Hello!! Looking for help or advice!!!

[Guest guest]

I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to see

what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor seems

to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

Thanks All!!

[Guest guest]

Have you had a manometry, yet?  If you have had a definite diagnosis of

achalasia, the only thing that will help you swallow in the long run is to open

up your sphincter so the food can go down through the miracle of gravity.

 Either a balloon dilation or surgery (or possibly an injection of Botox) could

do this.  From what I have read, surgery has the best record for long-term

relief.  I had the surgery back when it was open-chest.  Now they can do it

with a laporoscopically (?).  My current GI says there is a new procedure out

there where they can snip the muscle through an endosope.  My surgery was

somewhat of an ordeal because I got aspiration pneumonia but I would do it again

in a heartbeat.  It will make a huge difference in your quality of living.

________________________________

From: linda <linda.preato@...>

achalasia

Sent: Saturday, April 28, 2012 7:41 AM

Subject: Hello!! Looking for help or advice!!!

 

I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to see

what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor seems

to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

Thanks All!!

[Guest guest]

________________________________

From: Beatrice Soila <bandreino@...>

" achalasia " <achalasia >

Sent: Sat, April 28, 2012 10:32:02 AM

Subject: Re: Hello!! Looking for help or advice!!!

 

Have you had a manometry, yet?  If you have had a definite diagnosis of

achalasia, the only thing that will help you swallow in the long run is to open

up your sphincter so the food can go down through the miracle of gravity.

 Either a balloon dilation or surgery (or possibly an injection of Botox) could

do this.  From what I have read, surgery has the best record for long-term

relief.  I had the surgery back when it was open-chest.  Now they can do it

with

a laporoscopically (?).  My current GI says there is a new procedure out there

where they can snip the muscle through an endosope.  My surgery was somewhat of

an ordeal because I got aspiration pneumonia but I would do it again in a

heartbeat.  It will make a huge difference in your quality of living.

________________________________

From: linda <linda.preato@...>

achalasia

Sent: Saturday, April 28, 2012 7:41 AM

Subject: Hello!! Looking for help or advice!!!

 

I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to see

what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor seems

to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

Thanks All!!

[Guest guest]

Hi from Connecticut

I'm Pat formerly of Connecticut and now in DC.

My GI left it up to me about whether to go with a dilation or surgery. Many

people on this list seem to have had very positive experiences with

surgery. I went with dilation as a first step. If it doesn't work, then

I'll probably go with surgery. My GI told me, just as he was getting ready

to perform the dilation, this week (wednesday) that the amount of pressure

they learned from the manometry made me a good candidate for dilation. The

surgeon thought surgery was best.

I'm not going to advise you as to what to do because I still don't know

whether I made the right choice.

All I can tell you that the dilation has made a MAJOR improvement in my

life. I've been so used to spending half the morning drinking one bottle of

Ensure, and avoiding almost all solid foods except some light Lipton noodle

soup and chocolate, that I almost assumed it was normal. Feeling

chronically short of energy was normal.

This morning I had two cups of coffee (the first time in over a year), two

8 ounce apple juices, and oatmeal with walnuts and raisins, just like a

normal person.

This has completely changed my life and outlook. Because I'm beginning to

eat something akin to normal (ramping up gradually), my energy level has

improved and I feel almost giddy (remember Scrooge after he wakes up?).

Other than some cramps/spasms the first two nights post dilation, I've had

no issues to deal with. What just seems amazing to me is how quickly it

brought about this turnabout.

The risk with the dilation is I may be experiencing a Cinderella liberty.

If it doesn't work, I'll know in three to four weeks, my GI said. The

longer I get past that period, the better off I'll be. If it fails, I may

go straight to surgery. But I'll see. In the meantime, I'm going to make

the best of it.

Good luck with your decision. Don't put it off, whatever you do and push

the doctors to schedule asap. It will make a big difference.

Best

Pat

>I'm from Connecticut...and I need some help.....trying to research

on my own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or

liquid I throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

seems to thimk she can help....thinks it may be nerve damage from an old

spinal injury....thinking of working with her to see if it could

help......but I'm feeling like crap!!!

Thanks All!!<

[Guest guest]

I personnally feel the HM is the best bet to help with Achalasia.  Google,

" hospitals that deal with Achalasia " .  That is how I found mine.

 

Suzanne

From: linda <linda.preato@...>

Subject: Hello!! Looking for help or advice!!!

achalasia

Date: Saturday, April 28, 2012, 10:41 AM

 

I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to see

what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor seems

to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

Thanks All!!

[Guest guest]

Hi, ! Welcome. A lot of difference depending on your age. Dilations

don't seem to work as well on younger people (the body heals better/faster?).

AND depending on the individual will produce more or less scar tissue which will

make an eventual Heller more difficult, and possibly less successful. My *own*

reading is to go for a Heller with possible dilations after, as a touch up, as

needed. Hellers can last for thirty years. I've *never* seen a study that

indicates a dilation will. Perhaps because those they work best for are in

their sixties and don't hang around for thirty year studies, lol!?

Start rooting around the archives here: a host of information/stories to shore

up your knowledge. And good luck!

