So Kelly, what was the blood you expelled several times?
 
Regards to your new bride and welcome her to the "Achalasia Wives Club." 
Having a supportive spouse cannot be downplayed at all. With this disease, the
support of your spouse is essentail, not just for someone you can talk to about
this, but someone who truly understands what this disease is all about, who can
wait alone at a table when you go off regurgitating for half an hour, who can
help get you more drinks when you need it, who helps you through socially
difficult situations.
 
My suggestion to you with the doctors is to ask a lot of questions (we have
posts on that), but I would specifically ask what the downside, if any, would
be, for you to have another balloon dilatation, before having another surgery. 
Good luck!
 
Richard


________________________________
From: heroldkelly <heroldkelly@...>
To: achalasia@yahoogroups.com
Sent: Wednesday, February 29, 2012 10:58 AM
Subject: [achalasia] Facing Second Myotomy


 
In 1992, I was diagnosed with achalasia, and had two balloon dilitations before
having my first myotomy in June of 1993. I was 18 years old at the time, and
this was before they did laparoscopic myotomies, so I had a nice big incision
across the left side of my back. This was done by Dr. Trastek, of Mayo Clinic in
Rochester, MN.

After the first myotomy, we found that I lost peristalsis in the bottom 2/3 of
my esophagus and since then I have had to do what many probably have done, drink
a lot of water to push my food through.

Last week I started feeling dizzy and felt like I had food caught again, and it
wouldn't go down, so I ended up expelling it, only it wasn't food, it was
bright, red blood. This happened twice and I headed to the hospital with my new
wife. After three days in the hospital and three upper GI endoscopies, they
determined tat I need to have another myotomy. I am meeting with the surgeon
(Dr. Kothari, from Gundersen Lutheran, La Crosse, WI) on the 12th. I am really
curious what other people have seen with having a 2nd myotomy done. Especially
after having had one done so long ago. I would guess that laparoscopic isn't an
option and that this is going to be a tricky surgery, but I am trying to calm my
lovely new bride's fears.

Any help would be appreciated, and feel free to email me directly if you like!

Thanks,
Kelly Herold
Buffalo City, WI




[Non-text portions of this message have been removed]

Hi Pippa.  I miss you!
 
Richard


________________________________
From: manchesterpippa <manchesterpippa@...>
To: achalasia@yahoogroups.com
Sent: Wednesday, February 29, 2012 11:05 AM
Subject: [achalasia] FAO Notan - GTN Spray


 
Notan can I ask in your research for chest pains, (Spasms) is GTN spray as good
as Nifedipine?

I had Nifedipine when I was in hospital (in 2006) and all it did was give me a
chronic headache so can't take that so been prescribed a GTN spray, is there any
other medication that can be used? Have been warned that the GTN spray may drop
my blood pressure and make me light headed but should work on the spasm within
seconds.

Pippa




[Non-text portions of this message have been removed]

I have a bottle of spray in my cupboard that I am scared to use...
Sent from my CrackBerry® powered by Virgin Mobile.

-----Original Message-----
From: "manchesterpippa" <manchesterpippa@...>
Sender: achalasia@yahoogroups.com
Date: Wed, 29 Feb 2012 16:05:00
To: <achalasia@yahoogroups.com>
Reply-To: achalasia@yahoogroups.com
Subject: [achalasia] FAO Notan - GTN Spray

Notan can I ask in your research for chest pains, (Spasms) is GTN spray as good
as Nifedipine?

I had Nifedipine when I was in hospital (in 2006) and all it did was give me a
chronic headache so can't take that so been prescribed a GTN spray, is there any
other medication that can be used?  Have been warned that the GTN spray may drop
my blood pressure and make me light headed but should work on the spasm within
seconds.

Pippa




[Non-text portions of this message have been removed]

I would like to say a special hello to the wonderful people here who supported
me during my HM in May 2006.
 
I have had achalasia for at least 20 years. It is difficult to put a starting
date on this disorder. I had no treatment up till that date and I want the new
people here to know that the surgery, when done well, can make an amazing
difference.
 
I stayed with the Group for 5 years, then started to be a passive member,
reading the posts from the members that I know well. This was for the very best
of reasons. I now have a 13month old granddaughter, Amy, who is the light,
delight of and reason for my life. I spend as much time with her as possible and
did not know how much love my heart could hold till she came along.
 
I continue to be very well. I have a full social life, eating out without any
nervousness or fear, and eat normal portions at home, so normal that I now have
to watch my weight! Having that surgery was one of the best decisions I have
ever made. I always have a glass of water by my plate and end with a large mug
of tea, which helps to swish everything down. I take 20mg of omeprazole every
evening. And if I miss a dose I can expect to get heartburn, which is not good
news when you have the kind of messed-up oesophagus that I managed to develop by
my delay in getting help.
 
I see that Notan and Richard continue to be the gurus of the Group and send them
both my love. Also to Martin, the man who restored me to myself and who is so
generous in his support to all-comers. Also to Pippa, my homeland friend and the
names from the past - Sandy, Michelle, Kathie, Maggie, Andy, Tim and anyone who
remembers me.
 
With much love to Achalasians everywhere on this special day, from Ann in the
UK.XXXXX

[Non-text portions of this message have been removed]

Sorry for the "dial action" my iPad changed the word, which, of course, was
dilation. Leigh underwent diagnostic every year. She was put on all the
medications mentioned in this group, with no positive effects. In the end, she
was always in pain, spasms were continuous. Gastro guys could offer nothing. Her
heller was still open, it was the spasms that were debilitating, with no relief.
Dr rosemurgy offered to remove the esophagus and told us with the surgery she
would have, not a normal life, but one in which she wouldn't be in constant pain
anymore. We also tried to wait for a cure, or replacement for her damaged
esophagus. But she had been so sick for so long, we left the decision to remove
the esophagus with Leigh who was two weeks shy of her 18th birthday at the time.
We supported her decision to remove the organ that had made her young life so
hard for so long. Will we regret this decision down the road? I pray not. But
this disease had taken so much from our child, this seemed like the only hopeful
choice. She is 5months post surgery today. She is driving, going to college and
living a much more normal life. Her digestive system has become sensitive to
gluten due to the changes, but other then that, she can swallow and has NO
Spasms anymore. I am not sure what the future will bring. I hope for a pain free
future for both out children.
--- In achalasia@yahoogroups.com, "Pahrump2009" <vizionx@...> wrote:
>
> So in doing that procedure does that eliminate the "pipe" altogether?
>
> I just read through your other post to Phil from Miami.
>
> I am curious what are "dial actions"? and in Leigh's case were they just
waiting for it to get better and it never did, and is that what lead to the
esophageal removal? or did they just want to wait for her to mature and you knew
that would be the eventual outcome?
>
> Recently I have read about them growing a tracheal tube from stem cells in
Denmark, which could also be applied to reconstructing the esophagus and
bladder. I know our government is preventing us from researching that direction
now but I am hopeful for the future.
>
> http://www.cbsnews.com/8301-504763_162-20077828-10391704.html
> http://www.eurekalert.org/pub_releases/2004-02/uow-scf021704.php
>
> Also I am curious about Acell technology (the stuff that grew the finger on
the guy that cut it off). It seems that that could be a direction as well, they
were stating that placed next to dead nerves it could possible grow them back.
>
> http://www.youtube.com/watch?v=3njZkP_3N48
>
> I am glad to hear your daughter is doing well and in college. Not easy choices
to make, I am sure along the way, but reading her story give me hope as well.
Thank you.
>
> -Chris
>
> --- In achalasia@yahoogroups.com, Helene Stovall <stovall.h@> wrote:
> >
> > Her stomach was pulled up and attached in the throat area, dr rosemurgy has
a similar surgery on YouTube, along with his other surgeries. My daughter was
diagnosed with end stage achalasia.
> >
> > Sent from my iPad
> >
>

>What were the factors in the determination of
>1) Achalasia

We went into the hospital in Oct this year, Natalie had been spitting up white,
frothy, bubbly phlegm since she was 1, but the episodes would last a minute or 2
and ANY doctor that we would take her to would do a well check and say to keep
an eye on her(she was never diagnosed till Oct this year). This last choking
episode she went limp, eyes rolled back, then started turning blue as I did
mouth to mouth, finger swipes, and bounced her over my shoulder to try and
dislodge anything. She then went stiff as a board, her jaw locked, and she lost
her bowel content on me. I thought I lost her. I continued to work on her and
the obstruction passed and she started breathing again, just as the paramedics
pulled up.

