Re: Would like to know about members????

[Guest guest]

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A "

My name is Joy, and my Husband has had all the symptoms of " A "

for the last 24 years. His " A " is secondary to allergic

eosinophilic inflammation in his esophagus (he also has the

eosinophilic inflammation in his stomach and small intestine). He

is treated with topically active steroids (Beclomethasone mixed in

corn oil & eaten 3-4 times per day) and Zyrtec (an antihistamine).

We live in Washington State (USA). No kids. I don't work, but my

husband works as a Payroll Administrator.

-JS

[Guest guest]

My name is Joy Hardie, 43, married 19 years, 3 children - Paige 15,

Zack 13, Dave 11. We live in the Detroit, Michigan area.

I have my degree from BYU in Recreation Management but quit my job

when we started a family. Currently I am painting the exterrior of

our historic home but I also am a seamstress for skaters & dancers

for pin money. Since marriage we have lived in Utah, Florida, Los

Angeles CA, and 1 year in England.

Symptoms started with chest pains at age 7. Swallowing

difficulties needed treatment while in college - dilitation.

Followed by years of reflux, heartburn ...couldn't bring myself to

seek further treatment until I was nearly unable to eat this last

fall. I decided it wasn't fair to the kids to always have to worry

if Mom was going to choke to death during meals. Botox the day after

Christmas has been a blessing although I am feeling the symptoms

returning. Dr. Rice said that the botox was a horrible thing to do

as it causes scar tissue that is later difficult to deal with.

Planned surgery on 22 Sept at CC.

Interestingly enough....I was a chronic sufferer of hives as a

child - and continue to get them during periods of stress/weakness.

I get big blotchy welts of hives totally covering my body. Almost

like a curse they would come at 10pm (as I got tired) ...starting to

spread up my neck/face from my chest, so on dates I would plan on

turtlenecks. I would also get them from heat (bathtub) or sun. I

don't get them very much anymore.... I was a guinnea pig at NIH.

Joy (from Michigan)

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

Good idea - and I would like to request, without being a big snoop, what

other health issues are common in the group. I think that would be helpful,

but only whatever anyone is comfortable mentioning.

I am Martha from Seattle. Yesterday I happily turned 53. I have been

married 33 years and have four kids: Amy, 31, mother of almost 4 herself;

, 28, 2nd year law student; Sam, 25, sick with colitis and a liver

disease for 10 years which has turned out to be a big, nasty sulfites

allergy; Joy, 20, college student, part-time waitress. I am a substitute

teacher for 3 private schools, so it's back to work next week for me!

Health issues stemming from our whole family's copper problem: ADD,

hypothyroid, hives, dyslexia, sulfites allergies, asthma, anemia...and

perhaps swallowing problems! (two kids and myself).

History of A:

I remember getting hiccups from certain breads as a kid and sometimes

swallowing problems along with that. Achalasia started about 10 years ago.

Have diagnosed it myself using my Mayo Clinic family health book (which is

of more use to me than most doctors). No studies done except ultrasound

which showed hiatal hernia years ago. My symptoms fit absolutely perfectly

with the description in the Mayo book and what you all have described, so I

have no doubt it is A.

I swear the B-12 must be helping. Went out to dinner for my birthday last

night and ate chicken!!! ZERO problems. Never even thought about A, except

to try to eat smaller bites, as is our habit, right?

That is very unusual. I normally have to stop and let things settle several

times during a restaurant meal - and usually lose the battle anyway and

spend the evening running to the restroom.

Has anyone else tried B-12 yet? I can't think of anything else that has

changed that could explain improvement...except that I had that microcurrent

treatment and have been avoiding sulfites!! (B-12 improves sulfite

reactions, so is there a link?)

Other health problems: hypothyroid, ADD, big butt. (I like the idea of the

free stomach staple surgery AND the brain tape worm!! Love the humor on this

site!)

OK, who's next?

