Re: I had my dilation ... new discovery

[Guest guest]

Kathie, I hope you're in bed sound asleep by now after a

tough day. I am really sorry for all the surprising news

you got today.

I am sure with a good nights sleep you'll be able to sort

things out tomorrow and in the coming weeks.

Big hugs and lots of prayers,

Maggie

[Guest guest]

Hi Kathie,

As I was reading your post, I'm still stunned by the fact that you drank apple juice after a dilatation! Wow! You probably should have had milk or water, but as long as you aren't suffering too bad, I guess it's alright. The acid would have been way too much for me. If your esophagus was unresponsive, at least you'll never have to go through another manometry. This will be documented in your case notes. That's the good news. Were you actually able to eat the eggs? (Eggs are my worst nightmare). No sign of strictures? Awesome.

I'm glad your day went well,

Best of luck,

. (Mega-esophagus . . . still debating what to do)

I had my dilation ... new discovery

Hello All ... I am home!1. Arrived at Presby hospital at 5:00 AM as required, checked in and was taken back to the surgery wing. (For those of you who do not know, I was scheduled for a dilation for scar tissue. I had my lap Hellers Myotomy last March 16,2005 and was doing pretty well. Last 3 months noticed some stickage ... not alot, but noticible) Medical History Confirmed, IV put in place, Anethesiologist arrived to discuss Anethesia and ask more questions and finally, taken into the surgical unit. After a few minutes of looking around ... I remember nothing else!!!2. Back in the room, my Husband said the doctor said there was NO scar tissue, he dilated anyway, and my esophagus was un-responsive. He said he said something else, but could not remember what it was. He asks NO questions and I did not see the doctor! I thought this was great news of no scar tissue, but wondered why I was still having stickage.3. Finally got my gag reflex back, they took chest x rays, had me drink 2 cups of apple juice slowly and told me I could go home, around NOON. I really felt well and ... because I had NOTHING to eat from Sunday at 8PM ... decided to stop for some scrambled eggs on the way home. All of the time, I am trying to get my hubby to remember what was said, I know he was embarrassed!4. We got home, and I had to call the office to make a followup appt. I mentioned to the gal that the Doctor spoke with my hubby, but he could not remember exactly what was said. I told her, I really would go nuts if I have to wait a month to know how the surgery went. I asked her for a copy of the surgery report, which she said she would send out in about a week. Then she told me to hold on and she would get the doctor to talk directly to me!!! 5. The "Fellow" Doctor who assisted talked with me. He said they were very surprised to find there was NO SCARRING. ... HOWEVER ... I must have had Achalasia for much longer than I knew as they were surprised at how far it has progressed. It seems I have a TORTUOUS ESOPHAGUS! I had no idea what that meant, so he explained that it is supposed to be like a pipe straight up and down. Mine, now has some curves in it and it is quite weakened. Although I went 35 hours without food, there was still some in the E. He said Dr. L placed a guide wire thru the E and dilated the entire E as far as he dared. The 15 minute procedure turned into an hour! He said I most likely will require additional surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like the doctors were surprised at this turn of events too.6. I have a follow up in a month. Then he will want to do another EGD in 6 months, and followup every year after that unless problems warrent an earlier visit.7. I asked him what "stage" I was in. He did not seem to understand the question. I said that I keep hearing "end stage Achalasia" or the "beginning stages", are there other stages within? He said no, but if he had to pinpoint, I am somewhere in the middle. My E is Not Mega or Sigmoid (sp?), but it has changed rapidly. He said we are at the watch and see stage. We will have to monitor this closely and watch that it does not change too rapidly. He mentioned the concern of food creating pockets and fermenting. Since my esophagus is weakened, that food fermenting could create ulcer type sores and perhaps cause more problems. He told me that Dr. L would prefer to talk all of this over with me directly in a month.8. A good turn of events ... NO CHEST PAIN right now. If you remember, for the last 6 days, I have had constant chest pain throughout my entire rib cage, especially center chest! Worse when I lie down. I took a nap when we got home, and no chest pain! I guess the dilation helped that, and I am VERY grateful. Perhaps it will also help the dreaded spasms too!!!9. Not sure how I feel about all this. SURPRISED .. certainly.However, I am EXACTLY the way I was when I left the house this morning, except that now I know for sure why food is having some difficulty getting to its destination. In reading the posts, I have always felt that I complained alot, but overall I was not nearly as sick as some. I still feel that way ... BUT ... realize this is further along than I ever suspected. It is funny, but I am really not upset. When I talked it over with my hubby, the possible additional surgery is what he forgot. The doctor did not go in to the tortuous esophagus or any of that with him. I was kidding my hubby that he might want to go in to rewriting condensed books ... make them more lean! He certainly condenced my information.9. ... I am SOOOOOOOOOO glad for you. My prayers were answered! Now you must continue to improve.10. , good luck tomorrow at West Penn. And behave yourself!11. Thank you all for your support, prayers, good wishes and suggestions. I was even talking with the anstheiologist today and telling him about this group. Who knows, he seemed interested enough, perhaps he will check us out. He certainly asked me lots of questions.No one could imagine how much this group means. I came home, called my family, friends and co-workers ... but now I feel I am completed, I have checked in with those who understand.You are the greatest. Kathie in Pittsburgh

[Guest guest]

Hi :

Yes, the apple juice went down ... no problem. I can't drink orange

or grapefruit, but apple and cranberry seem to be no problem.

Eggs are a bit of a mainstay in my life. Isn't it funny how

different we are.