My thought after we took her into the hospital in 2007 and the let her go home
after 9 days was that she might have a fistula that was trapping saliva causing
the white frothy bubbly phlegm... they would go in and stitch it up and we would
be home. I never dreamed it could be Achalasia.

Doctors scoped her in the hospital and saw her esophagus was enlarged 4x the
size and then did a CT scan to determine the walls of the esophagus was 1"
thick. They did a barium swallow study and the speech pathologist took it
further to look at the lower esophagus and the liquid "bobbed" right above the
Lower Esophageal sphincter.

They were going to send us to Stanford to have a manometry done, but it was so
enlarged they determined it was unnecessary.

>2) Tracheal Malacia

Her ENT and Pulmonologist scoped her and while lying flat on the table the
trachea was 98 percent closed. Now after she has had the tracheotomy she is
still half mooned past the tube.

>3) Mega-Esophagus

Due to the size of her esophagus on the CT scan it was as big or bigger than her
stomach according to her doctors.

After the heller miotomy and partial fundoplycation she was throwing up 8x a
shift at the hospital. Since we brought her home it has only been once every
morning and maybe a couple of times in the day if they up her feeds, which they
are doing to transition for J tube feedings to G tube feedings, then hopefully
getting transitioning bolus feeds.

-Chris

Hi, Tamiko

Tamiko wrote:
>
> ...  More importantly, you HAVE to take children to pediatric
> specialists. They have to be seen and treated at pediatric hospitals
> by doctors who see a lot of a certain kind of patient.
>

It is hard with achalasia and children because it can first be hard to
find a surgeon who treats lots of achalasia patients and then to try to
find one that treats children. Sometime you can find the achalasia
expert who works with a pediatric surgeon and as a team they get it done.

notan



[Non-text portions of this message have been removed]

Hi, Pippa. Nice to hear from you and that you are doing well.

notan

Pahrump2009 wrote:
>
> So in doing that procedure does that eliminate the "pipe" altogether?
>

An "ectomy" may remove only some or as much as possible. Often they
leave just a "stump" in the neck to reconnect to. Pulling the stomach up
is called a gastric pull-up. When they do that they remodel the stomach
into a tube and then pull it up and connect it to the stump.

>
> I am curious what are "dial actions"?
>

I believe that should have been dilatations. That is where a balloon or
another device is used to stretch the muscles of the Lower Esophageal
Sphincter (LES) until muscle fibers in it break. That weakens the LES
and reduces the pressure it makes so food can get past it easier.

> Recently I have read about them growing a tracheal tube from stem
> cells in Denmark, which could also be applied to reconstructing the
> esophagus and bladder.
>

We have had some discussions about this kind of thing. First, it is only
experimental. You would have to get into an experimental program. The
cells they use may be "processed" No one know what the long-term results
of those processes will be on the cells produced. Sometimes you don't
know what changes do to cells for decades. When children swallow lye the
damage to the esophagus leads to a risk for cancer but that cancer does
not show up until decades later. The tracheal is a less complex tube
than the esophagus. For this kind of thing to work as a normal esophagus
the nerves to the muscles would have to connect and function normally.
If you grow it outside the body how do make the connections? If you
don't you just get a tube. You can do that by gastric pull-up or by
using some intestine or colon and not have to worry about what those
processed cells are going to do. Most of the use of this kind of thing
is going to be in situations where there is no other option. Don't
expect it to generally be the standard solution for years to come.

> I know our government is preventing us from researching that direction
> now but I am hopeful for the future.
>

Actually it doesn't, and that is a common misconception. No federal law
has ever banned any kind of stem cell research in the United States.
Federal law did restrict federal funding for embryonic stem-cell
research. Private funding continued to fund whatever it wanted in
stem-cells. The story you link to says the cells used were the
"patient's own." He wasn't embryotic so this would have nothing to do
with embryonic stem-cell or laws related to them. The second link was
about researchers at the University of Washington doing research with
adult stem-cells.
>
>
> http://www.cbsnews.com/8301-504763_162-20077828-10391704.html
> http://www.eurekalert.org/pub_releases/2004-02/uow-scf021704.php
>

Here are some other stories you may find interesting.

Forest University in North Carolina
Doctors grow organs from patients' own cells
http://www.cnn.com/2006/HEALTH/conditions/04/03/engineered.organs/index.html
Growing Body Parts - 60 Minutes story
http://www.cbsnews.com/stories/2010/07/21/60minutes/main6698375.shtml

University of Washington, Seattle, USA
Development of an esophagus acellular matrix tissue scaffold.
http://www.ncbi.nlm.nih.gov/pubmed/16548690
Crosslinking of an oesophagus acellular matrix tissue scaffold.
http://www.ncbi.nlm.nih.gov/pubmed/18618611

Johns Hopkins University School of Medicine, Baltimore, MD, USA
Microelastic properties of lung cell-derived extracellular matrix
http://www.ncbi.nlm.nih.gov/pubmed/20656080

University of Pittsburgh
Esophageal Tissue Engineering
http://www.mirm.pitt.edu/badylak/projects/Esophageal_Tissue_Engineering.asp
Persistence earned new esophagus
http://assets.mediaspanonline.com/prod/4596864/06-10-2010_C-05.pdf
"Doctors removed about 6 inches of his esophageal lining and then put in
the scaffolding tissue from a pig's bladder, known as the extracellular
matrix."

While all that is a ways away from growing a complete and fully
functional esophagus it does show that such research is being done and
done here in the US. Just don't hold your breath waiting for it.

>
> Also I am curious about Acell technology (the stuff that grew the
> finger on the guy that cut it off). It seems that that could be a
> direction as well, they were stating that placed next to dead nerves
> it could possible grow them back.
>

Could be part of the answer.

notan




[Non-text portions of this message have been removed]

Something that occurred to me ..

Was she tested for Scleroderma?
Carolyn






--- On Wed, 2/29/12, Pahrump2009 <vizionx@...> wrote:

From: Pahrump2009 <vizionx@...>
Subject: [achalasia] Re: Mom of Natalie
To: achalasia@yahoogroups.com
Date: Wednesday, February 29, 2012, 9:05 AM
















 









       >What were the factors in the determination of

>1) Achalasia



We went into the hospital in Oct this year, Natalie had been spitting up white,
frothy, bubbly phlegm since she was 1, but the episodes would last a minute or 2
and ANY doctor that we would take her to would do a well check and say to keep
an eye on her(she was never diagnosed till Oct this year). This last choking
episode she went limp, eyes rolled back, then started turning blue as I did
mouth to mouth, finger swipes, and bounced her over my shoulder to try and
dislodge anything. She then went stiff as a board, her jaw locked, and she lost
her bowel content on me. I thought I lost her. I continued to work on her and
the obstruction passed and she started breathing again, just as the paramedics
pulled up.



My thought after we took her into the hospital in 2007 and the let her go home
after 9 days was that she might have a fistula that was trapping saliva causing
the white frothy bubbly phlegm... they would go in and stitch it up and we would
be home. I never dreamed it could be Achalasia.