Martha

Would like to know about members????

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

>

>

>

>

>

>

[Guest guest]

Hi,

I am Ginny, 59 yers old, Philadelphia area, PA, 1 daughter, married

20 years. I am a research chemist. Although I had spasms at 18

y.o., achalasia became a real problem during the period I was getting

my Ph.D., in my late twenties. At 30 y.o., I got my first balloon

dilatation from Dr. Heimlich. The procedure was experimental at that

time, and done without anesthesia for fear of perforation. I never

wanted another dilatation, so I just learned to cope with swallowing

problems and to reduce stress to minimize spasms. In 1995, I was

diagnosed with adult ADHD. The spasms started again followed by

choking when I worked at a small company with a verbally abusive

president. After a failed Botox, I got a second dilatation in 1998,

and I told the president that I could not continue to work at his

company if he did not stop yelling at me or at my coworkers in my

presence. I eventually moved onto another company. I was told by my

GI in 1998 that I needed a heller myotomy (open surgery at that time

was the only thing available), but my husband and I decided that we

wanted to wait until there was more of an understanding of achalasia

treatment. I learned to adapt to achalasia, but the choking started

seriously this spring when I landed in the emergency room from

fainting after a choking episode. The emergency room doctor was very

concerned about my need for surgery. Just last week, I was able to

get my desperately needed laparoscopic heller myotomy surgery from L.

Katz, M.D., at the Laparoscopic Surgical Center of New York.

He found that my LES was very thick, and after the lap. myotomy he

performed a partial fundoplication just changing the angle between my

esophagus and fundus of my stomach with a suture. He did not need

to go near the delicate esophagus, which had become distended and

sigmoid. I consider myself very lucky to have found a surgeon who

knew how to adapt the surgery for end-stage achalasia.

Ginny

> I would like to know about members in group. >

name,age,city/state/country,children,what kind of job you have,and a

> little about your history with " A "

[Guest guest]

Hello Shery

MY NAME IS PENNY I AM 38 YEARS OLD HAVE BEEN MARRIED FOR 9 YEARS TO

PAUL WE HAVE A TOTAL OF 5 CHILDREN BETWEEN US 2 19 YEAR OLD GIRLS

ANGEL AND ERIN ,JESSIE IS 17 AND THE ONLY BOY SCOTT IS 15 WE ALSO

HAVE A FOSTER DAUGHTER WHO HAS SINCE GROWN AND LIVES ON HER OWN HER

NAME IS TERRIE SHE IS 23 .WE LIVE IN WINDSOR ONTARIO CANADA.I WAS

JUST DIAGNOSED WITH A ABOUT 4 MONTHS AGO ALLTHOUGH I HAVE BEEN

HAVEN TROUBLE FOR YEARS I DID NOT DO ANYTHING ABOUT IT UNTILL EATING

BECAME INPOSSIBLE I AM WAITING FOR A SURGERY DATE IN LONDON ONTARIO

I HAVE HAD ALL THE TESTS DONE AND THEY ALSO TRIED TO DO A DIALATION

WHICH DID NOT WORK I AM LUCKY MY DOCTOR HAS MADE SURE I HAVE A

HOSPITAL BED AT HOME SO I SLEEP PRETTY MUCH SITTING UP THE BED IS

MUCH BETTER THEN THE CHAIR I HAD BEEN IN FOR A LONG TIME . WELL I

HOPE THIS INFO ABOUT ME HELPS YOU TO GET TO KNOW ME A BIT BETTER I

HAVE BEEN IN THE GROUP SINCE THE DAY WAS TOLD ABOUT THE A THIS IS

THE MOST WONDERFUL GROUP OF PEOPLE YOU COULD FIND TO LISTEN AND

MAYBE GIVE SOME IDEAS ON DEALING WITH THIS CONDITION KEEP SMILING

PENNY

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a

son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

Hey ......

Have you called Dr. Finley's office latety?

