Hello

January 14, 2008

Welcome back, Doreen.

Have you gotten any checkups since your dilation in 8/06? If

not, it's probably a good time now to go back and ask for a timed

barium swallow. There are studies showing that regular

monitoring with an annual timed barium swallow is useful to keep

track of the shape and function of your esophagus, because

changes in the esophagus are not necessarily reflected in

symptoms. The doctor may also want to do endoscopy to check if

there's any reflux damage going on.

Also, I think that the sooner you get it treated, whether by

surgery or repeated dilatations, the less damage to your

esophagus.

in PA

Hello

> Hi. I am a 29 year old single mom who was diagnosed with

> Achalasia

> about a year and a half ago. I join this group around that

> time, and

> then for a variety of personal reasons I left. I decided to

> rejoin

> because " normal " people just don't understand.

>

> At the time of my diagnosis I underwent a balloon dilation,

> which after

> getting over the initial pain of the procedure, worked pretty

> well. My

> doctor is pretty laid back and says that I don't have to been

> with any

> regular frequency but my question is when is it bad enough to

> go back

> for the next step in treatment? Before the last diagnosis I

> was to the

> point where I could barely keep food down -- only a little bit

> with

> huge amounts of water, otherwise I would throw it back up. I

> am having

> increasing difficulty with swallowing but don't look forward to

> going

> through another dilation... Any thoughts??

>

> Doreen in Michigan

>

January 14, 2008

Doreen..I just had a pneumatic dialation 6 days ago with amazing

results. I have had surgery in 1993 and other dialations. I think I

have done very well and had 2 pregnancies after the surgery. My 2

pneumatic dialations were great successes. I do hate having them

because I wake up VERY NAUSEOUS. I could barely stand for the barium

x-ray after..let alone drink the stuff they want you to. UGH...I

vomited the rest of the day...pretty violently..worrying I would just

tighten right back up from it. BUT...I am doing very well. AND the

food doesn't stay in my E for hours. Such relief. I almost feel

normal...... And you're right. Normal people don't understand.

Sometimes they don't even believe. I remember my cousin said once..I

wish I could get that for a few months. IGNORANT.

Good Luck and welcome back!

Dawn in Ohio

>

> Hi. I am a 29 year old single mom who was diagnosed with Achalasia

> about a year and a half ago. I join this group around that time,

and

> then for a variety of personal reasons I left. I decided to rejoin

> because " normal " people just don't understand.

>

> At the time of my diagnosis I underwent a balloon dilation, which

after

> getting over the initial pain of the procedure, worked pretty

well. My

> doctor is pretty laid back and says that I don't have to been with

any

> regular frequency but my question is when is it bad enough to go

back

> for the next step in treatment? Before the last diagnosis I was to

the

> point where I could barely keep food down -- only a little bit with

> huge amounts of water, otherwise I would throw it back up. I am

having

> increasing difficulty with swallowing but don't look forward to

going

> through another dilation... Any thoughts??

>

> Doreen in Michigan

>

January 24, 2008

Dear Robyn,

Thank you very much for taking the time to update us on Joe's condition. It must be heavy on you too. I wish you a lot of strength for the coming period.

I'll keep Joe in my thoughts, hoping for a good outcome.

Isabella

Hello

My name is Robyn my husband Joe posts here, his surgry is done, there was a large mishp, He lost 6pints of blood due to a accidental cut in the large arterie the intestine was attached. his blood pressue is low but his heart is beating very fast, they do not know if ther is any damage done to his heart or brain they will not know until he waks upph

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January 24, 2008

I just recently found out I have achalasia. I actually went to the

Careplace site first and was recommended to this site as it is more

established with more info. Thanks by the way ;>

Anyhoo, my achalasia was VERY sudden. I was 30 years old, I was fine,

no problems eating until 2006. Initially I didn't even have vomiting,

I had really bad spasms and as such was diagnosed with GERD. GERD

medication NEVER seemed to work though...only drinking copious amounts

of fluid would make the spasms stop. I would get a little nauseated

sometimes but no vomiting. Then I got pregnant with my 4th son

(LOL...yup 4) in 2007 and thats when the spasms got so bad I had to go

to ER because I thought I was having a M.I. or something. I was

hyperemetic, I couldn't stop puking although it was just bile and

saliva...goodness it was HORRIBLE. Then the vomiting started...and

still...being treated for GERD. I'm popping these pills like candy and

STILL vomiting. But having no idea there was such a thing as

esophageal dysmotility I just keep with the GERD diagnosis, thinking

it will get better after my child is born......ummm well it actually

got worse. There were times I would forego food for days because I

couldn't keep solids OR liquids down. Of course after starving myself

for a few days then I was able to eat again.

