Re: Stefan's dilatation

[Guest guest]

Sally, would you like to talk to me via the phone. I would be willing to call you or even have you call here. My home number is 01638 533018. I might be able to answer you question better that way.

in Suffolk

In a message dated 5/15/2006 10:22:07 AM GMT Standard Time, sallyavory@... writes:

Hallo everyone,I have not posted for a while, but am keeping up with you all via long late night reads! This group is so busy!Now my 17 year old son Stefan's dilatation is looming (May 22nd), I am starting to fret. My worry is: The Gastro doctor would rather Stefan had opted for an open Heller's with wrap, but he/we chose the dilatation as Stef does not want to interrupt his sixth form years. And he is not convinced that the Heller will help (the Lap Heller in 2004 didn't work). So he/we put it off (for now).But the Gastro doctor implied that Acid reflux would be a big issue with the dilatation. Has that happened to many of you? Stefan already takes Omeprazole twice a day, presumably 'just in case'.I have to mention another phenomenom while I'm here-Stef says that chicken makes his mouth feel really uncomfortable, so he doesn't have it any more. He never had a problem until the past few months. Anyone else have that happen?Trying to understand...Sally in London UK

[Guest guest]

Well, I am glad he is back home. Having food and liquids left over in the E even after fasting for so long seems to be par for the course. I have always have that problem too. He might feel some discomfort for a few days but that should go away pretty fast. Then hopefully in a day or two his eating will have improved.

in Suffolk

In a message dated 5/25/2006 9:32:46 PM GMT Standard Time, sallyavory@... writes:

Hi all,Stef had the dilatation today at Chelsea & Westminster Hospital. Dr Rawat said there was still food in the E after 17 hrs fasting, and when he put him on his side liquid came out of Stefan's mouth, even though he had not had a drink for 15 hrs. The E looks baggy apparently and some ulcers too. They took a biopsy, and dilated with 3 ballons up to 12mm. They will do the same in a month and maybe then again a month later. It's all quite traumatic as he has to have full anaesthetic, and all that goes with it, and as any parent knows that is very stressful!He came out of surgery with chest pain and a 'stuck feeling', and wanted to drink a lot. We have him home now, and he ate soft food (no improvement yet), so we will wait and see.All the best to you who have to go through it all,and the mums who go through it too........LoveSally in London (bit of Sun, lots of rain)

[Guest guest]

Hi there! Wow... I hope he is doing ok... and you too! Time will tell I guess how well it worked. So when you go back do they stretch it again the same amount? Carolyn mom to Cameronsallyavory <sallyavory@...> wrote: Hi all,Stef had the dilatation today at Chelsea & Westminster Hospital. Dr Rawat said there was still food in the E after 17 hrs fasting, and when he put him on his side liquid came out of Stefan's mouth, even though he had not had a drink for 15 hrs. The E looks baggy apparently and some ulcers too. They took a biopsy, and dilated with 3 ballons up to 12mm. They will do the same in a month and maybe then again a month later. It's all quite traumatic as he has to have full anaesthetic, and all that goes with it, and as any

parent knows that is very stressful!He came out of surgery with chest pain and a 'stuck feeling', and wanted to drink a lot. We have him home now, and he ate soft food (no improvement yet), so we will wait and see.All the best to you who have to go through it all,and the mums who go through it too........LoveSally in London (bit of Sun, lots of rain)

[Guest guest]

Sally, I'm sorry to hear that Stefan had ulcers in his esophagus.

Is the doctor going to put him back on steroids to protect his

esophagus from inflammation? I read that the tissue is thin and

fragile in eosinophilic esophagitis. Or a proton pump inhibitor

to protect it from reflux, since he doesn't have the

fundoplication? I hope he's feeling better soon and that future

dilations are less stressful for both of you.

I downloaded the Achalasia song from

www.myspace.com/icarusburning. Mark quite likes it, as well as

the other songs by Stefan's band.

