Re: Hi it's Kate

[Guest guest]

Hi Kate- Yes there is one woman I know of on here who has been

pregnant with Achalasia.Her name is .You can find her email on

the boards somehwere Im sure.She just had a healthy baby.Also

I believe was pregnant while she was diagnosed with A.Shes always on

here and im sure she will pop in and be willing to answer any

questions you have along with everyone else here.This place has been

awesome for me in helping with my sons A.

I have not heard of not being able to get dialations after a

heller.Lots of people have.I would reccomend seeing a DR for your

A.Even if you dont want no more surgery they can give you something

for spasms.My son takes nifediphine and it works great for him.There

is also great info on what helps people with there spasms in the

files section of this website.(I think thats where)Lots of remedies

that may help you too.

I wish you well in your A but its not going to get better hun, only

worse.Do consider finding another DR to try and be able to live a

somewhat normal life.My son is 13 and is going through this all over

again cause his first surgery wasnt done right either.He said he

wants to be normal so if thats what he wants then he knows its gonna

take having another surgery or dialation. Life can be better for you

but you need a good DR to help you accomplish that.

Best of luck and welcome to the group!

>

> I want to thank everyone who responded to my first post. I have

been

> searching for a while for support from others who understand where

I

> am coming from.

> I was asked to tell a little more about me. I am 39, single, live

> with my eight year old son in Connecticut.

> I had a hellar myotomy last July. Within less than a month, I was

> the same as before the surgery. Two months after surgery my gastro

> doc gave me my first ( & last) shot of Botox, which lasted 1 1/2

> weeks (took about 1 week to start to work). I refuse to have

another

> shot. I don't see my gastro doc any longer. My surgeon only

believed

> the surgery didn't work after giving me a barium swallow test

within

> 1 month of surgery...I felt he didn't believe me, so I don't see

him

> any longer.

> Right now, I see no doctors for this problem. I deal with it. I

> experience extremely bad muscle spasms, (the pain has been

compared

> to heart attack pain) starts in my chest goes up the throat into

the

> lower jaw bone & ears. I normally try to breath/relax and drink

any

> fluid available to me at the time. (I always carry a bottle of

> something to drink...no matter where I go). I wake in the middle

of

> the night, getting sick from something that never went down. I go

> through real bad times that last for months, where anything I try

to

> swallow has less than 50/50 % chance of staying..had days

everything

> I ate/drank came back. At this time, I am able to keep most all of

> my food down...but that could end tomorrow.

> I do notice that some foods are worse for me than

others...bread..no

> good at any time, meat, eggs (no matter how cooked), melted

> cheese/pizza, foods that don't dissolve.

> When I eat, I have learned to eat real slow and do breathing

> exercises to help the food pass.

> Is there something out there that can be done to make eating

> enjoyable again? I don't want surgery, I won't do Botox, been told

> that because I had the surgery, that I cannot have dilatation

done,

> ever, because of the amount of esophageal muscle that was removed.

> I do want to say; just because I had no luck with either " remedy "

I

> wouldn't personally say it/they are not good for others. I read

> online after surgery, when you have " vigorous achalasia " surgery

> rarely works though.

> If anyone has questions/comments. please feel free to respond. I

> will always try to respond as soon as I can.

> One other thing, for the ladies, is there anyone out there that

has

> this that has been pregnant at the same time? I am, and need

> reassurance the baby will be nourished even if I am not.

>

[Guest guest]

HI Kate,

I just wanted to let you know that it is possible to carry a child

full term with " A " I carried 3 kids. They get the nutritents that

they need then you will get what is left. My first child was before

I knew I had " A " they told me it was morning sickness they were

wrong. My last 2 kids were after my heller myotomy. I am getting

ready for my second it has been about 10-11 years since my first I

feel that the last 2 pregnancies I had made me go down hill this

isn't true for everyone.

I also understand you not wanting to see a GI or Surgeon. I went

several years without seeing anyone. Please understand that you must

be seen. I searched forever to find a good GI and Surgeon. Don't

give up searching.

Also I have had several Diliation's done since my myotomy. I have

not had Botox they did offer but I refused. Keep looking never give

up. Lot's of Love Tamara

---

> > I want to thank everyone who responded to my first post. I have

> been

> > searching for a while for support from others who understand

where

> I

> > am coming from.

