New Here

[Guest guest]

Hi ,

Dr. Rice at The Cleveland Clinic performed a myotomy on my 14 year old

son in October. We live in land with wonderful hospitals like

s Hopkins, but chose to go to Cleveland because of Dr. Rice's

experience with Achalasia. I highly recommend him as well. Vicki

> >

> > Hi everyone. I am new to the boards and looking for imformation on

> > what to do after the myotomy. Seems like things are now far more

> > complex now than in 2004 when they found out that it was

achalasia. I

> > just went and bought Boost this morning since I am having such a hard

> > time with anything that has any bulk. I have been running on cheetos

> > and cheese nips since they work the best right now.

> >

> > I am very open to anything anyone can tell me. The doc that I am

> > seeing at Duke leaves me feeling like they don't know what to do for

> > me. So if there is help out there I would love to find it before too

> > much longer.

> >

> >

> >

>

[Guest guest]

Yes, s Hopkins and Washington University have started

" advertising themselves " as specialists in achalasia, but there are

better doctors and hospitals such as the ones mentioned on this board.

I did a lot of research before selecting Cleveland Clinic after two

different GI doctors in Northern VA did far too many dialations and

too many Botox procedures.

Dr. Rice did a dilation on me right after he performed the Lap Heller.

I did very well, but did not go back to see Dr. Rice for three years

(a BIG NO NO) because of personal family reasons, and now have to have

the esophagectomy. Always remember, your health should come first no

matter what.

In VA

> > >

> > > Hi everyone. I am new to the boards and looking for imformation on

> > > what to do after the myotomy. Seems like things are now far more

> > > complex now than in 2004 when they found out that it was

> achalasia. I

> > > just went and bought Boost this morning since I am having such a

hard

> > > time with anything that has any bulk. I have been running on

cheetos

> > > and cheese nips since they work the best right now.

> > >

> > > I am very open to anything anyone can tell me. The doc that I am

> > > seeing at Duke leaves me feeling like they don't know what to do

for

> > > me. So if there is help out there I would love to find it

before too

> > > much longer.

> > >

> > >

> > >

> >

>

[Guest guest]

Dear ,

I remember some of your messages but forgive me if I've blended some of the new people together, but could you explain how it got so bad so quickly after Dr. Rice did your myotomy? Were you already on the verge of a removal before? There are quite a few members here that were tetter tottering between a myotomy or removal and had the myotomy and have gone many years.

It is a very serious issue, but that sentence is almost funny, and PLEASE don't take this wrong, I have a bad habit of enjoying black humor and irony... but you say Dr. Rice is wonderful, you wouldn't go to anyone else, yet you have a newish myotomy and need a removal so soon. And please I don't want to start a contest between doctors, but do appreciate pros and cons and open discussion of the doctors we see.

And as a side note... gets busy sometimes, but her doctor has done some research that saving the esophagus is better by far, so far in his research, than a removal. I have no opinion if that is right or wrong but it would be interesting if you could get his opinion.

Because of the recent issues people are having, I think I'd hide from even an appendectomy at this point, so any way to avoid the major surgery sounds better and better to me, at least this week. Usually I highly advocate doing something sooner than quicker to improve your quality of life, and hope people do have surgery, but lately... well you know....

Please don't take this as a criticism of Dr. Rice, I'm very curious how you got there so fast. What did he warn you of or did you just reach a denial state and avoiding taking care of yourself? We are all very different and the disease moves quickly and slowly, but we all hope the myotomy will prevent a removal. Were you already sigmoid and droopy and all the other things that happen to all parts of our body as we age, let alone the esophagus? Again forgive me if you have explained it all, I skim some postings and they blend sometimes.

Sandy> >> > Hi everyone. I am new to the boards and looking for imformation on > > what to do after the myotomy. Seems like things are now far more > > complex now than in 2004 when they found out that it was achalasia. I > > just went and bought Boost this morning since I am having such a hard > > time with anything that has any bulk. I have been running on cheetos > > and cheese nips since they work the best right now. > > > > I am very open to anything anyone can tell me. The doc that I am > > seeing at Duke leaves me feeling like they don't know what to do for > > me. So if there is help out there I would love to find it before too > > much longer.> > > > > >>

[Guest guest]

Hi ,

I am so sorry to hear you are having renewed problems after a myotomy.

Know how it feels, been there myself (still am there). My first myotomy did succeed about 12 years ago, but I got a severe fall back and had my second one done about a year ago. I am now awaiting my -ectomy.

What is good advise here? Well, that's a good question.

The first and very best advice to give you is to not rush into things. To not go with the flow. To not go along with the first treatment option offered to you, whether it is dilation, myotomy or -ectomy.

I doubt whether the surgeon who performed your first myotomy was an experienced one, as I read in your post that he doesn't seem to know where to go from here. I don't like that, to be honest. Have you got any idea as to how many myotomies he performed? Success rates? Complication rates?

Did your myotomy work in the beginning? Did you get any relief from it? Have you had an gastroscopy lately? I know, I am asking many questions, but they are important.

What causes a fall back after a myotomy often stays unknown. I still don't know what caused my problems to return and I still don't know what caused my second myotomy to fail. Scar tissue? Just plain and simple my case of achalasia? My pregnancies? My wrong fundoplication (had a Nissen, which is wrong in achalasia, but isn't done nowadays in achalasia anymore)? The myotomy itself done wrong? I don't know and I never will.