Hope you are doing OK ...... has been cold here the last few days ......

really feels like fall

Calgary

Ice cream plant ..... cooool ...... sorry bad pun

<insert witty saying here>

Bleasdale wrote:

> My name is Bleasdale. I am 21 years old, and have been married

> just 2 years. We have no children yet, but can’t wait to get surgery,

> so we can try again. (I had a tubal pregnancy rupture my tube Dec

> 25/03) We help take care of my nephew, Donovan, 2, since his mom (my

> sis) and his dad have split. I live in Chilliwack, BC, Canada, about

> 1 hour East of Vancouver. I work in an ice cream plant, in the

> office. I do data entry, as well as inventory, etc.

>

> My symtoms started about a year ago, but never looked

> into any of my sympotms until Christmas, when I was already seeing my

> dr. I was diagnosed in January. I have not had any treatment so far,

> and am on the wait list for a heller myotomy with partial wrap.

>

> As I am sure Martha will want to know (pun intended), my

> family drank well water most of our lives. Just since I moved out (4

> yrs ago) did I stop. Hmmmm… what else… I remember her talking about

> pools a while back (I think…?) my parents have an in-ground pool, that

> I have swam in since 1989… I have had chicken pox. Anything else?

> Let me know! J

>

>

>

> [image]

>

>

>

[Guest guest]

My name

is Bleasdale. I am 21 years old, and have been married just 2

years. We have no children yet, but can’t wait to get surgery, so

we can try again. (I had a tubal pregnancy rupture my tube Dec 25/03)

We help take care of my nephew, Donovan, 2, since his mom (my sis) and his dad

have split. I live in Chilliwack, BC, Canada, about 1 hour East of Vancouver. I work in an ice cream

plant, in the office. I do data entry, as well as inventory, etc.

My symtoms started about a year ago, but never looked into any of my sympotms

until Christmas, when I was already seeing my dr. I was diagnosed in

January. I have not had any treatment so far, and am on the wait list for

a heller myotomy with partial wrap.

As

I am sure Martha will want to know (pun intended), my family drank well water

most of our lives. Just since I moved out (4 yrs ago) did I stop. Hmmmm…

what else… I remember her talking about pools a while back (I think…?)

my parents have an in-ground pool, that I have swam in since 1989… I have

had chicken pox. Anything else? Let me know! J

[Guest guest]

Hi Sherri,

I am Joan, I live in Johannesburg, South Africa. I am 67 years old. I have been married to for 40 years. I have two children, Janet (40) and (38) I have 5 grandchildren (20), (16) Kirsten (10) (9) and (3). I am a trained nurse specialising in Infection Control as a consultant and educator - now almost retired! I have bad osteoarthritis of my spine, knees and ankles and many allergies - hypothyroid as well.

I have probably had A for years but been unaware of it. About three years ago I started choking on things like lettuce, but ate everything else. I was diagnosed as having a huge hiatus hernia and reflux about then after a scope. (he missed the A by a mile!) When conventional medication did not help I was referred to a surgeon for laparoscopic repair of the Hiatus hernia. The surgeon did a barium x-ray and found not only the advanced achalasia, but a diverticulum. 5 days later he did an open Heller with a Dor (partial) fundoplication and repaired the hernia. The op was not a success and I was worse off than before. When I could no longer swallow much I had a dilatation which has given me about 70 -80% better swallowing, but the reflux is back with a vengeance. I still live on mostly soup because I don't want food to back up in my very distended oesophagus. I will probably have to have further surgery in the not so distant future.With the help of this group and educating myself about A, I have come to terms with the condition -just !.

Joan

Joan Pearse

jpearse@...

Johannesburg

South Africa

[Guest guest]

Hey !