Carolyn, yes, I forgot to figure in your time difference, so your

3 AM posts must actually be midnight. Mark doesn't think it

helps him to drink huge amounts of water because the water will

get stuck behind the food, and anyway Isordil helps quite well

whenever things are sticking. As a result he has only lost four

or five pounds. But he has been off that for three days in

preparation for today's endoscopy.

Yesterday when he was on clear and full liquids, he didn't notice

any sticking at all, even without Isordil. It's very unusual for

him to have no sticking. Perhaps it means that whenever liquids

are sticking, they're actually backed up behind solids.

Maggie, I don't think Mark's esophagus is so dilated that very

much food is hanging around in there--at least it wasn't too

dilated when he had the barium swallow--but I will ask the doctor

about that.

I'm letting Mark sleep as late as possible today before his 12:30

endoscopy so he doesn't mind the lack of food and drink so much.

Now I must go run on the treadmill for my own emotional health.

Stefan's dilatation

> Hi all,

> Stef had the dilatation today at Chelsea & Westminster

> Hospital. Dr

> Rawat said there was still food in the E after 17 hrs fasting,

> and

> when he put him on his side liquid came out of Stefan's mouth,

> even

> though he had not had a drink for 15 hrs.

> The E looks baggy apparently and some ulcers too. They took a

> biopsy,

> and dilated with 3 ballons up to 12mm. They will do the same

> in a

> month and maybe then again a month later.

> It's all quite traumatic as he has to have full anaesthetic,

> and all

> that goes with it, and as any parent knows that is very

> stressful!

> He came out of surgery with chest pain and a 'stuck feeling',

> and

> wanted to drink a lot. We have him home now, and he ate soft

> food (no

> improvement yet), so we will wait and see.

> All the best to you who have to go through it all,

> and the mums who go through it too........

> Love

> Sally in London (bit of Sun, lots of rain)

>

[Guest guest]

The E is about 10 to 14 inches long and about 1 inch in diameter. That is the information I have found.

in Suffolk

In a message dated 5/26/2006 8:09:11 PM GMT Standard Time, sallyavory@... writes:

Question?? What is 'normal size' for the E?We had a chat with Dr Rawat today and he said Stefan's E is two or three times normal size-a bit vague I thought, but very worrying.So my husband has suggested a small portion regime and less liquid if possible. I told Stef to stop fighting the regurging, and let it come back up sometimes-he was not impressed!We also explained about the bagginess, and tried to get him to take the responsibility for eating less upon his teenage crazy self. Not easy!! Strange that none of his doctors has ever suggested a diet for Esophagus preservation. I was quite suprised yesterday evening when I returned from a quick phone call, back to the ward, to find Stefan being escorted to the food trolley for heavy food. After what I've read here, it makes sense to take it slow.....Anyway he wheezed through the night, so I put him on the Asthma inhaler, just to be safe.He's not bad today, had little meals and careful with the drinks!, Stef is on the proton pump inhibitors already.Hope it goes well today for MarkBest wishes,Sally, Stefan>> Sally, I'm sorry to hear that Stefan had ulcers in his esophagus. > Is the doctor going to put him back on steroids to protect his > esophagus from inflammation? I read that the tissue is thin and > fragile in eosinophilic esophagitis. Or a proton pump inhibitor > to protect it from reflux, since he doesn't have the > fundoplication? I hope he's feeling better soon and that future > dilations are less stressful for both of you.> > I downloaded the Achalasia song from > www.myspace.com/icarusburning. Mark quite likes it, as well as > the other songs by Stefan's band.> > Carolyn, yes, I forgot to figure in your time difference, so your > 3 AM posts must actually be midnight. Mark doesn't think it > helps him to drink huge amounts of water because the water will > get stuck behind the food, and anyway Isordil helps quite well > whenever things are sticking. As a result he has only lost four > or five pounds. But he has been off that for three days in > preparation for today's endoscopy.> > Yesterday when he was on clear and full liquids, he didn't notice > any sticking at all, even without Isordil. It's very unusual for > him to have no sticking. Perhaps it means that whenever liquids > are sticking, they're actually backed up behind solids.> > Maggie, I don't think Mark's esophagus is so dilated that very > much food is hanging around in there--at least it wasn't too > dilated when he had the barium swallow--but I will ask the doctor > about that.> > I'm letting Mark sleep as late as possible today before his 12:30 > endoscopy so he doesn't mind the lack of food and drink so much. > Now I must go run on the treadmill for my own emotional health.> > > > Stefan's dilatation> > > > Hi all,> > Stef had the dilatation today at Chelsea & Westminster > > Hospital. Dr> > Rawat said there was still food in the E after 17 hrs fasting, > > and> > when he put him on his side liquid came out of Stefan's mouth, > > even> > though he had not had a drink for 15 hrs.> > The E looks baggy apparently and some ulcers too. They took a > > biopsy,> > and dilated with 3 ballons up to 12mm. They will do the same > > in a> > month and maybe then again a month later.> > It's all quite traumatic as he has to have full anaesthetic, > > and all> > that goes with it, and as any parent knows that is very > > stressful!> > He came out of surgery with chest pain and a 'stuck feeling', > > and> > wanted to drink a lot. We have him home now, and he ate soft > > food (no> > improvement yet), so we will wait and see.> > All the best to you who have to go through it all,> > and the mums who go through it too........> > Love> > Sally in London (bit of Sun, lots of rain)> >>