What I do know, is that I gave myself a very long time to decide what the next step should be. I didn't at all rush into another treatment. I checked with every renowned achalasia specialist in the world whether I should have an -ectomy or not. This as in Holland (I am from The Netherlands) I was recommended to have an -ectomy done, whereas a well-known German surgeon told me that wouldn't be the right way for me. I checked checked and double checked. I weighed my decision very carefully, weighing pro's of again a myotomy (would be my 3rd one) and weighing the pro's of an -ectomy and of course weighing the con's of both as well.

In my case (every case is different, bear that in mind!) the weighing lead to the conclusion I don't have another option and need to go for the -ectomy.

It took me a lot of time, a lot of nerves, a lot of mental pain and stress and above all a lot of discussion and research before reaching the point to say: YES, I'll go for it.

What's my point here? Well, not to jump to conclusions and not to have any doctor jump to conclusions either (or at least not going along with such conclusion).

There are several options and you should be carefull in weighing them. A simple dilatation might just do the trick, or maybe a corrective myotomy ( -Tonia's son- had a redo as well and is doing great now). Maybe something more major. Leave every option open and stay as open minded as you are right now. See if you can find out the cause of the renewed problems (that's difficult, as mentioned before). If you see a doc (even when it's Dr. Rice!) don't end the discussion by saying: OK, I'll do what you advise. NO. Go home and take your time to think things over. Let it sink in and weigh the options. Ask risks, rates, benefits etc. of each and every treatment. Weigh them. What do you want to reach?

Rambing on here, aren't I? Sorry for that, it's written with good intentions and hopefully helps you at least a tiny little bit.

Isabella

Re: New here

I am located about 47 north of Duke in a small town in Virginia called South Boston. I am currently going through more testing and wil get the results on the 5th of Feb. when I go to see the Doctor. I did have a EGD and was told that a 17 dilator passed just find. At the last barium swallow a 12mm pill got stuck and would not go down. I could see the size of my esophagus. It looks like a first stomach. This was not the case in 2004, it appeared normal in size then. I am just fustrated due to the lack of help I can find. There has to be a better way out there.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi ,

I am so sorry to hear you are having renewed problems after a myotomy.

Know how it feels, been there myself (still am there). My first myotomy did succeed about 12 years ago, but I got a severe fall back and had my second one done about a year ago. I am now awaiting my -ectomy.

What is good advise here? Well, that's a good question.

The first and very best advice to give you is to not rush into things. To not go with the flow. To not go along with the first treatment option offered to you, whether it is dilation, myotomy or -ectomy.

I doubt whether the surgeon who performed your first myotomy was an experienced one, as I read in your post that he doesn't seem to know where to go from here. I don't like that, to be honest. Have you got any idea as to how many myotomies he performed? Success rates? Complication rates?

Did your myotomy work in the beginning? Did you get any relief from it? Have you had an gastroscopy lately? I know, I am asking many questions, but they are important.

What causes a fall back after a myotomy often stays unknown. I still don't know what caused my problems to return and I still don't know what caused my second myotomy to fail. Scar tissue? Just plain and simple my case of achalasia? My pregnancies? My wrong fundoplication (had a Nissen, which is wrong in achalasia, but isn't done nowadays in achalasia anymore)? The myotomy itself done wrong? I don't know and I never will.

What I do know, is that I gave myself a very long time to decide what the next step should be. I didn't at all rush into another treatment. I checked with every renowned achalasia specialist in the world whether I should have an -ectomy or not. This as in Holland (I am from The Netherlands) I was recommended to have an -ectomy done, whereas a well-known German surgeon told me that wouldn't be the right way for me. I checked checked and double checked. I weighed my decision very carefully, weighing pro's of again a myotomy (would be my 3rd one) and weighing the pro's of an -ectomy and of course weighing the con's of both as well.

In my case (every case is different, bear that in mind!) the weighing lead to the conclusion I don't have another option and need to go for the -ectomy.

It took me a lot of time, a lot of nerves, a lot of mental pain and stress and above all a lot of discussion and research before reaching the point to say: YES, I'll go for it.

What's my point here? Well, not to jump to conclusions and not to have any doctor jump to conclusions either (or at least not going along with such conclusion).

There are several options and you should be carefull in weighing them. A simple dilatation might just do the trick, or maybe a corrective myotomy ( -Tonia's son- had a redo as well and is doing great now). Maybe something more major. Leave every option open and stay as open minded as you are right now. See if you can find out the cause of the renewed problems (that's difficult, as mentioned before). If you see a doc (even when it's Dr. Rice!) don't end the discussion by saying: OK, I'll do what you advise. NO. Go home and take your time to think things over. Let it sink in and weigh the options. Ask risks, rates, benefits etc. of each and every treatment. Weigh them. What do you want to reach?

Rambing on here, aren't I? Sorry for that, it's written with good intentions and hopefully helps you at least a tiny little bit.

Isabella

Re: New here

I am located about 47 north of Duke in a small town in Virginia called South Boston. I am currently going through more testing and wil get the results on the 5th of Feb. when I go to see the Doctor. I did have a EGD and was told that a 17 dilator passed just find. At the last barium swallow a 12mm pill got stuck and would not go down. I could see the size of my esophagus. It looks like a first stomach. This was not the case in 2004, it appeared normal in size then. I am just fustrated due to the lack of help I can find. There has to be a better way out there.