/WV

>

> I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

seems to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

>

> Thanks All!!

>

[Guest guest]

Hi ,

 

Welcome to our group, it is by far the best place to be if you have achalasia! 

I spents over two decades of my life and never met another soul who had this

disorder, so it's nice to find others who can relate.  Here is my best advice,

make sure you find the best of the best to do your procedures.  That is the

MOST important thing I can tell you.  No rookie doc's that have seem only a few

cases. 

 

In 2010 I finally was able to get a proper diagnosis and I researched with the

help of this group.  I lived in So. Calif. at the time and found a great

surgeon who specialized in esophageal motility disorders and achalasia.  She

did my surgery and it was a success.  Even a balloon dilitation needs to be

done with a GI that does MANY of these, an under experienced will not do it

right.  That my 2 cents.

 

I wouldn't waste my money on a Chiropractor, if you have achalasia that means

the nerves have died, or are dying in the esophagus and the LES is not EVER

going to work, without some intervention.  Over time the esophagus can " expand "

and stretch out because the food is not going down and into your stomach, it is

sitting there and causing damage to your E.  It's important to remember that

and find a good doc who can fix it. 

 

Keep us posted, wishing you all the best.

 

Julee in Oregon

 

 

 

 

________________________________

From: linda <linda.preato@...>

achalasia

Sent: Saturday, April 28, 2012 7:41 AM

Subject: Hello!! Looking for help or advice!!!

 

I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to see

what Dr recommends.....any advice??

Also have tried lots of alternative acupuncture...herbs...2nd chiropractor seems

to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

Thanks All!!

[Guest guest]

Thanks !!!  Thats what ive been reading....hmmm  I'm 49...not sure if

that

is considered old or young!!!!1lol

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Sat, April 28, 2012 10:42:00 PM

Subject: Re: Hello!! Looking for help or advice!!!

 

Hi, ! Welcome. A lot of difference depending on your age. Dilations don't

seem to work as well on younger people (the body heals better/faster?). AND

depending on the individual will produce more or less scar tissue which will

make an eventual Heller more difficult, and possibly less successful. My *own*

reading is to go for a Heller with possible dilations after, as a touch up, as

needed. Hellers can last for thirty years. I've *never* seen a study that

indicates a dilation will. Perhaps because those they work best for are in their

sixties and don't hang around for thirty year studies, lol!?

Start rooting around the archives here: a host of information/stories to shore

up your knowledge. And good luck!

/WV

>

> I'm from Connecticut...and I need some help.....trying to research on my

>own is difficult....I have achalasia...lost 40 pounds...which I was

>overweight..but if i loose more will be soon a problem....any food or liquid I

>throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see

>what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

>seems to thimk she can help....thinks it may be nerve damage from an old spinal

>injury....thinking of working with her to see if it could help......but I'm

>feeling like crap!!!

>

> Thanks All!!

>

[Guest guest]

>The risk with the dilation is I may be experiencing a Cinderella liberty.

If it doesn't work, I'll know in three to four weeks, my GI said.

I think the more important risk of dilatation is perforating the esophagus. It's

uncommon (generally less than 5% I believe), but we were told that when it does

occur, about half the time emergency surgery is required to repair it. That

means 1) open chest surgery rather than a minimally invasive Heller myotomy and

2) you probably won't get to pick your surgeon.

This is the main reason we chose to go directly to HM with no dilatation. Here

in Boston, all the major teaching hospitals seem to strongly recommend this

approach now. The two senior GI docs we interviewed, both highly experienced

with dilatation for achalasia, no longer do them anymore except in special

circumstances. One told us he simply would not do a dilatation for us; the other

said he would if we insisted, but he saw no argument for it and would do

everything he could to talk us out of it. The risk, though small, is to these

docs unwarranted since minimally invasive HM is safer and, probably, much more

long lasting.

I know other docs may have different views, but perhaps worth considering.

By the way, we also interviewed two senior surgeons with extensive achalasia

experience and asked if trying a dilatation first would complicate a later HM

due to scar tissue. Both said no, unless an excessive number of dilatations had

been performed. So that may not be a valid argument against trying dilatation

first. Both surgeons did say that prior botox treatment can make later HM

surgery more challenging.

>

> Hi from Connecticut

>

> I'm Pat formerly of Connecticut and now in DC.

>

> My GI left it up to me about whether to go with a dilation or surgery. Many

> people on this list seem to have had very positive experiences with

> surgery. I went with dilation as a first step. If it doesn't work, then

> I'll probably go with surgery. My GI told me, just as he was getting ready

> to perform the dilation, this week (wednesday) that the amount of pressure

> they learned from the manometry made me a good candidate for dilation. The

> surgeon thought surgery was best.

>

> I'm not going to advise you as to what to do because I still don't know

> whether I made the right choice.

>

> All I can tell you that the dilation has made a MAJOR improvement in my

> life. I've been so used to spending half the morning drinking one bottle of

> Ensure, and avoiding almost all solid foods except some light Lipton noodle

> soup and chocolate, that I almost assumed it was normal. Feeling

> chronically short of energy was normal.