[Guest guest]

Hi Sally,

According to one article, the normal E when swallowing has a diameter of 1 inch.

MUSC DDC - Esophagus

I just have a comment to make. (Actually 2 comments now)

First one is that I see that beat me to the punch again.

Second one is that, while I agree with your husband's thought of a portion regime, I don't agree with his thought about less liquid, if possible.

Achalasians need liquids to survive. There is no such thing as drinking too much liquids (unless those liquids have a certain alcohol content).

The main thing to do, whether or not one has had surgeries, balloon dilatations, stretchings, or nothing at all, is to eat slowly, drink plenty, and have the E cleared before going to sleep.

In a message dated 5/26/2006 3:09:29 P.M. Eastern Daylight Time, sallyavory@... writes:

Question?? What is 'normal size' for the E?We had a chat with Dr Rawat today and he said Stefan's E is two or three times normal size-a bit vague I thought, but very worrying.So my husband has suggested a small portion regime and less liquid if possible. I told Stef to stop fighting the regurging, and let it come back up sometimes-he was not impressed!We also explained about the bagginess, and tried to get him to take the responsibility for eating less upon his teenage crazy self. Not easy!! Strange that none of his doctors has ever suggested a diet for Esophagus preservation. I was quite suprised yesterday evening when I returned from a quick phone call, back to the ward, to find Stefan being escorted to the food trolley for heavy food. After what I've read here, it makes sense to take it slow.....Anyway he wheezed through the night, so I put him on the Asthma inhaler, just to be safe.He's not bad today, had little meals and careful with the drinks!, Stef is on the proton pump inhibitors already.Hope it goes well today for MarkBest wishes,Sally, Stefan>> Sally, I'm sorry to hear that Stefan had ulcers in his esophagus. > Is the doctor going to put him back on steroids to protect his > esophagus from inflammation? I read that the tissue is thin and > fragile in eosinophilic esophagitis. Or a proton pump inhibitor > to protect it from reflux, since he doesn't have the > fundoplication? I hope he's feeling better soon and that future > dilations are less stressful for both of you.> > I downloaded the Achalasia song from > www.myspace.com/icarusburning. Mark quite likes it, as well as > the other songs by Stefan's band.> > Carolyn, yes, I forgot to figure in your time difference, so your > 3 AM posts must actually be midnight. Mark doesn't think it > helps him to drink huge amounts of water because the water will > get stuck behind the food, and anyway Isordil helps quite well > whenever things are sticking. As a result he has only lost four > or five pounds. But he has been off that for three days in > preparation for today's endoscopy.> > Yesterday when he was on clear and full liquids, he didn't notice > any sticking at all, even without Isordil. It's very unusual for > him to have no sticking. Perhaps it means that whenever liquids > are sticking, they're actually backed up behind solids.> > Maggie, I don't think Mark's esophagus is so dilated that very > much food is hanging around in there--at least it wasn't too > dilated when he had the barium swallow--but I will ask the doctor > about that.> > I'm letting Mark sleep as late as possible today before his 12:30 > endoscopy so he doesn't mind the lack of food and drink so much. > Now I must go run on the treadmill for my own emotional health.> > > > Stefan's dilatation> > > > Hi all,> > Stef had the dilatation today at Chelsea & Westminster > > Hospital. Dr> > Rawat said there was still food in the E after 17 hrs fasting, > > and> > when he put him on his side liquid came out of Stefan's mouth, > > even> > though he had not had a drink for 15 hrs.> > The E looks baggy apparently and some ulcers too. They took a > > biopsy,> > and dilated with 3 ballons up to 12mm. They will do the same > > in a> > month and maybe then again a month later.> > It's all quite traumatic as he has to have full anaesthetic, > > and all> > that goes with it, and as any parent knows that is very > > stressful!> > He came out of surgery with chest pain and a 'stuck feeling', > > and> > wanted to drink a lot. We have him home now, and he ate soft > > food (no> > improvement yet), so we will wait and see.> > All the best to you who have to go through it all,> > and the mums who go through it too........> > Love> > Sally in London (bit of Sun, lots of rain)> >>