No, I

have not called his office for a few weeks. I don’t think I will

again, either. I will let my local GI’s reception take care of that

from now on. I have been keeping in touch with the local office, and they

are still looking into who else in BC can perform a heller. I am

thinking by the amount of time it is taking, that there must be no one

else. (If they are actually looking into it)

I

am doing alright. I just (try) to stick with mush that I know will work

for me. We took my nephew camping for the weekend. We do it the old

fashioned REAL way with a tent. And, of course it rained. No, it

poured. We kept thinking ‘a few more hours’. It didn’t

stop! My nephew was stuck in the tent for two days! He did soooo

well. We took the opportunity to take cards, and make flash cards.

At least he can count to 10 now, and read what the numbers look like!

How

are you doing? And your wife?

Re: Re: Would

like to know about members????

Hey ......

Have you

called Dr. Finley's office latety?

Hope you are

doing OK ...... has been cold here the last few days ......

really feels

like fall

Calgary

Ice cream

plant ..... cooool ...... sorry bad pun

<insert

witty saying here>

[Guest guest]

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

I'm Gayle, age 41, who lives in San Francisco CA. I'm a newlywed;

Allan and I were married on June 13th. I was officially diagnosed

with Achalasia at the end of June, after being misdiagnosed with

Gastric Reflux, Irritable Bowel and Crohns. I've had symptoms

(mainly regurgtating food at night while sleeping) for about 4 years

with more severe symptoms starting this past March. The symptoms

(vomiting after almost every meal) and their residual effects (lack

of energy and lack of sleep) have made it difficult for me to work.

I am an underwriter for an insurance company. I'm very fortunate

that my husband is extremely supportive of me during this time.

After extensive research about " A " and lots of imput from this

group, I came to the conclusion that the best course of treatment for

me is a Heller Myotomy with a wrap. I will undergo surgery next

Friday, Sept. 3 at the University of California, San Francisco

Hospital.

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and

a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

Hi ......

We are all fine thank you ...... just wish the summer weather would come

back ....

I certainly would think that there are other Drs. at VGH that do

hellers.

There at least two here in Calgary. If you like I can certainly give

you their names.

I just read Martha's post. I am certain that BC Health would be more

agreeable having you come to Calgary than to the States.

I can't believe that it would take any time to find out other Drs. in

B.C. These Drs. all really know each other very well through

professional associations etc.

Your ideas to entertain your nephew on the rainy day were very creative.

Take care ,

Bleasdale wrote:

> Hey !

>

> No, I have not called his office for a few weeks. I don’t think I

> will again, either. I will let my local GI’s reception take care of

> that from now on. I have been keeping in touch with the local office,

> and they are still looking into who else in BC can perform a heller.

> I am thinking by the amount of time it is taking, that there must be

> no one else. (If they are actually looking into it)

>

> I am doing alright. I just (try) to stick with mush that

> I know will work for me. We took my nephew camping for the weekend.

> We do it the old fashioned REAL way with a tent. And, of course it

> rained. No, it poured. We kept thinking ‘a few more hours’. It

> didn’t stop! My nephew was stuck in the tent for two days! He did

> soooo well. We took the opportunity to take cards, and make flash

> cards. At least he can count to 10 now, and read what the numbers

> look like!

>

> How are you doing? And your wife?

>

>

[Guest guest]

Hi

I am currently checking on the net for

some more info on surgeons around here. No luck so far. I was told

by my GI that Dr. Finley is the only one around that does them. So far, I

am not able to prove them wrong. It would make sense, as to why this is

taking sooo long. I am going to call my GI this morning as soon as I have

a bit more info. If it weren’t for the cost, I would be willing to

go to Calgary. I really cannot afford to, though. Even if we got a

really good deal on a flight, I don’t think we’d make it. My

hubby is still a student, and is going back to school soon, and things are

tight as it is. Is there some kind of an “allowance” on this

type of thing that you know of? My aunt seemed sure that they would pay a

certain portion of travel, if needed, but I can’t find any info on

that. I doubt they would let me go to Washington, unless I was to pay

myself, but it is the same situation there. The surgery, by the sounds of

it, is worth way more than we can afford. I think I would starve myself

to death, if I lived there. I don’t know how all those Americans

can afford it! J Well, thanks for the input, the search continues…

Re: Re: Would

like to know about members????

