Jump to content
RemedySpot.com

New member

Rate this topic


Guest guest

Recommended Posts

To all members Thank You. I have know I have A since 1994. In 97 had a

baloon dialation. I could never find a support group until finding this web

site. Now I am going to read all 5000 messages. I am with Kaiser Los

Angeles. Little advice and support other then to tell me I should be scoped

every 5 years to check on cancer. Does anyone have advice, information

about that. I also travel to Vancouver Canada a lot, and am being advised

there is a great Dr. who understands A. Thanks again each and every message

was both helpful and had helpful reminders that this strange thing is to be

taken very seriously.

Joanne In Palm Springs

>From: kathiode@...

>Reply-achalasia

>achalasia

>Subject: Re: New member

>Date: Fri, 11 Oct 2002 23:40:34 EDT

>

>Welcome to the group.

>Sorry you have A.

>I hope you find this website sympathetic

>and well as informative. I certainly have.

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

Link to comment
Share on other sites

Plan, plan, plan, plan, plan, plan, plan. That is the key to eating

healthy. It is a tierd old saying, but one that is sooo true: A

Failure to Plan is a Plan to Fail.

I have to use my week-ends to precook things or I'll eat off plan

every time. I cook up a bunch of chicken, salmon, brown rice,

ect...and eat on it all week. This week I know is going to be a trial

for me, so I'm also going to portion up my cottage cheese and have my

fruit all ready to grab as well (I've got a water mellon to cut up.)

I'm sorry that you've run into people who judge you for the job you

used to do. I don't hate you for having done it. If men are going to

be stupid enough to shell out money that way, then wemen are going to

be smart enough to take it. If it were not for the stories you hear

about the way the women are treated by the people who run those

places I'd have no problem with it at all. In my opinion it is the

men who are being taken advantage of, paying for something they will

never get...LOL.

I wonder if your exerience there has left you with a bit of a body

image complex though. It sounds like you don't think you are worthy

of your husband's love because you do not have the pysique you used

to have. Something to think about.

Your husband is not in love with your body, he is in love with you.

He will love you if you gain 100#, he will love you when you're old

and saggy, he will love you if you were some how disfigured. It is

YOU that is not loving you.

I'm glad you came here for support. This is a great group of women.

Alys

Link to comment
Share on other sites

  • 4 weeks later...

Well TJ, your symptoms are, or I should say were, my symptoms, down

to a t! I had the myotomy done 2 weeks ago, and the difference in my

life already is 100%!! I had 7 or 8 (I honestly can't remember)

dilataions done, which helped a little for only about 2-3 weeks.(none

of them ever felt as " good " as this myotomy does. my only regret with

this surgery is that I suffered for so many years before going ahead

with it. Has anyone spoken to you about the possibility of developing

aspiration pneumonia or asthma from the night time choking? or the

possibility that your esophogus may stretch so much from the constant

presure in it, that it may have to be eventually removed? My own mom

who is gone now, had A, I know it because of the symptoms she had,

but in those days, there was no A. she ended up with a hernia in her

esophogus the size of a grapefruit from the years of stretching. I

often wonder how the disease would have progressed in her had she

lived. I admire your spirit, and you are right, stress does definitly

make the symptoms worse, at least for me. Keep seeing your dr. so he

can check your esophogus to make sure it's not being stretched too

much if you are not going to do anything else for the time being.

Congratulations on the newest member of your family! oh, and I agree,

that at least in some cases, like mine and yours, the start of A can

be as much as 50% stress related, (lost both parents, nearly my home,

business collapse in a 4 year period) but after that I think my

actual A was only affected maybe 10% by stress factors, as the rest

of my life really became nearly stress free. Janet.

> Hi Everyone,

> My name is Tim and I'm an " Achalasiac! "   I am so relieved to see

this group

> on the Internet.  As for all of you, I'm sure it was a blessing to

be able to

> read about other people around the world that have this horrible

disease and

> to be able to compare all the little quirks and possible

mitigation's that

> relieve them.  I have been an Achalasia victim for about 6 years

now.  It

> happened to me when I was 43 years old.  Of particular interest to

all of you

> my Achalasia started right after a very traumatic event in my

life.  I had

> recently lost my brother to cancer, I lost my job, I lost my

marriage of 8

> years, two little girls, and to top the list, my dog had died all

in a six

> month period!  Anyway, I was diagnosed with the infamous " Birds

Beak " on an

> X-ray.  I had problems swallowing and went to a doctor to see what

was up!

