Hi!  hope everyone's well -

I found an interesting article on the net about Achalasia.  It's a
couple years old but had some info I haven't seen on other articles
or
sites.  The link is http://www.omed.org/issue6.htm

One of the points in the article jumped out at me - The quote is:
"Moreover, the development of dysphagia is often heralded by
disappearance of longstanding heartburn (3)."

I had chest pain that I called heartburn for several years, and it
progressively got worse and worse.  When my dysphagia started
(leading
to my diagnosis of achalasia), the chest pain sort of subsided.  I
used to have it several times daily and now only have it once or
twice
a month.  My pain rarely seemed related to eating, and wasn't a
burning feeling, so I never really knew if it was true "heartburn" or
not.  Anyway, I'm really glad that the pain is pretty much gone (so
far).

Has anyone had a similar experience?

-Jennifer

> Jennifer,

Thanks for the reference article.  My family physician is convinced that my
achalasia is due to reflux, even though I was not aware of any heartburn or
acid.  He wants to prescribe antacids to prevent further damage.  I can't buy
his theory, so I don't take the antacids.  I have gotten severe gas pains that
feel like a heart attack after the dilation procedure.  They are controlled by
anti-gas pills (simethicon), but they have lessened with time.

Howard

>
>

My son has achalasia, gastroparesis and a loss of peristalis.  It started
about a year and a half ago when he was a senior in college.  He lost about
40 lbs while going to various doctors including Johns Hopkins in Baltimore
and nothing helped.  We were sent to  the Digestive Center at Johns Hopkins
Bayview  and they started him on domperidone to treat the gastroparesis after
every other drug failed. In the past 6 months they have performed a Botox
injection and two dilations.  He switched to a full liquid diet and he has
been doing well but is unable to eat even soft foods because they get stuck
in the upper part of his esophagus due to the loss of peristalis and because
his esophagus is soft and floppy.  He is considering a Laparoscopic Myotomy
but we are worried that it won't really help because the problem is before
the LES.  I have been reading the messages on this page for over a year and
no one seems to have the combination of problems that my son has, in fact the
doctors say he is only of about 10 people in the country that have this
combination of problems (his small bowel also is not working properly).  Does
anyone have or know of a case where the food gets stuck in the upper part of
the esophagus ,that has been inproved by a myotomy?  Any help would be
greatly appreciated.

Brad Basford
dlbasford@...

Hello, I'm sorry to hear that your son is so sick.  I also had the same
symptoms. I had a Botox injection, then three dilations, before my doctors
opted for the Heller's Myotomy.  I lost 30 lbs in a month and a half, and was
hospitalized for dehydration, twice.  I'm "perfectly normal" now except for
when I stray from the diet.  When I do stray, I get terrible gas pains, chest
pains and the food feels like it will come up, but doesn't (much preferable
to not keeping anything down).  Right now I'm on Propulsid and Pepcid.  I
take over the counter gas tablets but will ask the doctor at the next
check-up for something stronger.  I think the operation saved my life.  Good
luck and stay in touch.

Hi!  The only information I could find about problems with the Upper
Esophageal Sphicter muscle was contained on the website for Froedtert
Memorial Lutheran Hospital.  Site address is
www.grand-rounds.com/2no1Cricophar.html.  With an address that complex, my
experience has been that it is often unaccessible.  If that is the case, the
article is entitled "Case Presentation Cricopharyngeal Achalasia".  It's a
fairly technical article, but the sense I get from it is that there may be
some relief in much the same way as LES achalasia is treated - namely with
dilations and myotomy.  Botox injections are ruled out due to proximity with
vocal chords.
If you are totally unable to access this article, contact me again and I can
arrange to get it to you via some more traditional (fax or snail mail)
means.
Good luck to your son and your family.
chaggas@...

----- Original Message -----
From: <dlbasford@...>
To: <achalasia@egroups.com>
Sent: Wednesday, June 14, 2000 7:29 PM
Subject: [achalasia] Achalasia & Gastroparesis


> My son has achalasia, gastroparesis and a loss of peristalis.  It started
> about a year and a half ago when he was a senior in college.  He lost
about
> 40 lbs while going to various doctors including Johns Hopkins in Baltimore
> and nothing helped.  We were sent to  the Digestive Center at Johns
Hopkins
> Bayview  and they started him on domperidone to treat the gastroparesis
after
> every other drug failed. In the past 6 months they have performed a Botox
> injection and two dilations.  He switched to a full liquid diet and he has
> been doing well but is unable to eat even soft foods because they get
stuck
> in the upper part of his esophagus due to the loss of peristalis and
because
> his esophagus is soft and floppy.  He is considering a Laparoscopic
Myotomy
> but we are worried that it won't really help because the problem is before
> the LES.  I have been reading the messages on this page for over a year
and
> no one seems to have the combination of problems that my son has, in fact
the
> doctors say he is only of about 10 people in the country that have this
> combination of problems (his small bowel also is not working properly).
Does
> anyone have or know of a case where the food gets stuck in the upper part
of
> the esophagus ,that has been inproved by a myotomy?  Any help would be
> greatly appreciated.
>
> Brad Basford
> dlbasford@...
>
> ------------------------------------------------------------------------
> beMANY! has a new way to save big on your phone bill -- and keep on
> saving more each month: Our huge buying group gives you Long Distance
> rates which fall monthly, plus an extra $60 in FREE calls!
> http://click.egroups.com/1/3821/10/_/24373/_/961028978/
> ------------------------------------------------------------------------
>
>
>

_____________________________________________
NetZero - Defenders of the Free World
Click here for FREE Internet Access and Email
http://www.netzero.net/download/index.html

Thanks for responding.  I was able to find the web site on CP Achalasia.  I
have spent many hours on the web looking for information on achalasia and I
have never seen anything about this type.  The doctors we have seen have said
nothing about  it.  We will be asking the doctor about CP Achalasia.  Thanks
again for the info.

Brad Basford
dlbasford@...

Good luck - there's not much info available anywhere on achalasia,
unfortunately, and certainly nothing about your son's condition.  Hopefully,
you're in a part of the country with good medical facilities.  If you're
anywhere in the Midwest, I can certainly highly recommend the specialist and
surgeon who cared for me.
Let me know if I can be of further help.
Best wishes to you and your family,
Carol

----- Original Message -----
From: <dlbasford@...>
To: <achalasia@egroups.com>
Sent: Friday, June 16, 2000 2:15 PM
Subject: Re: [achalasia] Achalasia & Gastroparesis


> Thanks for responding.  I was able to find the web site on CP Achalasia.
I
> have spent many hours on the web looking for information on achalasia and
I
> have never seen anything about this type.  The doctors we have seen have
said
> nothing about  it.  We will be asking the doctor about CP Achalasia.
Thanks
> again for the info.
>
> Brad Basford
> dlbasford@...
>
> ------------------------------------------------------------------------
> AUTO & HOME INSURANCE -- LOWEST RATES & BEST COVERAGE. Get dozens of the
> best agents competing for your business with our new FREE service.
> http://click.egroups.com/1/5568/10/_/24373/_/961182924/
> ------------------------------------------------------------------------
>
>
>

_____________________________________________
NetZero - Defenders of the Free World
Click here for FREE Internet Access and Email
http://www.netzero.net/download/index.html

Seeing as there hasn't been a message posted for a while I show below
what I've been able to put down in words regarding my achalasia.
Perhaps it will help someone...