Thanks for your comments. I think about you often. Unfortunately,

Carole never answered my e-mail, so I guess she is busy with life. I

continue my prayers for you.

Kathie

>

> Hi Kathie,

>

> As I was reading your post, I'm still stunned by the fact that you

drank apple juice after a dilatation! Wow! You probably should have

had milk or water, but as long as you aren't suffering too bad, I

guess it's alright. The acid would have been way too much for me.

If your esophagus was unresponsive, at least you'll never have to go

through another manometry. This will be documented in your case

notes. That's the good news. Were you actually able to eat the

eggs? (Eggs are my worst nightmare). No sign of strictures?

Awesome.

>

> I'm glad your day went well,

>

> Best of luck,

>

> . (Mega-esophagus . . . still debating what to do)

>

>

> I had my dilation ... new discovery

>

>

> Hello All ... I am home!

> 1. Arrived at Presby hospital at 5:00 AM as required, checked in

and

> was taken back to the surgery wing. (For those of you who do not

know,

> I was scheduled for a dilation for scar tissue. I had my lap

Hellers

> Myotomy last March 16,2005 and was doing pretty well. Last 3

months

> noticed some stickage ... not alot, but noticible) Medical

History

> Confirmed, IV put in place, Anethesiologist arrived to discuss

> Anethesia and ask more questions and finally, taken into the

surgical

> unit. After a few minutes of looking around ... I remember

nothing

> else!!!

> 2. Back in the room, my Husband said the doctor said there was

NO scar

> tissue, he dilated anyway, and my esophagus was un-responsive.

He said

> he said something else, but could not remember what it was. He

asks NO

> questions and I did not see the doctor! I thought this was

great news

> of no scar tissue, but wondered why I was still having stickage.

> 3. Finally got my gag reflex back, they took chest x rays, had

me

> drink 2 cups of apple juice slowly and told me I could go home,

around

> NOON. I really felt well and ... because I had NOTHING to eat

from

> Sunday at 8PM ... decided to stop for some scrambled eggs on the

way

> home. All of the time, I am trying to get my hubby to remember

what

> was said, I know he was embarrassed!

> 4. We got home, and I had to call the office to make a followup

appt.

> I mentioned to the gal that the Doctor spoke with my hubby, but

he

> could not remember exactly what was said. I told her, I really

would

> go nuts if I have to wait a month to know how the surgery went.

I

> asked her for a copy of the surgery report, which she said she

would

> send out in about a week. Then she told me to hold on and she

would

> get the doctor to talk directly to me!!!

>

> 5. The " Fellow " Doctor who assisted talked with me. He said

they were

> very surprised to find there was NO SCARRING. ... HOWEVER ... I

must

> have had Achalasia for much longer than I knew as they were

surprised

> at how far it has progressed. It seems I have a TORTUOUS

ESOPHAGUS! I

> had no idea what that meant, so he explained that it is supposed

to be

> like a pipe straight up and down. Mine, now has some curves in

it and

> it is quite weakened. Although I went 35 hours without food,

there was

> still some in the E. He said Dr. L placed a guide wire thru the

E and

> dilated the entire E as far as he dared. The 15 minute procedure

> turned into an hour! He said I most likely will require

additional

> surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems

like the

> doctors were surprised at this turn of events too.

>

> 6. I have a follow up in a month. Then he will want to do

another EGD

> in 6 months, and followup every year after that unless problems

warrent

> an earlier visit.

>

> 7. I asked him what " stage " I was in. He did not seem to

understand

> the question. I said that I keep hearing " end stage Achalasia "

or

> the " beginning stages " , are there other stages within? He said

no, but

> if he had to pinpoint, I am somewhere in the middle. My E is Not

Mega

> or Sigmoid (sp?), but it has changed rapidly. He said we are at

the

> watch and see stage. We will have to monitor this closely and

watch

> that it does not change too rapidly. He mentioned the concern of

food

> creating pockets and fermenting. Since my esophagus is weakened,

that

> food fermenting could create ulcer type sores and perhaps cause

more

> problems. He told me that Dr. L would prefer to talk all of this

over

> with me directly in a month.

>

> 8. A good turn of events ... NO CHEST PAIN right now. If you

> remember, for the last 6 days, I have had constant chest pain

> throughout my entire rib cage, especially center chest! Worse

when I

> lie down. I took a nap when we got home, and no chest pain! I

guess

> the dilation helped that, and I am VERY grateful. Perhaps it

will also

> help the dreaded spasms too!!!

>

> 9. Not sure how I feel about all this. SURPRISED .. certainly.

> However, I am EXACTLY the way I was when I left the house this

morning,

> except that now I know for sure why food is having some

difficulty

> getting to its destination. In reading the posts, I have always

felt

> that I complained alot, but overall I was not nearly as sick as

some.

> I still feel that way ... BUT ... realize this is further along

than I

> ever suspected. It is funny, but I am really not upset. When I

talked

> it over with my hubby, the possible additional surgery is what he

> forgot. The doctor did not go in to the tortuous esophagus or

any of

> that with him. I was kidding my hubby that he might want to go

in to

> rewriting condensed books ... make them more lean! He certainly

> condenced my information.

>

> 9. ... I am SOOOOOOOOOO glad for you. My prayers were

> answered! Now you must continue to improve.

>

> 10. , good luck tomorrow at West Penn. And behave yourself!

>

> 11. Thank you all for your support, prayers, good wishes and

> suggestions. I was even talking with the anstheiologist today

and

> telling him about this group. Who knows, he seemed interested

enough,

> perhaps he will check us out. He certainly asked me lots of

questions.