>

> When it first started the issue that really bothered me the most

was the

> " Birds Beak " thing.  Because, in the beginning when I was eating at

a

> restaurant I had to jump up and down physically just to get my food

down.  I

> really did look like a chicken trying to perform some crazy dance! 

What made

> things worse was how people thought I was dying or something.  For

me, the

> seriousness of this disease was somehow downplayed for a few

moments as I saw

> the chicken jumping up and down and the " Birds Beak " thing standing

out in my

> mind!  However, in all fairness to all of us who suffer, I soon

stopped

> laughing about it so much.  Today, I still occasionally jump

though.  :-) 

> Please forgive my humor but it seems so darn funny when it's me.

>

> About 4 years ago I had dilation.  It did nothing but make my chest

hurt

> extremely bad, especially after the procedure.  Then about a year

after that

> I decided to see what the BOTOX would do.  I had BOTOX injections

in the LES

> and it also did nothing for me.  I was anticipating a great

breakthrough and

> thought I might be able to swallow as I did pre " A. " No such luck. 

My LES is

> so tight I'm positive you could bounce a quater off it! These

options were

> much better than trying the whale bone experiment.  Thank God we

are in the

> 21st Century!  So for the last 3 years now I've learned some basic

maneuvers

> to relieve the stoppages in my esophagus right after I take a bite

or two.

>

> Water is the " Prime Directive " in my daily existence.  Right after

I take at

> least two full bites of anything, I have to drink water immediately

or I'm

> off to the restroom to dump the load.  This always is so

embarrassing.  My

> kids think I'm a freak of nature.  Another way to get things moving

is to

> tilt my head back like I'm yawing but with a flare.  Sometimes I

have to jerk

> it back and voila' the food moves into my stomach.  Standing during

dinner is

> a natural.  It seems rather boring but actually my food can work

it's way

> down better when standing.  I get a real stuffed feeling when

sitting.  The

> everyday eating and drinking can become a real issue especially if

I

> overindulge.  I loved to eat before " A " and I still love to eat

now.  At

> first I had lost 40 something pounds from 220 down to 180.  I'm 6'-

2' and 180

> looks rather skinny.  Most people though I was withering away.

>

> I'm happy to announce that after 6 years of stuffing food down my

esophagus

> even if I threw it right back up I have gained my weight back and

now stand

> at 210!  I was always a runner and sports nut growing up so I had

continued

> to run even after I got this.  However, I do remember having funny

feelings

> while I was running.  Like there was a rope tied to my esophagus

and every

> time I came down on my feet it would pull.  It became very annoying

to the

> point I almost stopped.  I believe my weight gain is also

attributed to the

> will to exist.  After being single for six years I met a very

wonderful woman

> that cares for me daily.  We have been married now for three years

and have a

> 17 Month old baby girl!  I believe happiness can help relieve some

of the

> stress related with Achalasia.

>

> My restfulness was interrupted with gurgling and coughing as a

result of

> fluid buildup trying to get into my lungs!  At first I had placed

two 4 Inch

> wood blocks under the head board on my bed.  It worked great. 

However, my

> wife kept sliding to the foot board.  That was challenging to say

the least. 

> So now I use 7 pillows to keep me up and angled say gravity will do

it's

> work.  Occasionally, I still jump up in the middle of the night and

cough but

> not as much as I used to.  I still drink coffee and have wine

occasionally. 

> It seems the warm does much better than cold fluids.  I have

a " Slippery

> Nipple " on occasion and that really coats my esophagus. 

>

> Overall, I personally rate the disease 50% physical and 50%

psychological. 

> It can be very tiresome and drags you mentally down if you let it

but with

> humor and the ability to overcome by little secrets learned in this

group you

> might have more great days than bad days! I still worry about what

is in the

> future.  Will I get cancer of the esophagus?  Will I die from this

crap?  Who

> knows.  I used to feel sorry for myself but that didn't help

either.  So I

> started to laugh at it.  Right in the face.  I know now that I can

live each

> day with this because I have embraced it as my very personal friend

that is

> always going to be with me and will never leave.  While in the Air

Force I

> learned a very special acronym about events that change things. 