Doctors scoped her in the hospital and saw her esophagus was enlarged 4x the
size and then did a CT scan to determine the walls of the esophagus was 1"
thick. They did a barium swallow study and the speech pathologist took it
further to look at the lower esophagus and the liquid "bobbed" right above the
Lower Esophageal sphincter.



They were going to send us to Stanford to have a manometry done, but it was so
enlarged they determined it was unnecessary.



>2) Tracheal Malacia



Her ENT and Pulmonologist scoped her and while lying flat on the table the
trachea was 98 percent closed. Now after she has had the tracheotomy she is
still half mooned past the tube.



>3) Mega-Esophagus



Due to the size of her esophagus on the CT scan it was as big or bigger than her
stomach according to her doctors.



After the heller miotomy and partial fundoplycation she was throwing up 8x a
shift at the hospital. Since we brought her home it has only been once every
morning and maybe a couple of times in the day if they up her feeds, which they
are doing to transition for J tube feedings to G tube feedings, then hopefully
getting transitioning bolus feeds.



-Chris



























[Non-text portions of this message have been removed]

Kelly wrote:
>
> ... Especially after having had one done so long ago. I would guess
> that laparoscopic isn't an option and that this is going to be a
> tricky surgery, but I am trying to calm my lovely new bride's fears.
>

It depends. Some surgeons will start with lap and change to open if they
need to. It probably depends too on the surgeon. I hope he has done a
lot of these.

notan



[Non-text portions of this message have been removed]

> Was she tested for Scleroderma?
> Carolyn

no, she was not. Reading about it now.

-Chris

Richard I miss you too will catch up with you in an email.

The one thing I do want to say here is how fantastic the members here in this
group are the amount of support I got from this group and my Achalasia family
(you know who you are!) really helped me through what was at times a frightening
experience and feeling of dread and worry.

Richard your emails every morning kept me going while I was waiting for my
surgery and the weeks afterwards Ann, Martin, Maggie, Notan Carolyn, Tim,
Isabelle you were such a support and still are when I ask for your help advice.
So a very very big thank you to you all, you probably don't realise just how
much you have and do mean to me.

Pippa x

--- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@...> wrote:
>
> Hi Pippa.  I miss you!
>  
> Richard
>
>
> ________________________________
> From: manchesterpippa <manchesterpippa@...>
> To: achalasia@yahoogroups.com
> Sent: Wednesday, February 29, 2012 11:05 AM
> Subject: [achalasia] FAO Notan - GTN Spray
>
>
>  
> Notan can I ask in your research for chest pains, (Spasms) is GTN spray as
good as Nifedipine?
>
> I had Nifedipine when I was in hospital (in 2006) and all it did was give me a
chronic headache so can't take that so been prescribed a GTN spray, is there any
other medication that can be used? Have been warned that the GTN spray may drop
my blood pressure and make me light headed but should work on the spasm within
seconds.
>
> Pippa
>
>
>
>
> [Non-text portions of this message have been removed]
>

Pippa wrote:
>
> ... is GTN spray as good as Nifedipine?
>

Glyceryl trinitrate (GTN) is an alternative name for the chemical
nitroglycerin. GTN can cause severe headaches and drops in blood
pressure. You won't know until you try it. GTN is a nitrate while
Nifedipine is a calcium-channel blocker. They are in different classes
of drugs but the headache from either could be because of blood pressure
and blood vessel issues. Both are known to work for some people with
spasm pain but not for everyone. The spry version should work very fast.
You may want to be sitting down. There are a number of drugs that can be
used. I started working on a message about this last summer before my
accident and I just have never gotten around to finishing it. For no
good reason I find it hard to work on old stuff.  I will post some of it
here but understand that it is just a draft of ongoing work and may have
some errors. Toward the bottom are some things that just look like a
mess. These are notes to myself about things I want to look up and
expand on.

=========================================================================


There are true spasms which are constrictions of the esophageal muscles.
Spasms are a type of Non Cardiac Chest Pain (NCCP), but not all the
NCCPs we have are spasms. The muscles spasming are probably smooth
muscles but there is another type of muscles in the esophagus too. NCCPs
could also be from nerve dysfunction, esophagitis, and even acid reflux.
There are also other sources of identical pain that may have nothing to
do with achalasia.

For true spasms drugs that affect muscles are often prescribed, including:

Calcium-Channel Blockers (CCBs)
Anticholinergics
Nitrates
Other types of muscle relaxers


Sometimes NCCPs are treated by drugs that affect nerve functions for the
perception of pain, including:

Antidepressants
Anticonvulsants
Narcotics

If the source of, or a contributing factor of,  NCCPs and spasms is
known or suspected to be acid reflux or esophagitis medication to treat
those conditions may be used, including:

PPIs
H2 blocker

Here is some information on the types of medications listed above, but
it isn't meant to be comprehensive. The dosages listed are generally for
other uses and not specific to treating spasms and may not be
appropriate. Where I could find a message from this support group where
someone indicated how much they used I include that amount.

Calcium-Channel Blockers (CCBs)
===========================================
CCBs relax (to some extent) smooth muscles. They are most commonly used
to treat high blood pressure and angina because the blood vessels and
heart have smooth muscles. Because they relax smooth muscles they also
relax the smooth muscles of the esophagus. When relaxing the esophagus
they can also cause low blood pressure, affect heart rate, cause head
aches and relax muscles in other parts of the body especially in the
gut. Often these effects are not noticeable, or only happen at first,
but with the more powerful ones head aches are a common problem. The
benefit of CCBs for spasms and to relax the LES seem to diminish with
use over time. Here are some of the CCBs used for spasms:

Iproveratril Hydrochloride (Calan, Covera, Isoptin and Verapamil) :
Comes in regular and extended release forms. The regular form works for
3 to 4 hrs. The extended release form is taken once or twice a day. The
extend form would be to prevent spasms and the regular form would be to
stop one that has started. Sometimes it is also used before meals to
relax and open the LES. Do not crush, but you can open the capsules
forms.  Half-life 2.8-7.4 hours. Dose 2.5 to 400 mg. Use of 120 mg
reported in this support group.

Nifedipine (Adalat, Cordipin, Nifediac, Nifedical, and Procardia): Is
fast acting with strong side effects. Intense head ache is often
reported. It comes in extended release tablets, immediate release
capsules. Immediate release forms may also be used sublingually. Use the
immediate release forms to stop a spasm that has started. Also used
before meals to relax and open the LES. Dose 10 to 90 mg. 30mg extended
release use was reported in this group, but most people in this group
report using it immediate release sublingually. half-life is 7 hrs
(extended release) and 2 hrs (immediate release).

Diltiazem (Cardizem, Cartia, Dilacor,  Dilt, Diltia, Diltzac, Matzim,
Taztia, Tiamate, Tiazac and more) not to be confused with Diazepam.
Diltiazem comes in regular and extended-release  forms. Usage is similar
to the other CCBs. Dose 30 to 420 mg. 90 mg twice or three times per day
was reported in this support group. Half-life 3-4.5 hours.

===========================================

Nitrates
===========================================
Nitrates are converted to nitric oxide (NO) in the body. Some of the
nerves that are damaged and destroyed in achalasia use NO as a
neurotransmitter to signal relaxation of the smooth muscles in the lower
esophagus and LES. Nitrates provide the NO for the relaxation signal
that the damaged nerves can not. Smooth muscles throughout the body use
NO this way causing nitrates to have a lot of side effect. With
long-term use the side effects often diminish or disappear, but the
esophageal benefit often diminishes too.

Isosorbide dinitrate  (Cedocard, Dilatrate, ISDN, Isordil, Isotrate,
Sorbitrate, )
Half-life 1 hour.