> > I was asked to tell a little more about me. I am 39, single,

live

> > with my eight year old son in Connecticut.

> > I had a hellar myotomy last July. Within less than a month, I

was

> > the same as before the surgery. Two months after surgery my

gastro

> > doc gave me my first ( & last) shot of Botox, which lasted 1 1/2

> > weeks (took about 1 week to start to work). I refuse to have

> another

> > shot. I don't see my gastro doc any longer. My surgeon only

> believed

> > the surgery didn't work after giving me a barium swallow test

> within

> > 1 month of surgery...I felt he didn't believe me, so I don't see

> him

> > any longer.

> > Right now, I see no doctors for this problem. I deal with it. I

> > experience extremely bad muscle spasms, (the pain has been

> compared

> > to heart attack pain) starts in my chest goes up the throat into

> the

> > lower jaw bone & ears. I normally try to breath/relax and drink

> any

> > fluid available to me at the time. (I always carry a bottle of

> > something to drink...no matter where I go). I wake in the middle

> of

> > the night, getting sick from something that never went down. I

go

> > through real bad times that last for months, where anything I

try

> to

> > swallow has less than 50/50 % chance of staying..had days

> everything

> > I ate/drank came back. At this time, I am able to keep most all

of

> > my food down...but that could end tomorrow.

> > I do notice that some foods are worse for me than

> others...bread..no

> > good at any time, meat, eggs (no matter how cooked), melted

> > cheese/pizza, foods that don't dissolve.

> > When I eat, I have learned to eat real slow and do breathing

> > exercises to help the food pass.

> > Is there something out there that can be done to make eating

> > enjoyable again? I don't want surgery, I won't do Botox, been

told

> > that because I had the surgery, that I cannot have dilatation

> done,

> > ever, because of the amount of esophageal muscle that was

removed.

> > I do want to say; just because I had no luck with

either " remedy "

> I

> > wouldn't personally say it/they are not good for others. I read

> > online after surgery, when you have " vigorous achalasia " surgery

> > rarely works though.

> > If anyone has questions/comments. please feel free to respond. I

> > will always try to respond as soon as I can.

> > One other thing, for the ladies, is there anyone out there that

> has

> > this that has been pregnant at the same time? I am, and need

> > reassurance the baby will be nourished even if I am not.

> >

>

[Guest guest]

Hi Kate,

I'm so sorry that you're having difficulty so soon after your

surgery. Like others, I would recommend that you keep looking for a

doctor to help you with A even if you don't want another surgery.

Doctors are human and there are some more knowlegable about A than

others. I'm currently looking at having a Heller done and am in the

process of interviewing 3 surgeons. I'm sorry I don't have any

recommendations myself. I'm rather new at this whole thing. But

the 'good food' 'bad food' file gave me some ideas as did the file on

what to do for the chest pains.

One thing you said caught my attention:

" I read online after surgery, when you have " vigorous achalasia "

surgery rarely works though. "

I'm wondering where you read this. Since I've been told my achalasia

is 'vigorous', I'm very interested in this.

Thanks,

Kathleen in Madison

[Guest guest]

>

> Hi Kate,

>

> I'm so sorry that you're having difficulty so soon after your

> surgery. Like others, I would recommend that you keep looking for

a

> doctor to help you with A even if you don't want another surgery.

> Doctors are human and there are some more knowlegable about A than

> others. I'm currently looking at having a Heller done and am in

the

> process of interviewing 3 surgeons. I'm sorry I don't have any

> recommendations myself. I'm rather new at this whole thing. But

> the 'good food' 'bad food' file gave me some ideas as did the file

on

> what to do for the chest pains.

>

> One thing you said caught my attention:

>

> " I read online after surgery, when you have " vigorous achalasia "

> surgery rarely works though. "

>

> I'm wondering where you read this. Since I've been told my

achalasia

> is 'vigorous', I'm very interested in this.

>

>

> Thanks,

>

> Kathleen in Madison

>

Kathleen,

I don't remember the website that I found the information on, but I

will try to find it again, and contact you. I do want to see another

doctor. I need to research more before picking the next one. I think

I was too eager for an end to all that was going on, to really pick

and choose correctly. I don't believe it was the doctor's fault for

anything that happens to me still...I do however believe there has

to be more than one option available to me. What are your symptoms?

