Re: New Member - Unique Symptoms - Any Suggestions??

[Guest guest]

Hi Barb,

How long did you suffer with issues before being diagnosed?  I had swallowing

problems for many years.  Last year was finally diagnosed and had the surgery

in

August 2010, my stomach is temperamental these days also.  My only thoughts on

this is that now after surgery the food goes so quickly into the stomach and

that causes the problems.  I have been eating smaller portions, less fats and

diary products and that seems to help me.  If I eat too much, or if I have a

high fat meal, I seem to get pains and problems.  Otherwise I am doing fine and

do not have any heartburn issues at all.  I don't experience pressure, mine is

more " colon " pain, which is extremely painful in my case, more like IBS.  I'm

trying to find the right balance and avoid too much " raw " things as well.  I

find that apples feel good in my tummy! 

Did you have any stomach issues like this before surgery? 

Julee So Calif.

________________________________

From: Barb C. <bagwoman52@...>

achalasia

Sent: Sun, March 6, 2011 2:29:58 AM

Subject: New Member - Unique Symptoms - Any Suggestions??

 

This site is wonderful, so glad I found an avenue of experiences from actual

Achalasia patients. Doctors have explained my condition but have left me with

alot of unanswered questions. I was diagnosed with A January 2010, Myotomy April

2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

Prior to surgery I woke every night choking, that has improved, my one symptom

that has. Since surgery I can only eat and drink small portions, over 8 ounces I

have alot of pain with gas, heartburn, pressure that is only relieved by laying

down(even though I was advised NOT to lay down for 3 hours after eating, this is

the only thing that provides me relief). Unfortunately I cannot lay down most of

the day so I am struggling to find a solution to live a normal life and

eat/drink without pain. Has anyone else experienced these symptoms and how have

you found relief? Currently I am trying to find the best " A " specialist in the

Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

BC

[Guest guest]

I only had mild symptoms prior to 2010. About 6 years ago I had bad chest pains,

but they subsided. About 2 years prior I started eating smaller portions, but I

was able to eat small meals at a restaurant and drink a couple glasses of

liquid. December 2009 I started waking up every night choking, went to doctor

January 2010 and he started testing, concluded I had Achalasia. Since my surgery

my meals have been small portions only, both solids and liquids. If I go out to

dinner with my husband I get a cup of soup and eat two bites of his meal and I

am done. Cannot even drink the beverage they provide. Any more food gives me so

much pain I just want to lay down, which is the only way I can get relief. I

have never experienced this kind of stomach pain before, and it is every day.

Does not make any difference what I eat, it is the amount of food I consume. I

am desperate for relief, there has to be some way to feel better. I wonder if my

surgery is my problem because of the area actually cut or what....I need to find

a doctor with the experience to help me.

Thanks for sharing.

Barb

>

> Hi Barb,

>

> How long did you suffer with issues before being diagnosed?  I had swallowing

> problems for many years.  Last year was finally diagnosed and had the surgery

in

> August 2010, my stomach is temperamental these days also.  My only thoughts

on

> this is that now after surgery the food goes so quickly into the stomach and

> that causes the problems.  I have been eating smaller portions, less fats and

> diary products and that seems to help me.  If I eat too much, or if I have a

> high fat meal, I seem to get pains and problems.  Otherwise I am doing fine

and

> do not have any heartburn issues at all.  I don't experience pressure, mine

is

> more " colon " pain, which is extremely painful in my case, more like IBS.  I'm

> trying to find the right balance and avoid too much " raw " things as well.  I

> find that apples feel good in my tummy! 

>

>

> Did you have any stomach issues like this before surgery? 

>

> Julee So Calif.

>

>

>

>

> ________________________________

> From: Barb C. <bagwoman52@...>

> achalasia

> Sent: Sun, March 6, 2011 2:29:58 AM

> Subject: New Member - Unique Symptoms - Any Suggestions??

>

>  

> This site is wonderful, so glad I found an avenue of experiences from actual

> Achalasia patients. Doctors have explained my condition but have left me with

> alot of unanswered questions. I was diagnosed with A January 2010, Myotomy

April

> 2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

> diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

> Prior to surgery I woke every night choking, that has improved, my one symptom

> that has. Since surgery I can only eat and drink small portions, over 8 ounces

I

> have alot of pain with gas, heartburn, pressure that is only relieved by

laying

> down(even though I was advised NOT to lay down for 3 hours after eating, this

is

> the only thing that provides me relief). Unfortunately I cannot lay down most

of

> the day so I am struggling to find a solution to live a normal life and

> eat/drink without pain. Has anyone else experienced these symptoms and how

have

> you found relief? Currently I am trying to find the best " A " specialist in the

> Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

> BC

>

>

>

>

>

>

>

>

[Guest guest]

Welcome, Barb.