"I only found this group a few weeks ago.  When I was first diagnosed
I had a trawl round the net and found the odd article but nothing
particularly relevant.  Thank you whoever for starting it.  I am
male, 40 years old and live in the UK,

My symptoms started with difficulties in swallowing (I think in July
or August 1998)(although I couldn't think about that rationally and
tell my doctor or consultant at the time).  Soon after, every now and
then, I felt pains in my oesophagus which died down in a few minutes -
  I attributed these to stress.  Then I felt sick lying down
(particularly at night), felt like running to the bathroom but it
went away as soon as I sat upright.  I thought this was reflux and
the doctor treated it as such.  Trying to sleep with pillows to hold
my head up didn't work particularly well for me, but I now have a
good 'fix' ( see below).

I slept thought the night on Christmas Day.  I attributed this to not
eating at all in the evening, so I often just had a light early snack
in the evening which sometimes helped - but not always.

Probably as with everyone else the symptoms were hard to pin down and
various treatments were prescribed at first including Losec, Gaviscon
etc.  They had no effect.  One of my mother's friends still dabbles
in GI as a surgeon and he was able to see me between Christmas and
New Year 1998.

As my uncle had had bowel problems and as I had never heard of
achalasia when he mentioned 'achalasia' as a possible cause of the
symptoms it completely passed me by.  He mentioned it again at the
second appointment.  As soon as I had a barium swallow the
radiographer was able to tell me that it was definitely achalasia -
classic symptoms and X-ray.  When I went through the symptoms it all
fell into place.  I felt that I hadn't been able to explain them
properly in the first place.  He performed a GI scope soon after
under a light general anaesthetic [at the Chiltern Hospital] to
confirm it and rule out any other potential problems (ulcers etc) in
the stomach area.

He referred me to a consultant in Oxford, Mr Maynard, who was
familiar with achalasia.  He explained it in layman's terms and
plotted out a course of procedures and what-ifs for me.  He first had
to be absolutely sure that it was achalasia.  I had a second scope
[at the Acland in Oxford] by him to count out any possibility of
cancer or some such causing the same symptoms.  I then had
oesophageal manometry (no anaesthetic required) at the Radcliffe,
Oxford to confirm loss of stalsis (?) as I drunk sips of water.
These two procedures confirmed achalasia.

He discussed the options that I had being: dilatation, botulinum
injection (botox) and surgery.  He did not do botox nor did he
promote it.  It may be performed in the UK but he gave the impression
it wasn't.  Surgery seemed a bit severe for what to me was lack of
ability to get a good night's sleep so we went down the balloon
route.  He would be on hand in case the LES ruptured/perforated and
would by default do a myotomy.

I was booked in to the Radcliffe to have a 3 cm balloon dilation by
Dr Hughes-Morgan.  Again this was under a light general anaesthetic
and I was out for an hour or so and then was able to go straight
home.   There was immediate relief from the night time problems and I
was able to get some good nights rest.  Eating became easier - not
perfect but not too much of a problem.

However after a while the problem re-occurred and it was decided to
do the next size up dilation.  Dr Hughes Morgan repeated
the 'stretch' but to 3.5 cm.  Again the problem died down and it
lasted a lot longer than before.  I didn't need a hundred pillows to
keep my head propped up and stop the reflux problem.

I noticed it return in October 1999. And it got worse again.  I don't
think it was ever as bad as the first time but I was losing a lot of
sleep and we went for the full 4 cm 'stretch' knowing that it was the
largest that could be performed without really risking a
perforation.  That was in January 2000 and my condition now (July
2000) is fairly stable.  We have analysed my 3 stretches and
concluded, that as I am relatively young, my muscles have been
repairing themselves a bit quicker than standard and the stretch
which is designed to break the muscles to loosen the restriction at
the base of the oesophagus, has become less effective relatively
quickly.

My consultant and I have agreed that I won't go back to see him
unless the situation deteriorates and a myotomy will have to be
considered.  My consultant has not performed any laparoscopic
myotomies yet, so in a sense I am biding my time.

I had a big doubt that cutting all the muscle at the LES won't just
leave a big hole for the food to flow out of at night.  I feel my
sleeping problems could return.  The group messages suggest this is
not the case so I shall be more positive about a myotomy now.

I have the odd moment at night - particularly if I eat late.  I'm
sure the same applies if I drink late but it may just be the way I
feel rather than a true physical difference.  By co-incidence I found
that wearing a pair of long johns at night prevented me slipping down
the bed, off the pillows, and so gave me more restful sleep.

Toast has always been the hardest food to go down.  Thanks to the
info gleaned elsewhere from this group I am not alone in this.  I
thought I found drinks hard to swallow as well but this maybe a
feeling again rather than reality.  I can certainly drink a pint of
tea pretty quickly.

Fizzy drinks aren't quite as easy, but certainly not impossible, and
there is no food I can't eat and nor do I try to avoid anything.
After reading the woes of other members I appreciate that I have got
off lightly so far.  I have had no noticeable weight loss and I can
keep up with most other diners (except for my wife and kids who wolf
their food down at an alarming rate!).

When I am stressed mentally my oesophagus sometimes hurts - does
anyone else have this?  In fact it was so bad after my 3rd dilation
that they checked I didn't have a perforation.

One of the most frustrating things is not knowing what caused it.

Any tips on foods to avoid and to try would be appreciated.
The `movements' to help the food go down have worked well.
Walking
around always sorted it pretty quickly and the worst thing is eating
in the car which does not allow the food to go down.   As soon as I
considered that it was food vs gravity I felt better!

As soon as I knew that liquid would encourage the food down I felt
better (a problem shared, perhaps?) but strangely it doesn't seem to
help me.  I can feel it backing up and I have to wait a considerable
time for it to go down.  The relief when it goes down is immense and,
in an odd way, quite satisfying.  If I ever feel that this isn't
going to work then I will have the op..........."

Charles Wemyss

My physician just prescribed urecholine 25mg/ before meals.  Has
anyone tried this?