How long have you been sick? What have you tried?

[Guest guest]

>

> HI Kate,

>

> I just wanted to let you know that it is possible to carry a child

> full term with " A " I carried 3 kids. They get the nutritents that

> they need then you will get what is left. My first child was

before

> I knew I had " A " they told me it was morning sickness they were

> wrong. My last 2 kids were after my heller myotomy. I am getting

> ready for my second it has been about 10-11 years since my first I

> feel that the last 2 pregnancies I had made me go down hill this

> isn't true for everyone.

>

> I also understand you not wanting to see a GI or Surgeon. I went

> several years without seeing anyone. Please understand that you

must

> be seen. I searched forever to find a good GI and Surgeon. Don't

> give up searching.

>

> Also I have had several Diliation's done since my myotomy. I have

> not had Botox they did offer but I refused. Keep looking never

give

> up. Lot's of Love Tamara

>

> ---

> Tamara,

How long have your dilitations work for? Both my surgeon and gastro

doc told me the risks were too high after the myotomy to do a

dilitation. Were you retaining food, and the dilitation was used to

expand the E to allow it to pass? I believe I would benefit from

something to cure the muscle spasms, now that the bottom of my E was

fixed. If my muscles could be controlled I think all else would fall

into place.

Thank you for your insight into your pregnancies...I was pregnant

back in 2004 when I first getting real sick (before I was diagnosed)

I lost the baby. I am pregnant again, so far the baby seems healthy,

I had looked on different websites for info on being pregnant w/A,

but didn't find very much. When are you due?

Kate

>

>

> > > I want to thank everyone who responded to my first post. I

have

> > been

> > > searching for a while for support from others who understand

> where

> > I

> > > am coming from.

> > > I was asked to tell a little more about me. I am 39, single,

> live

> > > with my eight year old son in Connecticut.

> > > I had a hellar myotomy last July. Within less than a month, I

> was

> > > the same as before the surgery. Two months after surgery my

> gastro

> > > doc gave me my first ( & last) shot of Botox, which lasted 1

1/2

> > > weeks (took about 1 week to start to work). I refuse to have

> > another

> > > shot. I don't see my gastro doc any longer. My surgeon only

> > believed

> > > the surgery didn't work after giving me a barium swallow test

> > within

> > > 1 month of surgery...I felt he didn't believe me, so I don't

see

> > him

> > > any longer.

> > > Right now, I see no doctors for this problem. I deal with it.

I

> > > experience extremely bad muscle spasms, (the pain has been

> > compared

> > > to heart attack pain) starts in my chest goes up the throat

into

> > the

> > > lower jaw bone & ears. I normally try to breath/relax and

drink

> > any

> > > fluid available to me at the time. (I always carry a bottle of

> > > something to drink...no matter where I go). I wake in the

middle

> > of

> > > the night, getting sick from something that never went down. I

> go

> > > through real bad times that last for months, where anything I

> try

> > to

> > > swallow has less than 50/50 % chance of staying..had days

> > everything

> > > I ate/drank came back. At this time, I am able to keep most

all

> of

> > > my food down...but that could end tomorrow.

> > > I do notice that some foods are worse for me than

> > others...bread..no

> > > good at any time, meat, eggs (no matter how cooked), melted

> > > cheese/pizza, foods that don't dissolve.

> > > When I eat, I have learned to eat real slow and do breathing

> > > exercises to help the food pass.

> > > Is there something out there that can be done to make eating

> > > enjoyable again? I don't want surgery, I won't do Botox, been

> told

> > > that because I had the surgery, that I cannot have dilatation

> > done,

> > > ever, because of the amount of esophageal muscle that was

> removed.

> > > I do want to say; just because I had no luck with

> either " remedy "

> > I

> > > wouldn't personally say it/they are not good for others. I

read

> > > online after surgery, when you have " vigorous achalasia "

surgery

> > > rarely works though.

> > > If anyone has questions/comments. please feel free to respond.

I

> > > will always try to respond as soon as I can.

> > > One other thing, for the ladies, is there anyone out there

that

> > has

> > > this that has been pregnant at the same time? I am, and need

> > > reassurance the baby will be nourished even if I am not.