Isosorbide mononitrate  (Chemydur, ISMO, Isosorb Mono, Monit,  Monosorb,
Monotrate, Solotrate)
Half-life 5 hours.

Nitroglycerin or Glyceryl Trinitrate (Nitrospan, Nitrostat, Nitrol, and
Tridil - patches as: Trinipatch, Transderm Nitro, Nitro-Dur - sublingual
as: Nitrolingual Pump Spray, Natispray, and NitroMist)  Nitroglycerin
comes in forms of tablets, sprays or patches.
Half-life 3 minutes.
===========================================

Anticholinergics
===========================================
Anticholinergics are a type of antispasmodic that blocks the
neurotransmitter acetylcholine. The contraction of muscles in the
esophagus, and other parts of the body are triggered by nerves that use
the neurotransmitter acetylcholine to signal the contractions. Spasms
and pressure at the LES are the result of contracting muscles.  As the
signals for these contraction are reduced the strength and pressure of
them is also reduced. The contraction of peristalsis are also signaled
this way so anticholinergics also effect peristalsis, other GI motility
and contractions in other parts of the body.

Donatal

Dicyclomine or Dicycloverine (Byclomine, Bentyl, Dibent, Di-Spaz,
Dilomine, Bentylol, Formulex,  Lomine, Merbentyl, Spasmo) (also
Kolanticon, in the UK, which also contains an anti-foaming agent and two
antacids) Half-life 5 hrs.

Hyoscamine

Hyoscyamine (Symax, HyoMax, Anaspaz, Buwecon, Cystospaz, Levsin, Levbid,
Levsinex, Donnamar, NuLev (or Nu-Lev), Spacol, Neoquess)
Levsin is available in sublingual tablets

Mebeverine (Colofac, Duspatal, Duspatalin) Mebeverine is a muscolotropic
spasmolytic which means it affects acetylcholine  and muscles
differently than some of the other anticholinergic antispasmodics. The
effects are much more selective to smooth muscles of the gut than other
anticholinergics that affect many parts of the body and nervous system.

Promethazine of the Phenothiazine family. (Phenergan)
It is an antihistamine. That may reduce some inflammation in the
esophagus and calm it down. It is also an antiemetic (prevents nausea
and motion sickness) so it acts on part of the nervous system that
responds to stimulus in the stomach, and esophagus. It is also an
anticholinergic which means it calms muscles and weakens spasms. It is
also a strong sedative. It is also a weak antipsychotic so if achalasia
is driving you nuts maybe it helps.


===========================================

Other types of muscle relaxers (Antispasmodics)
===========================================
For achalasia this usually means benzodiazepines, such as diazepam.
Benzodiazepines increase the action of the neurotransmitter
gamma-aminobutyric acid (GABA). Among other things GABA does is it
increase the action of the nerves that relax the smooth muscles of the
esophagus and LES. Benzodiazepines make GABA act even stronger to relax
the smooth muscles.

Diazepam

Cyclobenzaprine (Flexaril) Works for some and not for others in our
group. Can make you sleepy.

Lorazepam
1mg - 2.5 reported

===========================================

Antidepressants
===========================================
===========================================

Anticonvulsants
===========================================
===========================================

Narcotics
===========================================
Dilaudid

Paregoric
A weak opium based drug. The formulation and strength differ by country.
===========================================
PPIs and H2 blockers
===========================================
===========================================

Diazepam comes as a tablet, extended-release (long-acting) capsule, and
concentrate (liquid)

Levsin is available in sublingual tablets

Medalolam

vicodin 500mg
Ordine

Other common spasmolytic agents include: methocarbamol, carisoprodol,
chlorzoxazone, cyclobenzaprine, gabapentin, metaxalone, and orphenadrine.
Spasmolytics like carisoprodol, cyclobenzaprine, metaxalone,
methocarbamol, tizanidine

beta-blockers,
beta-adrenergic agonists (carbuterol, terbutaline, cimetropium bromide),
nitroglycerine, and theophylline (aminophylline)

Levbid
verapamil

oxycontine
diladid


Librax
Zelnorm
Trazadone

Medazalam

Paxil, Ativan, Nortryptaline

imipramine

Imdur

Glycocarn

Propulsives





[Non-text portions of this message have been removed]

6+ Years Post Myotomy and Doing Fine!

No one eating with me can tell there is anything wrong with my eating,
unless it is that I now eat faster than others.  I eat whatever I want.
I almost never have spasms and achalasia rarely bothers me at night. I
do avoid eating to soon before bed, but usually I don't need much time
before bed.

I had swallowing problems going back to childhood. I don't know for sure
if it was achalasia related all those years ago because I was not tested
then. In fact I didn't tell my doctor I had a problem until I was in my
forties. I don't know why I got by without surgery that long or way
others can't. We are all different. Over the years I learned to feel it
happening and would leave a table before others could notice something
was wrong. I always looked to see where the restrooms were before
eating. I told my doctor about the problem and got the surgery because
it was getting to hard to deal with and hide. Hard to get to those
restrooms fast enough. Seems like a bad dream now.

Had some great times with this support group through it all.

notan

Ann wrote:
>
> ...  I now have a 13month old granddaughter, Amy, who is the light,
> delight of and reason for my life. ..
>

Wonderful. Life is still there waiting for us. Good reason to get the
best treatment we can.

notan




[Non-text portions of this message have been removed]

Thank you

Once again Notan you have come up with some great information (not sure where
half of us would be without your vast knowledge)

I have printed off your message so that I can keep it to hand and read through
it all very carefully.

I forgot to mention earlier and you also added it in the informaion that some
antidepresants can help with spasms. I am already on 35mg of Amitriptyline for
trigeminal nuralgia. I had heard that a low dose of this can help with spasms.
Maybe I am on a higher dose than is used for spasms. What might be interesting
is that I have only had two episodes of spasms and that has been while take the
Amitriptyline! Could it be a coincidence or linked??

I read your post to Richard its good to hear that you are on the mend.

Pippa x

Notan
Great information, I printed it out in case I ever need it.

When my A started 5 years I got spasms, but very rarely now. My secret today is
Magnesium and butter.

When I get them it is at lunch, when food is in the e, once I clear the food out
with a Coke , they go away. Never at night.

What I wonder if they "only start" while food is in the e?
Any comments on this? I work hard on cleaning out the e.

Yes I was desperate at times and considered ending it all, but my wife of 58
years was very precious to me.

I am so sorry for all the kids who get this terrible disease. It is so hard to
read.

