors in my personal

health care experience, and statements like the one Jerry passed on

from his doctor only makes it worse. Plus the HMO system so

prevalent in America only makes the whole system worse. Its a bit

ironic that I haven't liked or trused my health care, because I have

worked for a large medical group for the last 10 years and love my

job.

> I had achalasia for many years before I even told my doctor I was

having

> problems. If I had told him years earlier, when my problems were

not so

> bad, I would not have been as motivated as I am now to know about

it and to

> know others with it.

This is so true! I've seen statistics that indicate that people with

achalasia have an average delay of seeking medical help for something

like four years. Discomfort and fear are great motivators to seek

out help and information.

I started Internet searching on achalasia the minute I got my

diagnosis (which was about 5 years after starting chest pains and

about 4 months after not being able to swallow well) - because that's

pretty much all I got - the diagnosis only! And not much additional

information.

I'm not sure what I've written here was what I meant to say when I

started - sorry if it is rambling and disjointed.

I really enjoy this group and think we are pretty much an average

group skewed toward the typical computer group statistics - younger

and have exposure and access to computers and technology.

I think it would be beneficial for doctors to read these types of

groups occasionally so they know where their patients are coming from.

[Guest guest]

> Hi!

>

> I've spent the last few days reading all the posts - and I'm

surprised

> how common this " unusual " condition really is.

I just wanted to comment that perhaps this condition is becomming

more common. My doctor (a GI specialist at a major medical

institution) told me that the achalasia patients he had seen were all

very old. I see in this group there are a lot of 30-somethings and

generally younger people.

Also everytime I do an Internet search on Achalasia I come across

more web sites and more journal articles or abstracts.

Granted, I am perceptive to it because I am one of those aflicted,

and younger people are statistically more likely to be on the

Internet and lists like this, and I'm sure more and more information

in general gets posted to the net.

Still, I'm wondering if there isn't perhaps an increase in the

numbers of people, particularly younger people, who are affected by

achalasia.

Any thoughts?

[Guest guest]

At 12:23 PM 7/19/2001 +0000, wrote:

>I just want to comment that my take isn't that the majority of people

>on this group are unhappy with their treatment (see my survey thread

>I don't think anyone but me indicated they were unhappy with their

>treatment). And when I joined this list quite a while ago, I wasn't

>particularly unhappy with my heath care.

>

>I think it is related to the fact that the doctors don't know much of

>anything about this terrible disease/condition. When you're told you

>have this terrible problem but that nothing is known about the cause

>and the treatments are only palliative then I think the logical thing

>to do is search out information. How can we not have questions when

>there is almost no information out there.

I agree that the doctors lack of knowledge about the subject is a factor in

seeking more information. But that lack of knowledge is common. Probably a

very common experience among people with achalasia who have computers. So,

why are we here and the rest of the people with achalasia and computers not

here?

Jerry

[Guest guest]

At 08:54 AM 7/19/2001 -0400, Kliewer4@... wrote:

>... I first had a myotomy in 1971....one more balloon

>dilatation in 1981. About 5 years ago, my symptoms became worse, and I began

>research then, not because I was dissatisfied with anything, but because I

>didn't know what to do next!

" Dissatisfied " is a subjective kind of thing, but more objectively, needing

to do something more is not as good as not needing to do anything more.

Dissatisfied or not, I would guess you were not happy about needing

something more.

>I ended up having botox injections for a few years, but this year, those were

>no longer effective, so I was back into research, and found the group.

If they had continued to be effective, would you have found this group?

>...my symptoms had

>progressed and I needed to know where to go next.

This is what I am talking about.

>... no two people experience exactly the same progress in this.

Would you say some that don't progress as badly as others may not find the

need to do research on a list like this one?

Jerry

[Guest guest]

At 01:09 PM 7/19/2001 +0000, wrote:

>Still, I'm wondering if there isn't perhaps an increase in the

>numbers of people, particularly younger people, who are affected by

>achalasia.

I also wonder if there are a lot of people that have never told their

doctors that they have problem. When the subject of my difficulties enters

a discussion another person will sometimes admit to having similar

problems, though milder, which have not been report to a doctor. I also

wonder how many people with achalasia that have gone to doctors have not

been told achalasia is what they have.

Jerry

[Guest guest]

I agree that the doctors lack of knowledge about the subject is a

factor in

> seeking more information. But that lack of knowledge is common.

Probably a

> very common experience among people with achalasia who have

computers. So,

> why are we here and the rest of the people with achalasia and

computers not

> here?

>

> Jerry

I think it is mainly two parts. First I think there are probably

people who haven't found us yet but would like to.

Second, I think some people are afraid of losing their anonymity and

meeting others through the Internet. Becomming a member of a group

like this may make them feel threatened in some way.

We may just be that set of people that is computer-literate and not

afraid to read and post messages. We may also be the lucky ones to

find this group. I can't recall how I found it but I know on my

achalasia searches I don't see it linked from a lot of places.

[Guest guest]

Probably less often, at least. Having to deal with the symptoms (mostly difficulty swallowing) frequently is a constant reminder that I am stuck with this disease.

Re: Re: My story - nice to find this group!

Do you think you would be here is your symptoms were less of a problem?JerryAt 04:34 PM 7/18/2001 -0400, Bill Leavitt wrote:>I think the group provides some relief from the isolation that most of us >must feel. I live in a large metro area and don't know anyone else who >has achalasia. I work in an agency that adjudicates disability claims, >and none of my co-workers had heard of achalsia. There are no Achalasia >Suppor Groups at our local churches or community centers!