Hi ......

We are all fine thank you ...... just wish the

summer weather would come

back ....

I certainly would think that there are other Drs.

at VGH that do

hellers.

There at least two here in Calgary. If you

like I can certainly give

you their names.

I just read Martha's post. I am certain that

BC Health would be more

agreeable having you come to Calgary than to the

States.

I can't believe that it would take any time to

find out other Drs. in

B.C. These Drs. all really know each other

very well through

professional associations etc.

Your ideas to entertain your nephew on the rainy

day were very creative.

Take care ,

Bleasdale wrote:

> Hey !

>

> No, I have not called his office for a few

weeks. I don’t think I

> will again, either. I will let my local

GI’s reception take care of

> that from now on. I have been keeping

in touch with the local office,

> and they are still looking into who else in

BC can perform a heller.

> I am thinking by the amount of time it is

taking, that there must be

> no one else. (If they are actually

looking into it)

>

>

I am doing alright. I just (try) to stick with mush that

> I know will work for me. We took my

nephew camping for the weekend.

> We do it the old fashioned REAL way with a

tent. And, of course it

> rained. No, it poured. We kept

thinking ‘a few more hours’. It

> didn’t stop! My nephew was stuck

in the tent for two days! He did

> soooo well. We took the opportunity to

take cards, and make flash

> cards. At least he can count to 10 now,

and read what the numbers

> look like!

>

>

How are you doing? And your wife?

>

>

[Guest guest]

am in calgary and the surgeon I had is very good had my op afew years ago now, granted the trouble is coming back and worse as time goes on, have to go have more tests done then between my surgeon and the other one he wanted second opionion as they are not sure yet on a second surgery but after tests will find out if they will go ahead with surgery or try something diffrent, but i would like the surgeon i had do it last time to do the surgery again if I have to have another one, used to have to take pills to eat since surgery havent taken the pills was great for afew years was very pleased now i had surgery on the achalasia but do have difuse spasms also at top of esphogus so that could be causing the trouble now aswell as the achalasia, anyways I would recommend this surgeon, guess though would have to be referred by your dr dont know.

sue w

Bleasdale <ableasdale@...> wrote:

Hi

I am currently checking on the net for some more info on surgeons around here. No luck so far. I was told by my GI that Dr. Finley is the only one around that does them. So far, I am not able to prove them wrong. It would make sense, as to why this is taking sooo long. I am going to call my GI this morning as soon as I have a bit more info. If it weren’t for the cost, I would be willing to go to Calgary. I really cannot afford to, though. Even if we got a really good deal on a flight, I don’t think we’d make it. My hubby is still a student, and is going back to school soon, and things are tight

as it is. Is there some kind of an “allowance” on this type of thing that you know of? My aunt seemed sure that they would pay a certain portion of travel, if needed, but I can’t find any info on that. I doubt they would let me go to Washington, unless I was to pay myself, but it is the same situation there. The surgery, by the sounds of it, is worth way more than we can afford. I think I would starve myself to death, if I lived there. I don’t know how all those Americans can afford it! J

Well, thanks for the input, the search continues…

-----Original Message-----From: [mailto:johngriffin@...] Sent: Thursday, August 26, 2004 9:42 AMachalasia Subject: Re: Re: Would like to know about members????