OBE-

> Overcome By Events!  My normalcy was OBE!  Anyway, I'm rambling on

here.  I

> wanted to introduce myself to the world of Achalasiacs!  I am so

thrilled to

> be able to read more about our disease through this media and look

forward to

> read more messages.  Thank you for giving us the vehicle to

become more

> aware!

>

> Keep trying to swallow normal!

> Sincerely,

> TJ

Link to comment
Share on other sites

Greetings Maureen! Glad to have you with us. This list is smallish, and very

friendly. Not too many messages to handle, and family like!

: ) in Rochester

Maureen Barger wrote:

> Hi -- Just got added today, and wanted to say hi.

-- Ehrhardt

Body & Soap

***coming soon***

www.bodyandsoap.com

Link to comment
Share on other sites

Welcome Maureen! Where is the Newark Vally? Please dont be too much of a

lurker. Feel free to talk about whatever you want to. Soapwize, I am a

CPer of about 5 years and I live just east of Rochester.

Ttya!

Shaye

The Soap Shack

www.mysoapshack.com

New Member

Hi -- Just got added today, and wanted to say hi.

I live in Newark Valley/Candor area in NY and have taken a couple

classes from Gelnett, who turned me onto this list. I'll pretty

much be a lurker for a while as I have just started making soap, but

am looking forward to learning from y'all and chiming in when I can.

Have a great day!

Our Message Board

http://www.voy.com/21568/

Check out these great Molds!!

http://soapwerks.com/martinworld.htm

Member Kae's Site... Awesome oil Prices!

http://www.olivetreesoaps.com/

All posts to this list are copyrighted by post author. They may NOT be

forwarded, copied, or used in anyway without the permission of the post

author with the exception of answering posts to this list. Posts are

personal opinions only.

Link to comment
Share on other sites

Hi Maureen

Welcome to our little group. I'm sure you'll enjoy it.

By the way, I have a sister-in-law named Maureen but we

call her Renie. Did anyone ever give you that nickname?

I live smack dab between Syracuse and Albany in the Mohawk

Valley - a little town called Ilion which I'm sure you've

never heard of.

New Member

Hi -- Just got added today, and wanted to say hi.

I live in Newark Valley/Candor area in NY and have taken a couple

classes from Gelnett, who turned me onto this list. I'll pretty

much be a lurker for a while as I have just started making soap, but

am looking forward to learning from y'all and chiming in when I can.

Have a great day!

Our Message Board

http://www.voy.com/21568/

Check out these great Molds!!

http://soapwerks.com/martinworld.htm

Member Kae's Site... Awesome oil Prices!

http://www.olivetreesoaps.com/

All posts to this list are copyrighted by post author. They may NOT be

forwarded, copied, or used in anyway without the permission of the post

author with the exception of answering posts to this list. Posts are

personal opinions only.

Link to comment
Share on other sites

I sure have. A friend of mine grew up there, plus it is the home town to

Remington :-)

Growing up I met a Reenie but most Maureens I know are Mo's ;-) I have

other nicknames but they are mostly plays on the word Mo.

At 02:57 PM 11/12/2002 -0500, you wrote:

>Hi Maureen

>

>Welcome to our little group. I'm sure you'll enjoy it.

>By the way, I have a sister-in-law named Maureen but we

>call her Renie. Did anyone ever give you that nickname?

>

>I live smack dab between Syracuse and Albany in the Mohawk

>Valley - a little town called Ilion which I'm sure you've

>never heard of.

>

>

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

Maureen Barger, CIT/ID, Cornell University

Ithaca, NY 14850

mf12@...

http://mo.cit.cornell.edu/

Experience is something you don't get until just after you need it.

Link to comment
Share on other sites

Oh my goodness. When did your girlfriend live here

and how long ago did she leave? Maybe I know her family.

I'm 51 years old and have lived here all my life except

for 2 yrs.in Ft. Hood Texas. Regarding Remington, I was

going to mention that in my first email but a lot of women

don't know guns so Remington means nothing to them.