My spasms have decreased since giving birth but the vomiting has

increased. I don't generally have problems swallowing though I can

sometimes feel the lump as it goes down. Had an EGD and the Doc saw

food in my E and barely any in my stomach. She suggested a gastric

emptying study and a UGI(with barium swallow). Lo and Behold (lol) the

tech didn't even need to go through the whole procedure after a few

gulps of that stuff it was pretty obvious it wasn't going anywhere. My

E is dilated and I didn't see any contractions at all...he said it was

pretty amotile. It just kept filling with no emptying. I don't think

that I have dealt with nay really understanding docs so far. When I

had my first consult with the GI PA he had the audacity to suggest my

vomiting was psychosomatic (huh????). And he really hasn't given me

any info, thank goodness I went and did research on my own. I have yet

to have a manometry done, and honestly I'm so sick of this I just want

the surgery...like yesterday. There are days when I'm able to manage

and keep solid food down, and then days where I can keep nothing down.

I suppose it depends on what is stuck in my E and how much. I assume

it must pass through somehow, who knows. Glad I found a place where

people actually know what I'm talking about and don't think it's all

in my " head " .

Patrice

>

> Hi. I am a 29 year old single mom who was diagnosed with Achalasia

> about a year and a half ago. I join this group around that time, and

> then for a variety of personal reasons I left. I decided to rejoin

> because " normal " people just don't understand.

>

> At the time of my diagnosis I underwent a balloon dilation, which after

> getting over the initial pain of the procedure, worked pretty well. My

> doctor is pretty laid back and says that I don't have to been with any

> regular frequency but my question is when is it bad enough to go back

> for the next step in treatment? Before the last diagnosis I was to the

> point where I could barely keep food down -- only a little bit with

> huge amounts of water, otherwise I would throw it back up. I am having

> increasing difficulty with swallowing but don't look forward to going

> through another dilation... Any thoughts??

>

> Doreen in Michigan

>

January 24, 2008

Patrice,

Where do you live?? Probably the most important thing, which others

will tell you as well, is that you get a doctor that is VERY

experienced with treating Achalasia, and a surgeon who has done a ton

of surgeries for it.

There are many people on this board that have gone to less experienced

surgeons/doctors and have paid the price.

If we know where you are located, we can recommend doctors.

in NY

Hello

achalasia

> I just recently found out I have achalasia. I actually went to the

> Careplace site first and was recommended to this site as it is more

> established with more info. Thanks by the way ;>

>

> Anyhoo, my achalasia was VERY sudden. I was 30 years old, I was fine,

> no problems eating until 2006. Initially I didn't even have vomiting,

> I had really bad spasms and as such was diagnosed with GERD. GERD

> medication NEVER seemed to work though...only drinking copious

amounts

> of fluid would make the spasms stop. I would get a little nauseated

> sometimes but no vomiting. Then I got pregnant with my 4th son

> (LOL...yup 4) in 2007 and thats when the spasms got so bad I had

> to go

> to ER because I thought I was having a M.I. or something. I was

> hyperemetic, I couldn't stop puking although it was just bile and

> saliva...goodness it was HORRIBLE. Then the vomiting started...and

> still...being treated for GERD. I'm popping these pills like candy

and

> STILL vomiting. But having no idea there was such a thing as

> esophageal dysmotility I just keep with the GERD diagnosis, thinking

> it will get better after my child is born......ummm well it actually

> got worse. There were times I would forego food for days because I

> couldn't keep solids OR liquids down. Of course after starving myself

> for a few days then I was able to eat again.

>

> My spasms have decreased since giving birth but the vomiting has

> increased. Had an EGD and the Doc saw food in my E and barely any in

> my stomach. She suggested a gastric emptying study and a UGI(with

> barium swallow). Lo and Behold (lol) the tech didn't even need to go

> through the whole procedure after a few gulps of that stuff it was

> pretty obvious it wasn't going anywhere. My E is dilated and I didn't

> see any contractions at all...he said it was pretty amotile. It just

> kept filling with no emptying. I don't think that I have dealt with

> nay really understanding docs so far. When I had my first consult

with

> the GI PA he had the audacity to suggest my vomiting was

psychosomatic

> (huh????). And he really hasn't given me any info, thank goodness I

> went and did research on my own. I have yet to have a manometry done,

> and honestly I'm so sick of this I just want the surgery...like

> yesterday. There are days when I'm able to manage and keep solid food

> down, and then days where I can keep nothing down. I suppose it

> depends on what is stuck in my E and how much. I assume it must pass

> through somehow, who knows. Glad I found a place where people

actually

> know what I'm talking about and don't think it's all in my " head " .