> No one could imagine how much this group means. I came home,

called my

> family, friends and co-workers ... but now I feel I am completed,

I

> have checked in with those who understand.

>

> You are the greatest. Kathie in Pittsburgh

>

>

>

>

>

>

>

[Guest guest]

Kathie::

I am SO SORRY that things are so quickly advanced, but so proud of how you are

handling

things. Let us build your list of questions for the doctor in a month and let's

figure out

how to strap him to the seat so he can't get loose until they are all answered.

Thanks for sharing and rest up tonight.

Peggy

>

> Hello All ... I am home!

> 1. Arrived at Presby hospital at 5:00 AM as required, checked in and

> was taken back to the surgery wing. (For those of you who do not know,

> I was scheduled for a dilation for scar tissue. I had my lap Hellers

> Myotomy last March 16,2005 and was doing pretty well. Last 3 months

> noticed some stickage ... not alot, but noticible) Medical History

> Confirmed, IV put in place, Anethesiologist arrived to discuss

> Anethesia and ask more questions and finally, taken into the surgical

> unit. After a few minutes of looking around ... I remember nothing

> else!!!

> 2. Back in the room, my Husband said the doctor said there was NO scar

> tissue, he dilated anyway, and my esophagus was un-responsive. He said

> he said something else, but could not remember what it was. He asks NO

> questions and I did not see the doctor! I thought this was great news

> of no scar tissue, but wondered why I was still having stickage.

> 3. Finally got my gag reflex back, they took chest x rays, had me

> drink 2 cups of apple juice slowly and told me I could go home, around

> NOON. I really felt well and ... because I had NOTHING to eat from

> Sunday at 8PM ... decided to stop for some scrambled eggs on the way

> home. All of the time, I am trying to get my hubby to remember what

> was said, I know he was embarrassed!

> 4. We got home, and I had to call the office to make a followup appt.

> I mentioned to the gal that the Doctor spoke with my hubby, but he

> could not remember exactly what was said. I told her, I really would

> go nuts if I have to wait a month to know how the surgery went. I

> asked her for a copy of the surgery report, which she said she would

> send out in about a week. Then she told me to hold on and she would

> get the doctor to talk directly to me!!!

>

> 5. The " Fellow " Doctor who assisted talked with me. He said they were

> very surprised to find there was NO SCARRING. ... HOWEVER ... I must

> have had Achalasia for much longer than I knew as they were surprised

> at how far it has progressed. It seems I have a TORTUOUS ESOPHAGUS! I

> had no idea what that meant, so he explained that it is supposed to be

> like a pipe straight up and down. Mine, now has some curves in it and

> it is quite weakened. Although I went 35 hours without food, there was

> still some in the E. He said Dr. L placed a guide wire thru the E and

> dilated the entire E as far as he dared. The 15 minute procedure

> turned into an hour! He said I most likely will require additional

> surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like the

> doctors were surprised at this turn of events too.

>

> 6. I have a follow up in a month. Then he will want to do another EGD

> in 6 months, and followup every year after that unless problems warrent

> an earlier visit.

>

> 7. I asked him what " stage " I was in. He did not seem to understand

> the question. I said that I keep hearing " end stage Achalasia " or

> the " beginning stages " , are there other stages within? He said no, but

> if he had to pinpoint, I am somewhere in the middle. My E is Not Mega

> or Sigmoid (sp?), but it has changed rapidly. He said we are at the

> watch and see stage. We will have to monitor this closely and watch

> that it does not change too rapidly. He mentioned the concern of food

> creating pockets and fermenting. Since my esophagus is weakened, that

> food fermenting could create ulcer type sores and perhaps cause more

> problems. He told me that Dr. L would prefer to talk all of this over

> with me directly in a month.

>

> 8. A good turn of events ... NO CHEST PAIN right now. If you

> remember, for the last 6 days, I have had constant chest pain

> throughout my entire rib cage, especially center chest! Worse when I

> lie down. I took a nap when we got home, and no chest pain! I guess

> the dilation helped that, and I am VERY grateful. Perhaps it will also

> help the dreaded spasms too!!!

>

> 9. Not sure how I feel about all this. SURPRISED .. certainly.

> However, I am EXACTLY the way I was when I left the house this morning,

> except that now I know for sure why food is having some difficulty

> getting to its destination. In reading the posts, I have always felt

> that I complained alot, but overall I was not nearly as sick as some.

> I still feel that way ... BUT ... realize this is further along than I

> ever suspected. It is funny, but I am really not upset. When I talked

> it over with my hubby, the possible additional surgery is what he

> forgot. The doctor did not go in to the tortuous esophagus or any of

> that with him. I was kidding my hubby that he might want to go in to

> rewriting condensed books ... make them more lean! He certainly

> condenced my information.

>

> 9. ... I am SOOOOOOOOOO glad for you. My prayers were

> answered! Now you must continue to improve.

>

> 10. , good luck tomorrow at West Penn. And behave yourself!

>

> 11. Thank you all for your support, prayers, good wishes and

> suggestions. I was even talking with the anstheiologist today and

> telling him about this group. Who knows, he seemed interested enough,

> perhaps he will check us out. He certainly asked me lots of questions.

> No one could imagine how much this group means. I came home, called my

> family, friends and co-workers ... but now I feel I am completed, I

> have checked in with those who understand.

>

> You are the greatest. Kathie in Pittsburgh

>

[Guest guest]

Kathie,

I'm so glad to read you did well today, without any of the pain

you were anticipating!! I'm sorry to hear that your A has progressed

rapidly, though! It does help that you were able to learn so much

from your visit and I'm glad that you are O.K. with what you've

learned. I guess knowledge is power when you have a rare disease!