Ray


--- In achalasia@yahoogroups.com, notan ostrich <notan_ostrich@...> wrote:
>
> Pippa wrote:
> >
> > ... is GTN spray as good as Nifedipine?
> >
>
> Glyceryl trinitrate (GTN) is an alternative name for the chemical
> nitroglycerin. GTN can cause severe headaches and drops in blood
> pressure. You won't know until you try it. GTN is a nitrate while
> Nifedipine is a calcium-channel blocker. They are in different classes
> of drugs but the headache from either could be because of blood pressure
> and blood vessel issues. Both are known to work for some people with
> spasm pain but not for everyone. The spry version should work very fast.
> You may want to be sitting down. There are a number of drugs that can be
> used. I started working on a message about this last summer before my
> accident and I just have never gotten around to finishing it. For no
> good reason I find it hard to work on old stuff.  I will post some of it
> here but understand that it is just a draft of ongoing work and may have
> some errors. Toward the bottom are some things that just look like a
> mess. These are notes to myself about things I want to look up and
> expand on.
>
> =========================================================================
>
>
> There are true spasms which are constrictions of the esophageal muscles.
> Spasms are a type of Non Cardiac Chest Pain (NCCP), but not all the
> NCCPs we have are spasms. The muscles spasming are probably smooth
> muscles but there is another type of muscles in the esophagus too. NCCPs
> could also be from nerve dysfunction, esophagitis, and even acid reflux.
> There are also other sources of identical pain that may have nothing to
> do with achalasia.
>
> For true spasms drugs that affect muscles are often prescribed, including:
>
> Calcium-Channel Blockers (CCBs)
> Anticholinergics
> Nitrates
> Other types of muscle relaxers
>
>
> Sometimes NCCPs are treated by drugs that affect nerve functions for the
> perception of pain, including:
>
> Antidepressants
> Anticonvulsants
> Narcotics
>
> If the source of, or a contributing factor of,  NCCPs and spasms is
> known or suspected to be acid reflux or esophagitis medication to treat
> those conditions may be used, including:
>
> PPIs
> H2 blocker
>
> Here is some information on the types of medications listed above, but
> it isn't meant to be comprehensive. The dosages listed are generally for
> other uses and not specific to treating spasms and may not be
> appropriate. Where I could find a message from this support group where
> someone indicated how much they used I include that amount.
>
> Calcium-Channel Blockers (CCBs)
> ===========================================
> CCBs relax (to some extent) smooth muscles. They are most commonly used
> to treat high blood pressure and angina because the blood vessels and
> heart have smooth muscles. Because they relax smooth muscles they also
> relax the smooth muscles of the esophagus. When relaxing the esophagus
> they can also cause low blood pressure, affect heart rate, cause head
> aches and relax muscles in other parts of the body especially in the
> gut. Often these effects are not noticeable, or only happen at first,
> but with the more powerful ones head aches are a common problem. The
> benefit of CCBs for spasms and to relax the LES seem to diminish with
> use over time. Here are some of the CCBs used for spasms:
>
> Iproveratril Hydrochloride (Calan, Covera, Isoptin and Verapamil) :
> Comes in regular and extended release forms. The regular form works for
> 3 to 4 hrs. The extended release form is taken once or twice a day. The
> extend form would be to prevent spasms and the regular form would be to
> stop one that has started. Sometimes it is also used before meals to
> relax and open the LES. Do not crush, but you can open the capsules
> forms.  Half-life 2.8-7.4 hours. Dose 2.5 to 400 mg. Use of 120 mg
> reported in this support group.
>
> Nifedipine (Adalat, Cordipin, Nifediac, Nifedical, and Procardia): Is
> fast acting with strong side effects. Intense head ache is often
> reported. It comes in extended release tablets, immediate release
> capsules. Immediate release forms may also be used sublingually. Use the
> immediate release forms to stop a spasm that has started. Also used
> before meals to relax and open the LES. Dose 10 to 90 mg. 30mg extended
> release use was reported in this group, but most people in this group
> report using it immediate release sublingually. half-life is 7 hrs
> (extended release) and 2 hrs (immediate release).
>
> Diltiazem (Cardizem, Cartia, Dilacor,  Dilt, Diltia, Diltzac, Matzim,
> Taztia, Tiamate, Tiazac and more) not to be confused with Diazepam.
> Diltiazem comes in regular and extended-release  forms. Usage is similar
> to the other CCBs. Dose 30 to 420 mg. 90 mg twice or three times per day
> was reported in this support group. Half-life 3-4.5 hours.
>
> ===========================================
>
> Nitrates
> ===========================================
> Nitrates are converted to nitric oxide (NO) in the body. Some of the
> nerves that are damaged and destroyed in achalasia use NO as a
> neurotransmitter to signal relaxation of the smooth muscles in the lower
> esophagus and LES. Nitrates provide the NO for the relaxation signal
> that the damaged nerves can not. Smooth muscles throughout the body use
> NO this way causing nitrates to have a lot of side effect. With
> long-term use the side effects often diminish or disappear, but the
> esophageal benefit often diminishes too.
>
> Isosorbide dinitrate  (Cedocard, Dilatrate, ISDN, Isordil, Isotrate,
> Sorbitrate, )
> Half-life 1 hour.
>
> Isosorbide mononitrate  (Chemydur, ISMO, Isosorb Mono, Monit,  Monosorb,
> Monotrate, Solotrate)
> Half-life 5 hours.
>
> Nitroglycerin or Glyceryl Trinitrate (Nitrospan, Nitrostat, Nitrol, and
> Tridil - patches as: Trinipatch, Transderm Nitro, Nitro-Dur - sublingual
> as: Nitrolingual Pump Spray, Natispray, and NitroMist)  Nitroglycerin
> comes in forms of tablets, sprays or patches.
> Half-life 3 minutes.
> ===========================================
>
> Anticholinergics
> ===========================================
> Anticholinergics are a type of antispasmodic that blocks the
> neurotransmitter acetylcholine. The contraction of muscles in the
> esophagus, and other parts of the body are triggered by nerves that use
> the neurotransmitter acetylcholine to signal the contractions. Spasms
> and pressure at the LES are the result of contracting muscles.  As the
> signals for these contraction are reduced the strength and pressure of
> them is also reduced. The contraction of peristalsis are also signaled
> this way so anticholinergics also effect peristalsis, other GI motility
> and contractions in other parts of the body.
>
> Donatal
>
> Dicyclomine or Dicycloverine (Byclomine, Bentyl, Dibent, Di-Spaz,
> Dilomine, Bentylol, Formulex,  Lomine, Merbentyl, Spasmo) (also
> Kolanticon, in the UK, which also contains an anti-foaming agent and two
> antacids) Half-life 5 hrs.
>
> Hyoscamine
>
> Hyoscyamine (Symax, HyoMax, Anaspaz, Buwecon, Cystospaz, Levsin, Levbid,
> Levsinex, Donnamar, NuLev (or Nu-Lev), Spacol, Neoquess)
> Levsin is available in sublingual tablets
>
> Mebeverine (Colofac, Duspatal, Duspatalin) Mebeverine is a muscolotropic
> spasmolytic which means it affects acetylcholine  and muscles
> differently than some of the other anticholinergic antispasmodics. The
> effects are much more selective to smooth muscles of the gut than other
> anticholinergics that affect many parts of the body and nervous system.
>
> Promethazine of the Phenothiazine family. (Phenergan)
> It is an antihistamine. That may reduce some inflammation in the
> esophagus and calm it down. It is also an antiemetic (prevents nausea
> and motion sickness) so it acts on part of the nervous system that
> responds to stimulus in the stomach, and esophagus. It is also an
> anticholinergic which means it calms muscles and weakens spasms. It is
> also a strong sedative. It is also a weak antipsychotic so if achalasia
> is driving you nuts maybe it helps.
>
>
> ===========================================
>
> Other types of muscle relaxers (Antispasmodics)
> ===========================================
> For achalasia this usually means benzodiazepines, such as diazepam.
> Benzodiazepines increase the action of the neurotransmitter
> gamma-aminobutyric acid (GABA). Among other things GABA does is it
> increase the action of the nerves that relax the smooth muscles of the
> esophagus and LES. Benzodiazepines make GABA act even stronger to relax
> the smooth muscles.
>
> Diazepam
>
> Cyclobenzaprine (Flexaril) Works for some and not for others in our
> group. Can make you sleepy.
>
> Lorazepam
> 1mg - 2.5 reported
>
> ===========================================
>
> Antidepressants
> ===========================================
> ===========================================
>
> Anticonvulsants
> ===========================================
> ===========================================
>
> Narcotics
> ===========================================
> Dilaudid
>
> Paregoric
> A weak opium based drug. The formulation and strength differ by country.
> ===========================================
> PPIs and H2 blockers
> ===========================================
> ===========================================
>
> Diazepam comes as a tablet, extended-release (long-acting) capsule, and
> concentrate (liquid)
>
> Levsin is available in sublingual tablets
>
> Medalolam
>
> vicodin 500mg
> Ordine
>
> Other common spasmolytic agents include: methocarbamol, carisoprodol,
> chlorzoxazone, cyclobenzaprine, gabapentin, metaxalone, and orphenadrine.
> Spasmolytics like carisoprodol, cyclobenzaprine, metaxalone,
> methocarbamol, tizanidine
>
> beta-blockers,
> beta-adrenergic agonists (carbuterol, terbutaline, cimetropium bromide),
> nitroglycerine, and theophylline (aminophylline)
>
> Levbid
> verapamil
>
> oxycontine
> diladid
>
>
> Librax
> Zelnorm
> Trazadone
>
> Medazalam
>
> Paxil, Ativan, Nortryptaline
>
> imipramine
>
> Imdur
>
> Glycocarn
>
> Propulsives
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Ray wrote:
>
>  My secret today is Magnesium and butter.
>

Thanks for the info.