Dear Carol,

I read the message you posted about Achalasia back (I believe) in
February.  I found it very helpful.  I am wondering if you have had
the surgery and if so, what your experience has been with it and
since then.  If so, where did you have the surgery done and by whom.
I appreciate your help.  I have been debating about it for over a
year
now, since I was diagnosed with the condition.  My current experience
is one of difficulty eating all the time.  This is existed for
probably 3 years, with very noticeable symptoms for 5 or more years.
One positive thing is that I am able to sleep through the night lying
nearly flat.  What has your experience been with sleeping and with
reflux since the surgery.  The surgeon who talked to me about doing
the surgery said one of the side effects is reflux and that I would
have to take medication for that.  Thank you for your help.
Sincerely,  Don Fogle (don@...)




--- In achalasia@egroups.com, "Jennifer" <jennlee.2@e...> wrote:
> Hi Carol - thanks so much for relating your experience to me.  It
helps
> a lot.  Your symptoms of the chest pain sound a lot like mine.  My
> dysphagia is not as bad as what you describe in your case.  I wonder
> though if it will just get worse though.  Is that usually what
happens?
>  Mine is very sporadic.  I can eat whole meals without much problem
> sometimes.  Then sometimes I take just a sip of water and it won't
go
> down.  Particular foods sometimes work and sometimes don't.  It's
just
> so strange.
>
> Everytime I have a bad episode I think "I want the surgery
tomorrow!"
> Everytime I can eat without problem I think "Why go through
surgery?"
> I will probably have the surgery though.  Hopefully in April or May.
>
> When you say recovery for the surgery is about 2 weeks, does that
mean
> it'd be likely I'd have to be off work for 2 weeks or is it just 2
> weeks to be feeling completely recovered?  With a desk job, when
would
> you feel OK being back working?
>
> Thanks for the advice on the OTC Cola syrup.  I am going to look for
> some right away!  When I had chest pains in the past I would try
> various OTC meds for heartburn and gas (thinking it had to be one or
> the other) and occasionally I got the feeling that Gavescon would
help.
>  I never could be sure, but I definately know that nothing else I
tried
> worked a bit.
>
> Thanks again!
>
> -Jennifer
>
> "carol haggas" <chagga-@...> wrote:
> original article:http://www.egroups.com/group/achalasia/?start=78
> > Hi, Jennifer!  I'm a 48 yr. old woman who was diagnosed with
> achalasia in
> > 1995.  Like you, I have had the intensely painful chest pains
which,
> for me,
> > felt like what I imagine a heart attack would feel like.  They
would
> come on
> > independently of any eating activities and in fact would often
occur
> when I
> > was at my least stressful - in the middle of the night, waking me
out
> of a
> > sound sleep, for instance.
> >
> > I had balloon dilatations done in 1996 - two almost back-to-back
> (within 2
> > months) because the first one was so totally unsuccessful due to
the
> > ballooon being too small (sort of like Goldilocks and the bears).
> That gave
> > me a little relief, but not much and not for long.
> >
> > Basically, I managed my condition for the longest time through
> avoiding
> > certain foods, trying to eat slowly, etc.  One thing I stumbled
upon
> that
> > helped tremendously with both the chest pains and in dislodging
food
> was the
> > OTC nausea remedy, Cola syrup.  My MDs are completely at a loss
as
to
> why
> > this would work but I would get immediate (within second) relief
of
> the LES
> > muscle spasm that caused the chest pains and could take a few sips
> whenever
> > I felt food was so lodged that I'd have to regurgitate it.
Obviously
> this
> > was a tremendous help whenever I was eating in public, although I
> used it at
> > home, too.
> >
> > With this little helper, I was able to manage with achalasia
until
the
> > summer of 99 when  my chest pains got worse and the cola syrup was
> unable to
> > relieve them.  At this time, my doctor prescribed the drug Levsin
> which did,
> > in fact, help the chest pains almost as effectively as the cola
> syrup.  The
> > first couple of times I took it, however, I got bad headaches, but
> that
> > eventually stopped being a side effect.  The only "beware" with
> levsin is
> > that you can only take 1 dosage in, I think, 4 to 6 hours... so if
> you have
> > a second attack or if the first one isn't completely "cured", you
> should
> > wait before taking a second one.  I eventually got to the point
where
> a
> > single dose wasn't working and out of desperation took a second
pill
> to
> > eventually get some relief.  That's when I knew I would have to
go
to
> the
> > next step, which was surgery.
> >
> > Having additional balloon dilatation was an option, but since the
> first go
> > round was only moderately successful and since you run the danger
of
> > stretching the esophagus to the point of perforation with
successive
> > dilatations, I opted for the laparascopic myotomy.
> > It was the best thing I've ever done and basically I feel like the
> woman I
> > was before this awful disease ever came into my life.  The
surgery,
> since it
> > was laparoscopic, was far easier than a traditional approach.  I
have
> one
> > vertical incision right below my navel that is about 1.5" long,
then
> 4 other
> > incisions of about 1/2", 2 on each side of my lower abdomen.  I
was
> in the
> > hospital for 48 hours and the surgery took about 2 hours.  I was
on a
> liquid
> > diet for the first day, graduated to liquids and soft foods the
> second and
> > stayed on soft foods (oatmeal, soups, mashed potatoes) for about a
> week, but
> > then began eating better within a week-two weeks to the point
where I
> now
> > eat anything I want - especially breads which had been akin to
trying
> to
> > swallow a wet sponge before.  The recovery at home is about 2
weeks
> and it's
> > more from the after-effects of general anesthesia than any
lingering
> muscle
> > soreness.  Your energy level just takes awhile to come back after
any
> kind
> > of surgery.
> >
> > I would strongly recommend the surgery, especially since you are
> young.  I
> > don't think age has too much of a determining factor in who gets
> achalasia,
> > although I think more cases are diagnosed for people in their 40s
and
> > upwards.  I think this is due to the fact that many people spend
> years being
> > misdiagnosed when actually their symptoms started when they were
> younger.
> > It is also a disease that can affect children.  An
equal-opportunity
> > disease, you might say.
> >
> > I thought I had a print out of some research I'd done about a
> minimally
> > invasive surgical center in Wisconsin, but I don't see it in my
> files.  I'll
> > try to find that for you and get back to you with it.  I live
about
> 40 miles
> > west of Chicago and actually have an old friend who lives in
Madison,
> one I
> > haven't seen in years and years.  I think you'll be in a really
good
> place
> > to have the surgery done but if you have any concerns at all, I'd
be
> happy
> > to see if either my gastroenterologist or surgeon has any words of
> wisdom
> > about colleagues in your area they could recommend.
> >
> > Sorry I rambled on for so long...hope this helps.  By the way, do
you
> know
> > about the achalasia website?  It's at
http://donn.lbl.gov/achalasia.
> Check
> > it out for other patients' stories, research articles, etc.  Also
I
> belong
> > to another message group at www.healthseek.com/forums - you might
> also find
> > some advice there.
> >
> > Good luck- write whenever you want to, and take care!
> > Carol
> >
> > ----- Original Message -----
> > From: Jennifer <jennlee.2@e...>
> > To: <achalasia@e...>
> > Sent: Saturday, February 12, 2000 4:30 PM
> > Subject: [achalasia] recent diagnosis - Long
> >

