here again

[Guest guest]

well here we go again...i spent 6 weeks off mtx to take care of my

elderly mother after a quad bypass......i did this because the mtx

makes me sick and makes me sleep and i needed to hear her breathing

and if she needed me...........

well...that was in march and april and now i pay for it!

My ankle is blown out.....I am again in a boot and back on more mtx

than before and predisone too......i am on crutches again...........

now of course i did good while the ss board was looking at all of my

records and got worse just after they had my hearing...........so i

sot without a job.....any money...a broken car....mom still

sick....with my back and ankles killing me....

what a year!

[Guest guest]

,

 

We share a similar history and unfortunately our swallowing ability continues in

a similar way.  I too had an HM with Rice in 2010 and I struggle with eating. 

I just had another dilation.  Its been at least 1 a year since the

proceedure.  Its frustrating because I think I'm very careful with how, what

and when I eat.  The last time I spoke with the good doctor he casually said

that the next step is an ectomy. That may be the reality I'm facing, although

I'm not ready to go there yet.  Today was a good day and its encouraging. 

Please let us know what you find out from your GI.

Santa Fe

 

________________________________

From: erin_lievens <erinl@...>

achalasia

Sent: Monday, May 21, 2012 3:52 PM

Subject: Re: Here again

 

Hi ,

I don't have any advice to give you- this is all still new to me and I haven't

had my HM yet, but I just wanted to say that I'm sorry that this is happening. I

know that there are people on here who have had trouble following their HM, so I

hope they can help you.

Best of luck to you- I hope your doctors can find a solution for you!

Take care,

>

> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years

due to the fact that I thought I was " in the clear " with this disease. In

October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice

at the Cleveland Clinic. That said, I have absolute faith and certainty that it

was performed correctly and without error and Dr Rice is arguably the best there

is.

>

> I say all of that to say that here I sit nearly 18 months later and many of my

symptoms are beginning to come back. Food has always, even before surgery, gone

into my stomach (they were not sure why the disease never progressed to

completely close my LES.) The major problem I have is that I am beginning to

have cramps and aches and some sharp pains soon after eating. Same as I have two

years ago. Eating nearly wipes me completely out and I feel that I have no

strength or energy to do anything after eating even a small amount. I have also

started to have pretty severe asthma again...(which they say is not related to

Achalasia). I never have had asthma, only when I am going through a rough patch

of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food

up to 6 hours after eating, etc.

>

> I have an appointment set up with a gastroentorologist next month at the

Cleveland Clinic, and was wondering if anyone else has experience this type of

" lapse " this soon after surgery and if so what happened. Did you have to redo

treatment, either with another Lap Heller or dilation? Did you find that it was

simply a horrible spasm that eventually went away?

>

> I am convinced that the food is actually going down into my stomach which is

puzzling to me as I still have discomfort?

>

> Any thoughts or ideas on what to discuss with the Dr would be wonderful!

>

>

>

[Guest guest]

I am a newer member of this group and read with interest all posts.  I was

diagnosed in August of 2005 at the Cleveland Clinic.  I have had 2

dilations.....no success.  Met with Dr. Rice, but to date, have done nothing

further.  I am 68 pounds lighter than the day I was diagnosed.  Now wear a

size 2.   I am so fearful to move forward with Dr. Rice....to some degree

because of the failures discussed below.

 

Could someone speak to what happens to those of us who do nothing?  (other than

getting thinner and thinner).   I have issues with almost every food/soup

etc.   About the only thing I can eat without it coming back up is Junior

Mints......a lovely diet.

 

Thanks for reading.

 

Christa

Ohio

>________________________________

> From: Ottenheimer <hmottenheimer@...>

> " achalasia " <achalasia >

>Sent: Monday, May 21, 2012 9:58 PM

>Subject: Re: Re: Here again

>

>

>

> 

>

>,

> 

>We share a similar history and unfortunately our swallowing ability continues

in a similar way.  I too had an HM with Rice in 2010 and I struggle with

eating.  I just had another dilation.  Its been at least 1 a year since the

proceedure.  Its frustrating because I think I'm very careful with how, what

and when I eat.  The last time I spoke with the good doctor he casually said

that the next step is an ectomy. That may be the reality I'm facing, although

I'm not ready to go there yet.  Today was a good day and its encouraging. 

Please let us know what you find out from your GI.

>

>Santa Fe

> 

>

>________________________________

>From: erin_lievens <erinl@...>

>achalasia

>Sent: Monday, May 21, 2012 3:52 PM

>Subject: Re: Here again

>

> 

>Hi ,

>

>I don't have any advice to give you- this is all still new to me and I haven't

had my HM yet, but I just wanted to say that I'm sorry that this is happening. I

know that there are people on here who have had trouble following their HM, so I

hope they can help you.