> I am so sorry for all the kids who get this terrible disease. It is so
> hard to read.
>

Yes, not rare enough.

notan



[Non-text portions of this message have been removed]

Thanks Richard, I didn't know you were allowed to crack this one open.  So many
tablets are supposed to get to the stomach first.
It's been 17 hours since my worst ever spasm so that's good.
Today I can try any food I want, but I am little scared in case I can't eat it. 
I am sure this happens to everyone after being on mushy food for so long.

Lindsay

--- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@...> wrote:
>
> Hi Lindsay,
>  
> I keep a little pill box in my pocket (holds about12 nidepine), and never
leave home without it. The moment I sense a spasm is about to start, I
immediately place a capsule under my tongue, let it dissolve (sometimes once it
softens will crack it open with my teeth), and most of the time it will stop the
spasm before it even has a chance to develop. While this is a reliable method
that I use, it appears that for the majority of us, it either does not help, or
the drop in blood pressure that may result from taking it causes dizziness. 
Other than drinking a carbonated beverage first, if available, it has been the
most reliable means of stopping spasms for me in the last 25 years.
>  
> If it does help you, there is another side benefit to taking it, in that it
relaxes the LES and makes it easier to have meals.
>  
> For both spasms and helping eating, I take it on a "when needed" basis only.
>  
> For "economic" purposes, nearly 10 years ago, I had it prescribed to me to
take 2 capsules a day, 3 times a day. The supply I accumulated that year was so
great, I am still working off of it. Imagine a prescription lasting 10 years
(yes, despite the age of the pills, it still is effective).
>  
> I really hope that you are once again able to eat normally plus get the spasms
under control.
>  
> Richard
>
>
> ________________________________
> From: lindsayaus <lindsay_kite@...>
> To: achalasia@yahoogroups.com
> Sent: Wednesday, February 29, 2012 1:59 AM
> Subject: [achalasia] Re: Dilation time......
>
>
>  
>
> Does anyone use nifedipine to help with spasms? Take it regularly or just when
you need it.
>
> I got a script for this when I first saw my doc but I don't like taking meds
unless I really have to. Today I had the worst (and longest) spasm ever, so I
rushed to the chemist to get the script filled. It was that bad I nearly
couldn't drive to pick my boys up from school.
> Will see how well it works.
>
> Lindsay
> --- In achalasia@yahoogroups.com, Kim Abrams <xploring37@> wrote:
> >
> > Hopefully with time it will get better!
> >  
> > Kim A
> >
> >
> > ________________________________
> > From: lindsayaus <lindsay_kite@>
> > To: achalasia@yahoogroups.com
> > Sent: Tuesday, February 28, 2012 2:34 AM
> > Subject: [achalasia] Re: Dilation time......
> >
> >
> >
> >  
> >
> > Been home for a few hours and so far had only a little general pain.
> >
> > Lindsay
> >
> > --- In achalasia@yahoogroups.com, "Jenn Gerrits" <adoptivemommy@> wrote:
> > >
> > > Good luck from snowy Canada :)
> > >
> > > Jenn
> > > Sent from my CrackBerry® powered by Virgin Mobile.
> > >
> > > -----Original Message-----
> > > From: "lindsayaus" <lindsay_kite@>
> > > Sender: achalasia@yahoogroups.com
> > > Date: Mon, 27 Feb 2012 21:31:54
> > > To: <achalasia@yahoogroups.com>
> > > Reply-To: achalasia@yahoogroups.com
> > > Subject: [achalasia] Dilation time......
> > >
> > > I am off in 30 minutes to get my first dilation. All my fingers and toes
are firmly crossed! Hope there's not too much extra pain in the first few days.
> > >
> > > Lindsay
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hi Lindsay,
 
I understand your apprehensions about eating.

To develop your confidence, just proceed at a very slow pace, even if you feel
you should take a sip after each bite.
Allow time for the food to go thru before taking your next bite. Your confidence
should develop as you see what you are presently capable of.  Before long you
will be smiling again as you see that life can be good.
 
Richard

________________________________
  From: lindsayaus <lindsay_kite@...>
To: achalasia@yahoogroups.com
Sent: Wednesday, February 29, 2012 6:18 PM
Subject: [achalasia] Re: Dilation time......



 

Thanks Richard, I didn't know you were allowed to crack this one open.  So many
tablets are supposed to get to the stomach first.
It's been 17 hours since my worst ever spasm so that's good.
Today I can try any food I want, but I am little scared in case I can't eat it. 
I am sure this happens to everyone after being on mushy food for so long.

Lindsay

--- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@...> wrote:
>
> Hi Lindsay,
>  
> I keep a little pill box in my pocket (holds about12 nidepine), and never
leave home without it. The moment I sense a spasm is about to start, I
immediately place a capsule under my tongue, let it dissolve (sometimes once it
softens will crack it open with my teeth), and most of the time it will stop the
spasm before it even has a chance to develop. While this is a reliable method
that I use, it appears that for the majority of us, it either does not help, or
the drop in blood pressure that may result from taking it causes dizziness. 
Other than drinking a carbonated beverage first, if available, it has been the
most reliable means of stopping spasms for me in the last 25 years.
>  
> If it does help you, there is another side benefit to taking it, in that it
relaxes the LES and makes it easier to have meals.
>  
> For both spasms and helping eating, I take it on a "when needed" basis only.
>  
> For "economic" purposes, nearly 10 years ago, I had it prescribed to me to
take 2 capsules a day, 3 times a day. The supply I accumulated that year was so
great, I am still working off of it. Imagine a prescription lasting 10 years
(yes, despite the age of the pills, it still is effective).
>  
> I really hope that you are once again able to eat normally plus get the spasms
under control.
>  
> Richard
>
>
> ________________________________
> From: lindsayaus <lindsay_kite@...>
> To: achalasia@yahoogroups.com
> Sent: Wednesday, February 29, 2012 1:59 AM
> Subject: [achalasia] Re: Dilation time......
>
>
>  
>
> Does anyone use nifedipine to help with spasms? Take it regularly or just when
you need it.
>
> I got a script for this when I first saw my doc but I don't like taking meds
unless I really have to. Today I had the worst (and longest) spasm ever, so I
rushed to the chemist to get the script filled. It was that bad I nearly
couldn't drive to pick my boys up from school.
> Will see how well it works.
>
> Lindsay
> --- In achalasia@yahoogroups.com, Kim Abrams <xploring37@> wrote:
> >
> > Hopefully with time it will get better!
> >  
> > Kim A
> >
> >
> > ________________________________
> > From: lindsayaus <lindsay_kite@>
> > To: achalasia@yahoogroups.com
> > Sent: Tuesday, February 28, 2012 2:34 AM
> > Subject: [achalasia] Re: Dilation time......
> >
> >
> >
> >  
> >
> > Been home for a few hours and so far had only a little general pain.
> >
> > Lindsay
> >
> > --- In achalasia@yahoogroups.com, "Jenn Gerrits" <adoptivemommy@> wrote:
> > >
> > > Good luck from snowy Canada :)
> > >
> > > Jenn
> > > Sent from my CrackBerry® powered by Virgin Mobile.
> > >
> > > -----Original Message-----
> > > From: "lindsayaus" <lindsay_kite@>
> > > Sender: achalasia@yahoogroups.com
> > > Date: Mon, 27 Feb 2012 21:31:54
> > > To: <achalasia@yahoogroups.com>
> > > Reply-To: achalasia@yahoogroups.com
> > > Subject: [achalasia] Dilation time......
> > >
> > > I am off in 30 minutes to get my first dilation. All my fingers and toes
are firmly crossed! Hope there's not too much extra pain in the first few days.
> > >
> > > Lindsay
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
> [Non-text portions of this message have been removed]
>




[Non-text portions of this message have been removed]

Hello everyone.