RE: New Member

I sure have. A friend of mine grew up there, plus it is the home town to

Remington :-)

Growing up I met a Reenie but most Maureens I know are Mo's ;-) I have

other nicknames but they are mostly plays on the word Mo.

At 02:57 PM 11/12/2002 -0500, you wrote:

>Hi Maureen

>

>Welcome to our little group. I'm sure you'll enjoy it.

>By the way, I have a sister-in-law named Maureen but we

>call her Renie. Did anyone ever give you that nickname?

>

>I live smack dab between Syracuse and Albany in the Mohawk

>Valley - a little town called Ilion which I'm sure you've

>never heard of.

>

>

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

Maureen Barger, CIT/ID, Cornell University

Ithaca, NY 14850

mf12@...

http://mo.cit.cornell.edu/

Experience is something you don't get until just after you need it.

Our Message Board

http://www.voy.com/21568/

Check out these great Molds!!

http://soapwerks.com/martinworld.htm

Member Kae's Site... Awesome oil Prices!

http://www.olivetreesoaps.com/

All posts to this list are copyrighted by post author. They may NOT be

forwarded, copied, or used in anyway without the permission of the post

author with the exception of answering posts to this list. Posts are

personal opinions only.

Link to comment
Share on other sites

He left when he was 7. Last name Mulvey. He says " ask her if she remembers

Mulvey's Pharmacy, or Mother's restaurant, on Otsego Street. he pharmacy

was a family business on my dad's side, and the restaurant was the big teen

hangout in the late 50's/early 60's, owned by my mother's side. " Here is a

pic: <http://www.geocities.com/~ilionny/mothers.interior.html>

Instant messaging is a wonderful thing.

My husband is quite a collector of guns; I like to shoot trap and skeet. Or

let me correct myself - I like to shoot *at* trap and skeet. ;-)

I have learned how to do cold process soaps. I bought some molds on eBay

and the seller was cleaning house so she threw in some melt and pour stuff

and some Christmas embeddables (or whatever they are called) for soap

globes. I am thinking of trying them for Christmas. But I am new new new to

soaps, having only made them in a classroom setting. I want to make them at

home with goat's milk (I raise goats) and my own herbs and flowers.

At 03:31 PM 11/12/2002 -0500, you wrote:

>Oh my goodness. When did your girlfriend live here

>and how long ago did she leave? Maybe I know her family.

>I'm 51 years old and have lived here all my life except

>for 2 yrs.in Ft. Hood Texas. Regarding Remington, I was

>going to mention that in my first email but a lot of women

>don't know guns so Remington means nothing to them.

>

>

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

Maureen Barger, CIT/ID, Cornell University

Ithaca, NY 14850

mf12@...

http://mo.cit.cornell.edu/

Experience is something you don't get until just after you need it.

Link to comment
Share on other sites

Welcome Maureen! Terri here... the always slow and often behind ListMom#1. I

think you'll like it here.... we're like a big group of friends. We often

stray off the soaping topic, but that's ok... in fact we encourage it. Feel

free to kick up your feet and chat about anything. If you've had a good day

or bad day be it soaping related or that traffic jam that got at you during

the day know you can pop on the list have a whole group of friendly

supportive ears to talk to.

Terri

Link to comment
Share on other sites

Hi there, Maureen! I'm nne, and I live in Cohoes, NY (just outside

Albany). I'm 27, and my husband and I have been married for 2.5 years. I

have a Weblog at http://lvjensen.blogspot.com/. I make melt-and-pour soap,

but I have made a few batches of CP. I am totally addicted to bath and body

stuff! LOL! Nice to " meet " you ~ maybe you can attend our gathering next

summer!

~nne :-)

Link to comment
Share on other sites

Hey there Maureen...welcome from another lurker. The reason I've come

out of lurkdom is to say, hi neighbor! I live in Candor right about

where Routes 96 and 96b meet. My husband and I have lived in the area

for about 2 years...we're both originally from western NY. I've been

making HP soap for about 9 months now. It's exciting to have someone

so nearby on this list!!

