Tonia

[Guest guest]

Hi Tonia: I haven't seen you post in a long time and I just wanted to tell

you how much My daughter appreciated the clothes. She is wearing them

often. Most of them had to be hemned because she is under tall. She has new

insurance and is hoping for a wls. I don't think it will be with some of the

ones that don't take insurance because she can't afford to fork out that kind

of money and since we are retired we can't afford to pay out that kind of

money either. Phyllis in Fla

[Guest guest]

Phyllis - tell your daughter that she is so welcome. I'm happy to be able

to pass

them on to someone that can use them. I do have another box that I've got

to

get to you - hopefully soon!!

Tonya in MN

3-28-01 Dr R

329/214/175???

Re: Tonia

Hi Tonia: I haven't seen you post in a long time and I just wanted to

tell

you how much My daughter appreciated the clothes. She is wearing them

often. Most of them had to be hemned because she is under tall. She has

new

insurance and is hoping for a wls. I don't think it will be with some of

the

ones that don't take insurance because she can't afford to fork out that

kind

of money and since we are retired we can't afford to pay out that kind of

money either. Phyllis in Fla

[Guest guest]

We were really never told what to eat or not.They told to eat

what he could tolerate. He does take prevacid for the acid.He also

had the fundo thing for the acid reflux done too. He was eating a

fried egg a few minutes ago and it got stuck really bad.He tried the

soda but that didnt help.It finally cleared. He like gasp for air

when something gets stuck- he says that helps for it to go down but

its like this loud croupie cough sound but he is sucking in air to

make it go down.Any one else?? I am kinda scared about the soda

thing - hes been off them for a few months cause of the acid reflux

he was told he had.

-- In achalasia , carolina moon <wooleeacre@y...>

wrote:

>

> I would have to caution you on the soda. I dont know if you said

he had LAP or not, but our surgeon said NO SODA !

> not for the first 4 months anyway.. and only in limited

quantities. Also you dont say if he is on protonix... to limit the

acid production while he is healing....

> I wonder about the diet also, as we could not have tortilla,

lettace, bread, chicken, meats, or anything yummy like 'till well

after 6 weeks, and some not till after the 3 month check up..

> Carolyn mom of Cameron.

>

>

> Wooleeacre Productions

> Custom Screenprinting

> on a small scale!

>

>

>

>

>

>

>

> ---------------------------------

> Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

[Guest guest]

Yes has been keeping most of his food down.He just has such a

hard time getting it to go down.Its a total struggle withgasping and

burping and so on. Weird huh? He say thats the only way it will

finally go down. Yesterday was a great day cause he ate real food

with no problems- today soup and a over easy fried egg was

problems.He also gets the spasms but hasnt for a few days.I am kinda

scared to try the soda cause he went off it cause the Drs said too

because they thought he had acid reflux.He doesnt have it now but

dont know if I should.I did have him take a few sips a few momonts

ago when he had trouble getting his egg to go down.He said didnt

help though.Thanks for the suggestion though, maybe it will help

later on at another time or when he heals more????? I dont think hes

scared to eat- he tells me hes starving and doesnt care if it gets

stuck or not hes gotta eat so I dont think hes scared- I really t

hink its getting stuck every time.I dont know!! Thanks again!

> Hi Tonia, I have a 12 yr. old son and I can understand that you

must be

> beside yourself. There have been a lot of good suggestions on the

board.

> Is he keeping ANYTHING down at all? Definitely have him try a bit

of

> carbonation before eating something soft.

>

> I will tell you that I DID continue losing weight after my Heller,

but I

> COULD get anything soft down. However, I had to have very small

portions (I

> also had a partial wrap). If I ate or drank too much, I got

severe spasms

> (and my portions were VERY SMALL). Between the spasms and the

regurgitating

> I had had before surgery, I became very stressed about eating and

that led

> to me eating less and still losing.

>

> You may want to consider a few things:

>

> If it seems physical - he can't feel things going down to his

stomach (try

> cold things), then the suggestion to get a barium swallow again is

excellent

>

>

> If it could also have some psychological components, please be

sure to ask him if he is scared to eat. It IS scary, if you have

been ending up vomiting; spasming or aspirating. None of that is

fun, esp. for a kid who doesn't probably understand much of it at

all. I went on Paxil, initially because the Doc was trying to help

my anxiety about eating...he didn't know I was also having some

depression issues, but that's another story. Cindi in PA

>

[Guest guest]

TONIA ...

Please tell us your Doctors Name and Hospital Name.

Thank you

Kathie in Pittsburgh

-- In achalasia , " toniasdogsandi " <toniasdogsandi@y...>

wrote:

[Guest guest]

I have noticed that I have a huge problem with fried

food, don't know if its the grease, or what.