Looking for last minute shopping deals? Find them fast with Search.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Well everyone, here is the story. Basically, I did not take care of me

between 2004 and now. I was supposed to go back and see Dr. Rice each

year, but I didn't. The reasons--I lost both of my parents to

suffering deaths within a 50 week time period (father-lung cancer;

mother-liver failure). I am an only child, so I felt I could not leave

them. Then I found out I was 'married' to a serial bigamist (the

infamous Dr. Phil bigamist) see my blog at www.fightbigamy.typepad.com

and read the " About " section to learn more about me there and my fight

for justice.

The swallowing got worse and worse and I was hospitalized here several

times in 2006 and 2006 for regurgitation that would not stop. I was

missing so much work that basically I was on a part-time schedule

because of the achalasia (at this point just eating ice cream and

creamy pasta) that my company said if I did not go on disability, I

would lose my health insurance.

My friends intervened and said I must get back to Cleveland, which I

did in late October. I saw Dr. Rice and boy was he upset that I had

not been there since August 2004. Another dilation is out of the

question as well as a another myotomy---I have way too much scar

tissue from far too many Botox procedures done here in Northern VA.

Dr. Rice sent me home to lose weight and try to enjoy the holidays and

then return in early January for a consult. During Thanksgiving and

Christmas, anything with any substance would not go down. I ended up

in the hospital again on Dec. 26 for four days because I started

vomiting and when I start I cannot stop. Basically, I am tired of

living like this. The 'ectomy was my decision and like Isabella, I

have weighed everything. I need to work full time, I want to enjoy

real food again. I want to feel whole. I never want to have another

spasm.

In VA

> > >

> > > Hi everyone. I am new to the boards and looking for imformation on

> > > what to do after the myotomy. Seems like things are now far more

> > > complex now than in 2004 when they found out that it was achalasia.

> I

> > > just went and bought Boost this morning since I am having such a

> hard

> > > time with anything that has any bulk. I have been running on cheetos

> > > and cheese nips since they work the best right now.

> > >

> > > I am very open to anything anyone can tell me. The doc that I am

> > > seeing at Duke leaves me feeling like they don't know what to do for

> > > me. So if there is help out there I would love to find it before too

> > > much longer.

> > >

> > >

> > >

> >

>

[Guest guest]

Now when you say -ectomy... what happens after that? Do they just

put in a peg and leave it at that? I don't think I can go that

route. Please explain what happens after that. I have not read

anything about having an ectomy for treatment.

I am going to see what the doc says after my test are done. I am

hoping it is the case of a dialtion or maybe that the wrap is too

tight. if that is the case then I can go and get it redone and out in

a day. My myotomy was done lap and I was only in the hospital over

night. I just feel hopeless due to not having many choices. I am a

nurse and know that I am not alone but feel that way since I have to

go throught this alone. My husband had even asked if it was in my

head. It was hard to to throw kniefs at him.

> > > >

> > > > Hi everyone. I am new to the boards and looking for

imformation on

> > > > what to do after the myotomy. Seems like things are now far

more

> > > > complex now than in 2004 when they found out that it was

achalasia.

> > I

> > > > just went and bought Boost this morning since I am having

such a

> > hard

> > > > time with anything that has any bulk. I have been running on

cheetos

> > > > and cheese nips since they work the best right now.

> > > >

> > > > I am very open to anything anyone can tell me. The doc that I

am

> > > > seeing at Duke leaves me feeling like they don't know what to

do for

> > > > me. So if there is help out there I would love to find it

before too

> > > > much longer.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

- Sometimes we allow life to get in the way of things and

guess what...ITS NORMAL! We all have done it in one way or another.

Im sure if it could have been done over again you would have not

done this to yourself.But we make mistakes.... and thats the price

we have to pay for them.We all live sometimes by others mistakes so,

This is a lesson to all of us out here that have achalasia or a

loved one who does.This is why its so important to keep follow up

care all of your life with this disease.

Im sorry you are having to go through this disease and major surgery

alone.Please know I am here for you in any way I can be.I am only a

phone call away at anytime.I also have free long distance and will

stay in touch with you through out your stay in Cleveland if you

would feel up to talking.I know this will be hard as you dont have

much family.Dont hesitate to call me, e mail at anytime.Im here for

you.tcooper1973@...

I have used your story to show how important follow up care is

for this disease. I think he realizes its not going away and with

out taking care of himself and follow up care things can get worse

and much worse very quickly.Even for people who have had regular

follow up care.... are having to have ectomy done, but with out

follow up care it comes way sooner as you have shown here.

Yeah Im sure DR RICE wasnt happy.We have been there and done that

with him. didnt complete his Ph test and he was livid.Oh well

he got over it and JAMES NEEDS TO ACTUALLY still get this done when

we go back to Cleveland in about 8 -10 months.FUN FUN!

Take care SAndra and do stay in touch ok.

Hugs-Tonia

> > > >

> > > > Hi everyone. I am new to the boards and looking for

imformation on

> > > > what to do after the myotomy. Seems like things are now far

more

> > > > complex now than in 2004 when they found out that it was

achalasia.