   On this day I would like to thank the group for all of the support given to me
and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of
10. He has had one Heller and 19 dilations. This summer he will have another
Heller to make it through his senior year. I usually read the post from my email
daily but I do not respond I like to know whats going on and keep up with the
new information.
  Take care,

Monicqua- Texas

Checking in late in the day on the 29th and saw the other posts.  For me, it
has been four years since my myotomy. 
 
I ended up at the Cleveland Clinic thanks to my Dad.  When I was diagnosed
with achalasia, he started calling for information.  (You don't mess with the
greatest generation!)  My Dad has since passed, but I will always be grateful
for his taking care of his little girl -- even if she is middle aged. 
 
Long story short, Dr. Rice did my myotomy.  Dr. Rice is also the person who
told me about this wonderful group. 
 
The dilation worked well for me.  I very rarely have difficulty with eating and
spasms are few.  I consider myself one of the luckiest people in the world.
 
My best wishes to everyone! 
 
Pam (Ohio)


________________________________
  From: notan ostrich <notan_ostrich@...>
To: achalasia@yahoogroups.com
Sent: Tuesday, February 28, 2012 4:38 PM
Subject: [achalasia] Rare Disease Day, February 29th



 

Tomorrow is Rare Disease Day, February 29th.

It would nice to get updates on the stories of people who have had
treatments, or not, and how it is working out for them. If you gave your
story last year consider updating it this year. People often ask how
things go long-term, or why are there so many failure stories on the
site. This is one way for people who don't have problems to chime in and
tell us how good you are doing and for some of those old timers to let
us know how the years have treated them.

Here are links to some of last year's updates.

Julee So Calif.
http://health.groups.yahoo.com/group/achalasia/message/60870

Ann from the UK
http://health.groups.yahoo.com/group/achalasia/message/60832

Donna
http://health.groups.yahoo.com/group/achalasia/message/60834

Michelle in NC
http://health.groups.yahoo.com/group/achalasia/message/60837

Mike in Cincinnati
http://health.groups.yahoo.com/group/achalasia/message/60844

Me
http://health.groups.yahoo.com/group/achalasia/message/60846

Isabella
http://health.groups.yahoo.com/group/achalasia/message/60849

Andrea from LA
http://health.groups.yahoo.com/group/achalasia/message/60792

notan




[Non-text portions of this message have been removed]

Hello Monicqua, Hope your son is doing well, I don't know if you ever looked at,
or visited with the doc's we sent you last year.... I remember this one..

Hope you are doing well.

Carolyn
mom to Cameron

Re: Esophageal Disease Center in Houston - Texas Open House
 





http://www.memorialhermann.org/locations/southeast/edc/achalasia.aspx





Media Contact:

Lynne Sullivant

713.242.4782 office

832.465.2234 cell







FOR IMMEDIATE RELEASE





MEDIA ADVISORY/PHOTO OPPORTUNITY



Memorial Hermann Southeast Hospital Invites



You to Attend Our Mix & Mingle Event







WHAT: The Memorial Hermann Southeast Hospital Esophageal

Disease Center, the most comprehensive diagnostic and treatment technology

center for reflux and other esophageal diseases in Houston is hosting a Mix &

Mingle. Our affiliated physicians and former patients will discuss treatment

options for reflux and other esophageal diseases.



WHEN: Thursday, August 18



6 p.m.- 7:30 p.m.







WHO: All are welcome to join Dr. Farzaneh Banki, director,

Esophageal Disease Center and Assistant Professor of Cardiothoracic and Vascular

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--- On Wed, 2/29/12, Monicqua <monicqua2002@...> wrote:

From: Monicqua <monicqua2002@...>
Subject: [achalasia] My son has achalasia
To: achalasia@yahoogroups.com
Date: Wednesday, February 29, 2012, 6:21 PM
















 









       Hello everyone.



   On this day I would like to thank the group for all of the support given to me
and my son. My son name is Sullivan and he is 16, he was diagnosed at the age of
10. He has had one Heller and 19 dilations. This summer he will have another
Heller to make it through his senior year. I usually read the post from my email
daily but I do not respond I like to know whats going on and keep up with the
new information.

  Take care,



Monicqua- Texas



























[Non-text portions of this message have been removed]

I am working my way up to the hardest foods.  Today I am having the soft foods I
haven't been able to swallow for the last 3 months since before my HM.  Today I
had a pancake with banana and it was so good.  I know it's still a soft food,
but it went straight down.  I don't want to rush, I want to savor anything I
haven't had for months!
I feel almost like my old self, just hope it lasts!

Lindsay

--- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@...> wrote:
>
> Hi Lindsay,
>  
> I understand your apprehensions about eating.
>
> To develop your confidence, just proceed at a very slow pace, even if you feel
you should take a sip after each bite.
> Allow time for the food to go thru before taking your next bite. Your
confidence should develop as you see what you are presently capable of.  Before
long you will be smiling again as you see that life can be good.
>  
> Richard
>
> ________________________________
>  From: lindsayaus <lindsay_kite@...>
> To: achalasia@yahoogroups.com
> Sent: Wednesday, February 29, 2012 6:18 PM
> Subject: [achalasia] Re: Dilation time......
>
>
>
>  
>
> Thanks Richard, I didn't know you were allowed to crack this one open.  So
many tablets are supposed to get to the stomach first.
> It's been 17 hours since my worst ever spasm so that's good.
> Today I can try any food I want, but I am little scared in case I can't eat
it.  I am sure this happens to everyone after being on mushy food for so long.
>
> Lindsay
>
> --- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@> wrote:
> >
> > Hi Lindsay,
> >  
> > I keep a little pill box in my pocket (holds about12 nidepine), and never
leave home without it. The moment I sense a spasm is about to start, I
immediately place a capsule under my tongue, let it dissolve (sometimes once it
softens will crack it open with my teeth), and most of the time it will stop the
spasm before it even has a chance to develop. While this is a reliable method
that I use, it appears that for the majority of us, it either does not help, or
the drop in blood pressure that may result from taking it causes dizziness. 
Other than drinking a carbonated beverage first, if available, it has been the
most reliable means of stopping spasms for me in the last 25 years.
> >  
> > If it does help you, there is another side benefit to taking it, in that it
relaxes the LES and makes it easier to have meals.
> >  
> > For both spasms and helping eating, I take it on a "when needed" basis only.
> >  
> > For "economic" purposes, nearly 10 years ago, I had it prescribed to me to
take 2 capsules a day, 3 times a day. The supply I accumulated that year was so
great, I am still working off of it. Imagine a prescription lasting 10 years
(yes, despite the age of the pills, it still is effective).
> >  
> > I really hope that you are once again able to eat normally plus get the
spasms under control.
> >  
> > Richard
> >
> >
> > ________________________________
> > From: lindsayaus <lindsay_kite@>
> > To: achalasia@yahoogroups.com
> > Sent: Wednesday, February 29, 2012 1:59 AM
> > Subject: [achalasia] Re: Dilation time......
> >
> >
> >  
> >
> > Does anyone use nifedipine to help with spasms? Take it regularly or just
when you need it.
> >
> > I got a script for this when I first saw my doc but I don't like taking meds
unless I really have to. Today I had the worst (and longest) spasm ever, so I
rushed to the chemist to get the script filled. It was that bad I nearly
couldn't drive to pick my boys up from school.
> > Will see how well it works.
> >
> > Lindsay
> > --- In achalasia@yahoogroups.com, Kim Abrams <xploring37@> wrote:
> > >
> > > Hopefully with time it will get better!
> > >  
> > > Kim A
> > >
> > >
> > > ________________________________
> > > From: lindsayaus <lindsay_kite@>
> > > To: achalasia@yahoogroups.com
> > > Sent: Tuesday, February 28, 2012 2:34 AM
> > > Subject: [achalasia] Re: Dilation time......
> > >
> > >
> > >
> > >  
> > >
> > > Been home for a few hours and so far had only a little general pain.
> > >
> > > Lindsay
> > >
> > > --- In achalasia@yahoogroups.com, "Jenn Gerrits" <adoptivemommy@> wrote:
> > > >
> > > > Good luck from snowy Canada :)
> > > >
> > > > Jenn
> > > > Sent from my CrackBerry® powered by Virgin Mobile.
> > > >
> > > > -----Original Message-----
> > > > From: "lindsayaus" <lindsay_kite@>
> > > > Sender: achalasia@yahoogroups.com
> > > > Date: Mon, 27 Feb 2012 21:31:54
> > > > To: <achalasia@yahoogroups.com>
> > > > Reply-To: achalasia@yahoogroups.com
> > > > Subject: [achalasia] Dilation time......
> > > >
> > > > I am off in 30 minutes to get my first dilation. All my fingers and toes
are firmly crossed! Hope there's not too much extra pain in the first few days.
> > > >
> > > > Lindsay
> > > >
> > > >
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
> [Non-text portions of this message have been removed]
>