--- toniasdogsandi <toniasdogsandi@...> wrote:

> Yesterday was a great day cause he

> ate real food

> with no problems- today soup and a over easy fried

> egg was

> problems

__________________________________________________

[Guest guest]

Tonia:

It seems really strange to me that your surgeon is not taking the extra step to

do a barium

swallow, just to be sure what is really going on at this point. I had one the

second day

post op and could see the food going down. Then when I dealt with slow movement

of

food during the early weeks after surgery, I had the picture that the food was

actually

going down, which gave some psychological relief.

I would be dialing and bugging doctors if it were my child.

Hugs

Peggy

> Yes has been keeping most of his food down.He just has such a

> hard time getting it to go down.Its a total struggle withgasping and

> burping and so on. Weird huh? He say thats the only way it will

> finally go down. Yesterday was a great day cause he ate real food

> with no problems- today soup and a over easy fried egg was

> problems.He also gets the spasms but hasnt for a few days.I am kinda

> scared to try the soda cause he went off it cause the Drs said too

> because they thought he had acid reflux.He doesnt have it now but

> dont know if I should.I did have him take a few sips a few momonts

> ago when he had trouble getting his egg to go down.He said didnt

> help though.Thanks for the suggestion though, maybe it will help

> later on at another time or when he heals more????? I dont think hes

> scared to eat- he tells me hes starving and doesnt care if it gets

> stuck or not hes gotta eat so I dont think hes scared- I really t

> hink its getting stuck every time.I dont know!! Thanks again!

>

>

>

>

>

> > Hi Tonia, I have a 12 yr. old son and I can understand that you

> must be

> > beside yourself. There have been a lot of good suggestions on the

> board.

> > Is he keeping ANYTHING down at all? Definitely have him try a bit

> of

> > carbonation before eating something soft.

> >

> > I will tell you that I DID continue losing weight after my Heller,

> but I

> > COULD get anything soft down. However, I had to have very small

> portions (I

> > also had a partial wrap). If I ate or drank too much, I got

> severe spasms

> > (and my portions were VERY SMALL). Between the spasms and the

> regurgitating

> > I had had before surgery, I became very stressed about eating and

> that led

> > to me eating less and still losing.

> >

> > You may want to consider a few things:

> >

> > If it seems physical - he can't feel things going down to his

> stomach (try

> > cold things), then the suggestion to get a barium swallow again is

> excellent

> >

> >

> > If it could also have some psychological components, please be

> sure to ask him if he is scared to eat. It IS scary, if you have

> been ending up vomiting; spasming or aspirating. None of that is

> fun, esp. for a kid who doesn't probably understand much of it at

> all. I went on Paxil, initially because the Doc was trying to help

> my anxiety about eating...he didn't know I was also having some

> depression issues, but that's another story. Cindi in PA

> >

>

[Guest guest]

They did do a barium swallow on the 1st whwen we went to the ER in

Charlottsville.They said it was going down just slowly cause of the

swelling.Everything looked normal they said.I saw it and it was like

trickling out very very slowly and very little at a time.they said

it was normal due to swelling cause it had only been 3

weeks.According to that its fine but they are doing another

endoscopy on the 3oth to check everything internaly is fine.( Iguess

to see if the opening is big enough or whatever)

Trust me I have been on the phone LOTS and they have been following

up on him by calling us and stuff.Im doing all I can on my end- I

cant force them to do any more test or whatever.All I CAN DO IS WAIT

FOR THIS SCOPE TEST ON THE 30TH TO KNOW WHAT AND IF THINGS ARE

WORKING RIGHT.THEN TAKE IT FROM THERE.Thanks for your post,Tonia

> > Yes has been keeping most of his food down.He just has

such a

> > hard time getting it to go down.Its a total struggle withgasping

and

> > burping and so on. Weird huh? He say thats the only way it will

> > finally go down. Yesterday was a great day cause he ate real

food

> > with no problems- today soup and a over easy fried egg was

> > problems.He also gets the spasms but hasnt for a few days.I am

kinda

> > scared to try the soda cause he went off it cause the Drs said

too

> > because they thought he had acid reflux.He doesnt have it now

but

> > dont know if I should.I did have him take a few sips a few

momonts

> > ago when he had trouble getting his egg to go down.He said didnt

> > help though.Thanks for the suggestion though, maybe it will help

> > later on at another time or when he heals more????? I dont think

hes

> > scared to eat- he tells me hes starving and doesnt care if it

gets

> > stuck or not hes gotta eat so I dont think hes scared- I really

t

> > hink its getting stuck every time.I dont know!! Thanks again!

> >

> >

> >

> >

> >

> > > Hi Tonia, I have a 12 yr. old son and I can understand that

you

> > must be

> > > beside yourself. There have been a lot of good suggestions on

the

> > board.

> > > Is he keeping ANYTHING down at all? Definitely have him try a

bit

> > of

> > > carbonation before eating something soft.