I wrote in May to let you know I would have a laparoscopic myotomy.
And I am glad to report that the results have been phenomenal.  Here,
I share my experience with you:

My doctor scheduled me for a 7am surgery. I was out by 9:30 am in the
recovery room.  By 11 am, the doctor released me and I went home. I
was strong enough to walk to the taxi and home the same day.  That
afternoon around 2pm I had the most satisfying meal in  a long time.
I did not have any problems swallowing any food. And ever since, I
have gone back to a normal diet.

The surgery was not painful and the recovery was quite benign. I
spent
four days at home mostly reading, eating, sleeping and walking
around.
I was back at work one week after the surgery.  Although the scar and
pain in the stomach kept me uncomfortable, it was worth it. I did
have
an uncomfortable sensation in my shoulders due to the CO2 but nothing
unbearable.  And the pain killers that the doctor gave me (Ibuprofen
with codein) were sufficient to make the pain go away.  After three
weeks, I went back to moderate exercise and after 5 weeks I was doing
a light weight training.

I can now sleep the WHOLE night without interruptions. I have NO
problems with acid reflux or anything else. I can EAT everything,
bread, pasta, rice, meat, you name it.. Because I had the wrap in the
stomach, I do feel that I can eat smaller portions, but that is not a
problem.  I realize that these results may not be the same for
everyone, but so far my surgery seems to have worked.

Hope it's helpful...

I was glad to hear of the good results of your myotomy. I'm sure it will
encourage others who are hesitating to have it done. As for myself, I am not
ready to have it yet. I've heard it may be a problem for me because of my
age,(70)and I've had 7 dilations already.Up to now I can still eat pretty
good if I'm careful to eat slowly and drink frequently while eating and I am
not losing any weight. In fact I've gained a couple of pounds lately. I know
each case is different and that's what I go by. I wish you continued
success. Claire


>From: wiseguysny@...
>Reply-To: achalasia@egroups.com
>To: achalasia@egroups.com
>Subject: [achalasia] I feel great after the myotomy
>Date: Wed, 26 Jul 2000 02:35:14 -0000
>
>I wrote in May to let you know I would have a laparoscopic myotomy.
>And I am glad to report that the results have been phenomenal.  Here,
>I share my experience with you:
>
>My doctor scheduled me for a 7am surgery. I was out by 9:30 am in the
>recovery room.  By 11 am, the doctor released me and I went home. I
>was strong enough to walk to the taxi and home the same day.  That
>afternoon around 2pm I had the most satisfying meal in  a long time.
>I did not have any problems swallowing any food. And ever since, I
>have gone back to a normal diet.
>
>The surgery was not painful and the recovery was quite benign. I
>spent
>four days at home mostly reading, eating, sleeping and walking
>around.
>I was back at work one week after the surgery.  Although the scar and
>pain in the stomach kept me uncomfortable, it was worth it. I did
>have
>an uncomfortable sensation in my shoulders due to the CO2 but nothing
>unbearable.  And the pain killers that the doctor gave me (Ibuprofen
>with codein) were sufficient to make the pain go away.  After three
>weeks, I went back to moderate exercise and after 5 weeks I was doing
>a light weight training.
>
>I can now sleep the WHOLE night without interruptions. I have NO
>problems with acid reflux or anything else. I can EAT everything,
>bread, pasta, rice, meat, you name it.. Because I had the wrap in the
>stomach, I do feel that I can eat smaller portions, but that is not a
>problem.  I realize that these results may not be the same for
>everyone, but so far my surgery seems to have worked.
>
>Hope it's helpful...
>
>

________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

Thank you so much for sharing the results of your surgery and afterwards.  It
sounds great.  I am at the stage of having been thinking about what my next step
is, including surgery.  Your experience sounds extremely encouraging.  I am
wondering where you had your surgery.  It sounds like you had an excellent
surgeon.  Who was your doctor?  I talked to a surgeon here in Phoenix about a
year ago and he recommended the myotomy.  He said he had done about 10 of them. 
If I have it done, I want to feel very confident that the doctor is skilled in
the procedure.  How long had you experienced Achalasia?

I truly appreciate your help.

Don Fogle
Phoenix, AZ
don@...

I have suffered from achalasia for several years and have had 5 or 6
balloonings. The last one was a "special" ballooning which worked very well.
Unfortunately, the Consultant who carried out the treatment died recently.
Can someone recommend a Consultant in the London area?  I am 70 years old.
Thank you,

Alma

(typed on my son's computer)


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If you are not the intended recipient, or a person responsible for
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not disclose, copy, distribute, or retain this message or any part of it.

Don -
Unless you're willing to travel, the surgeon who performed my myotomy is
here in the Chicago area.  At the time he did mine, I believe he said he had
done 8 previous myotomies.  In any other procedure, my first inclincation
would be to steer clear of someone with so little experience; but since
achalasia is such a relatively rare condition, not many physicians and
surgeons have experience with it.  I believe my surgeon had the advantage of
training at the Univ of Nebraska with a surgeon (Heller?) who helped pioneer
the laparoscopic technique.

This is my fifth year with achalasia, although it feels like much, much
longer than that.  I first noticed the symptoms in the spring of 1995 when I
was 44.  I had the first dilatation in the winter of 1996, and the second
(last) one just a few months later since the first did absolutely nothing at
all.  I managed the disease through trial-and-error eating habits until fall
'99 when all my tricks stopped working and I was experiencing increasingly
painful chest spasms.  Surgery was in Nov. '99.