[Guest guest]

, sorry to always steal your thunder. I will work and not doing that so much. When we move it will be a really good race for that thunder....lol

in Suffolk

In a message dated 5/26/2006 8:22:55 PM GMT Standard Time, cynmark24@... writes:

Hi Sally,

According to one article, the normal E when swallowing has a diameter of 1 inch.

MUSC DDC - Esophagus

I just have a comment to make. (Actually 2 comments now)

First one is that I see that beat me to the punch again.

Second one is that, while I agree with your husband's thought of a portion regime, I don't agree with his thought about less liquid, if possible.

Achalasians need liquids to survive. There is no such thing as drinking too much liquids (unless those liquids have a certain alcohol content).

The main thing to do, whether or not one has had surgeries, balloon dilatations, stretchings, or nothing at all, is to eat slowly, drink plenty, and have the E cleared before going to sleep.

In a message dated 5/26/2006 3:09:29 P.M. Eastern Daylight Time, sallyavory@... writes:

Question?? What is 'normal size' for the E?We had a chat with Dr Rawat today and he said Stefan's E is two or three times normal size-a bit vague I thought, but very worrying.So my husband has suggested a small portion regime and less liquid if possible. I told Stef to stop fighting the regurging, and let it come back up sometimes-he was not impressed!We also explained about the bagginess, and tried to get him to take the responsibility for eating less upon his teenage crazy self. Not easy!! Strange that none of his doctors has ever suggested a diet for Esophagus preservation. I was quite suprised yesterday evening when I returned from a quick phone call, back to the ward, to find Stefan being escorted to the food trolley for heavy food. After what I've read here, it makes sense to take it slow.....Anyway he wheezed through the night, so I put him on the Asthma inhaler, just to be safe.He's not bad today, had little meals and careful with the drinks!, Stef is on the proton pump inhibitors already.Hope it goes well today for MarkBest wishes,Sally, Stefan>> Sally, I'm sorry to hear that Stefan had ulcers in his esophagus. > Is the doctor going to put him back on steroids to protect his > esophagus from inflammation? I read that the tissue is thin and > fragile in eosinophilic esophagitis. Or a proton pump inhibitor > to protect it from reflux, since he doesn't have the > fundoplication? I hope he's feeling better soon and that future > dilations are less stressful for both of you.> > I downloaded the Achalasia song from > www.myspace.com/icarusburning. Mark quite likes it, as well as > the other songs by Stefan's band.> > Carolyn, yes, I forgot to figure in your time difference, so your > 3 AM posts must actually be midnight. Mark doesn't think it > helps him to drink huge amounts of water because the water will > get stuck behind the food, and anyway Isordil helps quite well > whenever things are sticking. As a result he has only lost four > or five pounds. But he has been off that for three days in > preparation for today's endoscopy.> > Yesterday when he was on clear and full liquids, he didn't notice > any sticking at all, even without Isordil. It's very unusual for > him to have no sticking. Perhaps it means that whenever liquids > are sticking, they're actually backed up behind solids.> > Maggie, I don't think Mark's esophagus is so dilated that very > much food is hanging around in there--at least it wasn't too > dilated when he had the barium swallow--but I will ask the doctor > about that.> > I'm letting Mark sleep as late as possible today before his 12:30 > endoscopy so he doesn't mind the lack of food and drink so much. > Now I must go run on the treadmill for my own emotional health.> > > > Stefan's dilatation> > > > Hi all,> > Stef had the dilatation today at Chelsea & Westminster > > Hospital. Dr> > Rawat said there was still food in the E after 17 hrs fasting, > > and> > when he put him on his side liquid came out of Stefan's mouth, > > even> > though he had not had a drink for 15 hrs.> > The E looks baggy apparently and some ulcers too. They took a > > biopsy,> > and dilated with 3 ballons up to 12mm. They will do the same > > in a> > month and maybe then again a month later.> > It's all quite traumatic as he has to have full anaesthetic, > > and all> > that goes with it, and as any parent knows that is very > > stressful!> > He came out of surgery with chest pain and a 'stuck feeling', > > and> > wanted to drink a lot. We have him home now, and he ate soft > > food (no> > improvement yet), so we will wait and see.> > All the best to you who have to go through it all,> > and the mums who go through it too........> > Love> > Sally in London (bit of Sun, lots of rain)> >>