Hi ......We are all fine thank you ...... just wish the summer weather would comeback ....I certainly would think that there are other Drs. at VGH that dohellers.There at least two here in Calgary. If you like I can certainly giveyou their names.I just read Martha's post. I am certain that BC Health would be moreagreeable having you come to Calgary than to the

States.I can't believe that it would take any time to find out other Drs. inB.C. These Drs. all really know each other very well throughprofessional associations etc.Your ideas to entertain your nephew on the rainy day were very creative.Take care , Bleasdale wrote:> Hey !>> No, I have not called his office for a few weeks. I don’t think I> will again, either. I will let my local GI’s reception take care

of> that from now on. I have been keeping in touch with the local office,> and they are still looking into who else in BC can perform a heller.> I am thinking by the amount of time it is taking, that there must be> no one else. (If they are actually looking into it)>> I am doing alright. I just (try) to stick with mush that> I know will work for me. We took my nephew camping for the weekend.> We do it the old fashioned REAL way with a tent. And, of course it>

rained. No, it poured. We kept thinking ‘a few more hours’. It> didn’t stop! My nephew was stuck in the tent for two days! He did> soooo well. We took the opportunity to take cards, and make flash> cards. At least he can count to 10 now, and read what the numbers> look like!>> How are you doing? And your wife?>>Post your free ad now! Canada Personals

[Guest guest]

Hello Sherry,

I am 46 years old, single, live in Cambridge, Ontario. Work as a

Human Resources director for a community living agency. I was

diagnosed with A 2 years ago after 18 months of testing and consults

including 5 endoscopes. Had had problems swallowing for several

years but it became much worse. Had surgery in August, 2002 to

remove excess scarring and adhesions from a stomach operation 17

years earlier. The surgeon felt this would then permit dilations

being done which were previously unsuccessful. My symptoms eased

for the past 2 years but have gradually worsened and I am awaiting a

new consult in November. Like many I am an expert on soup and the

location of every public washroom in southern Ontario!

Liz

[Guest guest]

Greetings Sherry!

Jess, 21, Sacramento CA USA

No children (and will not ever have any as a personal preference)

I work in the Healthcare industry, of all places, processing indivdual

plan applications for a major company.

I have been aware of my symptoms for about 4 years. My physician's

have consistently told me I have a 'sensative' stomach and to avoid

spicey foods. The fact that I got the same answer from more than on

Dr. tells me I wasn't explaining myself properly. Dr's intimidate me

and I have trouble expressing myself, which makes me very fearful that

I will be pushed into accepting any old surgeon if I end up getting a

myotomy. I was diagnosed about a month ago. After taking GERD

medication for a while. My Dr. never called me after the Diagnosis.

Either she felt stupid for not having known, or she still doesn't have

any clue what it is. My guess is the latter. My first GI apt. is next

friday. I have a feeling that it is simply a consulation and I am

trying to ramp myself up to demand a m..m... the pressure test thing

that starts with an M, better look that up again. Because I am tired

of stupid appointments where nothing happens and I shell out my copay.

I inted to show a lot of attitude and get my way if it turns out I

know more about Achalasia than the GI. Yes, I'm bitter.

> I would like to know about members in group.If you do not want to

> give any info that is fine.I know a little about some of you but

> would like to know more.For example

> name,age,city/state/country,children,what kind of job you have,and a

> little about your history with " A " A little about me.Sherry

> DeBord,44, divorced,2 children (Tabitha) 25

> lives in NY and has my only grandaughter (Kailyn 6 months)and a son

> (ny) 21.I live in Piketon,Ohio.I am a nurse and work with

> elderly.Diagnosed with " A " 15 yrs ago.5 dilations no surgeries.Will

> probably have surgery before end of yr. Thanks Sherry

[Guest guest]

Does anyone else find it interesting the Dr. Heimlich did a procedure

for Ginny RIGHT in the area of her diaphram (solar plexus)???