> > I

> > > > just went and bought Boost this morning since I am having

such a

> > hard

> > > > time with anything that has any bulk. I have been running on

cheetos

> > > > and cheese nips since they work the best right now.

> > > >

> > > > I am very open to anything anyone can tell me. The doc that

I am

> > > > seeing at Duke leaves me feeling like they don't know what

to do for

> > > > me. So if there is help out there I would love to find it

before too

> > > > much longer.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Hi ,

The -ectomy is getting a (in)famous word here on the board. It stands for esophagectomy. This is the removal of the esophagus. It is done in several ways. In my case the esophagus is removed from a few cm at it's beginning (in the neck) completely downwards, including removal of half the stomach. The other half of my stomach will be pulled up into the neck area, thus forming my new esophagus (if I have a stomach ache in a few months, I'll grab my neck: aaaargh I've got a stomach ache -LOL-). It's major surgery, including risks (which surgery doesn't?).

First things first. First find out what's wrong, then find out what the options are, then weigh them.

I know you must feel very much alone. I have my achalasia for over 15 years now. Thank God I have a very understanding husband, but in the beginning he was the only one to understand and believe me. I was thought to be a bulimic (I was in my teens). There was no internet. When I found out it was achalasia, all I knew was that it was rare... didn't have a chance to write or talk with others. I've been alone with this disease for a long long time and so have many others. Nowadays we've got the internet and I don't feel alone anymore. I know achalasia still is rare, but it doesn't feel like that at all to me anymore.

Stay strong and be patient.

Love,

Isabella

Re: New here

Now when you say -ectomy... what happens after that? Do they just put in a peg and leave it at that? I don't think I can go that route. Please explain what happens after that. I have not read anything about having an ectomy for treatment. I am going to see what the doc says after my test are done. I am hoping it is the case of a dialtion or maybe that the wrap is too tight. if that is the case then I can go and get it redone and out in a day. My myotomy was done lap and I was only in the hospital over night. I just feel hopeless due to not having many choices. I am a nurse and know that I am not alone but feel that way since I have to go throught this alone. My husband had even asked if it was in my head. It was hard to to throw kniefs at him. > > > >> > > > Hi everyone. I am new to the boards and looking for imformation on> > > > what to do after the myotomy. Seems like things are now far more> > > > complex now than in 2004 when they found out that it was achalasia.> > I> > > > just went and bought Boost this morning since I am having such a> > hard> > > > time with anything that has any bulk. I have been running on cheetos> > > > and cheese nips since they work the best right now.> > > >> > > > I am

very open to anything anyone can tell me. The doc that I am> > > > seeing at Duke leaves me feeling like they don't know what to do for> > > > me. So if there is help out there I would love to find it before too> > > > much longer.> > > >> > > > > > > >> > >> >>

Never miss a thing. Make your homepage.

[Guest guest]

I won't be alone all the time. I have a 30-year old son,

daughter-in-law and a 20 month old grandson who will all be with me a

first. They will have to go home and my son will fly back later the

following week.

Oh yes, Dr. Rice was beyond livid because I had not been back in over

three years. He said we could have probably prevented the 'ectomy had

I kept up with my follow up care.

Oh please do call. I hope to take my laptop with me also. Eleven days

and counting!

In VA

> > > > >

> > > > > Hi everyone. I am new to the boards and looking for

> imformation on

> > > > > what to do after the myotomy. Seems like things are now far

> more

> > > > > complex now than in 2004 when they found out that it was

> achalasia.

> > > I

> > > > > just went and bought Boost this morning since I am having

> such a

> > > hard

> > > > > time with anything that has any bulk. I have been running on

> cheetos

> > > > > and cheese nips since they work the best right now.

> > > > >

> > > > > I am very open to anything anyone can tell me. The doc that

> I am

> > > > > seeing at Duke leaves me feeling like they don't know what

> to do for

> > > > > me. So if there is help out there I would love to find it

> before too

> > > > > much longer.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Thats right I forgot about your son and daughter n law. Thats great

I am glad they will be with you some.

I will indeed call and check in on you : )

Hugs- Tonia

> > > > > >

> > > > > > Hi everyone. I am new to the boards and looking for

> > imformation on

> > > > > > what to do after the myotomy. Seems like things are now

far

> > more

> > > > > > complex now than in 2004 when they found out that it was

> > achalasia.

> > > > I

> > > > > > just went and bought Boost this morning since I am

having

> > such a

> > > > hard

> > > > > > time with anything that has any bulk. I have been

running on

> > cheetos

> > > > > > and cheese nips since they work the best right now.

> > > > > >

> > > > > > I am very open to anything anyone can tell me. The doc

that

> > I am

> > > > > > seeing at Duke leaves me feeling like they don't know

what

> > to do for

> > > > > > me. So if there is help out there I would love to find

it

> > before too

> > > > > > much longer.

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi ,

I am hoping that all that you need is a

dilatation but this is still not to be taken lightly. There is a risk of

perforation, so wherever you choose to have this done it is a good idea to make

sure there is a competent doctor on duty or close by because a perforation requires

emergency surgery by someone very specialized.