>

>Best of luck to you- I hope your doctors can find a solution for you!

>

>Take care,

>

>

>

>>

>> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years

due to the fact that I thought I was " in the clear " with this disease. In

October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice

at the Cleveland Clinic. That said, I have absolute faith and certainty that it

was performed correctly and without error and Dr Rice is arguably the best there

is.

>>

>> I say all of that to say that here I sit nearly 18 months later and many of

my symptoms are beginning to come back. Food has always, even before surgery,

gone into my stomach (they were not sure why the disease never progressed to

completely close my LES.) The major problem I have is that I am beginning to

have cramps and aches and some sharp pains soon after eating. Same as I have two

years ago. Eating nearly wipes me completely out and I feel that I have no

strength or energy to do anything after eating even a small amount. I have also

started to have pretty severe asthma again...(which they say is not related to

Achalasia). I never have had asthma, only when I am going through a rough patch

of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food

up to 6 hours after eating, etc.

>>

>> I have an appointment set up with a gastroentorologist next month at the

Cleveland Clinic, and was wondering if anyone else has experience this type of

" lapse " this soon after surgery and if so what happened. Did you have to redo

treatment, either with another Lap Heller or dilation? Did you find that it was

simply a horrible spasm that eventually went away?

>>

>> I am convinced that the food is actually going down into my stomach which is

puzzling to me as I still have discomfort?

>>

>> Any thoughts or ideas on what to discuss with the Dr would be wonderful!

>>

>>

>>

>

>

[Guest guest]

<Christa wrote:

<I am a newer member of this group and read with interest all posts. I was

diagnosed in <August of 2005 at the Cleveland Clinic. I have had 2

dilations.....no success. Met with Dr. <Rice, but to date, have done nothing

further. I am 68 pounds lighter than the day I was <diagnosed. Now wear a size

2. I am so fearful to move forward with Dr. Rice....to some <degree because of

the failures discussed below.

<Could someone speak to what happens to those of us who do nothing? (other than

getting <thinner and thinner). I have issues with almost every food/soup etc.

About the only thing I <can eat without it coming back up is Junior Mints......a

lovely diet.

Don´t be scared of the HM.

Statistically the successrate is 90%, that doesn´t mean that therafter you have

no symtoms left, but you are much much better of. It depends however, how

dilated your esophagus is in the meantime and what subtype of achalasia you

have.

If you do nothing, your esophgus get stretched and if you then decide to do the

HM the result is not as good.

I was operated in May 2009 and I don´t regret it, can eat everything.

I think most of the successfull operated will not write here. They forgot (will

forget),that they still have achalasia (with now nearly no symtoms).

 

a

 

 

[Guest guest]

Welcome Christa! 

 

I totally understand your concerns about all the " what if's " when it comes to

surgery of this nature, mostly the thought of what if I get worse off.  I have

had symptoms of achalasia since 1988, thats when it started.  Mine progressed

quickly to the stage that things were contantly stuck, I needed lots of liquid

to power push food down.  I also would regurg food, but at that time it was not

at every meal....I coped with it and tried telling doctors back then about my

issues, only to be told that it was " reflux, stress or I should just eat

slower " ...can you believe that??  I found this group in about 2006, that was

the first time in my life that I met another soul that could relate. 

 

In 2010 I had the HM with Dor, I had my surgery at UCLA and did my research. 

Much depends on the condition of your esophagus...the longer one waits the more

damage could be done so waiting is not always a good thing!  I researched alot,

so my main concern was finding a top notch surgeon who did this surgery with

great success and nothing less than that would I ever consider.  Also when I

read about myotomy, the biggest reason for failure seemed to the the actual

" cut " and making sure that the cut is long enough, otherwise you are back in the

same boat.  I drilled my surgeon to explain to me the length of the cut she

would use....I wanted specific's...she does a longer cut and felt that her

patients found overall good success and most had no " heartburn or need for PPI's

in the future.  My surgery thankfully went like clockwork and I am doing great

now, swallowing and eating as near normal as possible, I'm extremely glad that

it was done and done

right. 

 

This disorder does progress over time, your esophagus changes and thats when

things can get worse and surgery may not help.  Please educate yourself and

TALK to these doc's and be specific about how and what they do in surgery...then

make your decision...

 

Wishing you all the best...Dr. Rice is a good doc and so is Dr. Patti...many

more that I don't even know there names, but you must research and this group is

very helpful.