Barb wrote:

> ...was diagnosed with dysfunctional stomach as well as my dysfunctional

esophagus. ...

You didn't say in what way the stomach is officially dysfunctional. Was

that delayed emptying or gastroparesis?

After a myotomy, especially if there was a fundoplication, the stomach

can become full faster than it did before. This can cause some pain.

Also, because of scarring and adhesions from the surgery that area of

the body near the myotomy may feel some discomfort when the stomach

tries to expand. These things typically become less of a problem over

time and repeated stretching. If the stomach does not empty as fast as

it should that also can reduce the amount of food you can eat before it

becomes full. Sounds like it would be good to find out though just what

the reason is. The only thing I can think of is to eat thing that the

stomach can absorb or pass easily. You could also check out some diets

for gastroparesis.

See, list of gastroparesis+diet sites:

http://www.google.com/search?q=gastroparesis+diet

notan

[Guest guest]

Notan,

You have provided me with more insight to my condition than any doctor I have

spoken with. My stomach does not like food, it empties too quickly, doctor

explained that instead of the delayed emptying, my stomach nerves push food into

my intestines very quickly. Diagnosis: Gastric Hyperalgesia, cannot rule out

vagal dysfunction. No direction as to my diet recommendations or foods to avoid.

I have been trying to do research on my own and trying to find a doctor to give

me more guidance. Then I found this support group and hope other A patients can

give me some ideas for what has worked for them or any posts from others. I did

some research on the web link you attached. Thank you for sharing.

Barb

> > ...was diagnosed with dysfunctional stomach as well as my dysfunctional

esophagus. ...

>

> You didn't say in what way the stomach is officially dysfunctional. Was

> that delayed emptying or gastroparesis?

>

> After a myotomy, especially if there was a fundoplication, the stomach

> can become full faster than it did before. This can cause some pain.

> Also, because of scarring and adhesions from the surgery that area of

> the body near the myotomy may feel some discomfort when the stomach

> tries to expand. These things typically become less of a problem over

> time and repeated stretching. If the stomach does not empty as fast as

> it should that also can reduce the amount of food you can eat before it

> becomes full. Sounds like it would be good to find out though just what

> the reason is. The only thing I can think of is to eat thing that the

> stomach can absorb or pass easily. You could also check out some diets

> for gastroparesis.

>

> See, list of gastroparesis+diet sites:

> http://www.google.com/search?q=gastroparesis+diet

>

> notan

>

[Guest guest]

Barb wrote:

> ... my stomach nerves push food into my intestines very quickly. Diagnosis:

Gastric Hyperalgesia, ...

So, you have the opposite of delayed emptying or gastroparesis. Often

when there is damage to the vagus nerve you get those. Sounds like you

have what we call here dumping (dumping syndrome). Hyperalgesia is an

increased sensitivity to pain. In your case it may simply mean that the

new configuration of the stomach, fundoplication and myotomy, make it

more sensitive to the stretching of the stomach that eating produces.

That may stimulate the gastric nerves causing it to empty faster, dump.

You may be interested in diets for dumping.

See:

http://www.google.com/search?q=dumping+syndrome+diet

notan

[Guest guest]

Notan,

Thank you for your explanation. To clear my confusion, if there is vagus nerve

damage a patient usually has delayed emptying or gastroparesis? If so, not sure

whey doctor from Mayo explained my symptoms were from my stomach emptying too

fast and then writes a note that he cannot rule out vagus dysfunction.

I have been confused since my diagnosis and surgery because I get conflicting

remarks from different doctors. If they would agree I would know better how to

improve my medical situation.

Your comments have helped me and I hope to improve my tolerance for food through

suggestions from your web links. Thanks alot!!

If you think of anything else please share. This has been a long and complicated

illness.

Barb

> > ... my stomach nerves push food into my intestines very quickly. Diagnosis:

Gastric Hyperalgesia, ...

>

> So, you have the opposite of delayed emptying or gastroparesis. Often

> when there is damage to the vagus nerve you get those. Sounds like you

> have what we call here dumping (dumping syndrome). Hyperalgesia is an

> increased sensitivity to pain. In your case it may simply mean that the

> new configuration of the stomach, fundoplication and myotomy, make it

> more sensitive to the stretching of the stomach that eating produces.