> > >

> > > I will tell you that I DID continue losing weight after my

Heller,

> > but I

> > > COULD get anything soft down. However, I had to have very

small

> > portions (I

> > > also had a partial wrap). If I ate or drank too much, I got

> > severe spasms

> > > (and my portions were VERY SMALL). Between the spasms and the

> > regurgitating

> > > I had had before surgery, I became very stressed about eating

and

> > that led

> > > to me eating less and still losing.

> > >

> > > You may want to consider a few things:

> > >

> > > If it seems physical - he can't feel things going down to his

> > stomach (try

> > > cold things), then the suggestion to get a barium swallow

again is

> > excellent

> > >

> > >

> > > If it could also have some psychological components, please be

> > sure to ask him if he is scared to eat. It IS scary, if you

have

> > been ending up vomiting; spasming or aspirating. None of that

is

> > fun, esp. for a kid who doesn't probably understand much of it

at

> > all. I went on Paxil, initially because the Doc was trying to

help

> > my anxiety about eating...he didn't know I was also having some

> > depression issues, but that's another story. Cindi in PA

> > >

> >

>

[Guest guest]

They did do a barium swallow on the 1st whwen we went to the ER in

Charlottsville.They said it was going down just slowly cause of the

swelling.Everything looked normal they said.I saw it and it was like

trickling out very very slowly and very little at a time.they said

it was normal due to swelling cause it had only been 3

weeks.According to that its fine but they are doing another

endoscopy on the 3oth to check everything internaly is fine.( Iguess

to see if the opening is big enough or whatever)

Trust me I have been on the phone LOTS and they have been following

up on him by calling us and stuff.Im doing all I can on my end- I

cant force them to do any more test or whatever.All I CAN DO IS WAIT

FOR THIS SCOPE TEST ON THE 30TH TO KNOW WHAT AND IF THINGS ARE

WORKING RIGHT.THEN TAKE IT FROM THERE.Thanks for your post,Tonia

> > Yes has been keeping most of his food down.He just has

such a

> > hard time getting it to go down.Its a total struggle withgasping

and

> > burping and so on. Weird huh? He say thats the only way it will

> > finally go down. Yesterday was a great day cause he ate real

food

> > with no problems- today soup and a over easy fried egg was

> > problems.He also gets the spasms but hasnt for a few days.I am

kinda

> > scared to try the soda cause he went off it cause the Drs said

too

> > because they thought he had acid reflux.He doesnt have it now

but

> > dont know if I should.I did have him take a few sips a few

momonts

> > ago when he had trouble getting his egg to go down.He said didnt

> > help though.Thanks for the suggestion though, maybe it will help

> > later on at another time or when he heals more????? I dont think

hes

> > scared to eat- he tells me hes starving and doesnt care if it

gets

> > stuck or not hes gotta eat so I dont think hes scared- I really

t

> > hink its getting stuck every time.I dont know!! Thanks again!

> >

> >

> >

> >

> >

> > > Hi Tonia, I have a 12 yr. old son and I can understand that

you

> > must be

> > > beside yourself. There have been a lot of good suggestions on

the

> > board.

> > > Is he keeping ANYTHING down at all? Definitely have him try a

bit

> > of

> > > carbonation before eating something soft.

> > >

> > > I will tell you that I DID continue losing weight after my

Heller,

> > but I

> > > COULD get anything soft down. However, I had to have very

small

> > portions (I

> > > also had a partial wrap). If I ate or drank too much, I got

> > severe spasms

> > > (and my portions were VERY SMALL). Between the spasms and the

> > regurgitating

> > > I had had before surgery, I became very stressed about eating

and

> > that led

> > > to me eating less and still losing.

> > >

> > > You may want to consider a few things:

> > >

> > > If it seems physical - he can't feel things going down to his

> > stomach (try

> > > cold things), then the suggestion to get a barium swallow

again is

> > excellent

> > >

> > >

> > > If it could also have some psychological components, please be

> > sure to ask him if he is scared to eat. It IS scary, if you

have

> > been ending up vomiting; spasming or aspirating. None of that

is

> > fun, esp. for a kid who doesn't probably understand much of it

at

> > all. I went on Paxil, initially because the Doc was trying to

help

> > my anxiety about eating...he didn't know I was also having some

> > depression issues, but that's another story. Cindi in PA

> > >

> >

>

[Guest guest]

> > > Yes has been keeping most of his food down.He just has

> such a

> > > hard time getting it to go down.Its a total struggle withgasping

> and

> > > burping and so on. Weird huh? He say thats the only way it will

> > > finally go down. Yesterday was a great day cause he ate real

> food

> > > with no problems- today soup and a over easy fried egg was

> > > problems.He also gets the spasms but hasnt for a few days.I am

> kinda

> > > scared to try the soda cause he went off it cause the Drs said

> too

> > > because they thought he had acid reflux.He doesnt have it now

> but

> > > dont know if I should.I did have him take a few sips a few

> momonts

> > > ago when he had trouble getting his egg to go down.He said didnt

> > > help though.Thanks for the suggestion though, maybe it will help

> > > later on at another time or when he heals more????? I dont think

> hes

> > > scared to eat- he tells me hes starving and doesnt care if it

> gets

> > > stuck or not hes gotta eat so I dont think hes scared- I really

> t

> > > hink its getting stuck every time.I dont know!! Thanks again!