 

All the best,

 

Julee ( now from Oregon) 

 

 

________________________________

From: Christa D. Deegan <christa1110@...>

" achalasia " <achalasia >

Sent: Monday, May 21, 2012 7:12 PM

Subject: Re: Re: Here again

 

I am a newer member of this group and read with interest all posts.  I was

diagnosed in August of 2005 at the Cleveland Clinic.  I have had 2

dilations.....no success.  Met with Dr. Rice, but to date, have done nothing

further.  I am 68 pounds lighter than the day I was diagnosed.  Now wear a

size 2.   I am so fearful to move forward with Dr. Rice....to some degree

because of the failures discussed below.

 

Could someone speak to what happens to those of us who do nothing?  (other than

getting thinner and thinner).   I have issues with almost every food/soup

etc.   About the only thing I can eat without it coming back up is Junior

Mints......a lovely diet.

 

Thanks for reading.

 

Christa

Ohio

>________________________________

> From: Ottenheimer <hmottenheimer@...>

> " achalasia " <achalasia >

>Sent: Monday, May 21, 2012 9:58 PM

>Subject: Re: Re: Here again

>

>

>

> 

>

>,

> 

>We share a similar history and unfortunately our swallowing ability continues

in a similar way.  I too had an HM with Rice in 2010 and I struggle with

eating.  I just had another dilation.  Its been at least 1 a year since the

proceedure.  Its frustrating because I think I'm very careful with how, what

and when I eat.  The last time I spoke with the good doctor he casually said

that the next step is an ectomy. That may be the reality I'm facing, although

I'm not ready to go there yet.  Today was a good day and its encouraging. 

Please let us know what you find out from your GI.

>

>Santa Fe

> 

>

>________________________________

>From: erin_lievens <erinl@...>

>achalasia

>Sent: Monday, May 21, 2012 3:52 PM

>Subject: Re: Here again

>

> 

>Hi ,

>

>I don't have any advice to give you- this is all still new to me and I haven't

had my HM yet, but I just wanted to say that I'm sorry that this is happening. I

know that there are people on here who have had trouble following their HM, so I

hope they can help you.

>

>Best of luck to you- I hope your doctors can find a solution for you!

>

>Take care,

>

>

>

>>

>> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years

due to the fact that I thought I was " in the clear " with this disease. In

October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice

at the Cleveland Clinic. That said, I have absolute faith and certainty that it

was performed correctly and without error and Dr Rice is arguably the best there

is.

>>

>> I say all of that to say that here I sit nearly 18 months later and many of

my symptoms are beginning to come back. Food has always, even before surgery,

gone into my stomach (they were not sure why the disease never progressed to

completely close my LES.) The major problem I have is that I am beginning to

have cramps and aches and some sharp pains soon after eating. Same as I have two

years ago. Eating nearly wipes me completely out and I feel that I have no

strength or energy to do anything after eating even a small amount. I have also

started to have pretty severe asthma again...(which they say is not related to

Achalasia). I never have had asthma, only when I am going through a rough patch

of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food

up to 6 hours after eating, etc.

>>

>> I have an appointment set up with a gastroentorologist next month at the

Cleveland Clinic, and was wondering if anyone else has experience this type of

" lapse " this soon after surgery and if so what happened. Did you have to redo

treatment, either with another Lap Heller or dilation? Did you find that it was

simply a horrible spasm that eventually went away?

>>

>> I am convinced that the food is actually going down into my stomach which is

puzzling to me as I still have discomfort?

>>

>> Any thoughts or ideas on what to discuss with the Dr would be wonderful!

>>

>>

>>

>

>

[Guest guest]

thank you julie~

 

one more question for the group...........since the retirement of dr achkar at

the cleveland clinic, does anyone know or have a recommendation at the clinic

for a doctor?

 

thank you to all.

 

christa

>________________________________

> From: Montoya <medhelpinfo@...>

> " achalasia " <achalasia >

>Sent: Tuesday, May 22, 2012 6:12 PM

>Subject: Re: Re: Here again

>

>

>

> 

>

>Welcome Christa! 

> 

>I totally understand your concerns about all the " what if's " when it comes to

surgery of this nature, mostly the thought of what if I get worse off.  I have

had symptoms of achalasia since 1988, thats when it started.  Mine progressed

quickly to the stage that things were contantly stuck, I needed lots of liquid

to power push food down.  I also would regurg food, but at that time it was not

at every meal....I coped with it and tried telling doctors back then about my

issues, only to be told that it was " reflux, stress or I should just eat

slower " ...can you believe that??  I found this group in about 2006, that was

the first time in my life that I met another soul that could relate. 

> 

>In 2010 I had the HM with Dor, I had my surgery at UCLA and did my research. 