Let me know if there is anything else I can tell you
Take care -
Carol

----- Original Message -----
From: Don Fogle <don@...>
To: <achalasia@egroups.com>
Sent: Wednesday, July 26, 2000 11:20 AM
Subject: re: [achalasia] I feel great after the myotomy


> Thank you so much for sharing the results of your surgery and afterwards.
It sounds great.  I am at the stage of having been thinking about what my
next step is, including surgery.  Your experience sounds extremely
encouraging.  I am wondering where you had your surgery.  It sounds like you
had an excellent surgeon.  Who was your doctor?  I talked to a surgeon here
in Phoenix about a year ago and he recommended the myotomy.  He said he had
done about 10 of them.  If I have it done, I want to feel very confident
that the doctor is skilled in the procedure.  How long had you experienced
Achalasia?
>
> I truly appreciate your help.
>
> Don Fogle
> Phoenix, AZ
> don@...
>
>
>
>
>
>
>


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Hello, Charles -
Have been meaning to respond to your message for some time now, just
finished up a big project and so am playing catchup with e-mails.
You explained your condition very well and so I must say, welcome to the
club!  I think we all sort of find our way of coping with this disease,
through trial and error mostly.  For instance, one of the things I relied on
to help ease the chest pains (which I assume are spasms of the LES) and to
move clogged food down rather than up and out, is an over-the-counter remedy
for nausea called Cola Syrup.  It's essentially the base syrup for the soda
Coca-Cola.  As a child, my mother used to give me a spoonful or so if my
stomach was upset and I always have some on hand because I hate feeling
nauseous.  How I discovered it for my achalasia was sheer accident:  I had a
particularly bad weekend a few years back of not being able to swallow
anything, including my own saliva.  I had regurgitated so much that my
throat was raw.  Not having a cough syrup in the house, I just grabbed the
Cola Syrup bottle.  Within seconds the spasm pain was gone - felt like a
rosebud unfurling in my chest.  Next I tried it when food was lodged and it
worked better than water for helping those clogged morsels pass through.

Before my surgery, I found those foods that I could and couldn't eat.  Dry
snack foods always worked - chips, dried cereals, pretzels, etc. - and
almost anything sweet, regardless of the consistency.  Fresh fruits were
hard, as were some fresh vegetables like tomatoes.  Breads were impossible.
So I existed on a lot of mashed potatoes, soups, applesauce, puddings.  All
this has changed since my surgery and now I eat anything I like.

I agree with you on stress and the role it plays.  I've had a few episodes
of chest pains in the last two weeks, the first I've had since my surgery in
Nov.  I'm under a lot of stress right now, so I'm not likely to rush off to
doctor.  I was prescribed Levsin for these attacks and they work very
quickly.  Hopefully my life will calm down and I won't have the spasms
again.  If not, then I guess we re-evaluate the situation.

Hopefully your condition is stable and manageable but should you find it
necessary to go on to the next level of treatment, I would encourage the
surgery and hope you can find someone with laparoscopic experience.  My
operation was done in about 90 minutes and I was hospitalized for 2 days,
although I think I could have come home after one.  No pain from operation
other than gas used in laparoscopy settles in neck and shoulders and takes a
while to dissipate.

Hope this info has helped - take care,
Carol

----- Original Message -----
From: Charles Wemyss <charles@...>
To: <achalasia@egroups.com>
Sent: Wednesday, July 12, 2000 11:58 AM
Subject: [achalasia] A brief medical history


> Seeing as there hasn't been a message posted for a while I show below
> what I've been able to put down in words regarding my achalasia.
> Perhaps it will help someone...
>
> "I only found this group a few weeks ago.  When I was first diagnosed
> I had a trawl round the net and found the odd article but nothing
> particularly relevant.  Thank you whoever for starting it.  I am
> male, 40 years old and live in the UK,
>
> My symptoms started with difficulties in swallowing (I think in July
> or August 1998)(although I couldn't think about that rationally and
> tell my doctor or consultant at the time).  Soon after, every now and
> then, I felt pains in my oesophagus which died down in a few minutes -
>  I attributed these to stress.  Then I felt sick lying down
> (particularly at night), felt like running to the bathroom but it
> went away as soon as I sat upright.  I thought this was reflux and
> the doctor treated it as such.  Trying to sleep with pillows to hold
> my head up didn't work particularly well for me, but I now have a
> good 'fix' ( see below).
>
> I slept thought the night on Christmas Day.  I attributed this to not
> eating at all in the evening, so I often just had a light early snack
> in the evening which sometimes helped - but not always.
>
> Probably as with everyone else the symptoms were hard to pin down and
> various treatments were prescribed at first including Losec, Gaviscon
> etc.  They had no effect.  One of my mother's friends still dabbles
> in GI as a surgeon and he was able to see me between Christmas and
> New Year 1998.
>
> As my uncle had had bowel problems and as I had never heard of
> achalasia when he mentioned 'achalasia' as a possible cause of the
> symptoms it completely passed me by.  He mentioned it again at the
> second appointment.  As soon as I had a barium swallow the
> radiographer was able to tell me that it was definitely achalasia -
> classic symptoms and X-ray.  When I went through the symptoms it all
> fell into place.  I felt that I hadn't been able to explain them
> properly in the first place.  He performed a GI scope soon after
> under a light general anaesthetic [at the Chiltern Hospital] to
> confirm it and rule out any other potential problems (ulcers etc) in
> the stomach area.
>
> He referred me to a consultant in Oxford, Mr Maynard, who was
> familiar with achalasia.  He explained it in layman's terms and
> plotted out a course of procedures and what-ifs for me.  He first had
> to be absolutely sure that it was achalasia.  I had a second scope
> [at the Acland in Oxford] by him to count out any possibility of
> cancer or some such causing the same symptoms.  I then had
> oesophageal manometry (no anaesthetic required) at the Radcliffe,
> Oxford to confirm loss of stalsis (?) as I drunk sips of water.
> These two procedures confirmed achalasia.
>
> He discussed the options that I had being: dilatation, botulinum
> injection (botox) and surgery.  He did not do botox nor did he
> promote it.  It may be performed in the UK but he gave the impression
> it wasn't.  Surgery seemed a bit severe for what to me was lack of
> ability to get a good night's sleep so we went down the balloon
> route.  He would be on hand in case the LES ruptured/perforated and
> would by default do a myotomy.
>
> I was booked in to the Radcliffe to have a 3 cm balloon dilation by
> Dr Hughes-Morgan.  Again this was under a light general anaesthetic
> and I was out for an hour or so and then was able to go straight
> home.   There was immediate relief from the night time problems and I
> was able to get some good nights rest.  Eating became easier - not
> perfect but not too much of a problem.
>
> However after a while the problem re-occurred and it was decided to
> do the next size up dilation.  Dr Hughes Morgan repeated
> the 'stretch' but to 3.5 cm.  Again the problem died down and it
> lasted a lot longer than before.  I didn't need a hundred pillows to
> keep my head propped up and stop the reflux problem.
>
> I noticed it return in October 1999. And it got worse again.  I don't
> think it was ever as bad as the first time but I was losing a lot of
> sleep and we went for the full 4 cm 'stretch' knowing that it was the
> largest that could be performed without really risking a
> perforation.  That was in January 2000 and my condition now (July
> 2000) is fairly stable.  We have analysed my 3 stretches and
> concluded, that as I am relatively young, my muscles have been
> repairing themselves a bit quicker than standard and the stretch
> which is designed to break the muscles to loosen the restriction at
> the base of the oesophagus, has become less effective relatively
> quickly.
>
> My consultant and I have agreed that I won't go back to see him
> unless the situation deteriorates and a myotomy will have to be
> considered.  My consultant has not performed any laparoscopic
> myotomies yet, so in a sense I am biding my time.
>
> I had a big doubt that cutting all the muscle at the LES won't just
> leave a big hole for the food to flow out of at night.  I feel my
> sleeping problems could return.  The group messages suggest this is
> not the case so I shall be more positive about a myotomy now.
>
> I have the odd moment at night - particularly if I eat late.  I'm
> sure the same applies if I drink late but it may just be the way I
> feel rather than a true physical difference.  By co-incidence I found
> that wearing a pair of long johns at night prevented me slipping down
> the bed, off the pillows, and so gave me more restful sleep.
>
> Toast has always been the hardest food to go down.  Thanks to the
> info gleaned elsewhere from this group I am not alone in this.  I
> thought I found drinks hard to swallow as well but this maybe a
> feeling again rather than reality.  I can certainly drink a pint of
> tea pretty quickly.
>
> Fizzy drinks aren't quite as easy, but certainly not impossible, and
> there is no food I can't eat and nor do I try to avoid anything.
> After reading the woes of other members I appreciate that I have got
> off lightly so far.  I have had no noticeable weight loss and I can
> keep up with most other diners (except for my wife and kids who wolf
> their food down at an alarming rate!).
>
> When I am stressed mentally my oesophagus sometimes hurts - does
> anyone else have this?  In fact it was so bad after my 3rd dilation
> that they checked I didn't have a perforation.
>
> One of the most frustrating things is not knowing what caused it.
>
> Any tips on foods to avoid and to try would be appreciated.
> The `movements' to help the food go down have worked well.
> Walking
> around always sorted it pretty quickly and the worst thing is eating
> in the car which does not allow the food to go down.   As soon as I
> considered that it was food vs gravity I felt better!
>
> As soon as I knew that liquid would encourage the food down I felt
> better (a problem shared, perhaps?) but strangely it doesn't seem to
> help me.  I can feel it backing up and I have to wait a considerable
> time for it to go down.  The relief when it goes down is immense and,
> in an odd way, quite satisfying.  If I ever feel that this isn't
> going to work then I will have the op..........."
>
> Charles Wemyss
>
>
>
> ------------------------------------------------------------------------
> Get a NextCard Visa, in 30 seconds!
> 1. Fill in the brief application
> 2. Receive approval decision within 30 seconds
> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR
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> ------------------------------------------------------------------------
>
>
>