That was so good that the " fellow " doctor was able to tell you so

much! I'm afraid my husband would be the same way in that situation:

very short on details! I guess the both of them could write

condensed books - very short and to the point (if they remembered the

point) . Now, you can start doing some writing of your own, getting

questions ready for your doctor. With the knowledge you've gained

since your diagnosis (I'm sure a lot of which came from this group),

you should have some good questions to ask! You can relax now, with

this EGD behind you! Take care of yourself!

in Michigan

P.S. It is SO nice to tell you story to people that understand, isn't

it? That's what I LOVE about this group, too (plus the support of

many caring people)!!

[Guest guest]

Hi Kathie,

My symptoms are very similar to yours. I had my myotomy in 1988 and didn't need any additional procedures until dec 2002 when I had a shot of botox. So I will get the dilitation or botox tomorrow. My e has been deformed since 1988. It was sooo bad when I had my myotomy that it was like a second stomach with barretts at its worst stage, pre-cancerous. By 1993 my barretts had went away. I most likely have secondary achalasia caused by dermatitis herpetiformis and celica sprue so my body reactions would not be considered typical.

I am ready for the valium and demerol. I have had this done so many times I can feel it first take effect at the base of my neck and then proceed down my spine and then out my arms and legs. At that point the whole body then relaxes. I actually look forward to it but it just doesn't last long enough! LOL.

I will let you know how I make out.

I had my dilation ... new discovery

Hello All ... I am home!

1. Arrived at Presby hospital at 5:00 AM as required, checked in and was taken back to the surgery wing. (For those of you who do not know, I was scheduled for a dilation for scar tissue. I had my lap Hellers Myotomy last March 16,2005 and was doing pretty well. Last 3 months noticed some stickage ... not alot, but noticible) Medical History Confirmed, IV put in place, Anethesiologist arrived to discuss Anethesia and ask more questions and finally, taken into the surgical unit. After a few minutes of looking around ... I remember nothing else!!!

2. Back in the room, my Husband said the doctor said there was NO scar tissue, he dilated anyway, and my esophagus was un-responsive. He said he said something else, but could not remember what it was. He asks NO questions and I did not see the doctor! I thought this was great news of no scar tissue, but wondered why I was still having stickage.

3. Finally got my gag reflex back, they took chest x rays, had me drink 2 cups of apple juice slowly and told me I could go home, around NOON. I really felt well and ... because I had NOTHING to eat from Sunday at 8PM ... decided to stop for some scrambled eggs on the way home. All of the time, I am trying to get my hubby to remember what was said, I know he was embarrassed!

4. We got home, and I had to call the office to make a followup appt. I mentioned to the gal that the Doctor spoke with my hubby, but he could not remember exactly what was said. I told her, I really would go nuts if I have to wait a month to know how the surgery went. I asked her for a copy of the surgery report, which she said she would send out in about a week. Then she told me to hold on and she would get the doctor to talk directly to me!!! 5. The "Fellow" Doctor who assisted talked with me. He said they were very surprised to find there was NO SCARRING. ... HOWEVER ... I must have had Achalasia for much longer than I knew as they were surprised at how far it has progressed. It seems I have a TORTUOUS ESOPHAGUS! I had no idea what that meant, so he explained that it is supposed to be like a pipe straight up and down. Mine, now has some curves in it and it is quite weakened. Although I went 35 hours without food, there was still some in the E. He said Dr. L placed a guide wire thru the E and dilated the entire E as far as he dared. The 15 minute procedure turned into an hour! He said I most likely will require additional surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like the doctors were surprised at this turn of events too.

6. I have a follow up in a month. Then he will want to do another EGD in 6 months, and followup every year after that unless problems warrent an earlier visit.

7. I asked him what "stage" I was in. He did not seem to understand the question. I said that I keep hearing "end stage Achalasia" or the "beginning stages", are there other stages within? He said no, but if he had to pinpoint, I am somewhere in the middle. My E is Not Mega or Sigmoid (sp?), but it has changed rapidly. He said we are at the watch and see stage. We will have to monitor this closely and watch that it does not change too rapidly. He mentioned the concern of food creating pockets and fermenting. Since my esophagus is weakened, that food fermenting could create ulcer type sores and perhaps cause more problems. He told me that Dr. L would prefer to talk all of this over with me directly in a month.

8. A good turn of events ... NO CHEST PAIN right now. If you remember, for the last 6 days, I have had constant chest pain throughout my entire rib cage, especially center chest! Worse when I lie down. I took a nap when we got home, and no chest pain! I guess the dilation helped that, and I am VERY grateful. Perhaps it will also help the dreaded spasms too!!!

9. Not sure how I feel about all this. SURPRISED .. certainly.

However, I am EXACTLY the way I was when I left the house this morning, except that now I know for sure why food is having some difficulty getting to its destination. In reading the posts, I have always felt that I complained alot, but overall I was not nearly as sick as some. I still feel that way ... BUT ... realize this is further along than I ever suspected. It is funny, but I am really not upset. When I talked it over with my hubby, the possible additional surgery is what he forgot. The doctor did not go in to the tortuous esophagus or any of that with him. I was kidding my hubby that he might want to go in to rewriting condensed books ... make them more lean! He certainly condenced my information.

9. ... I am SOOOOOOOOOO glad for you. My prayers were answered! Now you must continue to improve.