It is difficult when all the good doctors

are moving around the country. We used to have Dr’s Vaezi & Richter

at Cleveland

who were excellent GI doctors, but since they have left, I am not sure if I would

feel comfortable having a dilatation with any of the other GI doctors there,

but the good thing is, if there should be complications, Dr Rice is there to

fix things. Then, we have Dr Richter at Temple

in Pennsylvannia, but I don’t know who the surgeon is if something should

go wrong and the same with Dr Vaezi at Vanderbilt Clinic in Nashville…..and

then our Dr Patti is leaving San

Francisco and we will be left without our top surgeon

in this part of the country.

When we are having surgery, we look for a

highly specialized surgeon, but for a dilatation, it’s really important to

have both a specialized GI doctor who does the dilatation, as well as a

specialized surgeon standing by in case of an emergency…. I’m just

not sure where to go anymore.

Well, these are just thoughts to think

about. Who is the doctor you are seeing now? Maybe you could ask him who he

recommends.

Sandi in No CA

From: achalasia [mailto:achalasia ] On Behalf Of sforshelly2000

Sent: Sunday, January 27, 2008

10:05 AM

achalasia

Subject: Re: New here

Now when you say -ectomy... what happens after that?

Do they just

put in a peg and leave it at that? I don't think I can go that

route. Please explain what happens after that. I have not read

anything about having an ectomy for treatment.

I am going to see what the doc says after my test are done. I am

hoping it is the case of a dialtion or maybe that the wrap is too

tight. if that is the case then I can go and get it redone and out in

a day. My myotomy was done lap and I was only in the hospital over

night. I just feel hopeless due to not having many choices. I am a

nurse and know that I am not alone but feel that way since I have to

go throught this alone. My husband had even asked if it was in my

head. It was hard to to throw kniefs at him.

> > > >

> > > > Hi everyone. I am new to the boards and looking for

imformation on

> > > > what to do after the myotomy. Seems like things are now far

more

> > > > complex now than in 2004 when they found out that it was

achalasia.

> > I

> > > > just went and bought Boost this morning since I am having

such a

> > hard

> > > > time with anything that has any bulk. I have been running

on

cheetos

> > > > and cheese nips since they work the best right now.

> > > >

> > > > I am very open to anything anyone can tell me. The doc that

I

am

> > > > seeing at Duke leaves me feeling like they don't know what

to

do for

> > > > me. So if there is help out there I would love to find it

before too

> > > > much longer.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Isabella Arnold wrote:

I'll

grab my neck: aaaargh I've got a stomach ache -LOL-).

That will leave people scratching their heads. Very funny.

notan

[Guest guest]

Hmmm, just re-read my post and re-read how I wrote: "I was thought to be a bulimic (I was in my teens)". Not well written, this might lead to some confusion. What I meant to say is that I was a teenager, I didn't mean to say I was bulimic during my teens.

Just to prevent some confusion here...

Love,

Isabella

Re: New here

Now when you say -ectomy... what happens after that? Do they just put in a peg and leave it at that? I don't think I can go that route. Please explain what happens after that. I have not read anything about having an ectomy for treatment. I am going to see what the doc says after my test are done. I am hoping it is the case of a dialtion or maybe that the wrap is too tight. if that is the case then I can go and get it redone and out in a day. My myotomy was done lap and I was only in the hospital over night. I just feel hopeless due to not having many choices. I am a nurse and know that I am not alone but feel that way since I have to go throught this alone. My husband had even asked if it was in my head. It was hard to to throw kniefs at him. > > > >> > > > Hi everyone. I am new to the boards and looking for imformation on> > > > what to do after the myotomy. Seems like things are now far more> > > > complex now than in 2004 when they found out that it was achalasia.> > I> > > > just went and bought Boost this morning since I am having such a> > hard> > > > time with anything that has any bulk. I have been running on cheetos> > > > and cheese nips since they work the best right now.> > > >> > > > I am

very open to anything anyone can tell me. The doc that I am> > > > seeing at Duke leaves me feeling like they don't know what to do for> > > > me. So if there is help out there I would love to find it before too> > > > much longer.> > > >> > > > > > > >> > >> >>

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[Guest guest]

I caught your meaning Isabella. I can see why people would have

thought other wise. Justa quick update... I ate about 3/4 of a

crabcake down without too much fuss. I am learning what to eat and

supplimenting with Boost. So far my weight loss have slowed down.

I go in the morning for a gastric emptying study. I'll keep everyone

up to date. Thanks for the ideas.

> > > > >

> > > > > Hi everyone. I am new to the boards and looking for

> imformation on

> > > > > what to do after the myotomy. Seems like things are now far

> more

> > > > > complex now than in 2004 when they found out that it was

> achalasia.

> > > I

> > > > > just went and bought Boost this morning since I am having

> such a

> > > hard

> > > > > time with anything that has any bulk. I have been running

on

> cheetos

> > > > > and cheese nips since they work the best right now.

> > > > >

> > > > > I am very open to anything anyone can tell me. The doc that

I

> am

> > > > > seeing at Duke leaves me feeling like they don't know what

to

> do for

> > > > > me. So if there is help out there I would love to find it

> before too

> > > > > much longer.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

>

> Never miss a thing. Make your homepage.

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make your home page.