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Don - finally cleaning up my email inbox and found that I hadn't really
answered question about reflux after surgery.  I had an anti-reflux
procedure performed at the same time as my myotomy.  There are many
different names of these techniques, after the surgeons who perfected them,
I imagine.  Mine was a Toupet (sp?) wrap.  I was given prescription for
Zantac and took this twice a day for the first month or so, then went down
to once a day before evening meal, then stopped altogether.  I have no
problem with reflux, no matter what I eat (although I'm not fond of spicy
foods so don't have that potential problem to contend with) or what time of
day (can even eat within half hour of bedtime without problems).  I normally
sleep with two pillows and find I don't have to be elevated any more than
that.
Take care,
Carol

----- Original Message -----
From: Don Fogle <don@...>
To: <achalasia@egroups.com>
Sent: Tuesday, July 25, 2000 4:35 AM
Subject: [achalasia] Read your message


> Dear Carol,
>
> I read the message you posted about Achalasia back (I believe) in
> February.  I found it very helpful.  I am wondering if you have had
> the surgery and if so, what your experience has been with it and
> since then.  If so, where did you have the surgery done and by whom.
> I appreciate your help.  I have been debating about it for over a
> year
> now, since I was diagnosed with the condition.  My current experience
> is one of difficulty eating all the time.  This is existed for
> probably 3 years, with very noticeable symptoms for 5 or more years.
> One positive thing is that I am able to sleep through the night lying
> nearly flat.  What has your experience been with sleeping and with
> reflux since the surgery.  The surgeon who talked to me about doing
> the surgery said one of the side effects is reflux and that I would
> have to take medication for that.  Thank you for your help.
> Sincerely,  Don Fogle (don@...)
>
>
>
>
> --- In achalasia@egroups.com, "Jennifer" <jennlee.2@e...> wrote:
> > Hi Carol - thanks so much for relating your experience to me.  It
> helps
> > a lot.  Your symptoms of the chest pain sound a lot like mine.  My
> > dysphagia is not as bad as what you describe in your case.  I wonder
> > though if it will just get worse though.  Is that usually what
> happens?
> >  Mine is very sporadic.  I can eat whole meals without much problem
> > sometimes.  Then sometimes I take just a sip of water and it won't
> go
> > down.  Particular foods sometimes work and sometimes don't.  It's
> just
> > so strange.
> >
> > Everytime I have a bad episode I think "I want the surgery
> tomorrow!"
> > Everytime I can eat without problem I think "Why go through
> surgery?"
> > I will probably have the surgery though.  Hopefully in April or May.
> >
> > When you say recovery for the surgery is about 2 weeks, does that
> mean
> > it'd be likely I'd have to be off work for 2 weeks or is it just 2
> > weeks to be feeling completely recovered?  With a desk job, when
> would
> > you feel OK being back working?
> >
> > Thanks for the advice on the OTC Cola syrup.  I am going to look for
> > some right away!  When I had chest pains in the past I would try
> > various OTC meds for heartburn and gas (thinking it had to be one or
> > the other) and occasionally I got the feeling that Gavescon would
> help.
> >  I never could be sure, but I definately know that nothing else I
> tried
> > worked a bit.
> >
> > Thanks again!
> >
> > -Jennifer
> >
> > "carol haggas" <chagga-@...> wrote:
> > original article:http://www.egroups.com/group/achalasia/?start=78
> > > Hi, Jennifer!  I'm a 48 yr. old woman who was diagnosed with
> > achalasia in
> > > 1995.  Like you, I have had the intensely painful chest pains
> which,
> > for me,
> > > felt like what I imagine a heart attack would feel like.  They
> would
> > come on
> > > independently of any eating activities and in fact would often
> occur
> > when I
> > > was at my least stressful - in the middle of the night, waking me
> out
> > of a
> > > sound sleep, for instance.
> > >
> > > I had balloon dilatations done in 1996 - two almost back-to-back
> > (within 2
> > > months) because the first one was so totally unsuccessful due to
> the
> > > ballooon being too small (sort of like Goldilocks and the bears).
> > That gave
> > > me a little relief, but not much and not for long.
> > >
> > > Basically, I managed my condition for the longest time through
> > avoiding
> > > certain foods, trying to eat slowly, etc.  One thing I stumbled
> upon
> > that
> > > helped tremendously with both the chest pains and in dislodging
> food
> > was the
> > > OTC nausea remedy, Cola syrup.  My MDs are completely at a loss
> as
> to
> > why
> > > this would work but I would get immediate (within second) relief
> of
> > the LES
> > > muscle spasm that caused the chest pains and could take a few sips
> > whenever
> > > I felt food was so lodged that I'd have to regurgitate it.
> Obviously
> > this
> > > was a tremendous help whenever I was eating in public, although I
> > used it at
> > > home, too.
> > >
> > > With this little helper, I was able to manage with achalasia
> until
> the
> > > summer of 99 when  my chest pains got worse and the cola syrup was
> > unable to
> > > relieve them.  At this time, my doctor prescribed the drug Levsin
> > which did,
> > > in fact, help the chest pains almost as effectively as the cola
> > syrup.  The
> > > first couple of times I took it, however, I got bad headaches, but
> > that
> > > eventually stopped being a side effect.  The only "beware" with
> > levsin is
> > > that you can only take 1 dosage in, I think, 4 to 6 hours... so if