> > >

> > >

> > >

> > >

> > >

> > > > Hi Tonia, I have a 12 yr. old son and I can understand that

> you

> > > must be

> > > > beside yourself. There have been a lot of good suggestions on

> the

> > > board.

> > > > Is he keeping ANYTHING down at all? Definitely have him try a

> bit

> > > of

> > > > carbonation before eating something soft.

> > > >

> > > > I will tell you that I DID continue losing weight after my

> Heller,

> > > but I

> > > > COULD get anything soft down. However, I had to have very

> small

> > > portions (I

> > > > also had a partial wrap). If I ate or drank too much, I got

> > > severe spasms

> > > > (and my portions were VERY SMALL). Between the spasms and the

> > > regurgitating

> > > > I had had before surgery, I became very stressed about eating

> and

> > > that led

> > > > to me eating less and still losing.

> > > >

> > > > You may want to consider a few things:

> > > >

> > > > If it seems physical - he can't feel things going down to his

> > > stomach (try

> > > > cold things), then the suggestion to get a barium swallow

> again is

> > > excellent

> > > >

> > > >

> > > > If it could also have some psychological components, please be

> > > sure to ask him if he is scared to eat. It IS scary, if you

> have

> > > been ending up vomiting; spasming or aspirating. None of that

> is

> > > fun, esp. for a kid who doesn't probably understand much of it

> at

> > > all. I went on Paxil, initially because the Doc was trying to

> help

> > > my anxiety about eating...he didn't know I was also having some

> > > depression issues, but that's another story. Cindi in PA

> > > >

> > >

> >

>

[Guest guest]

I dont understand what you are saying.They are doing another scope

if he is no better by the 30th.As far as him being untreated with

achalasia- he has been treated he had the heller done and the fundo

done.Thats why if hes not better they wanna go down to make sure

everything is up to par and working like it should be.Maybe they

think its too tight??

> > > > Yes has been keeping most of his food down.He just has

> > such a

> > > > hard time getting it to go down.Its a total struggle

withgasping

> > and

> > > > burping and so on. Weird huh? He say thats the only way it

will

> > > > finally go down. Yesterday was a great day cause he ate real

> > food

> > > > with no problems- today soup and a over easy fried egg was

> > > > problems.He also gets the spasms but hasnt for a few days.I

am

> > kinda

> > > > scared to try the soda cause he went off it cause the Drs

said

> > too

> > > > because they thought he had acid reflux.He doesnt have it

now

> > but

> > > > dont know if I should.I did have him take a few sips a few

> > momonts

> > > > ago when he had trouble getting his egg to go down.He said

didnt

> > > > help though.Thanks for the suggestion though, maybe it will

help

> > > > later on at another time or when he heals more????? I dont

think

> > hes

> > > > scared to eat- he tells me hes starving and doesnt care if

it

> > gets

> > > > stuck or not hes gotta eat so I dont think hes scared- I

really

> > t

> > > > hink its getting stuck every time.I dont know!! Thanks again!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > > Hi Tonia, I have a 12 yr. old son and I can understand

that

> > you

> > > > must be

> > > > > beside yourself. There have been a lot of good

suggestions on

> > the

> > > > board.

> > > > > Is he keeping ANYTHING down at all? Definitely have him

try a

> > bit

> > > > of

> > > > > carbonation before eating something soft.

> > > > >

> > > > > I will tell you that I DID continue losing weight after my

> > Heller,

> > > > but I

> > > > > COULD get anything soft down. However, I had to have very

> > small

> > > > portions (I

> > > > > also had a partial wrap). If I ate or drank too much, I

got

> > > > severe spasms

> > > > > (and my portions were VERY SMALL). Between the spasms and

the

> > > > regurgitating

> > > > > I had had before surgery, I became very stressed about

eating

> > and

> > > > that led

> > > > > to me eating less and still losing.

> > > > >

> > > > > You may want to consider a few things:

> > > > >

> > > > > If it seems physical - he can't feel things going down to

his

> > > > stomach (try

> > > > > cold things), then the suggestion to get a barium swallow

> > again is

> > > > excellent

> > > > >

> > > > >

> > > > > If it could also have some psychological components,

please be

> > > > sure to ask him if he is scared to eat. It IS scary, if you

> > have

> > > > been ending up vomiting; spasming or aspirating. None of

that

> > is

> > > > fun, esp. for a kid who doesn't probably understand much of

it

> > at

> > > > all. I went on Paxil, initially because the Doc was trying

to

> > help

> > > > my anxiety about eating...he didn't know I was also having

some

> > > > depression issues, but that's another story. Cindi in PA

> > > > >

> > > >

> > >

> >

>

[Guest guest]

For me at least it's the sulfites in the fried stuff. Especially

french fries.