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[Guest guest]

Hey - We all put off stuff, as long as things are going well we don't think we have a problem and then when they start appearing we make excuses for why they are happening, but the bottom line is we are afraid and don't really want to know. I knew food coming back up was not normal but the Dr. said it was from a spasmatic esophagus so I didn't push it. I ate what I could and spit the rest out when it didn't and life went on. You did what you felt you had to at the time, take care of your parents and handle the day-to-day problems of life, and that is all any of us can do. Don't look back, you can't change anything but you can make the best of what's coming. I tell my son, just make sure that the choices you make in life are ones you can live with the rest of your life. So if you have done this be confident that all will be well. And I will give you a buzz on the 4th, if weather permits and no

problems on the Interstate we should be arriving at the Guest House mid-afternoon on the 4th and I will give you a buzz that evening. Hang tough and go with the flow. Millie in Bedfordsandragphipps <sandraphipps@...> wrote: Well everyone, here is the story. Basically, I did not take care of mebetween 2004 and now. I was supposed to go back and see Dr. Rice eachyear, but I didn't. The reasons--I lost both of my parents tosuffering deaths within a 50 week time

period (father-lung cancer;mother-liver failure). I am an only child, so I felt I could not leavethem. Then I found out I was 'married' to a serial bigamist (theinfamous Dr. Phil bigamist) see my blog at www.fightbigamy.typepad.comand read the "About" section to learn more about me there and my fightfor justice.The swallowing got worse and worse and I was hospitalized here severaltimes in 2006 and 2006 for regurgitation that would not stop. I wasmissing so much work that basically I was on a part-time schedule because of the achalasia (at this point just eating ice cream andcreamy pasta) that my company said if I did not go on disability, Iwould lose my health insurance.My friends intervened and said I must get back to Cleveland, which Idid in late October. I saw Dr. Rice and boy was he upset that I hadnot been there since August 2004. Another dilation is out of thequestion as well as a another

myotomy---I have way too much scartissue from far too many Botox procedures done here in Northern VA.Dr. Rice sent me home to lose weight and try to enjoy the holidays andthen return in early January for a consult. During Thanksgiving andChristmas, anything with any substance would not go down. I ended upin the hospital again on Dec. 26 for four days because I startedvomiting and when I start I cannot stop. Basically, I am tired ofliving like this. The 'ectomy was my decision and like Isabella, Ihave weighed everything. I need to work full time, I want to enjoyreal food again. I want to feel whole. I never want to have anotherspasm. In VA> >

>> > > Hi everyone. I am new to the boards and looking for imformation on> > > what to do after the myotomy. Seems like things are now far more> > > complex now than in 2004 when they found out that it was achalasia.> I> > > just went and bought Boost this morning since I am having such a> hard> > > time with anything that has any bulk. I have been running on cheetos> > > and cheese nips since they work the best right now.> > >> > > I am very open to anything anyone can tell me. The doc that I am> > > seeing at Duke leaves me feeling like they don't know what to do for> > > me. So if there is help out there I would love to find it before too> > > much longer.> > >> > > > > >> >>

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[Guest guest]

Hi Millie,

Thanks for your kindness. I will be arriving in Cleveland around 5 PM

on the fourth and will be staying at the InterContinental Suites

Hotel. Please call. Do you still have my phone number?

On Tuesday, I have testing all day, ending around 3 PM. Wednesday, I

am free, and Thursday is the big day.

I hope and pray it does not snow for our travel. I am flying from

Baltimore/Washington and it is only an hour flight. My son and family

will be getting to Cleveland late on the 6th.

See you soon....

In Va

> > > >

> > > > Hi everyone. I am new to the boards and looking for imformation on

> > > > what to do after the myotomy. Seems like things are now far more

> > > > complex now than in 2004 when they found out that it was

achalasia.

> > I

> > > > just went and bought Boost this morning since I am having such a

> > hard

> > > > time with anything that has any bulk. I have been running on

cheetos

> > > > and cheese nips since they work the best right now.

> > > >

> > > > I am very open to anything anyone can tell me. The doc that I am

> > > > seeing at Duke leaves me feeling like they don't know what to

do for

> > > > me. So if there is help out there I would love to find it

before too

> > > > much longer.

> > > >

> > > >

> > > >

> > >

> >

>

>

>

>

>

>

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

> Looking for last minute shopping deals? Find them fast with

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>

[Guest guest]

- I still have your number. I will be having the manometry tests and 24-Hr PH on Tuesday the 5th and then X-Ray and meet the Doctor on 6th, we will probably leave around noon on the 6th if weather permits to return home but will check in on Tuesday and Wednesday. Will your son have your phone? Millesandragphipps <sandraphipps@...> wrote: Hi Millie,Thanks for your kindness. I will be arriving in Cleveland around 5 PMon the fourth and will be staying at the InterContinental

SuitesHotel. Please call. Do you still have my phone number?On Tuesday, I have testing all day, ending around 3 PM. Wednesday, Iam free, and Thursday is the big day.I hope and pray it does not snow for our travel. I am flying fromBaltimore/Washington and it is only an hour flight. My son and familywill be getting to Cleveland late on the 6th. See you soon.... In Va> > > >> > > > Hi everyone. I am new to the boards and looking for imformation on> > > > what to do after the myotomy. Seems like things are now far more> > > > complex now than in 2004 when they found out that it wasachalasia.> > I> > > > just went and bought Boost this morning since I am having such a> >

hard> > > > time with anything that has any bulk. I have been running oncheetos> > > > and cheese nips since they work the best right now.> > > >> > > > I am very open to anything anyone can tell me. The doc that I am> > > > seeing at Duke leaves me feeling like they don't know what todo for> > > > me. So if there is help out there I would love to find itbefore too> > > > much longer.> > > >> > > > > > > >> > >> >> > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Search.>

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[Guest guest]

No, I will have my cell until Thursday morning. I will then give it to

my son just before the surgery.