> > you have
> > > a second attack or if the first one isn't completely "cured", you
> > should
> > > wait before taking a second one.  I eventually got to the point
> where
> > a
> > > single dose wasn't working and out of desperation took a second
> pill
> > to
> > > eventually get some relief.  That's when I knew I would have to
> go
> to
> > the
> > > next step, which was surgery.
> > >
> > > Having additional balloon dilatation was an option, but since the
> > first go
> > > round was only moderately successful and since you run the danger
> of
> > > stretching the esophagus to the point of perforation with
> successive
> > > dilatations, I opted for the laparascopic myotomy.
> > > It was the best thing I've ever done and basically I feel like the
> > woman I
> > > was before this awful disease ever came into my life.  The
> surgery,
> > since it
> > > was laparoscopic, was far easier than a traditional approach.  I
> have
> > one
> > > vertical incision right below my navel that is about 1.5" long,
> then
> > 4 other
> > > incisions of about 1/2", 2 on each side of my lower abdomen.  I
> was
> > in the
> > > hospital for 48 hours and the surgery took about 2 hours.  I was
> on a
> > liquid
> > > diet for the first day, graduated to liquids and soft foods the
> > second and
> > > stayed on soft foods (oatmeal, soups, mashed potatoes) for about a
> > week, but
> > > then began eating better within a week-two weeks to the point
> where I
> > now
> > > eat anything I want - especially breads which had been akin to
> trying
> > to
> > > swallow a wet sponge before.  The recovery at home is about 2
> weeks
> > and it's
> > > more from the after-effects of general anesthesia than any
> lingering
> > muscle
> > > soreness.  Your energy level just takes awhile to come back after
> any
> > kind
> > > of surgery.
> > >
> > > I would strongly recommend the surgery, especially since you are
> > young.  I
> > > don't think age has too much of a determining factor in who gets
> > achalasia,
> > > although I think more cases are diagnosed for people in their 40s
> and
> > > upwards.  I think this is due to the fact that many people spend
> > years being
> > > misdiagnosed when actually their symptoms started when they were
> > younger.
> > > It is also a disease that can affect children.  An
> equal-opportunity
> > > disease, you might say.
> > >
> > > I thought I had a print out of some research I'd done about a
> > minimally
> > > invasive surgical center in Wisconsin, but I don't see it in my
> > files.  I'll
> > > try to find that for you and get back to you with it.  I live
> about
> > 40 miles
> > > west of Chicago and actually have an old friend who lives in
> Madison,
> > one I
> > > haven't seen in years and years.  I think you'll be in a really
> good
> > place
> > > to have the surgery done but if you have any concerns at all, I'd
> be
> > happy
> > > to see if either my gastroenterologist or surgeon has any words of
> > wisdom
> > > about colleagues in your area they could recommend.
> > >
> > > Sorry I rambled on for so long...hope this helps.  By the way, do
> you
> > know
> > > about the achalasia website?  It's at
> http://donn.lbl.gov/achalasia.
> > Check
> > > it out for other patients' stories, research articles, etc.  Also
> I
> > belong
> > > to another message group at www.healthseek.com/forums - you might
> > also find
> > > some advice there.
> > >
> > > Good luck- write whenever you want to, and take care!
> > > Carol
> > >
> > > ----- Original Message -----
> > > From: Jennifer <jennlee.2@e...>
> > > To: <achalasia@e...>
> > > Sent: Saturday, February 12, 2000 4:30 PM
> > > Subject: [achalasia] recent diagnosis - Long
> > >
>
>
>
>
>
>
>
>


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signoff

Hello,

Thanks for letting my husband and I join!

We are at our witts end.  Last April /99 my husband had his first
surgery (burning muscles by scope, and the surgeon made a rap so he
would'nt get gastric reflux.  The surgery was a dismal failure.

This year in May 2000, he had another surgery they did the exact same
thing but loosened the wrap.  Another failure that made him worse,
and now he gets gastric reflux.  I have cried and cried over this
because he suffers so much with attacks with constant burping,
reguritation, severe chest pain, burning sensations.  I even had to
take him to the hospital for a possible heart attack.  Tests revealed
that it was not his heart.  They gave him nitro which seemed to
relieve the chest pain.  I am so scared for him.  The surgeon says
there is nothing else to do for him, But I will not GIVE UP!

I am scared that he is going to rupture his eoasphagus or choke to
death.  Are my fears unfounded.

We desperately need to find out if there are any other procedures
that will cure his suffering and my worries of him dying from this.

Any Help would be very much appreciated!

Thanks Again,

Laura & Ken

Please go to UCLA Medical Center.  My doctors saved my life with a Heller's
Myotomy.  If that's what you need then that's the place to be (on the West
Coast).  I also suffered from severe chest pains and had to go to an
emergency room once when I thought it was a heart attack.  I'm almost
"normal" now.  LOL  Good luck and please feel free to e-mail me if you have
any more questions.  Sincerely, Elena Wagner

Elena,

Thank you for taking time to write about your experience.  I am really glad to
hear about the UCLA Center.  I have heard from others who are back east or in
Chicago.  I am in Phoenix and much closer to UCLA.  Who was your doctor?   How
long ago did you have the surgery?   Did you have a good (relatively quick)
recovery and any complications with the surgery?