>

> > Yesterday was a great day cause he

> > ate real food

> > with no problems- today soup and a over easy fried

> > egg was

> > problems

>

> __________________________________________________

>

[Guest guest]

But he doesnt need to suffer major symptoms - Since my surgery 8 mos ago I have

minor

symptoms sometimes - and sometimes I even forget I have A. Jumping up and down

to

get food down hardley suggests a successful surgery after reading several of

your posts I

would go back to the DR.>

> Tonia - unfortunately, your son has a chronic, incurable, degenerative

> disease. It is a sad thing initially, but I can honestly say that I'm glad

> now that I have A. I have learned a lot through it and I think I'm a better

> person because of it. But it was a major downer when I came to the stark

> realization that I would always have this.

>

> More treatment is a probability. The surgery is to make our lives more

> comfortable, not to cure A. Without treatment, the E can continue to

> degenerate and eating and drinking can even get to the point of being

> impossible. In addition, breathing can be affected if food is aspirated.

>

> The great thing is that many people have great results from treatment and

> they go on to live normal lives. I'm sure your son will be one of those.

> Surgery helps in 93% of cases, when you are dealing with a competant surgeon

> Further treatment may still be needed, but it beats choking and/or

> aspirating!

>

> I'm sorry to have to be blunt - I wish my GI had been blunt, but maybe it was

better for

me to find out in the comfort of my office where I could be alone! Please keep

us posted

as to his test results next week. Cindi in PA

>

[Guest guest]

There are waiting list for these drs I spoke with 1-2 months.Two

outta 3 recomended following up with his Dr that done the surgery

first.....but did say its unusual as you all have.

There are two issues, one is is trouble swallowing and the other is

that he has spasms which lots of people here say they do because

of " A " So.. I am looking for whats gonna help relieve and ease

them.According to what I have read these spasms are normal with

Achalasia after surgery and nothing causes them.Im not wanting the

drugs to mask anything- I want something to give him relief like

other people here, so when he has them.What do you do for your son?

Does he get them?

Money is not a issue- but dont have thousands to go to and from

diffrent states to see other DRs at this point.Yes!!!!! I want my

son better but there are steps that i need to take first.For me

first is giving his Dr the chance to see what the problem is.It

could be something minor or major but I cant damn him for something

if I dont even give him the chance to see whats wrong.Some here say

they have to have dialations after surgery maybe thats the case

here.I do have great insurance but yes it covers certain Drs and

Specialist.If something major is wrong and needs more surgery due to

something being screwed up from the first time, then I will pursue

my insurance to accomadate me to go to another Dr and if it

wont..then I will do whatever needed to get him the help he

needs.DRs do make mistakes just as we all do and it may be something

minor.I want to give this dr the chance to find out what is wrong

before I go taking other actions.My son really likes his DR AND is

not thrilled about not being better but even he wants to see what

the DRs think is wrong before we go see another one.We have 2 days

now.I do thank god yesterday was an awesome day and so was the day

before no problems.He even had thin crust pizza from dominoes-kid

was in heaven! I do thank you all for your advice and concern but at

some points from certain post it almost makes me feel as if I am not

doing what I should be as his mother and that, bothers me.Maybe I am

wrong and going through a lot of mixed emotions right now but yes

thats kinda how im feeling.I guess if some of you havent gone thru

these problems after surgery like we have then its easier said than

done to just up and start going from state to state to see other Drs

and dont really know the main reason yet.Yes.. he should be better

and hes not yet but I kinda feel my next step is to follow up with

his DR and take it further after that.Thats even according to the

two other drs that said the same.You also need to be referred.If it

is something major we will be seeing another specailist regardless

but I will cross that bridge on Monday and hopefully wont need too.I

hope I am not coming across the wrong way and taking things the

wrong way here but maybe Im just misunderstanding and totaling

loosing it.

> Ihave heard back from a few Drs and they are also saying my son

should

> not be having these problems.(as we all knew)When I go Monday I

will

> be sure to let this Dr know that other DRs are even saying its

unusual

> and is not normal.What kinda come back can he possibly say after

> that?? I have already warned my husband that the police will have

to

> carry me out of there if they dont find the problem! He has had 3

> horrible spasms this week and has vomited 3 x yesterday.

>

> Question- How many of you take meds to help with the E spams?If so

> what do you take? The first time the drinking water actually

helped

> but nothing eased up on the other 2 but time.I want to find out

about

> a med or something that he will be able to have with him when hes

away

> from home and should have a spell.Whats he to do when he goes back

to

> school?Sports? I did read about the caratafe liquid .Iknow its no

cure

> out there but something should be available to help ease the pain.