>

> Patrice

>

January 24, 2008

Hi and thanks for responding =)

I live in washington state and I hear UW seattle, their swallowing

center and Dr. Pellegrini are THE ones to see about this. I already

called their office today. Hope I can get seen soon.

>

> Patrice,

> Where do you live?? Probably the most important thing, which others

> will tell you as well, is that you get a doctor that is VERY

> experienced with treating Achalasia, and a surgeon who has done a ton

> of surgeries for it.

> There are many people on this board that have gone to less experienced

> surgeons/doctors and have paid the price.

> If we know where you are located, we can recommend doctors.

> in NY

January 24, 2008

Hi Patrice,

Welcome to this group. Not sure how many posts you have read so far, but to me this board made everything very clear! Apart from information on Achalasia, it also offers support and friendship from people who know what you are going through. And that makes a big difference.

The funny thing about Achalasia is that it is different for everybody. Some people suffer for years and develop issues slowly. Others get all possible issues in only a short period. I suddenly got Achalasia in 2005, without ever having any problems with swallowing or eating ever. Some people can eat and drink things other people can´t. Some people have spasms, other don´t, Some regurgitate (food coming back up without having been in your stomach), others dont. Also no day is the same. Some days you cannot keep anything inside, the next day, no problem.!

On this board there are tips about diets and how to deal with spasms. You will have to try what works best for you.Not sur how many posts you have read, but the best advise you will get is to find yourself a specialist doctor. One who has experience with this disease and its treatment. The quality of your future life depends on it! If you have a dilated E. you will have to get treatmen somehow. Make sure you get treated by the BEST!! Not sure where you are, but there are several good doctors around.

Don´t ever doubt yourself, this is not in your head! You found this group and are on the right way!

Best wishes,Astrid

Re: Hello

I just recently found out I have achalasia. I actually went to theCareplace site first and was recommended to this site as it is moreestablished with more info. Thanks by the way ;>Anyhoo, my achalasia was VERY sudden. I was 30 years old, I was fine,no problems eating until 2006. Initially I didn't even have vomiting,I had really bad spasms and as such was diagnosed with GERD. GERDmedication NEVER seemed to work though...only drinking copious amountsof fluid would make the spasms stop. I would get a little nauseatedsometimes but no vomiting. Then I got pregnant with my 4th son(LOL...yup 4) in 2007 and thats when the spasms got so bad I had to goto ER because I thought I was having a M.I. or something. I washyperemetic, I couldn't stop puking although it was just bile andsaliva...goodness it was HORRIBLE. Then the vomiting started...andstill...being treated for GERD. I'm popping these pills

like candy andSTILL vomiting. But having no idea there was such a thing asesophageal dysmotility I just keep with the GERD diagnosis, thinkingit will get better after my child is born......ummm well it actuallygot worse. There were times I would forego food for days because Icouldn't keep solids OR liquids down. Of course after starving myselffor a few days then I was able to eat again. My spasms have decreased since giving birth but the vomiting hasincreased. I don't generally have problems swallowing though I cansometimes feel the lump as it goes down. Had an EGD and the Doc sawfood in my E and barely any in my stomach. She suggested a gastricemptying study and a UGI(with barium swallow). Lo and Behold (lol) thetech didn't even need to go through the whole procedure after a fewgulps of that stuff it was pretty obvious it wasn't going anywhere. MyE is dilated and I didn't see any contractions

at all...he said it waspretty amotile. It just kept filling with no emptying. I don't thinkthat I have dealt with nay really understanding docs so far. When Ihad my first consult with the GI PA he had the audacity to suggest myvomiting was psychosomatic (huh????). And he really hasn't given meany info, thank goodness I went and did research on my own. I have yetto have a manometry done, and honestly I'm so sick of this I just wantthe surgery...like yesterday. There are days when I'm able to manageand keep solid food down, and then days where I can keep nothing down.I suppose it depends on what is stuck in my E and how much. I assumeit must pass through somehow, who knows. Glad I found a place wherepeople actually know what I'm talking about and don't think it's allin my "head".Patrice>> Hi. I am a 29 year old single mom who was diagnosed with Achalasia > about a year and a half ago. I join this group around that time, and > then for a variety of personal reasons I left. I decided to rejoin > because "normal" people just don't understand. > > At the time of my diagnosis I underwent a balloon dilation, which after > getting over the initial pain of the procedure, worked pretty well. My > doctor is pretty laid back and says that I don't have to been with any > regular frequency but my question is when is it bad enough to go back > for the next step in treatment? Before the last diagnosis I was to the > point where I could barely keep food down -- only a little bit with > huge amounts of water, otherwise I would throw it back up. I

am having > increasing difficulty with swallowing but don't look forward to going > through another dilation... Any thoughts??> > Doreen in Michigan>

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January 24, 2008

Hi Robyn,

I am so sorry to read this news. It must be so difficult for you, just watching him lie there and not be able to do anything. Also him being asleep for four days makes it difficult as you can´t check how he responds. His heart beating very fast has to do with the low bload pressure. I am sure they are keeping a good eye on him. All I can say to you is that I will be thinking of both you and Joe! Look after yourself!