Call me Monday evening. Do you have to fast that day or can we get

some soup for dinner somewhere?

-VA

> > > > >

> > > > > Hi everyone. I am new to the boards and looking for

imformation on

> > > > > what to do after the myotomy. Seems like things are now far more

> > > > > complex now than in 2004 when they found out that it was

> achalasia.

> > > I

> > > > > just went and bought Boost this morning since I am having such a

> > > hard

> > > > > time with anything that has any bulk. I have been running on

> cheetos

> > > > > and cheese nips since they work the best right now.

> > > > >

> > > > > I am very open to anything anyone can tell me. The doc that I am

> > > > > seeing at Duke leaves me feeling like they don't know what to

> do for

> > > > > me. So if there is help out there I would love to find it

> before too

> > > > > much longer.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

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

> > Looking for last minute shopping deals? Find them fast with

> Search.

> >

>

>

>

>

>

>

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

> Looking for last minute shopping deals? Find them fast with

Search.

>

[Guest guest]

- I don't have to fast Monday but I do need to not eat heavy and nothing 4 hours prior to the tests which will be okay since they are early Tuesday morning 8 and 9. I don't see why we can't get together for some soup for dinner, my husband and sister will be with me and it should be a good time to get together. Here is my cell phone 540-583-0509 we should have it on, I will try to contact you around 6 or 6:30 but call me if there is a problem or delay. See you then. Milliesandragphipps <sandraphipps@...> wrote: No, I will have my cell until Thursday morning. I will then give it tomy son just before the surgery. Call me Monday evening. Do you have to fast that day or can we getsome soup for dinner somewhere?-VA> > > > >> > > > > Hi everyone. I am new to the boards and looking forimformation on> > > > > what to do after the myotomy. Seems like things are now far more> > > > > complex now than in 2004 when they found out that it was> achalasia.> > > I> > > > > just went and bought Boost this morning since I am having such a> > > hard> > > > > time with anything that has any bulk. I have been running on> cheetos> > > > > and cheese nips since they work the best

right now.> > > > >> > > > > I am very open to anything anyone can tell me. The doc that I am> > > > > seeing at Duke leaves me feeling like they don't know what to> do for> > > > > me. So if there is help out there I would love to find it> before too> > > > > much longer.> > > > >> > > > > > > > > >> > > >> > >> > > > > > > > > > > > > > ---------------------------------> > Looking for last minute shopping deals? Find them fast with > Search.> >> > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with

Search.>

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[Guest guest]

- Welcome! Just noted that you are from South Boston, just down the road from me, I am from Bedford VA. I just had a myotomy in Dec at Cleveland Clinic, Dr. Rice. And expect to travel back for my 8 weeks check-up. Don't know much about doctors other than Rice I checked several out but went with Dr. Rice. The people on this site really know Achalasia and the doctors so listen to what they re telling you. I know I am not going to anyone locally here because I don't think they know much about this stuff. Take care and keep asking questions, have you tried milk it helped me get stuff down it seemed to relax the LES for me before the surgery. Also have you tried soft stuff like Applesauce just like after the surgery? Hang tough and find an expert Millie in Bedfordsforshelly2000

<taydrew@...> wrote: Hi everyone. I am new to the boards and looking for imformation on what to do after the myotomy. Seems like things are now far more complex now than in 2004 when they found out that it was achalasia. I just went and bought Boost this morning since I am having such a hard time with anything that has any bulk. I have been running on cheetos and cheese nips since they work the best right now. I am very open to anything anyone can tell me. The doc that I am seeing at Duke leaves me feeling like they

don't know what to do for me. So if there is help out there I would love to find it before too much longer.

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Dear ,

I wish you the best, when you mentioned the cell phone I thought of a few other things to have handy.

Chap stick, glasses or whatever you need if your eyesight is bad, I kept my glasses on into the prep room and the nurses brought them to my room after surgery, because when they prep you want to be able to see.

I took some Colace before surgery (my own idea) because things tighten up after surgery, and a nurse told me to take it years ago at some other occasion, the doctors forget or wait until it is a problem. Only Colace or something like that as it is a softener. I know... you hardly eat anything anyway, but that whole lower digestive area seems slow to start up again. If you have had children, you know what I mean.

If you have dry skin, lotion up before you go in the hospital because the air is dry and you'll itch in the hospital room.

I wished I had brought some instant coffee in my bag, if you are a coffee drinker/sipper, it is hard to find caffeine when you do get back on liquids and the caffeine withdrawal even came through the morophine, I swear. The food trays had decaf I think and seems like they said they didn't serve caffeine in rooms (but I was on some strong drugs, maybe I'm wrong.)

For the trip home, if you are on the vain side, a sports bra will be more comfortable if you usually wear and need something more definitive.