> > >

> >

>

[Guest guest]

>

> Hi Kate- Yes there is one woman I know of on here who has been

> pregnant with Achalasia.Her name is .You can find her email

on

> the boards somehwere Im sure.She just had a healthy baby.Also

> I believe was pregnant while she was diagnosed with A.Shes always

on

> here and im sure she will pop in and be willing to answer any

> questions you have along with everyone else here.This place has

been

> awesome for me in helping with my sons A.

>

> I have not heard of not being able to get dialations after a

> heller.Lots of people have.I would reccomend seeing a DR for your

> A.Even if you dont want no more surgery they can give you

something

> for spasms.My son takes nifediphine and it works great for

him.There

> is also great info on what helps people with there spasms in the

> files section of this website.(I think thats where)Lots of

remedies

> that may help you too.

> I wish you well in your A but its not going to get better hun,

only

> worse.Do consider finding another DR to try and be able to live a

> somewhat normal life.My son is 13 and is going through this all

over

> again cause his first surgery wasnt done right either.He said he

> wants to be normal so if thats what he wants then he knows its

gonna

> take having another surgery or dialation. Life can be better for

you

> but you need a good DR to help you accomplish that.

> Best of luck and welcome to the group!

>

What is nifediphine? Is it a muscle relaxant? I read about nitrates

and calcium blockers...is it in that group?

>

>

[Guest guest]

> >

> > Hi Kate,

> >

> > I'm so sorry that you're having difficulty so soon after your

> > surgery. Like others, I would recommend that you keep looking

for

> a

> > doctor to help you with A even if you don't want another

surgery.

> > Doctors are human and there are some more knowlegable about A

than

> > others. I'm currently looking at having a Heller done and am in

> the

> > process of interviewing 3 surgeons. I'm sorry I don't have any

> > recommendations myself. I'm rather new at this whole thing.

But

> > the 'good food' 'bad food' file gave me some ideas as did the

file

> on

> > what to do for the chest pains.

> >

> > One thing you said caught my attention:

> >

> > " I read online after surgery, when you have " vigorous achalasia "

> > surgery rarely works though. "

> >

> > I'm wondering where you read this. Since I've been told my

> achalasia

> > is 'vigorous', I'm very interested in this.

> >

> >

> > Thanks,

> >

> > Kathleen in Madison

> >

> Kathleen,

> I don't remember the website that I found the information on, but

I

> will try to find it again, and contact you. I do want to see

another

> doctor. I need to research more before picking the next one. I

think

> I was too eager for an end to all that was going on, to really

pick

> and choose correctly. I don't believe it was the doctor's fault

for

> anything that happens to me still...I do however believe there has

> to be more than one option available to me. What are your

symptoms?

> How long have you been sick? What have you tried?

>

It's me again...I searched the web again I came across this website

gihealth.com...it stated that The best way to permanently weaken a

overly tight LES valve is to cut it . The procedure is called a

surgical myotomy and has over a 90% success rate in alleviating the

symptoms of achalasia. Surgery is not as successful in cases of

vigorous achalasia. Maybe I jumped the gun, and believed this type

of information too quickly ... I read the same type of information

soon after I had my surgery....

[Guest guest]

Hi Kate,

I'm a 40-year-old stay-at-home mother of three (ages 9, 6, and 3). My

symptoms started in December of last year (right around Christmas). I

started having 'heartburn' (which I never had before) and had some

problems swallowing solid foods; it felt like everything was stuck in

my chest. By April I was regurgatating about half of what I attempted

to eat and having trouble swallowing water (I thought it was because

the water was too cold). Then I had my first really bad chest pain.

So, I finally went to a doctor. I did a barium swallow and was told I

had a stricture and probably GERD.

I had a dilation (15mm) that lasted 5 weeks before the symptoms came

back. I had a second dialation (18mm) that lasted about 6 weeks.

Then I couldn't keep anything down, not even my salivia. I was

regurgatating all this foam. And the chest pains were terrible and

coming more often. And my esophogus started making strange gurgling

noises (it's hard to explain -- anyone else have that?) I had a third

dialation (to 20mm) and that's when they finally mentioned I may have

achalasia.