> Hi,

> I am Ginny, 59 yers old, Philadelphia area, PA, 1 daughter, married

> 20 years. I am a research chemist. Although I had spasms at 18

> y.o., achalasia became a real problem during the period I was

getting

> my Ph.D., in my late twenties. At 30 y.o., I got my first balloon

> dilatation from Dr. Heimlich. The procedure was experimental at

that

> time, and done without anesthesia for fear of perforation. I never

> wanted another dilatation, so I just learned to cope with swallowing

> problems and to reduce stress to minimize spasms. In 1995, I was

> diagnosed with adult ADHD. The spasms started again followed by

> choking when I worked at a small company with a verbally abusive

> president. After a failed Botox, I got a second dilatation in 1998,

> and I told the president that I could not continue to work at his

> company if he did not stop yelling at me or at my coworkers in my

> presence. I eventually moved onto another company. I was told by my

> GI in 1998 that I needed a heller myotomy (open surgery at that time

> was the only thing available), but my husband and I decided that we

> wanted to wait until there was more of an understanding of achalasia

> treatment. I learned to adapt to achalasia, but the choking started

> seriously this spring when I landed in the emergency room from

> fainting after a choking episode. The emergency room doctor was

very

> concerned about my need for surgery. Just last week, I was able to

> get my desperately needed laparoscopic heller myotomy surgery from

L.

> Katz, M.D., at the Laparoscopic Surgical Center of New York.

> He found that my LES was very thick, and after the lap. myotomy he

> performed a partial fundoplication just changing the angle between

my

> esophagus and fundus of my stomach with a suture. He did not need

> to go near the delicate esophagus, which had become distended and

> sigmoid. I consider myself very lucky to have found a surgeon who

> knew how to adapt the surgery for end-stage achalasia.

> Ginny

>

> > I would like to know about members in group. >

> name,age,city/state/country,children,what kind of job you have,and a

> > little about your history with " A "

[Guest guest]

<cut>

I think I would starve myself to death, if I lived there. I

> don't know how all those Americans can afford it! :-)

>

I live within minutes of the Canadian border and likewise can't

understand how Canadians can tolerate the high taxes....when the FREE

medical care means being put on extensive waiting lists.

Our taxes are lower and we purchase our own medical insurance. Our

kids get braces without being waitlisted for years, and we get our

surgeries without being waitlisted etc.

The year we lived in England my young son tripped at Dover Castle

and cracked his head open.....he was rushed to the emergency room but

they wouln't put stitches in because they said, " Boys like to show

off their scars. " In the United States, every Dr. I spoke with said

it SHOULD have been stitched. Now he waits to age 19 when he can

have surgery to remove the huge scar down the front of his forehead.

Nationalized healthcare might be FREE for everyone....but someone

else is deciding what you need. So, if they decide that swallowing

isn't really all that important...then what do you do?

Yes, we have the burden of buying our own medical care....but we

save such a great deal in taxes! I guess it is all what you get used

to.

Joy (from Michigan)

[Guest guest]

My name is . I go by the monicker Boston Pete. I am married to Pam for 11 years and have two children (7) and (5). I work for a large pharmaceutical company as a pharmaceutical scientist. I am involved in the aspect of manufacturing and testing the manufacturing process. I like to design web pages, rides horses, yoga, toastmasters, reading, walking, and sailing. I am 39 years old.

I first noticed difficulty swallowing about 1 1/2 years ago. It was very slow to progress. I saw a doctor about 6 months later and was diagnosed with a barium swallow, and gastric emptying test (accidentally, I told them I never felt hungry anymore, they thought food was filling my stomach, and when then did the test, realized it was filling my esophagus instead.) I also had reflux, gastritis, and ulcers immediately before I had difficulty swallowing. I have no other health problems. I meet with a surgeon on September 14th.

Boston Pete

[Guest guest]

Hi Jess,

I go armed with a list when I go to an appointment ! I usually go blank and can't remember what I was supposed to ask or can't remember what a thing is called. Manometry is the word you were looking for.

I too was bitter and it helped to fuel a determination to know all about the disease to be able to make informed choices.

I think there is a list of questions on the Website - if not let me know I will see what I can send you.