Jen

> Hi there, Maureen! I'm nne, and I live in Cohoes, NY (just outside

> Albany). I'm 27, and my husband and I have been married for 2.5 years. I

> have a Weblog at http://lvjensen.blogspot.com/. I make melt-and-pour soap,

> but I have made a few batches of CP. I am totally addicted to bath and body

> stuff! LOL! Nice to " meet " you ~ maybe you can attend our gathering next

> summer!

>

> ~nne :-)

>

>

>

Link to comment
Share on other sites

Maureen...I wanted to add that I noticed by your email address that you

work at Cornell...I do to...I work in the Vet. Med. Center doing

research. I just think it's too funny! LOL! Talk to you later!

Jen

> Hey there Maureen...welcome from another lurker. The reason I've come

> out of lurkdom is to say, hi neighbor! I live in Candor right about

> where Routes 96 and 96b meet. My husband and I have lived in the area

> for about 2 years...we're both originally from western NY. I've been

> making HP soap for about 9 months now. It's exciting to have someone

> so nearby on this list!!

>

> Jen

>

>

>

> >

Link to comment
Share on other sites

  • 3 weeks later...
  • 3 weeks later...

Hi there, Geri! I live in Albany, NY, so I'm of no help to you, but we did

visit Montauk/The Hamptons for our first wedding anniversary! It was a

blast, and we had such a great time! It's really fun over there. Glad you

found our list ~ welcome!

~nne

http://lvjensen.blogspot.com/

P.S. There's a Valentine's Day soap swap going on at

http://www.puresugar.net/scrapbooking ~ sign up for the forum and click on

the " other swaps " link.

Link to comment
Share on other sites

Hi Geri

Welcome to our site. I'm not from Long Island. I live

between Albany & Syracuse. I do M & P soaps and other

toiletry items so I can't advise you with soap from

scratch. But there are plenty of people on this list

that can help you and will be " more than willing " to

do it. We're a great bunch here (hehe) and I'm sure

you'll enjoy it. We talk a lot about other things other

than soaps & such, too. So chime right in any time.

Merry Christmas to you.

New Member

Hello to you all!

I'm wondering if there's anyone on this list from Long Island? I know of

only one person in this huge area who makes his own soap, and he's not

very nice about sharing tips of the trade. I'm in Port Jefferson and am

very new to it all.

Geri

Link to comment
Share on other sites

  • 3 weeks later...
  • 2 weeks later...

Hey April welcome to the group! Well for sure if you start your challenge now

then you will definetely be ready for summer if you only have 5 lbs to lose!

Good luck on your challenge! :)

~kimmah

New Member

Hello Everyone,

As you can see I'm new here. I'm 27 from Buffalo N.Y. my weight is

about 121 and hight is 5'0. I've been wanting to lose about 5 pounds

I know that it's not alot but my fat is insane lol so I want to tone

up alot before summer. Lets put it this why when i'm walking and I

stop, my thighs are still going 10 minutes afterwards lol. It's sad

but true. So thats why I came here I need ALOT of motivation to get

my butt up and start doing something about it. One other bad thing is

that I smoke but I want to quite so i'm hoping that if i start

working out I will feel better about myself and not want to somke

anymore. I live in a apartment complex and they have a gym and it's

FREE and I still don't have the motivation to go. I did for abit but

I just gave up. This site seems like it incourages people by taking

and with the pictures of everyone you can see the diffrence. I want

to start going to the gym on the 19th/20th of January. I don't have a

pic yet in a bathing suite yet but I hope to have one on here in the

next couple of days. Just to worn you it's pretty scary lol. So thats

about it for me oh one more thing does this site have work out

buddies or anything like that so we can help eachother out when we

(me) lol feel we just can't do it anymore? If so I need a buddie

REALLY bad lol. If someone has any advice I would love to get some.

WOW wrote so much i'm sorry. I'm on here everyday so I hope to hear

from someone or everyone lol.

Have a wonderful day/night whenever you read this hehehe. Thanks for

your time :-)

April4675

Link to comment
Share on other sites

>>I AM DORIS IN WV.