I had a manotomy that lasted forever (actually only an hour and a

half). The nurse couldn't figure out what she was seeing, so she

finally got a doctor who said something like 'yep, that's vigorous

achalasia'. So I came home and (thankfully) found this site.

I've learn so much here and have since talked to my GI and a thoracic

surgeon both of whom recommended a myotomy for me. As I mentioned,

I'm planning on meeting with two other suregeons to get their input on

what type of myotomy to get (and wheather I need a fundaplication).

So that's my story. I really am still researching my options so I

would be interested in anything you find indicating 'vigirous'

achalasia is different than 'classic' achalasia. Thanks!

-Kathleen in Madison

[Guest guest]

>

> Hi Kate,

>

> I'm a 40-year-old stay-at-home mother of three (ages 9, 6, and

3). My

> symptoms started in December of last year (right around

Christmas). I

> started having 'heartburn' (which I never had before) and had some

> problems swallowing solid foods; it felt like everything was stuck

in

> my chest. By April I was regurgatating about half of what I

attempted

> to eat and having trouble swallowing water (I thought it was

because

> the water was too cold). Then I had my first really bad chest

pain.

> So, I finally went to a doctor. I did a barium swallow and was

told I

> had a stricture and probably GERD.

>

> I had a dilation (15mm) that lasted 5 weeks before the symptoms

came

> back. I had a second dialation (18mm) that lasted about 6 weeks.

> Then I couldn't keep anything down, not even my salivia. I was

> regurgatating all this foam. And the chest pains were terrible

and

> coming more often. And my esophogus started making strange

gurgling

> noises (it's hard to explain -- anyone else have that?) I had a

third

> dialation (to 20mm) and that's when they finally mentioned I may

have

> achalasia.

>

> I had a manotomy that lasted forever (actually only an hour and a

> half). The nurse couldn't figure out what she was seeing, so she

> finally got a doctor who said something like 'yep, that's vigorous

> achalasia'. So I came home and (thankfully) found this site.

>

> I've learn so much here and have since talked to my GI and a

thoracic

> surgeon both of whom recommended a myotomy for me. As I

mentioned,

> I'm planning on meeting with two other suregeons to get their

input on

> what type of myotomy to get (and wheather I need a fundaplication).

>

> So that's my story. I really am still researching my options so I

> would be interested in anything you find indicating 'vigirous'

> achalasia is different than 'classic' achalasia. Thanks!

>

> -Kathleen in Madison

>

Kathleen,

I really have not had too much insight into what I have provided by

doctors. Most all of what I know or don't know I have found on line.

I do know that vigorous achalasia is different than " normal " due to:

In " normal " A the muscles fail to relax, and there are no

contractions in the E, in vigorous, the muscles also fail to

contract, but there are high pressure contractions in the E. My

myotomy opened up and relaxed the " bird beak " so that if any food

was able to escape the spasms in the upper chest, it was able to

pass to my stomach, where as before, I had trouble getting the food

into my stomach even if it was undetected by the spasms. I believe

that the surgery was good for that, but the spasms are what is

holding me back. I also read " Conclusion: " ... However, patients

with preoperative vigorous achalasia are more likely to experience

persistent regurgitation and chest pressure despite improvement in

dysphagia. " This is after having surgery, my belief is that the

surgery is great to open up and relax the lower part of the E, but

ineffective at decreasing the spasms that usually are located higher

up in the E...

more found " There is also evidence showing that younger patient and

patients with vigorous achalasia (achalasia patients with high

amplitude contractions in oesophageal body) are less responsive to

balloon dilatation

These are tidbits of information..not necessarily correct, but...

I am thinking, the more Iread these posts, the ones written back to

me and from others...I need to see another doc and get more medical

opinions from people then from the internet...I plan on contacting

my insurance company today, asking for some referals. I feel, I am

left in a black hole of confusion and wrong info...I will let you

know.