>

> This morning I had two cups of coffee (the first time in over a year), two

> 8 ounce apple juices, and oatmeal with walnuts and raisins, just like a

> normal person.

>

> This has completely changed my life and outlook. Because I'm beginning to

> eat something akin to normal (ramping up gradually), my energy level has

> improved and I feel almost giddy (remember Scrooge after he wakes up?).

>

> Other than some cramps/spasms the first two nights post dilation, I've had

> no issues to deal with. What just seems amazing to me is how quickly it

> brought about this turnabout.

>

> The risk with the dilation is I may be experiencing a Cinderella liberty.

> If it doesn't work, I'll know in three to four weeks, my GI said. The

> longer I get past that period, the better off I'll be. If it fails, I may

> go straight to surgery. But I'll see. In the meantime, I'm going to make

> the best of it.

>

> Good luck with your decision. Don't put it off, whatever you do and push

> the doctors to schedule asap. It will make a big difference.

> Best

> Pat

>

>

>

> >I'm from Connecticut...and I need some help.....trying to research

> on my own is difficult....I have achalasia...lost 40 pounds...which I was

> overweight..but if i loose more will be soon a problem....any food or

> liquid I throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

> see what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

> seems to thimk she can help....thinks it may be nerve damage from an old

> spinal injury....thinking of working with her to see if it could

> help......but I'm feeling like crap!!!

>

> Thanks All!!<

>

>

>

[Guest guest]

/WV

 

Love the last sentance in the first paragraph.  Humor is good.  I am 53 so I

should be good for awhile. 

 

Suzanne

From: puddleriver13 <puddleriver13@...>

Subject: Re: Hello!! Looking for help or advice!!!

achalasia

Date: Saturday, April 28, 2012, 11:41 PM

 

Hi, ! Welcome. A lot of difference depending on your age. Dilations don't

seem to work as well on younger people (the body heals better/faster?). AND

depending on the individual will produce more or less scar tissue which will

make an eventual Heller more difficult, and possibly less successful. My *own*

reading is to go for a Heller with possible dilations after, as a touch up, as

needed. Hellers can last for thirty years. I've *never* seen a study that

indicates a dilation will. Perhaps because those they work best for are in their

sixties and don't hang around for thirty year studies, lol!?

Start rooting around the archives here: a host of information/stories to shore

up your knowledge. And good luck!

/WV

>

> I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

seems to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

>

> Thanks All!!

>

[Guest guest]

We are still young.  With people living in their 80's and 90's.  We are young.

 

Suzanne

From: linda preato <linda.preato@...>

Subject: Re: Re: Hello!! Looking for help or advice!!!

achalasia

Date: Saturday, April 28, 2012, 11:53 PM

 

Thanks !!!  Thats what ive been reading....hmmm  I'm 49...not sure if

that

is considered old or young!!!!1lol

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Sat, April 28, 2012 10:42:00 PM

Subject: Re: Hello!! Looking for help or advice!!!

 

Hi, ! Welcome. A lot of difference depending on your age. Dilations don't

seem to work as well on younger people (the body heals better/faster?). AND

depending on the individual will produce more or less scar tissue which will

make an eventual Heller more difficult, and possibly less successful. My *own*

reading is to go for a Heller with possible dilations after, as a touch up, as

needed. Hellers can last for thirty years. I've *never* seen a study that

indicates a dilation will. Perhaps because those they work best for are in their

sixties and don't hang around for thirty year studies, lol!?

Start rooting around the archives here: a host of information/stories to shore

up your knowledge. And good luck!

/WV

>

> I'm from Connecticut...and I need some help.....trying to research on my

>own is difficult....I have achalasia...lost 40 pounds...which I was

>overweight..but if i loose more will be soon a problem....any food or liquid I

>throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see

>what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

>seems to thimk she can help....thinks it may be nerve damage from an old spinal

>injury....thinking of working with her to see if it could help......but I'm

>feeling like crap!!!

>

> Thanks All!!

>

[Guest guest]

Welcome to our group, but sorry to here you have A.

As somebody previously mentioned your first step is to get a positive diagnosis.

Then find the most experienced doctors available to you. You are relatively

close to Mass general in Boston that has some of the top surgeons with plenty of

experience should you choose to go that route.

You man be closer to NYC, I don't know first hand (I'm form BOS) but I've heard

there are also some very good specialists in that area. Good luck, and you can

contact me directly if you have any question about BOS recommendations.

>

> I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

seems to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

>

> Thanks All!!

>

[Guest guest]

How did your appointment go?

>

> I'm from Connecticut...and I need some help.....trying to research on my

own is difficult....I have achalasia...lost 40 pounds...which I was

overweight..but if i loose more will be soon a problem....any food or liquid I

throw up......

>

> I havent had a balloon dilation or mytomy....going to Yale Digestive Wed to

see what Dr recommends.....any advice??

>

> Also have tried lots of alternative acupuncture...herbs...2nd chiropractor

seems to thimk she can help....thinks it may be nerve damage from an old spinal

injury....thinking of working with her to see if it could help......but I'm

feeling like crap!!!

>

> Thanks All!!

>