Thank you so much for sharing and helping.

Sincerely,
Don Fogle

With best regards

Charles Wemyss

-----Original Message-----
From: sentto-1073445-42-964947411-charles=wemyss.co.uk@returns.onelist.com [mailto:sentto-1073445-42-964947411-charles=wemyss.co.uk@returns.onelist.com]On Behalf Of Carol Haggas
Sent: Saturday, July 29, 2000 12:34
To: achalasia@egroups.com
Subject: Re: [achalasia] A brief medical history

Hi:

In 1985 I had a Heller's myotomy that was very successful.  Since that time I
have taken anti acid pill daily.  If I have little of no food three hours
before bedtime. I have few problems.  In event I have chest pain (upper GI
gas) I take Gas X and drink cold water.  This generally dissipates the gas.
In addition to this I sleep with the bed raised 4 or
  5 inches higher at the head of the bed. I know how painful this condition
can be.  I hope you can get it under control.

My daughter, age 27, was just diagnosed as having Achalasia.  We are
informed that there is a blood test that will tell if it was caused
by a parasite, but the doctor has said that because the treatment is
the same anyway there is no need to have the blood test.  I would
appreciate knowing if anyone has received any different advice.


                             Thanks,  Joni.

Hi.  I have not heard anything about a blood test to determine the cause of
Achalasia.  I would be interested in hearing an actual cause for the
disease.  I have been told that they are just "not sure" what causes it.


joniemail@... wrote:

> My daughter, age 27, was just diagnosed as having Achalasia.  We are
> informed that there is a blood test that will tell if it was caused
> by a parasite, but the doctor has said that because the treatment is
> the same anyway there is no need to have the blood test.  I would
> appreciate knowing if anyone has received any different advice.
>
>                             Thanks,  Joni.
>
>
>

Joni,
Chagas disease is a lethal disease that can be easily verified with a blood
test.  Treatment may be similar but the prognosis is very different.  It
should be ruled out.
-Howard

joniemail@... wrote:

> My daughter, age 27, was just diagnosed as having Achalasia.  We are
> informed that there is a blood test that will tell if it was caused
> by a parasite, but the doctor has said that because the treatment is
> the same anyway there is no need to have the blood test.  I would
> appreciate knowing if anyone has received any different advice.
>
>                             Thanks,  Joni.
>
>
>

Dear Joni,
I'm afraid to tell you that a blood test is really not necessary.  My husband
was diagnosed with it 4 years ago.  Yes, it can be caused by a parasite or a
virus, but the diagnosis remains the same.  If it has been diagnosed as
achalasia the blood test is virtually not important.

The issue now is to get your daugher help,  Immediately!  My husband let it
go for years to the point that the doctor's don't think there is much else
they can do for him.

I only hope that this was diagnosed early, whereas, there is significant help
out there for this disease.  Be active in her doctor's choice of treatment
and push for all available treatments before it becomes so serious that
surgical interventation has to be done.

Other than that all I can do Joni is pray for you and your daughter and keep
you up-to-date on any new medical treatments available.  If I find anything
new to tell you about this disease.  I will let you know.  Please keep me
updated on your daughter's progress.  I feel for you both.

God bless,

red57kw05@...   (Laura & Ken from North
Bay, Canada)

Hi Joni,

I'm wondering if this blood test mentioned is in relation to Chagas
Disease (a debilitating and sometimes fatal disease - some 50,000 die
from it annually), which is found predominantly in South and Central
America.  That disease was found to be caused by an insect bite which
transmits a parasite (American trypanosomiasis) and also by being
exposed to infective feces, uncooked foods, and blood transfusions.

In the chronic form of the disease many symptoms develop, one of
which
being the swallowing difficulty achalasia.  In the chronic stage,
there is no treatment of the disease itself - only of the symtoms.
Chronic symptoms may start to develop 10-20 years after the initial
infection.

In the US they generally don't associate achalaia with Chagas disease
unless you have lived or travelled extensively in South or Central
America (and it is much more common in poverty-striken areas so most
North Americans aren't exposed even while vacationing).  So if your
daughter has never been exposed it is extremely unlikely that this is
the cause.

If it is truly Chagas disease that the doctors talked about testing
for, I'd say that it could be information worth knowing since there
are many other symptoms that my develop from this disease including
heart problems and other digestive problems.

I have recently read some disturbing reports that there are incidents
of Chagas disease in the US (generally in the South), most believed
to
be from blood transfusions of infected asymptomatic Latin American
immigrants and some determined to be vector transmission into
California and Texas.

If it is some other parasite they are testing for as an achalasia
cause then I haven't heard of it and would love to know more.  Please
post if you find out more details.  I for one would like to know the
cause of my achalasia and if there was a test to determine it or rule
out something I'd definitely take it.

Thanks for posting - Good luck to your daughter (I was recently
diagnosed at age 30) it is a difficult and depressing problem to have
(although I  keep telling myself there are worse ones).  Keep posting
and be sure to have your daughter post to the group if she needs info
or support.

Jennifer Rusch
jennlee.2@...

ps.  I'm having a endoscope dilation on Monday - my first non-drug
treatment of the problem.  Fingers and toes are crossed already.
Because I'm too wishy washy on the myotomy surgery my doctor talked
me
into trying this treatment.



--- In achalasia@egroups.com, joniemail@n... wrote:
> My daughter, age 27, was just diagnosed as having Achalasia.  We
are
> informed that there is a blood test that will tell if it was caused
> by a parasite, but the doctor has said that because the treatment
is
> the same anyway there is no need to have the blood test.  I would
> appreciate knowing if anyone has received any different advice.
>
>
>                             Thanks,  Joni.

Hello,
I've been diagnosed with a rare, "Nutcracker Esophagus", with a
probable combination of Achalasia.  My symtoms are similar to the
one's I read in this group.  Some not so severe, some slightly
different.
Has anyone heard of a "Nutcracker"?  Has anyone had the surgery, and
would care to share the outcome?
Any Kaiser Foundation Patients in the San Francisco Bay Area?
I'd appreciate any feedback on the success of these types of
surgeries.

Sincerely,

Renée

I would appreciate it if you would list your symptoms.
-Howard

Renée Kenneth wrote:

> Hello,
> I've been diagnosed with a rare, "Nutcracker Esophagus", with a
> probable combination of Achalasia.  My symtoms are similar to the
> one's I read in this group.  Some not so severe, some slightly
> different.
> Has anyone heard of a "Nutcracker"?  Has anyone had the surgery, and
> would care to share the outcome?
> Any Kaiser Foundation Patients in the San Francisco Bay Area?
> I'd appreciate any feedback on the success of these types of
> surgeries.
>
> Sincerely,
>
> Renée
>
>