Welcome, Doris. We're glad to have you here, but PLEASE, unlock the CapsLock

key and write in mixed type. Writing in all-caps is considered shouting on

the Internet. If it's in caps because of a sight problem, let us know and

we'll learn to live with it. :)

>I NOW HAVE LOST 22 POUNDS WITH 78 MORE TO GO

Looks like you're off to a good start. Just remember, you want to lose it

slow. In the beginning, a lot of people drop a lot of weight because of

water weight and their bodies are getting a greatly reduced amount of

calories than they had been getting. You should level off to one or 2 pounds

a week. If you lose more than that, then you may be eating too little for

proper health and nutrition.

>I AM LIMITED

ON EXERCISE BECAUSE I HAVE REUMTOID ARTHRITIS

I have a few arthritic joints, as well as bursitis, sciatica, and neuritis,

on top of CFS/FM and asthma, and am restricted, too. What exercises *are*

you doing - someone's aerobic video, walking, chair exercises? If you need

suggestions I'm sure we can make some to fit.

>AND SJOGREN SYNDROME.

Ah, you made me go look this one up. http://www.sjogrens.com/

It looks like you have immune and fatigue problems. That would also tie in

with your RA.

> BUT I HAVE BEEN HAVING

PROBLEMS REPLYING TO THE MESSAGE BOARD. I HAVE TRIED CUSTOMER SERVICE ,

BUT THEY SAY THE PROBLEM IS ON MY END,

Can't help you there. What type of problems are you having? Maybe one of the

people on this list who *is* a clubmember can help you. It may be as simple

as allowing your web browser accept cookies.

>I AM SO HAPPY TO BE HERE.

I'm glad you found us. If you're looking for recipes to use with your

FoodMover, I suggest you also join the RSDeal list, our sister list.

rsdeal/

>I AM MARRIED TO HUSBAND RAY FOR 37 YEARS , HAVE TWO GROWN SONS ,

25 years this past Nov. for us, and only one kid, a 19 yo nerd-boy who just

started engineering college and is living at home.

So, jump right in when the mood or topic hits. We look forward to getting to

know you.

Sue in NJ

Link to comment
Share on other sites

Welcome Mark!

My family doctor today suggested I hold off on ANY surgery as long as possible, b/c the laparoscopic advances are coming by leaps and bounds.

And I know there is one member here who knows a doc who will do the surgery laparoscopically in the UK, too. :o)Debbi in Michigan

New Member

Just discovered this website even though I have suffered from achalasia for about 3 years now.Just had my first balloon dilation last Thursday. Luckily they did not rupture anything and indeed, despite some internal bruising (which is starting to diminish), my swallowing has improved substantially. The down side though is I have had a lot more severe spasm pains (if that's what the pains are - nobody really seems to know do they?).Anyway, from reading some of the chat on this site I have a few observations/comments:1. The two consultants I have seen - both professing to have some knowledge of achalasia - seem to think that the spasm pain is rare. Yet everyone on this site seems to get them!! I have been almost embarrassed to describe the pain like having a heart attack - because this seems melodramatic and I haven't had a heart attack. However, most of you can probably relate to just how excruitiatingly painful the attacks are.2. I have been put on a number of pills to try to suppress the attacks - and the nif spray. The pills have been useless and I only tried the nif spray twice and concluded that the headache and very minor relief (if at all) wasn't worth it. I have tended to relieve the pain by drinking lots of water. I get most of the pains through the night (so perhaps reflux related?) and sometimes have to drink 5 or 6 glasses of water to get rid of it - and then spend the rest of the night getting up to the loo!! However, I read with real interest that some of you eat dry biscuits to relieve the pain and I've tried that over the last few days and it works really well - plus it's easier to carry a couple of biscuits than a bottle of water.3. The last treatment I had was last September and that was the botox injection - I've only had it once. I was told it would take a week to kick in fully and then last for 6 to 9 months. However, it kicked in immediately such that the next day my swallowing was fantastic - but the downside was it only lasted about 10 days. It's a bit worrying to read that some of you think that the botox and balloon treatments can impair the chances of a successful full operation.4. I think I will eventually need the full operation - as somebody said, all the other treatments just seem to be putting off the inevitable. I live in the UK and it seems that we take the view that the laparoscopic approach to this is still in its infancy so there is no real choice here other than the 'open up the chest' approach - I suspect we are just lagging behind the US.5. One advantage to achalasia - I have lost 14lbs in the last year or so! People keep saying how trim I look - little do they know that I just can't physically get the food down - plus to be fair I am avoiding fizzy drinks / fried food / etc. I also find it actually exhausting eating in the sense that I eventually just get too tired trying to carry on forcing the food down.As I say, I had the balloon dilation 4 days ago and so far so good - but following my expoerience with botox I am not 'counting my chickens'!Mark ( Surrey, UK)

Link to comment
Share on other sites

Welcome to the group Mark,

I live in the UK and have had " A " for over 13 years 10 undetected(Doctor

said it was all in my head!!).