[Guest guest]

Kate, I am not pregnant now my baby is 5 so I guess she isn't a baby

anymore LOL. I really do think you need to start searching for a

better GI and surgeon. If they say there is no other option then

what are you suppose to do? We all know that you can not live the

way you are there are lot's of things you can try. My dilitations

lasted differntly each time. But I have had several since my myotomy

in 95. One of my GI did not want to deal with me or the pain I was

in and told me that he was going to put a feeding tube in me. So I

thought well gee that's the easy way out for him I don't think he

knows what he's talking about. So I started searching again. I have

found a good Doctor that listens to me gives me choices and then we

decide together. Don't give up Kate and do not except that you have

no options we all do and we all know that you have to have relief

even if you need to wait until you deliver the baby. There are lot's

on this sight that have had second myotomy's Lot's that have

dilitation's after there myotomy or yes even Botox wich most of us

wont do. Lot's of us are on meds that help the spasms read the files

you do have options. And if you are like me you just want to live so

you can raise you children. You can't do that in pain all the time.

My kids have seen to much aswell but they also know that Mommy is

trying her best to be healthy. Tamara

> >

> > ---

> > Tamara,

> How long have your dilitations work for? Both my surgeon and

gastro

> doc told me the risks were too high after the myotomy to do a

> dilitation. Were you retaining food, and the dilitation was used

to

> expand the E to allow it to pass? I believe I would benefit from

> something to cure the muscle spasms, now that the bottom of my E

was

> fixed. If my muscles could be controlled I think all else would

fall

> into place.

> Thank you for your insight into your pregnancies...I was pregnant

> back in 2004 when I first getting real sick (before I was

diagnosed)

> I lost the baby. I am pregnant again, so far the baby seems

healthy,

> I had looked on different websites for info on being pregnant w/A,

> but didn't find very much. When are you due?

> Kate

> >

> >

> > > > I want to thank everyone who responded to my first post. I

> have

> > > been

> > > > searching for a while for support from others who understand

> > where

> > > I

> > > > am coming from.

> > > > I was asked to tell a little more about me. I am 39, single,

> > live

> > > > with my eight year old son in Connecticut.

> > > > I had a hellar myotomy last July. Within less than a month,

I

> > was

> > > > the same as before the surgery. Two months after surgery my

> > gastro

> > > > doc gave me my first ( & last) shot of Botox, which lasted 1

> 1/2

> > > > weeks (took about 1 week to start to work). I refuse to have

> > > another

> > > > shot. I don't see my gastro doc any longer. My surgeon only

> > > believed

> > > > the surgery didn't work after giving me a barium swallow

test

> > > within

> > > > 1 month of surgery...I felt he didn't believe me, so I don't

> see

> > > him

> > > > any longer.

> > > > Right now, I see no doctors for this problem. I deal with

it.

> I

> > > > experience extremely bad muscle spasms, (the pain has been

> > > compared

> > > > to heart attack pain) starts in my chest goes up the throat

> into

> > > the

> > > > lower jaw bone & ears. I normally try to breath/relax and

> drink

> > > any

> > > > fluid available to me at the time. (I always carry a bottle

of

> > > > something to drink...no matter where I go). I wake in the

> middle

> > > of

> > > > the night, getting sick from something that never went down.

I

> > go

> > > > through real bad times that last for months, where anything

I

> > try

> > > to

> > > > swallow has less than 50/50 % chance of staying..had days

> > > everything

> > > > I ate/drank came back. At this time, I am able to keep most

> all

> > of

> > > > my food down...but that could end tomorrow.

> > > > I do notice that some foods are worse for me than

> > > others...bread..no

> > > > good at any time, meat, eggs (no matter how cooked), melted

> > > > cheese/pizza, foods that don't dissolve.

> > > > When I eat, I have learned to eat real slow and do breathing

> > > > exercises to help the food pass.

> > > > Is there something out there that can be done to make eating

> > > > enjoyable again? I don't want surgery, I won't do Botox,

been

> > told

> > > > that because I had the surgery, that I cannot have

dilatation

> > > done,

> > > > ever, because of the amount of esophageal muscle that was

> > removed.

> > > > I do want to say; just because I had no luck with

> > either " remedy "

> > > I

> > > > wouldn't personally say it/they are not good for others. I

> read

> > > > online after surgery, when you have " vigorous achalasia "

> surgery

> > > > rarely works though.

> > > > If anyone has questions/comments. please feel free to

respond.

> I

> > > > will always try to respond as soon as I can.

> > > > One other thing, for the ladies, is there anyone out there

> that

> > > has

> > > > this that has been pregnant at the same time? I am, and need

> > > > reassurance the baby will be nourished even if I am not.

> > > >

> > >

> >

>