10. , good luck tomorrow at West Penn. And behave yourself!

11. Thank you all for your support, prayers, good wishes and suggestions. I was even talking with the anstheiologist today and telling him about this group. Who knows, he seemed interested enough, perhaps he will check us out. He certainly asked me lots of questions.

No one could imagine how much this group means. I came home, called my family, friends and co-workers ... but now I feel I am completed, I have checked in with those who understand.

You are the greatest. Kathie in Pittsburgh

[Guest guest]

Sounds good to me too. I am in.

in Suffolk

[Guest guest]

Kathie- So glad to hear from you! Wow- what a day yesterday for

you.Im am releaved you are not having chest pains since the

dialation-lets pray that the dialtion done the trick and you wont

get any more!!!I am unsure about the stages of A.I have meant to

mention it to Dr but forgot.He has never mentioned it I dont

believe.I wil have to write that down for next visit to ask him.I

hope you had a pain free night last night-the past 6 days have been

enough for a lifetime im sure so I m really hoping that those pains

are gone for good.Good to hear from you-Get plenty of rest, Take

care Tonia

>

> Hello All ... I am home!

> 1. Arrived at Presby hospital at 5:00 AM as required, checked in

and

> was taken back to the surgery wing. (For those of you who do not

know,

> I was scheduled for a dilation for scar tissue. I had my lap

Hellers

> Myotomy last March 16,2005 and was doing pretty well. Last 3

months

> noticed some stickage ... not alot, but noticible) Medical

History

> Confirmed, IV put in place, Anethesiologist arrived to discuss

> Anethesia and ask more questions and finally, taken into the

surgical

> unit. After a few minutes of looking around ... I remember

nothing

> else!!!

> 2. Back in the room, my Husband said the doctor said there was NO

scar

> tissue, he dilated anyway, and my esophagus was un-responsive. He

said

> he said something else, but could not remember what it was. He

asks NO

> questions and I did not see the doctor! I thought this was great

news

> of no scar tissue, but wondered why I was still having stickage.

> 3. Finally got my gag reflex back, they took chest x rays, had me

> drink 2 cups of apple juice slowly and told me I could go home,

around

> NOON. I really felt well and ... because I had NOTHING to eat

from

> Sunday at 8PM ... decided to stop for some scrambled eggs on the

way

> home. All of the time, I am trying to get my hubby to remember

what

> was said, I know he was embarrassed!

> 4. We got home, and I had to call the office to make a followup

appt.

> I mentioned to the gal that the Doctor spoke with my hubby, but he

> could not remember exactly what was said. I told her, I really

would

> go nuts if I have to wait a month to know how the surgery went. I

> asked her for a copy of the surgery report, which she said she

would

> send out in about a week. Then she told me to hold on and she

would

> get the doctor to talk directly to me!!!

>

> 5. The " Fellow " Doctor who assisted talked with me. He said they

were

> very surprised to find there was NO SCARRING. ... HOWEVER ... I

must

> have had Achalasia for much longer than I knew as they were

surprised

> at how far it has progressed. It seems I have a TORTUOUS

ESOPHAGUS! I

> had no idea what that meant, so he explained that it is supposed

to be

> like a pipe straight up and down. Mine, now has some curves in it

and

> it is quite weakened. Although I went 35 hours without food,

there was

> still some in the E. He said Dr. L placed a guide wire thru the E

and

> dilated the entire E as far as he dared. The 15 minute procedure

> turned into an hour! He said I most likely will require

additional

> surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like

the

> doctors were surprised at this turn of events too.

>

> 6. I have a follow up in a month. Then he will want to do

another EGD

> in 6 months, and followup every year after that unless problems

warrent

> an earlier visit.

>

> 7. I asked him what " stage " I was in. He did not seem to

understand

> the question. I said that I keep hearing " end stage Achalasia " or

> the " beginning stages " , are there other stages within? He said

no, but

> if he had to pinpoint, I am somewhere in the middle. My E is Not

Mega

> or Sigmoid (sp?), but it has changed rapidly. He said we are at

the

> watch and see stage. We will have to monitor this closely and

watch

> that it does not change too rapidly. He mentioned the concern of

food

> creating pockets and fermenting. Since my esophagus is weakened,

that

> food fermenting could create ulcer type sores and perhaps cause

more

> problems. He told me that Dr. L would prefer to talk all of this

over

> with me directly in a month.

>

> 8. A good turn of events ... NO CHEST PAIN right now. If you

> remember, for the last 6 days, I have had constant chest pain

> throughout my entire rib cage, especially center chest! Worse

when I

> lie down. I took a nap when we got home, and no chest pain! I

guess

> the dilation helped that, and I am VERY grateful. Perhaps it will

also

> help the dreaded spasms too!!!

>

> 9. Not sure how I feel about all this. SURPRISED .. certainly.

> However, I am EXACTLY the way I was when I left the house this

morning,

> except that now I know for sure why food is having some difficulty

> getting to its destination. In reading the posts, I have always

felt

> that I complained alot, but overall I was not nearly as sick as

some.

> I still feel that way ... BUT ... realize this is further along

than I

> ever suspected. It is funny, but I am really not upset. When I

talked

> it over with my hubby, the possible additional surgery is what he

> forgot. The doctor did not go in to the tortuous esophagus or any

of

> that with him. I was kidding my hubby that he might want to go in

to

> rewriting condensed books ... make them more lean! He certainly

> condenced my information.

>

> 9. ... I am SOOOOOOOOOO glad for you. My prayers were

> answered! Now you must continue to improve.