I have had 2 unsuccessful dilations and an unsuccessful Hellers Myotomy(Done

lap).

My surgeon was very inexperienced at this type of surgery and combined with

the fact that my " E " Had dilated and I had scarring from dilations it was

not surprising it failed.Since my surgery I have been referred to a

professor that practises out of Bristol royal infirmary and I am due to see

him on the 30 of January(Prof, D.Alderson).Don't be misled that you only

have one option you will be pleasantly surprised at just how many surgeons

are doing this type of surgery laproscopicly and I think this would be the

best road to go down(Little pain and fast recovery.The worst part of the

whole operation was waiting to go down to surgery I was very anxious).

The best advice I can give you is to have the surgery as soon as you can and

find the most experienced doctor to do it DO NOT be afraid to ask questions

and if they don't give you good enough answers go to another one(You will

find a list of questions on this group to ask your surgeon,Print off the

page and go Armed with a wealth of knowledge!!.)

All the best,

South Wales

New Member

> Just discovered this website even though I have suffered from

> achalasia for about 3 years now.

> Just had my first balloon dilation last Thursday. Luckily they did

> not

> rupture anything and indeed, despite some internal bruising (which is

> starting to diminish), my swallowing has improved substantially. The

> down side though is I have had a lot more severe spasm pains (if

> that's what the pains are - nobody really seems to know do they?).

> Anyway, from reading some of the chat on this site I have a few

> observations/comments:

> 1. The two consultants I have seen - both professing to have some

> knowledge of achalasia - seem to think that the spasm pain is rare.

> Yet everyone on this site seems to get them!! I have been almost

> embarrassed to describe the pain like having a heart attack - because

> this seems melodramatic and I haven't had a heart attack. However,

> most of you can probably relate to just how excruitiatingly painful

> the attacks are.

> 2. I have been put on a number of pills to try to suppress the

> attacks - and the nif spray. The pills have been useless and I only

> tried the nif spray twice and concluded that the headache and very

> minor relief (if at all) wasn't worth it. I have tended to relieve

> the pain by drinking lots of water. I get most of the pains through

> the night (so perhaps reflux related?) and sometimes have to drink 5

> or 6 glasses of water to get rid of it - and then spend the rest of

> the night getting up to the loo!! However, I read with real interest

> that some of you eat dry biscuits to relieve the pain and I've tried

> that over the last few days and it works really well - plus it's

> easier to carry a couple of biscuits than a bottle of water.

> 3. The last treatment I had was last September and that was the botox

> injection - I've only had it once. I was told it would take a week to

> kick in fully and then last for 6 to 9 months. However, it kicked in

> immediately such that the next day my swallowing was fantastic - but

> the downside was it only lasted about 10 days. It's a bit worrying to

> read that some of you think that the botox and balloon treatments can

> impair the chances of a successful full operation.

> 4. I think I will eventually need the full operation - as somebody

> said, all the other treatments just seem to be putting off the

> inevitable. I live in the UK and it seems that we take the view that

> the laparoscopic approach to this is still in its infancy so there is

> no real choice here other than the 'open up the chest' approach - I

> suspect we are just lagging behind the US.

> 5. One advantage to achalasia - I have lost 14lbs in the last year or

> so! People keep saying how trim I look - little do they know that I

> just can't physically get the food down - plus to be fair I am

> avoiding fizzy drinks / fried food / etc. I also find it actually

> exhausting eating in the sense that I eventually just get too tired

> trying to carry on forcing the food down.

>

> As I say, I had the balloon dilation 4 days ago and so far so good -

> but following my expoerience with botox I am not 'counting my

> chickens'!

>

> Mark ( Surrey, UK)

>

>

>

>

>

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...