I

> have read that some take nitroglycerin,muscle

relaxers,antidepressents

> etc..Any one here-Thanks Tonia

>

>

>

>

>

>

>

>

[Guest guest]

Dear Tonia,Setting aside your feelings of being questioned about your decisions... let me play the advocate... first with strong persistence I believe you could get into the experienced doctors this coming week. The appointment person delays new patients for a while, but there is always room for patients. It takes aggression. There is a doctors' club to not step on other doctors, they know these people and don't want to steal patients. (May I mention doctors are similar to realtors... a realtor shouldn't bad mouth another realtor to a client or potential client because word gets back and the realtor may have to go crawling back with another client.... same with doctors in specialized fields.) Similar problem with insurance and referrals, especially if you have to go out of state. However, I think doctors are willing to work with your insurance company, perhaps name it here and others will help, to explain that achalasia, especially in a teenager is highly highly specialized and his treatment has already been compromised. Achalasia specialists like us to add to their resume so to speak, especially a child. I can't imagine any surgeon turning you down if you speak directly to them or leave a tearful message about your son. Chances are if you name the doctors who did the work they are already familiar with them... it is a small group who work on achalasia patients. I imagine by that point you will be crying to the surgeon, or I would be, if he/she turns you away, then they have no heart. These surgeons are specialized and aren't overloaded in their surgery schedules, they teach and have some flexibility. They are usually heads of departments and can get operating rooms or services whenever they need them.Now back to your doctors... Guessing the scenario.....the doctors will either reorder the tests then perhaps say, lets see what happens.... okay maybe that is proper but REALLY do you trust their advice?????? Second scenario, they decide to do a dialation. In normal circumstances a dialation has a risk factor of 5-10% with experienced doctors... could be wrong here. If there is a perforation they usually have to reopen and that is often an open thoracic surgery. Not pleasant at all and another whole set of risk factors, not to be ignored. Do you want surgeons doing that that were not successful before???????? Perforations are much more common among doctors who don't do them often let alone a teenager. Just like everything experience lowers the risk. You won't have a choice if there is a perforation. Open myotomy is major recovery.Tonia, mothering is very difficult and you second guess yourself, all along the road. It's okay if you are angry at me. If you lived down the street I'd be telling you this in person. We would both be crying. Please try to set aside and self doubts you feel, especially raised in this group, and try to look at it analytically, without emotion. Yes.... many of us did not have the complications after surgery you son had.... and let me get in your face here!!!! WE HAD GOOD DOCTORS.There have been problems as early as 6 months and dialations were required but that is an acceptable risk for a myotomy. There is something wrong with your son and my concern isn't so much that there IS something wrong, but that your doctors told you for a month that IT WAS NORMAL.The pain your son has is visible to you and you are most worried about that, but again dealing with the pain is the least of your problems. I'm not writing this and may I mention from private suppport from other members, to get in your face.... my heart is breaking for your son. My son is 11 so I understand the emotion. I also understand the defensiveness if someone even hints of a critique of decisions we make concerning him. But putting aside MY emotions and looking at the facts and the potential scenarios we try to make decisions that will make our kids strong in the future.My expectation here is that you will be so angry with me that you will get on the phone Monday just to prove me wrong. If being angry at me is what it takes, then I'll take it. Do not accept delayed appointments. If you have to decide where you want to go... go on a "vacation" there and rush him into the emergency room when he has a spasm. You'll get lots of tests and work your way up to the surgeon in a few hours. They are on call. Now that is a sneaky way to do it. But if you have to you find a way.I'm not confrontational, well almost never, so this tough love talk is not that common for me, but in this group I do often brave up and say what others are not willing to say. This is not an attack on you. I've been through difficult situations with my parents and gone from local doctors to the best. My father had a very rare condition called AVM of the spine, that eventually paralyzed him. He started locally in Montana, went through tests, bad diagnosis and the best hospitals. He was finally referred to a surgeon who had had success with people living after surgery. Happened to be in So Cal. This is before the internet. I watched my 220 # proud father crawl on his hands and knees into a car when it was too hard to scoot over from a wheel chair. He had to self catheterize himself every time he had to urinate for about 12 years. After surgery he eventually rehabbed enough to walk, then fell and broke his hip and that set him back for another year until he eventuallly was able to walk with a cane. He didn't ever recover any feeling below his waist. In the meantime my mother was dying of breast cancer. After my mother died he developed leukemia and it had gone undiagnosed for 2 years by a local DO (OD)??? because he thought Dad was depressed and didn't do a basic CBC. He had flu symptoms for 2 years. With the type of leukemia he had, had it been found earlier it wouldn't have mutated to end stages so quickly. Soooo after being in a hospital for a few months for chemo, his platelets kept getting low, this was in the best hospital in Montana, and they couldn't get the platelets to stick. They wanted to send him to MD Cancer Center in Houston. I dragged my feet, cried and moaned and groaned. Well, we got to Houston finally.... turns out the platelet problem was that the Montana "experienced" doctors for some lack of expertise, didn't give Benadryl and Tylenol at the time of the platelet transfusion. That was common procedure. They kept him alive as an outpatient in Houston or back home in Montana for a few more years. Tylenol and Benadryl solved the immediate problem. Now you may snicker about a Montana hospital, but the doctors were the best Montana had to offer and in fact, many good doctors go to Montana because of the environment and the fact there aren't many HMO's. Benadryl and Tylenol, how about that?So that I why I am so vehement about the doctors you go to.Please get angry with me, and take that anger out on dialing the phone.Sandy in So Cal... today's lesson is over.> > Ihave heard back from a few Drs and they are also saying my son > should > > not be having these problems.(as we all knew)When I go Monday I > will > > be sure to let this Dr know that other DRs are even saying its > unusual > > and is not normal.What kinda come back can he possibly say after > > that?? I have already warned my husband that the police will have > to > > carry me out of there if they dont find the problem! He has had 3 > > horrible spasms this week and has vomited 3 x yesterday.> > > > Question- How many of you take meds to help with the E spams?If so > > what do you take? The first time the drinking water actually > helped > > but nothing eased up on the other 2 but time.I want to find out > about > > a med or something that he will be able to have with him when hes > away > > from home and should have a spell.Whats he to do when he goes back > to > > school?Sports? I did read about the caratafe liquid .Iknow its no > cure > > out there but something should be available to help ease the pain. > I > > have read that some take nitroglycerin,muscle > relaxers,antidepressents > > etc..Any one here-Thanks Tonia> > > > > > > > > > > > > > > >