>

> 10. , good luck tomorrow at West Penn. And behave yourself!

>

> 11. Thank you all for your support, prayers, good wishes and

> suggestions. I was even talking with the anstheiologist today and

> telling him about this group. Who knows, he seemed interested

enough,

> perhaps he will check us out. He certainly asked me lots of

questions.

> No one could imagine how much this group means. I came home,

called my

> family, friends and co-workers ... but now I feel I am completed,

I

> have checked in with those who understand.

>

> You are the greatest. Kathie in Pittsburgh

>

[Guest guest]

Dear Kathie,

What a thorough and amazing account you wrote for us. I think it displays your generosity of spirit that you took so much trouble to explain everything to us like that. You sound so positive and hopeful and accepting and I feel so proud of you.

I am VERY pleased that you are going to be regularly monitored and because of this I know that you will be alright. You might have to go through some unwelcome procedures, but they will be in a good cause and keep you well. Sometimes you just have to accept some things don't you? We are all here to support you, not only for yesterday and the next few weeks, but, hopefully for many years to come. We will always be the ones who truly understand.

I hope you have forgiven your Husband for his memory lapse. He really cares about you and would have hated you having to go through what you did yesterday, and when you are feeling nervous it is often inevitable that your recollection of events and facts is the first thing to suffer.

I am so so pleased to hear from you today. AND Kathie, I have a job for you. You see, and I live on this remote Island in the North Sea that time has forgotten. Pleeeeeeze will you get out your magic time chart and work out a time when it's possible that we could join all you fine people in the chat room. That would be so nice. Take your time doing this job, there is no pressure on you. Last Sunday will do just fine (tee hee).

Lots of love and a big welcome back from your buddy in England xxxxxx>> Hello All ... I am home!> 1. Arrived at Presby hospital at 5:00 AM as required, checked in and > was taken back to the surgery wing. (For those of you who do not know, > I was scheduled for a dilation for scar tissue. I had my lap Hellers > Myotomy last March 16,2005 and was doing pretty well. Last 3 months > noticed some stickage ... not alot, but noticible) Medical History > Confirmed, IV put in place, Anethesiologist arrived to discuss > Anethesia and ask more questions and finally, taken into the surgical > unit. After a few minutes of looking around ... I remember nothing > else!!!> 2. Back in the room, my Husband said the doctor said there was NO scar > tissue, he dilated anyway, and my esophagus was un-responsive. He said > he said something else, but could not remember what it was. He asks NO > questions and I did not see the doctor! I thought this was great news > of no scar tissue, but wondered why I was still having stickage.> 3. Finally got my gag reflex back, they took chest x rays, had me > drink 2 cups of apple juice slowly and told me I could go home, around > NOON. I really felt well and ... because I had NOTHING to eat from > Sunday at 8PM ... decided to stop for some scrambled eggs on the way > home. All of the time, I am trying to get my hubby to remember what > was said, I know he was embarrassed!> 4. We got home, and I had to call the office to make a followup appt. > I mentioned to the gal that the Doctor spoke with my hubby, but he > could not remember exactly what was said. I told her, I really would > go nuts if I have to wait a month to know how the surgery went. I > asked her for a copy of the surgery report, which she said she would > send out in about a week. Then she told me to hold on and she would > get the doctor to talk directly to me!!! > > 5. The "Fellow" Doctor who assisted talked with me. He said they were > very surprised to find there was NO SCARRING. ... HOWEVER ... I must > have had Achalasia for much longer than I knew as they were surprised > at how far it has progressed. It seems I have a TORTUOUS ESOPHAGUS! I > had no idea what that meant, so he explained that it is supposed to be > like a pipe straight up and down. Mine, now has some curves in it and > it is quite weakened. Although I went 35 hours without food, there was > still some in the E. He said Dr. L placed a guide wire thru the E and > dilated the entire E as far as he dared. The 15 minute procedure > turned into an hour! He said I most likely will require additional > surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like the > doctors were surprised at this turn of events too.> > 6. I have a follow up in a month. Then he will want to do another EGD > in 6 months, and followup every year after that unless problems warrent > an earlier visit.> > 7. I asked him what "stage" I was in. He did not seem to understand > the question. I said that I keep hearing "end stage Achalasia" or > the "beginning stages", are there other stages within? He said no, but > if he had to pinpoint, I am somewhere in the middle. My E is Not Mega > or Sigmoid (sp?), but it has changed rapidly. He said we are at the > watch and see stage. We will have to monitor this closely and watch > that it does not change too rapidly. He mentioned the concern of food > creating pockets and fermenting. Since my esophagus is weakened, that > food fermenting could create ulcer type sores and perhaps cause more > problems. He told me that Dr. L would prefer to talk all of this over > with me directly in a month.> > 8. A good turn of events ... NO CHEST PAIN right now. If you > remember, for the last 6 days, I have had constant chest pain > throughout my entire rib cage, especially center chest! Worse when I > lie down. I took a nap when we got home, and no chest pain! I guess > the dilation helped that, and I am VERY grateful. Perhaps it will also > help the dreaded spasms too!!!> > 9. Not sure how I feel about all this. SURPRISED .. certainly.> However, I am EXACTLY the way I was when I left the house this morning, > except that now I know for sure why food is having some difficulty > getting to its destination. In reading the posts, I have always felt > that I complained alot, but overall I was not nearly as sick as some. > I still feel that way ... BUT ... realize this is further along than I > ever suspected. It is funny, but I am really not upset. When I talked > it over with my hubby, the possible additional surgery is what he > forgot. The doctor did not go in to the tortuous esophagus or any of > that with him. I was kidding my hubby that he might want to go in to > rewriting condensed books ... make them more lean! He certainly > condenced my information.> > 9. ... I am SOOOOOOOOOO glad for you. My prayers were > answered! Now you must continue to improve.> > 10. , good luck tomorrow at West Penn. And behave yourself!> > 11. Thank you all for your support, prayers, good wishes and > suggestions. I was even talking with the anstheiologist today and > telling him about this group. Who knows, he seemed interested enough, > perhaps he will check us out. He certainly asked me lots of questions.> No one could imagine how much this group means. I came home, called my > family, friends and co-workers ... but now I feel I am completed, I > have checked in with those who understand.> > You are the greatest. Kathie in Pittsburgh>