Joan

Re: Would like to know about members????

Greetings Sherry!Jess, 21, Sacramento CA USANo children (and will not ever have any as a personal preference)I work in the Healthcare industry, of all places, processing indivdual plan applications for a major company.I have been aware of my symptoms for about 4 years. My physician's have consistently told me I have a 'sensative' stomach and to avoid spicey foods. The fact that I got the same answer from more than on Dr. tells me I wasn't explaining myself properly. Dr's intimidate me and I have trouble expressing myself, which makes me very fearful that I will be pushed into accepting any old surgeon if I end up getting a myotomy. I was diagnosed about a month ago. After taking GERD medication for a while. My Dr. never called me after the Diagnosis. Either she felt stupid for not having known, or she still doesn't have any clue what it is. My guess is the latter. My first GI apt. is next friday. I have a feeling that it is simply a consulation and I am trying to ramp myself up to demand a m..m... the pressure test thing that starts with an M, better look that up again. Because I am tired of stupid appointments where nothing happens and I shell out my copay. I inted to show a lot of attitude and get my way if it turns out I know more about Achalasia than the GI. Yes, I'm bitter.> I would like to know about members in group.If you do not want to > give any info that is fine.I know a little about some of you but > would like to know more.For example > name,age,city/state/country,children,what kind of job you have,and a > little about your history with "A" A little about me.Sherry > DeBord,44, divorced,2 children (Tabitha) 25> lives in NY and has my only grandaughter (Kailyn 6 months)and a son > (ny) 21.I live in Piketon,Ohio.I am a nurse and work with > elderly.Diagnosed with"A" 15 yrs ago.5 dilations no surgeries.Will > probably have surgery before end of yr. Thanks Sherry

[Guest guest]

I assume you are actually from the BOS area, as am I.

What hospital/Dr is doing your surgery ?

>

> My name is . I go by the monicker Boston Pete. I am married to

> Pam for 11 years and have two children (7) and (5). I work for a

> large pharmaceutical company as a pharmaceutical scientist. I am involved in

> the aspect of manufacturing and testing the manufacturing process. I like to

> design web pages, rides horses, yoga, toastmasters, reading, walking, and

> sailing. I am 39 years old.

>

> I first noticed difficulty swallowing about 1 1/2 years ago. It was very

> slow to progress. I saw a doctor about 6 months later and was diagnosed with

> a barium swallow, and gastric emptying test (accidentally, I told them I

> never felt hungry anymore, they thought food was filling my stomach, and

> when then did the test, realized it was filling my esophagus instead.) I

> also had reflux, gastritis, and ulcers immediately before I had difficulty

> swallowing. I have no other health problems. I meet with a surgeon on

> September 14th.

>

> Boston Pete

>

[Guest guest]

Good luck

From: <mario@...>

Subject: Re: Would like to know about members????

achalasia

Date: Thursday, April 12, 2012, 5:59 PM

 

I assume you are actually from the BOS area, as am I.

What hospital/Dr is doing your surgery ?

>

> My name is . I go by the monicker Boston Pete. I am married to

> Pam for 11 years and have two children (7) and (5). I work for a

> large pharmaceutical company as a pharmaceutical scientist. I am involved in

> the aspect of manufacturing and testing the manufacturing process. I like to

> design web pages, rides horses, yoga, toastmasters, reading, walking, and

> sailing. I am 39 years old.

>

> I first noticed difficulty swallowing about 1 1/2 years ago. It was very

> slow to progress. I saw a doctor about 6 months later and was diagnosed with

> a barium swallow, and gastric emptying test (accidentally, I told them I

> never felt hungry anymore, they thought food was filling my stomach, and

> when then did the test, realized it was filling my esophagus instead.) I

> also had reflux, gastritis, and ulcers immediately before I had difficulty

> swallowing. I have no other health problems. I meet with a surgeon on

> September 14th.

>

> Boston Pete

>