OMG....19 dilations!  I didn't know they could do that many.

Anyone know what the record number is?

Lindsay

--- In achalasia@yahoogroups.com, "Monicqua" <monicqua2002@...> wrote:
>
> Hello everyone.
>
>   On this day I would like to thank the group for all of the support given to
me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age
of 10. He has had one Heller and 19 dilations. This summer he will have another
Heller to make it through his senior year. I usually read the post from my email
daily but I do not respond I like to know whats going on and keep up with the
new information.
>  Take care,
>
> Monicqua- Texas
>

Thats how I feel!!!  The specialist said he can have multiple dilations as long
as he can handle them. He has so much scar tissue that when he has a Heller it
takes alot longer so my nerves be on edge. I would like to know what the record
is also.



________________________________
  From: lindsayaus <lindsay_kite@...>
To: achalasia@yahoogroups.com
Sent: Thursday, March 1, 2012 12:04 AM
Subject: [achalasia] Re: My son has achalasia



 

OMG....19 dilations!  I didn't know they could do that many.

Anyone know what the record number is?

Lindsay

--- In achalasia@yahoogroups.com, "Monicqua" <monicqua2002@...> wrote:
>
> Hello everyone.
>
>   On this day I would like to thank the group for all of the support given to
me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age
of 10. He has had one Heller and 19 dilations. This summer he will have another
Heller to make it through his senior year. I usually read the post from my email
daily but I do not respond I like to know whats going on and keep up with the
new information.
>  Take care,
>
> Monicqua- Texas
>




[Non-text portions of this message have been removed]

So glad to hear that you are doing well Pippa. I am still getting issues with my
j-tube feeding tube but i too am slowly getting there even if i have to rely on
the overnight feeds. Keep in touch now and again.
Christine from the UK


________________________________
From: Pippa <manchesterpippa@...>
To: "achalasia@yahoogroups.com" <achalasia@yahoogroups.com>
Sent: Wednesday, February 29, 2012 3:55 PM
Subject: [achalasia] Re: Rare Disease Day, February 29th


 
Just thought I would post a message about how I am doing now, first I want to
say Hi to Richard, Notan, Martin and Ann (if your still around reading the posts
on the board)

I was diagnosed with Achalasia in July 2006 and in September 2006 I had an Open
Heller and Wrap yesterday I went to see Mr Maynard at Oxford mentioned that I
had (in the last two weeks) two episodes or chest pain in the night and he has
written a prescription for some GTN spray (that is often used for patients with
Angina).

Aside from the two incidents in the past two week doing really well have gained
all the weight that I lost went down to 80 pounds before I was admitted to
hospital for surgery.

So this year it will be 6 years since my surgery and on the whole doing really
well.

Pippa (from the UK)

[Non-text portions of this message have been removed]




[Non-text portions of this message have been removed]

We miss you here!
Christine from the UK


________________________________
From: manchesterpippa <manchesterpippa@...>
To: achalasia@yahoogroups.com
Sent: Wednesday, February 29, 2012 5:57 PM
Subject: [achalasia] Re: FAO Notan - GTN Spray - Richard/Ann


 
Richard I miss you too will catch up with you in an email.

The one thing I do want to say here is how fantastic the members here in this
group are the amount of support I got from this group and my Achalasia family
(you know who you are!) really helped me through what was at times a frightening
experience and feeling of dread and worry.

Richard your emails every morning kept me going while I was waiting for my
surgery and the weeks afterwards Ann, Martin, Maggie, Notan Carolyn, Tim,
Isabelle you were such a support and still are when I ask for your help advice.
So a very very big thank you to you all, you probably don't realise just how
much you have and do mean to me.

Pippa x

--- In achalasia@yahoogroups.com, RICHARD FRIEDMAN <cynmark24@...> wrote:
>
> Hi Pippa.  I miss you!
>  
> Richard
>
>
> ________________________________
> From: manchesterpippa <manchesterpippa@...>
> To: achalasia@yahoogroups.com
> Sent: Wednesday, February 29, 2012 11:05 AM
> Subject: [achalasia] FAO Notan - GTN Spray
>
>
>  
> Notan can I ask in your research for chest pains, (Spasms) is GTN spray as
good as Nifedipine?
>
> I had Nifedipine when I was in hospital (in 2006) and all it did was give me a
chronic headache so can't take that so been prescribed a GTN spray, is there any
other medication that can be used? Have been warned that the GTN spray may drop
my blood pressure and make me light headed but should work on the spasm within
seconds.
>
> Pippa
>
>
>
>
> [Non-text portions of this message have been removed]
>




[Non-text portions of this message have been removed]

I just posted last week about my 15 y/o is dd having another dilatation coming
up. My fear is the weakness and possible tear of the esophagus . No one has
really answered me but kids with A are unusual. I think I will go forward with
the dilatation as she needs to eat and see if we should get the HM repaired. So
the amount your son has had is interesting. Glad to hear he is doing great!

--- On Thu, 3/1/12, lindsayaus <lindsay_kite@...> wrote:

From: lindsayaus <lindsay_kite@...>
Subject: [achalasia] Re: My son has achalasia
To: achalasia@yahoogroups.com
Date: Thursday, March 1, 2012, 12:04 AM
















 









       OMG....19 dilations!  I didn't know they could do that many.



Anyone know what the record number is?



Lindsay



--- In achalasia@yahoogroups.com, "Monicqua" <monicqua2002@...> wrote:

>

> Hello everyone.

>

>   On this day I would like to thank the group for all of the support given to
me and my son. My son name is Sullivan and he is 16, he was diagnosed at the age
of 10. He has had one Heller and 19 dilations. This summer he will have another
Heller to make it through his senior year. I usually read the post from my email
daily but I do not respond I like to know whats going on and keep up with the
new information.

>  Take care,

>

> Monicqua- Texas

>



























[Non-text portions of this message have been removed]