[Guest guest]

Whew, between Sandy in So Cal & Tonia's last message I'm exhausted.

Let's all take a step back now, while Tonia takes one forward.

> > > Ihave heard back from a few Drs and they are also saying my son

> > should

> > > not be having these problems.(as we all knew)When I go Monday I

> > will

> > > be sure to let this Dr know that other DRs are even saying its

> > unusual

> > > and is not normal.What kinda come back can he possibly say

after

> > > that?? I have already warned my husband that the police will

have

> > to

> > > carry me out of there if they dont find the problem! He has had

3

> > > horrible spasms this week and has vomited 3 x yesterday.

> > >

> > > Question- How many of you take meds to help with the E spams?If

so

> > > what do you take? The first time the drinking water actually

> > helped

> > > but nothing eased up on the other 2 but time.I want to find out

> > about

> > > a med or something that he will be able to have with him when

hes

> > away

> > > from home and should have a spell.Whats he to do when he goes

back

> > to

> > > school?Sports? I did read about the caratafe liquid .Iknow its

no

> > cure

> > > out there but something should be available to help ease the

pain.

> > I

> > > have read that some take nitroglycerin,muscle

> > relaxers,antidepressents

> > > etc..Any one here-Thanks Tonia

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks Dawn!!-Tonia

-- In achalasia , " dawn " <rirey20@s...> wrote:

>

> Please take advice from others in this group and apply it to your

> son's situation and see wihat works best for your family. Some

> people posting here recommend certain drugs for spasms..I take

> nothing because that works for me. Sometimes I just eat. Then

> again..I can eat with no problems so that works for me. Your

son's

> surgery is still relatively new. Has it been a month? EVERYONE'S

> situation on this board is different, so whatever is going on with

> your son is not so radical. Yes some people here do not improve so

> drastically.

>

> Of course, have concern for your son. And you are doing NOTHING

> WRONG. We all know you what your son to be better, as does he. You

> do not have to answer to this group on the decisions you make on

> behalf of your son.

>

> I wish nothing but the best for your son and for your family. I

know

> I have written to you before that this disease is very

inconsistent.

> My dr. from Cleveland Clinic said " well your symptoms are

> inconsistent. That doesn't make sense. " I'm thinkin...no kiddin!

>

> Just be confident in your decisions.

>

> Best of luck to you all.

>

> Dawn in Ohio

>

[Guest guest]

I am not going to be mad at any one.Im just so freakin tired and

confused and I have $hit coming at me from all angles.What to

do ????

Work,family so on.This person saying I need to do this,that person

saying do something else,this person blaming me for not researching

more.Ya know that stuff is just becoming over whelming.It is like I

am being jumped on or something.Im just trying to do what I think I

CAN AND WHATS BEST FOr MY SON.I do plan on if more procedures need

to be done to take him else where.I appreciate all the support that

has come from this board and all the advice!!!!I do however feel

like I need to just take a break and try to refocus.Thanks for

getting in my face! Tonia

> > > Ihave heard back from a few Drs and they are also saying my

son

> > should

> > > not be having these problems.(as we all knew)When I go Monday

I

> > will

> > > be sure to let this Dr know that other DRs are even saying its

> > unusual

> > > and is not normal.What kinda come back can he possibly say

after

> > > that?? I have already warned my husband that the police will

have

> > to

> > > carry me out of there if they dont find the problem! He has

had 3

> > > horrible spasms this week and has vomited 3 x yesterday.