Much depends on the condition of your esophagus...the longer one waits the more

damage could be done so waiting is not always a good thing!  I researched alot,

so my main concern was finding a top notch surgeon who did this surgery with

great success and nothing less than that would I ever consider.  Also when I

read about myotomy, the biggest reason for failure seemed to the the actual

" cut " and making sure that the cut is long enough, otherwise you are back in the

same boat.  I drilled my surgeon to explain to me the length of the cut she

would use....I wanted specific's...she does a longer cut and felt that her

patients found overall good success and most had no " heartburn or need for PPI's

in the future.  My surgery thankfully went like clockwork and I am doing great

now, swallowing and eating as near normal as possible, I'm extremely glad that

it was done and done

>right. 

> 

>This disorder does progress over time, your esophagus changes and thats when

things can get worse and surgery may not help.  Please educate yourself and

TALK to these doc's and be specific about how and what they do in surgery...then

make your decision...

> 

>Wishing you all the best...Dr. Rice is a good doc and so is Dr. Patti...many

more that I don't even know there names, but you must research and this group is

very helpful.

> 

>All the best,

> 

>Julee ( now from Oregon) 

> 

> 

>

>

>________________________________

>From: Christa D. Deegan <christa1110@...>

> " achalasia " <achalasia >

>Sent: Monday, May 21, 2012 7:12 PM

>Subject: Re: Re: Here again

>

>

> 

>

>I am a newer member of this group and read with interest all posts.  I was

diagnosed in August of 2005 at the Cleveland Clinic.  I have had 2

dilations.....no success.  Met with Dr. Rice, but to date, have done nothing

further.  I am 68 pounds lighter than the day I was diagnosed.  Now wear a

size 2.   I am so fearful to move forward with Dr. Rice....to some degree

because of the failures discussed below.

> 

>Could someone speak to what happens to those of us who do nothing?  (other

than getting thinner and thinner).   I have issues with almost every food/soup

etc.   About the only thing I can eat without it coming back up is Junior

Mints......a lovely diet.

> 

>Thanks for reading.

> 

>Christa

>Ohio

>

>>________________________________

>> From: Ottenheimer <hmottenheimer@...>

>> " achalasia " <achalasia >

>>Sent: Monday, May 21, 2012 9:58 PM

>>Subject: Re: Re: Here again

>>

>>

>>

>> 

>>

>>,

>> 

>>We share a similar history and unfortunately our swallowing ability continues

in a similar way.  I too had an HM with Rice in 2010 and I struggle with

eating.  I just had another dilation.  Its been at least 1 a year since the

proceedure.  Its frustrating because I think I'm very careful with how, what

and when I eat.  The last time I spoke with the good doctor he casually said

that the next step is an ectomy. That may be the reality I'm facing, although

I'm not ready to go there yet.  Today was a good day and its encouraging. 

Please let us know what you find out from your GI.

>>

>>Santa Fe

>> 

>>

>>________________________________

>>From: erin_lievens <erinl@...>

>>achalasia

>>Sent: Monday, May 21, 2012 3:52 PM

>>Subject: Re: Here again

>>

>> 

>>Hi ,

>>

>>I don't have any advice to give you- this is all still new to me and I haven't

had my HM yet, but I just wanted to say that I'm sorry that this is happening. I

know that there are people on here who have had trouble following their HM, so I

hope they can help you.

>>

>>Best of luck to you- I hope your doctors can find a solution for you!

>>

>>Take care,

>>

>>

>>

>>>

>>> Hello again fellow Achalasia sufferers. I have non posted in almost 2 years

due to the fact that I thought I was " in the clear " with this disease. In

October 2010 I had a Lap Heller with a dor-fundiplication performed by Dr. Rice

at the Cleveland Clinic. That said, I have absolute faith and certainty that it

was performed correctly and without error and Dr Rice is arguably the best there

is.

>>>

>>> I say all of that to say that here I sit nearly 18 months later and many of

my symptoms are beginning to come back. Food has always, even before surgery,

gone into my stomach (they were not sure why the disease never progressed to

completely close my LES.) The major problem I have is that I am beginning to

have cramps and aches and some sharp pains soon after eating. Same as I have two

years ago. Eating nearly wipes me completely out and I feel that I have no

strength or energy to do anything after eating even a small amount. I have also

started to have pretty severe asthma again...(which they say is not related to

Achalasia). I never have had asthma, only when I am going through a rough patch

of spasms. I also have bad stomach aches, can't burp, burp and regurgitate food

up to 6 hours after eating, etc.

>>>

>>> I have an appointment set up with a gastroentorologist next month at the

Cleveland Clinic, and was wondering if anyone else has experience this type of

" lapse " this soon after surgery and if so what happened. Did you have to redo

treatment, either with another Lap Heller or dilation? Did you find that it was

simply a horrible spasm that eventually went away?

>>>

>>> I am convinced that the food is actually going down into my stomach which is

puzzling to me as I still have discomfort?

>>>

>>> Any thoughts or ideas on what to discuss with the Dr would be wonderful!

>>>

>>>

>>>

>>

>>