[Guest guest]

Dear ,

Best Wishes for tomorrow. Try to take it in your stride if you can.

Can I pick up on something you said about Barrett's? (had to lean out of the window to read that bit ! ) - Can you have it, and then it can go ? Without any treatment?

With love from Ann in England x>> Hi Kathie,> > My symptoms are very similar to yours. I had my myotomy in 1988 and didn't need any additional procedures until dec 2002 when I had a shot of botox. So I will get the dilitation or botox tomorrow. My e has been deformed since 1988. It was sooo bad when I had my myotomy that it was like a second stomach with barretts at its worst stage, pre-cancerous. By 1993 my barretts had went away. I most likely have secondary achalasia caused by dermatitis herpetiformis and celica sprue so my body reactions would not be considered typical. > > I am ready for the valium and demerol. I have had this done so many times I can feel it first take effect at the base of my neck and then proceed down my spine and then out my arms and legs. At that point the whole body then relaxes. I actually look forward to it but it just doesn't last long enough! LOL.> > I will let you know how I make out.> > > > I had my dilation ... new discovery> > > Hello All ... I am home!> 1. Arrived at Presby hospital at 5:00 AM as required, checked in and > was taken back to the surgery wing. (For those of you who do not know, > I was scheduled for a dilation for scar tissue. I had my lap Hellers > Myotomy last March 16,2005 and was doing pretty well. Last 3 months > noticed some stickage ... not alot, but noticible) Medical History > Confirmed, IV put in place, Anethesiologist arrived to discuss > Anethesia and ask more questions and finally, taken into the surgical > unit. After a few minutes of looking around ... I remember nothing > else!!!> 2. Back in the room, my Husband said the doctor said there was NO scar > tissue, he dilated anyway, and my esophagus was un-responsive. He said > he said something else, but could not remember what it was. He asks NO > questions and I did not see the doctor! I thought this was great news > of no scar tissue, but wondered why I was still having stickage.> 3. Finally got my gag reflex back, they took chest x rays, had me > drink 2 cups of apple juice slowly and told me I could go home, around > NOON. I really felt well and ... because I had NOTHING to eat from > Sunday at 8PM ... decided to stop for some scrambled eggs on the way > home. All of the time, I am trying to get my hubby to remember what > was said, I know he was embarrassed!> 4. We got home, and I had to call the office to make a followup appt. > I mentioned to the gal that the Doctor spoke with my hubby, but he > could not remember exactly what was said. I told her, I really would > go nuts if I have to wait a month to know how the surgery went. I > asked her for a copy of the surgery report, which she said she would > send out in about a week. Then she told me to hold on and she would > get the doctor to talk directly to me!!! > > 5. The "Fellow" Doctor who assisted talked with me. He said they were > very surprised to find there was NO SCARRING. ... HOWEVER ... I must > have had Achalasia for much longer than I knew as they were surprised > at how far it has progressed. It seems I have a TORTUOUS ESOPHAGUS! I > had no idea what that meant, so he explained that it is supposed to be > like a pipe straight up and down. Mine, now has some curves in it and > it is quite weakened. Although I went 35 hours without food, there was > still some in the E. He said Dr. L placed a guide wire thru the E and > dilated the entire E as far as he dared. The 15 minute procedure > turned into an hour! He said I most likely will require additional > surgery down the road. THIS WAS ALL A BIG SURPRISE, it seems like the > doctors were surprised at this turn of events too.> > 6. I have a follow up in a month. Then he will want to do another EGD > in 6 months, and followup every year after that unless problems warrent > an earlier visit.> > 7. I asked him what "stage" I was in. He did not seem to understand > the question. I said that I keep hearing "end stage Achalasia" or > the "beginning stages", are there other stages within? He said no, but > if he had to pinpoint, I am somewhere in the middle. My E is Not Mega > or Sigmoid (sp?), but it has changed rapidly. He said we are at the > watch and see stage. We will have to monitor this closely and watch > that it does not change too rapidly. He mentioned the concern of food > creating pockets and fermenting. Since my esophagus is weakened, that > food fermenting could create ulcer type sores and perhaps cause more > problems. He told me that Dr. L would prefer to talk all of this over > with me directly in a month.> > 8. A good turn of events ... NO CHEST PAIN right now. If you > remember, for the last 6 days, I have had constant chest pain > throughout my entire rib cage, especially center chest! Worse when I > lie down. I took a nap when we got home, and no chest pain! I guess > the dilation helped that, and I am VERY grateful. Perhaps it will also > help the dreaded spasms too!!!> > 9. Not sure how I feel about all this. SURPRISED .. certainly.> However, I am EXACTLY the way I was when I left the house this morning, > except that now I know for sure why food is having some difficulty > getting to its destination. In reading the posts, I have always felt > that I complained alot, but overall I was not nearly as sick as some. > I still feel that way ... BUT ... realize this is further along than I > ever suspected. It is funny, but I am really not upset. When I talked > it over with my hubby, the possible additional surgery is what he > forgot. The doctor did not go in to the tortuous esophagus or any of > that with him. I was kidding my hubby that he might want to go in to > rewriting condensed books ... make them more lean! He certainly > condenced my information.> > 9. ... I am SOOOOOOOOOO glad for you. My prayers were > answered! Now you must continue to improve.> > 10. , good luck tomorrow at West Penn. And behave yourself!> > 11. Thank you all for your support, prayers, good wishes and > suggestions. I was even talking with the anstheiologist today and > telling him about this group. Who knows, he seemed interested enough, > perhaps he will check us out. He certainly asked me lots of questions.> No one could imagine how much this group means. I came home, called my > family, friends and co-workers ... but now I feel I am completed, I > have checked in with those who understand.> > You are the greatest. Kathie in Pittsburgh > > > > > > > >