Love, Astrid

Hello

My name is Robyn my husband Joe posts here, his surgry is done, there was a large mishp, He lost 6pints of blood due to a accidental cut in the large arterie the intestine was attached. his blood pressue is low but his heart is beating very fast, they do not know if ther is any damage done to his heart or brain they will not know until he waks upph

Never miss a thing. Make your homepage.

January 24, 2008

Robyn - God luck with Joe and I will keep in him and you in my prayers. Millie - Virginia USAjmr12667 <jmr12667@...> wrote: My name is Robyn my husband Joe posts here, his surgry is done, there was a large mishp, He lost 6pints of blood due to a accidental cut in the large arterie the intestine was attached. his blood pressue is low but his heart is beating very fast, they do not know if ther is any damage done to his heart or brain they will not know until he waks upph

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January 25, 2008

Robyn, my heart goes out to you. I hope you are resting while

your mom and dad watch Joe. Many of us here will be praying

for Joe as well as you while you sleep.

Hugs,

MaggieWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

January 25, 2008

Hi Robyn

I hope you were able to get some sleep. You should take real good care of yourself too now, OK?

Joe is in my thoughts and so are you, hoping for a good outcome.

Love,

Isabella

Hello

it's 5:30 am I havenot left boston all night, Joe has had little improvment, he had afib and vtac where they needed to use electric like from tv to stop the v0tach. they think he will be ok the caffeine is beginning to help this am. My mom and dad will tak ove the bedside I will goto the hotel to try to get sleep. The md told me they will wake joe up fromthe meds on mon on tue, he will be startig on tpn todah. he has one of those swan caath that go throughthe into the heart using the normal course, that is coming out tomorrow or sunday. He is not out of the wood by no means, it seems like he is alwys getting blood or lots of iv fluids he is so puffy 164 night before surgery but now 190. The ph probe has not pickd up any acid or bile and the ng that is now I think on suction has little in it. I pray he'll be ok a little off will be ok, I still love him and I knwo tha pt will help him, I do not now

what to do if he dies. I had all teh flowers his old co-workers sent him as he is allergic and so am I my mom and dad ar here and brought mcd brekafast,gross, I'll take the coffe and cinnamon roll but keep the eggs.Robyn

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January 25, 2008

Hi Astrid,

My onset was sudden also, I never had any problem and then BAM!! And

it seems to have progressed quickly. I think the reason why I can eat

better on some days most likely has something to do with how much is

backed up down there to begin with. I " try " not to eat things that

will aggravate it and chew more but it's so hard to fight that urge

to swallow...especially since i'm usually eating on the run lol. I

live near UW Seattle so I hope this Pellegrini doctor or his

associate (starts with an " O " can't spell it) can see me SOON. thanks

for responding and for the advice. I've read Coke helps but since I

was lead to believe I had GERD, I have steered away from carbonated

stuff...lol...now to hear it may actually help not hinder. Go figure

=)

Patrice

>

> Hi Patrice,

>

> Welcome to this group. Not sure how many posts you have read so

far, but to me this board made everything very clear! Apart from

information on Achalasia, it also offers support and friendship from

people who know what you are going through. And that makes a big

difference.

>

> The funny thing about Achalasia is that it is different for

everybody. Some people suffer for years and develop issues slowly.

Others get all possible issues in only a short period. I suddenly got

Achalasia in 2005, without ever having any problems with swallowing

or eating ever. Some people can eat and drink things other people

can´t. Some people have spasms, other don´t, Some regurgitate (food

coming back up without having been in your stomach), others dont.

Also no day is the same. Some days you cannot keep anything inside,

the next day, no problem.!

>

> On this board there are tips about diets and how to deal with

spasms. You will have to try what works best for you.Not sur how many

posts you have read, but the best advise you will get is to find

yourself a specialist doctor. One who has experience with this

disease and its treatment. The quality of your future life depends on

it! If you have a dilated E. you will have to get treatmen somehow.

Make sure you get treated by the BEST!! Not sure where you are, but

there are several good doctors around.

>

> Don´t ever doubt yourself, this is not in your head! You found this

group and are on the right way!

>

> Best wishes,

> Astrid

January 25, 2008