> > >

> > > Question- How many of you take meds to help with the E spams?

If so

> > > what do you take? The first time the drinking water actually

> > helped

> > > but nothing eased up on the other 2 but time.I want to find

out

> > about

> > > a med or something that he will be able to have with him when

hes

> > away

> > > from home and should have a spell.Whats he to do when he goes

back

> > to

> > > school?Sports? I did read about the caratafe liquid .Iknow its

no

> > cure

> > > out there but something should be available to help ease the

pain.

> > I

> > > have read that some take nitroglycerin,muscle

> > relaxers,antidepressents

> > > etc..Any one here-Thanks Tonia

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello, Tonia.

Tonia wrote:

....it almost makes me feel as if I am not doing what I should be as his mother and that, bothers me. ...

I am glad you said that. I think it needed to be said. Give yourself

a pat on the back for affirming your role and the good job you are

doing. You could be sitting back and just accepting everything your

doctor says unquestioningly. You're not that kind of mom. You could

have said it is the doctor's job to find answers, not mine. You're not

that kind of mom. You could have let the many voices overwhelm your

conviction.

There are waiting list for these drs I spoke with 1-2 months.Two outta 3 recomended following up with his Dr that done the surgery first.....but did say its unusual as you all have.

I could be wrong, but it seems that 2 out 3 are implying that there

is no need to rush into a change, and I don't just mean a change of

doctor. They didn't say he needs to be treated ASAP. I don't know how

soon after a myotomy they would be willing to do another surgery or

dilation. Maybe they can do something soon, but you have to wonder. For

that matter would they have a problem going slow in getting around to

trying something else? I don't know. You would have to ask them. You

may have time whether you want it or not.

.... Some here say they have to have dialations after surgery maybe thats the case here. ...

Two things here. Dilations should not be needed right after surgery.

Sometimes they are needed after a period of good results. The target

for the dilation is the same part of the esophagus treated by the

myotomy. That area, after a myotomy, is no longer normal. Whoever does

this better know what to do and be prepared for the risks.

.... We have 2 days now.I do thank god yesterday was an awesome day and so was the day before no problems. ...

Is he perhaps getting better?

notan

[Guest guest]

Tonia, we are all here for you so please lets us know what is going on. Even if you would just like to talk over anything you can contact me and others on the board I am sure. Go over the information that you have and let your heart direct you to the best place.

in Suffolk

[Guest guest]

I know this sounds weird, but the day of the barrium swallow we went

to Pizza Hut and ate 3 slices thin crust pizza!!!! He took most

the cheese off but didnt have much trouble.The DRs couldnt believe it-

How did the pizza go down but the liquid stayed????very weird Thanks

fofor telling me to ask that..see thats very important and I didnt

even ask that!!Thanks again

>

> I'm glad they saw that you were certainly not kidding about

still having problems. And I'm glad you posted again! Please ask

your doctor how many post-surgical dilations he has done and how many

have perforated. If he perfs, you very well could be dealing with

very major emergency surgery. This is a question any good,

experienced surgeon should be very willing to answer. Please continue

to keep us posted. We all want to be eating pizza like any

other kid! Cindi

>

[Guest guest]

Thank you very much!!

>

> I hope your son's dilatation is very successful. My thoughts and

> prayers are with you.

> Hugs,

> Anita

>

[Guest guest]

what is this in reference to? I dont know what to look for.. : ( Carolyn Jo Blauer <capmyjo@...> wrote: Let's see...a concerned parent has found another parent for support and information in helping her make informed choices for this rare condition her child has. How do you put a price tag on that? I am proud of you for reaching out to others. This experience has made you much stronger, and I see you following the path Carolyn has taken. Jo

[Guest guest]

Wow Carolyn, what a thoughtful and helpful email

this was you wrote to Tonia. You should put this in

a document and upload it to the files so that all

parents whose child is having surgery could read it.

It's not bad for adults either.

You continue to amaze me and you are always

helpful.

Hugs,

Maggie

[Guest guest]

Seconding Maggie's kudos and suggestion to upload. You are a generous spirit!

Peggy

>

> Wow Carolyn, what a thoughtful and helpful email

> this was you wrote to Tonia. You should put this in

> a document and upload it to the files so that all

> parents whose child is having surgery could read it.

> It's not bad for adults either.

>

> You continue to amaze me and you are always

> helpful.

>

> Hugs,

> Maggie

>