[Guest guest]

Hi Ann:

As always, you know exactly what to say. I appreciate all the

support you send winging across the pond.

No, I am really not at all upset with my hubby. He HATES anything to

do with medical. He has cancer, and after 3 years, still will not

talk about any part of it, including treatments. He just relys on me

to research, make appointments, and actually make all the decisions.

It is just not his thing, and I understand and accept that. He is

strong in so many other ways, I can live with this. After 39 years,

I have him trained pretty well ... we just have to accept the medical

knowledge deficiency and love him anyway.

I TOTALLY AGREE ON THE CHAT! I believe we should start one on our

own. Lets see who is interested. We will pick TWO days ... I will

work out the times, and we will arrange our own. If anyone is

interested ... lets look at Tuesday Feb 21 and Thursday Feb 23. If

anyone is intrested in talking on either of those two days, send me

your city, closest large city and country. I will work out a time.

that hopefully will be acceptable to everyone. and Ann, it

will probably be somewhere after 9PM for you or as late as 11PM ...

would that be acceptable? The only one I worry about is .

Lets see if we can make this puppy dance.

You guys are the greatest! I appreciate all the support I have

received. I have read every post and they mean more than you know.

Thank you,

Kathie in Pittsburgh

**************************

> Dear Kathie,

> What a thorough and amazing account you wrote for us. I think it

> displays your generosity of spirit that you took so much trouble to

> explain everything to us like that. You sound so positive and

hopeful and accepting and I feel so proud of you.

> I am VERY pleased that you are going to be regularly monitored and

> because of this I know that you will be alright. You might have to

go through some unwelcome procedures, but they will be in a good

cause and

> I hope you have forgiven your Husband for his memory lapse. He

really cares about you and would have hated you having to go through

what you did yesterday, and when you are feeling nervous it is often

inevitable that your recollection of events and facts is the first

thing to suffer.

Kathie, I have a job for, and I live on this remote Island in

the North Sea that time has forgotten. Pleeeeeeze will you get out

your magic time chart and work out a time when it's possible that we

could join all you fine people in the chat room. That would be so

nice. Take your time doing this job, there is no pressure on you.

Last Sunday will do just fine (tee hee).

> Lots of love and a big welcome back from your buddy in England

xxxxxx

[Guest guest]

Count me in for Tuesday the 21st xxxx> > Dear Kathie,> > What a thorough and amazing account you wrote for us. I think it> > displays your generosity of spirit that you took so much trouble to> > explain everything to us like that. You sound so positive and > hopeful and accepting and I feel so proud of you.> > I am VERY pleased that you are going to be regularly monitored and> > because of this I know that you will be alright. You might have to > go through some unwelcome procedures, but they will be in a good > cause and > > I hope you have forgiven your Husband for his memory lapse. He > really cares about you and would have hated you having to go through > what you did yesterday, and when you are feeling nervous it is often > inevitable that your recollection of events and facts is the first > thing to suffer.> Kathie, I have a job for, and I live on this remote Island in > the North Sea that time has forgotten. Pleeeeeeze will you get out > your magic time chart and work out a time when it's possible that we > could join all you fine people in the chat room. That would be so > nice. Take your time doing this job, there is no pressure on you. > Last Sunday will do just fine (tee hee).> > Lots of love and a big welcome back from your buddy in England > xxxxxx>

[Guest guest]

I finally worked out that the chat is at 11.30 am the next day for me

which oftern leaves me at work. If I log in it may be sporadic, I

need to cover the boys lunch breaks. Will certainly try.

> > Dear Kathie,

> > What a thorough and amazing account you wrote for us. I think it

> > displays your generosity of spirit that you took so much trouble

to

> > explain everything to us like that. You sound so positive and

> hopeful and accepting and I feel so proud of you.

> > I am VERY pleased that you are going to be regularly monitored and

> > because of this I know that you will be alright. You might have

to

> go through some unwelcome procedures, but they will be in a good

> cause and

> > I hope you have forgiven your Husband for his memory lapse. He

> really cares about you and would have hated you having to go

through

> what you did yesterday, and when you are feeling nervous it is

often

> inevitable that your recollection of events and facts is the first

> thing to suffer.

> Kathie, I have a job for, and I live on this remote Island

in

> the North Sea that time has forgotten. Pleeeeeeze will you get out

> your magic time chart and work out a time when it's possible that

we

> could join all you fine people in the chat room. That would be so

> nice. Take your time doing this job, there is no pressure on you.

> Last Sunday will do just fine (tee hee).

> > Lots of love and a big welcome back from your buddy in England

> xxxxxx

>