[Guest guest]

Question?? What is 'normal size' for the E?

We had a chat with Dr Rawat today and he said Stefan's E is two or

three times normal size-a bit vague I thought, but very worrying.

So my husband has suggested a small portion regime and less liquid

if possible. I told Stef to stop fighting the regurging, and let it

come back up sometimes-he was not impressed!

We also explained about the bagginess, and tried to get him to take

the responsibility for eating less upon his teenage crazy self. Not

easy!! Strange that none of his doctors has ever suggested a diet

for Esophagus preservation. I was quite suprised yesterday evening

when I returned from a quick phone call, back to the ward, to find

Stefan being escorted to the food trolley for heavy food. After what

I've read here, it makes sense to take it slow.....

Anyway he wheezed through the night, so I put him on the Asthma

inhaler, just to be safe.

He's not bad today, had little meals and careful with the drinks!

, Stef is on the proton pump inhibitors already.

Hope it goes well today for Mark

Best wishes,

Sally, Stefan

>

> Sally, I'm sorry to hear that Stefan had ulcers in his esophagus.

> Is the doctor going to put him back on steroids to protect his

> esophagus from inflammation? I read that the tissue is thin and

> fragile in eosinophilic esophagitis. Or a proton pump inhibitor

> to protect it from reflux, since he doesn't have the

> fundoplication? I hope he's feeling better soon and that future

> dilations are less stressful for both of you.

>

> I downloaded the Achalasia song from

> www.myspace.com/icarusburning. Mark quite likes it, as well as

> the other songs by Stefan's band.

>

> Carolyn, yes, I forgot to figure in your time difference, so your

> 3 AM posts must actually be midnight. Mark doesn't think it

> helps him to drink huge amounts of water because the water will

> get stuck behind the food, and anyway Isordil helps quite well

> whenever things are sticking. As a result he has only lost four

> or five pounds. But he has been off that for three days in

> preparation for today's endoscopy.

>

> Yesterday when he was on clear and full liquids, he didn't notice

> any sticking at all, even without Isordil. It's very unusual for

> him to have no sticking. Perhaps it means that whenever liquids

> are sticking, they're actually backed up behind solids.

>

> Maggie, I don't think Mark's esophagus is so dilated that very

> much food is hanging around in there--at least it wasn't too

> dilated when he had the barium swallow--but I will ask the doctor

> about that.

>

> I'm letting Mark sleep as late as possible today before his 12:30

> endoscopy so he doesn't mind the lack of food and drink so much.

> Now I must go run on the treadmill for my own emotional health.