Seems like for me and others I talked to, as soon as you even thought about makeup or even looking in a mirror they kick you out of the hospital, so makeup seems absolutely useless to most. That must be the measure insurance companies use to kick you out as soon as possible... oh, she wants her blush or a hair brush... time to get her out of the hospital. And I mean, when you just start to wonder what you look like, they pull out the tubes and you're out of there.

These are probably obvious and old suggestions, but were things that I didn't take care of before. And I brought my own medications that I take all the time, one less thing for the hospital to mess up, I thought.

> > > > > >> > > > > > Hi everyone. I am new to the boards and looking for> imformation on> > > > > > what to do after the myotomy. Seems like things are now far more> > > > > > complex now than in 2004 when they found out that it was> > achalasia.> > > > I> > > > > > just went and bought Boost this morning since I am having such a> > > > hard> > > > > > time with anything that has any bulk. I have been running on> > cheetos> > > > > > and cheese nips since they work the best right now.> > > > > >> > > > > > I am very open to anything anyone can tell me. The doc that I am> > > > > > seeing at Duke leaves me feeling like they don't know what to> > do for> > > > > > me. So if there is help out there I would love to find it> > before too> > > > > > much longer.> > > > > >> > > > > > > > > > > >> > > > >> > > >> > > > > > > > > > > > > > > > > > > > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with > > Search.> > >> > > > > > > > > > > > > > ---------------------------------> > Looking for last minute shopping deals? Find them fast with > Search.> >>

[Guest guest]

Thanks, Sandy. You've given me good tips. I didn't sleep well last

night trying to think of things I needed to do before surgery. I am

blind as a bat without my glasses and that is always a concern! I had

forgotten to put Chapstick on my list too.

As for lotion, I won't be able to do that as I must bathe in an

antiseptic soap before surgery.

I am 52--vanity went by the wayside a while back!!!!

InVA

> > > > > > >

> > > > > > > Hi everyone. I am new to the boards and looking for

> > imformation on

> > > > > > > what to do after the myotomy. Seems like things are now far

> more

> > > > > > > complex now than in 2004 when they found out that it was

> > > achalasia.

> > > > > I

> > > > > > > just went and bought Boost this morning since I am having

> such a

> > > > > hard

> > > > > > > time with anything that has any bulk. I have been running on

> > > cheetos

> > > > > > > and cheese nips since they work the best right now.

> > > > > > >

> > > > > > > I am very open to anything anyone can tell me. The doc that

> I am

> > > > > > > seeing at Duke leaves me feeling like they don't know what

> to

> > > do for

> > > > > > > me. So if there is help out there I would love to find it

> > > before too

> > > > > > > much longer.

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

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

> > > > Looking for last minute shopping deals? Find them fast with

> > > Search.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Looking for last minute shopping deals? Find them fast with

> > Search.

> > >

> >

>

[Guest guest]

Hi ,

Wow, did you mistakenly type MT? I'm originally from Montana, the SE part. Jeannie is from close to Kalispell and there is another guy Jim that doesn't post anymore also close to Kalispell. I'm in CA now.

Hmmmm I think Jeannie is going to Washington, who are you seeing? I'm sure you have read the other posts and realize it is usually better to do something sooner than later, especially since you are so young. But honestly, I doubt there is anyone in MT that has much experience w/ achalasia. Jeannie has already used them up I think.

You'll find lots of support here, and a few younger ones, many of us are kind of over the hill. Some of us are over the hill and onto the next mountain range. But your age doesn't matter.

Sandy>> My name is , I'm from MT, and I was diagnosed w/achalasia in 2005 > when I was 21. Other than a barium swallow and endoscopy to diagnose > the problem, I haven't had any medical treatment yet because I've been > able to control it pretty well by limitting what I eat and taking a > magnesium supplement which has made a huge difference.> I hope I'll be able to learn more about this condition, and share with > everyone else the things that help me to deal with it. Nice to meet > you all and thank you for any answers to the many questions I'll be > posting later. >

[Guest guest]

Hi Sandy,

No, I really am from Montana. I'm in Billings, so probably close to

where you used to live. The doctor who diagnosed me actually retired

a few years ago, so I'm not currently seeing anyone. I made an

appointment with one of that doctor's associates, but cancelled it

because I found out I was pregnant and I wasn't willing to have any

possibly risky procedures. I don't think the doctor I saw had a lot

of experience with achalasia because he left me with no hope for it

at all. He told me that there was no known cause, no cure, and very

limitted treatment options. He didn't tell me that it gets worse the

longer you have it(that's a recent discovery for me), just that it

usually doesn't affect young people.

Thank you for the welcome, Sandy. I will keep you posted when I find

a doctor and decide what type of treatment to pursue.

>

>

> Hi ,

>

> Wow, did you mistakenly type MT? I'm originally from Montana, the

SE

> part. Jeannie is from close to Kalispell and there is another guy

Jim

> that doesn't post anymore also close to Kalispell. I'm in CA now.

>

> Hmmmm I think Jeannie is going to Washington, who are you seeing?

I'm

> sure you have read the other posts and realize it is usually better

to

> do something sooner than later, especially since you are so young.

But

> honestly, I doubt there is anyone in MT that has much experience w/

> achalasia. Jeannie has already used them up I think.

>

> You'll find lots of support here, and a few younger ones, many of

us are

> kind of over the hill. Some of us are over the hill and onto the

next

> mountain range. But your age doesn't matter.

>

> Sandy