>

>

>

> Stefan's dilatation

>

>

> > Hi all,

> > Stef had the dilatation today at Chelsea & Westminster

> > Hospital. Dr

> > Rawat said there was still food in the E after 17 hrs fasting,

> > and

> > when he put him on his side liquid came out of Stefan's mouth,

> > even

> > though he had not had a drink for 15 hrs.

> > The E looks baggy apparently and some ulcers too. They took a

> > biopsy,

> > and dilated with 3 ballons up to 12mm. They will do the same

> > in a

> > month and maybe then again a month later.

> > It's all quite traumatic as he has to have full anaesthetic,

> > and all

> > that goes with it, and as any parent knows that is very

> > stressful!

> > He came out of surgery with chest pain and a 'stuck feeling',

> > and

> > wanted to drink a lot. We have him home now, and he ate soft

> > food (no

> > improvement yet), so we will wait and see.

> > All the best to you who have to go through it all,

> > and the mums who go through it too........

> > Love

> > Sally in London (bit of Sun, lots of rain)

> >

>

[Guest guest]

Cindi did a great piece of research on what sizes of the esophagus for various

stages of

achalasia:

2-3 cm is normal

4-5 cm is stage two, and bird beak looking

5-7 cm is stage three

8+ cm is signmoid or stage 4

> >

> > Sally, I'm sorry to hear that Stefan had ulcers in his esophagus.

> > Is the doctor going to put him back on steroids to protect his

> > esophagus from inflammation? I read that the tissue is thin and

> > fragile in eosinophilic esophagitis. Or a proton pump inhibitor

> > to protect it from reflux, since he doesn't have the

> > fundoplication? I hope he's feeling better soon and that future

> > dilations are less stressful for both of you.

> >

> > I downloaded the Achalasia song from

> > www.myspace.com/icarusburning. Mark quite likes it, as well as

> > the other songs by Stefan's band.

> >

> > Carolyn, yes, I forgot to figure in your time difference, so your

> > 3 AM posts must actually be midnight. Mark doesn't think it

> > helps him to drink huge amounts of water because the water will

> > get stuck behind the food, and anyway Isordil helps quite well

> > whenever things are sticking. As a result he has only lost four

> > or five pounds. But he has been off that for three days in

> > preparation for today's endoscopy.

> >

> > Yesterday when he was on clear and full liquids, he didn't notice

> > any sticking at all, even without Isordil. It's very unusual for

> > him to have no sticking. Perhaps it means that whenever liquids

> > are sticking, they're actually backed up behind solids.

> >

> > Maggie, I don't think Mark's esophagus is so dilated that very

> > much food is hanging around in there--at least it wasn't too

> > dilated when he had the barium swallow--but I will ask the doctor

> > about that.

> >

> > I'm letting Mark sleep as late as possible today before his 12:30

> > endoscopy so he doesn't mind the lack of food and drink so much.

> > Now I must go run on the treadmill for my own emotional health.

> >

> >

> >

> > Stefan's dilatation

> >

> >

> > > Hi all,

> > > Stef had the dilatation today at Chelsea & Westminster

> > > Hospital. Dr

> > > Rawat said there was still food in the E after 17 hrs fasting,

> > > and

> > > when he put him on his side liquid came out of Stefan's mouth,

> > > even

> > > though he had not had a drink for 15 hrs.

> > > The E looks baggy apparently and some ulcers too. They took a

> > > biopsy,

> > > and dilated with 3 ballons up to 12mm. They will do the same

> > > in a

> > > month and maybe then again a month later.

> > > It's all quite traumatic as he has to have full anaesthetic,

> > > and all

> > > that goes with it, and as any parent knows that is very

> > > stressful!

> > > He came out of surgery with chest pain and a 'stuck feeling',

> > > and

> > > wanted to drink a lot. We have him home now, and he ate soft

> > > food (no

> > > improvement yet), so we will wait and see.

> > > All the best to you who have to go through it all,

> > > and the mums who go through it too........

> > > Love

> > > Sally in London (bit of Sun, lots of rain)

> > >

> >

>