> That may stimulate the gastric nerves causing it to empty faster, dump.

>

> You may be interested in diets for dumping.

> See:

> http://www.google.com/search?q=dumping+syndrome+diet

>

> notan

>

[Guest guest]

Barb,

     I've not been diagnosed with A but with esophageal spasms ever since my

fundiplication & hiatal hernia surgery on Oct 26, 2009.  I am also unable to

eat normal portions or I end up in pain a few hours later.  What would be

considered " too much " food for me is not much to other people.  I experience

what acts like chest pains & they are very painful.  I was just at the

specialist & they have increased my acid reflux medicine.  I am also going to

have a ph test at the end of May to determine if in fact I have acid in my

esophagus. 

 

Westgerdes

From: Barb C. <bagwoman52@...>

Subject: Re: New Member - Unique Symptoms - Any Suggestions??

achalasia

Date: Monday, March 7, 2011, 8:09 PM

 

I only had mild symptoms prior to 2010. About 6 years ago I had bad chest pains,

but they subsided. About 2 years prior I started eating smaller portions, but I

was able to eat small meals at a restaurant and drink a couple glasses of

liquid. December 2009 I started waking up every night choking, went to doctor

January 2010 and he started testing, concluded I had Achalasia. Since my surgery

my meals have been small portions only, both solids and liquids. If I go out to

dinner with my husband I get a cup of soup and eat two bites of his meal and I

am done. Cannot even drink the beverage they provide. Any more food gives me so

much pain I just want to lay down, which is the only way I can get relief. I

have never experienced this kind of stomach pain before, and it is every day.

Does not make any difference what I eat, it is the amount of food I consume. I

am desperate for relief, there has to be some way to feel better. I wonder if my

surgery is my

problem because of the area actually cut or what....I need to find a doctor

with the experience to help me.

Thanks for sharing.

Barb

>

> Hi Barb,

>

> How long did you suffer with issues before being diagnosed?  I had

swallowing

> problems for many years.  Last year was finally diagnosed and had the

surgery in

> August 2010, my stomach is temperamental these days also.  My only thoughts

on

> this is that now after surgery the food goes so quickly into the stomach and

> that causes the problems.  I have been eating smaller portions, less fats

and

> diary products and that seems to help me.  If I eat too much, or if I have

a

> high fat meal, I seem to get pains and problems.  Otherwise I am doing fine

and

> do not have any heartburn issues at all.  I don't experience pressure, mine

is

> more " colon " pain, which is extremely painful in my case, more like IBS. 

I'm

> trying to find the right balance and avoid too much " raw " things as well. 

I

> find that apples feel good in my tummy! 

>

>

> Did you have any stomach issues like this before surgery? 

>

> Julee So Calif.

>

>

>

>

> ________________________________

> From: Barb C. <bagwoman52@...>

> achalasia

> Sent: Sun, March 6, 2011 2:29:58 AM

> Subject: New Member - Unique Symptoms - Any Suggestions??

>

>  

> This site is wonderful, so glad I found an avenue of experiences from actual

> Achalasia patients. Doctors have explained my condition but have left me with

> alot of unanswered questions. I was diagnosed with A January 2010, Myotomy

April

> 2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

> diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

> Prior to surgery I woke every night choking, that has improved, my one symptom

> that has. Since surgery I can only eat and drink small portions, over 8 ounces

I

> have alot of pain with gas, heartburn, pressure that is only relieved by

laying

> down(even though I was advised NOT to lay down for 3 hours after eating, this

is

> the only thing that provides me relief). Unfortunately I cannot lay down most

of

> the day so I am struggling to find a solution to live a normal life and

> eat/drink without pain. Has anyone else experienced these symptoms and how

have

> you found relief? Currently I am trying to find the best " A " specialist in the

> Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

> BC

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Could you please mention the name of the 'Acid Reflux Medicine'? Does it help?

Regards

Hassaan

achalasia

From: sara4894@...

Date: Sun, 3 Apr 2011 11:56:43 -0700

Subject: Re: Re: New Member - Unique Symptoms - Any Suggestions??

Barb,

I've not been diagnosed with A but with esophageal spasms ever since my

fundiplication & hiatal hernia surgery on Oct 26, 2009. I am also unable to eat

normal portions or I end up in pain a few hours later. What would be considered

" too much " food for me is not much to other people. I experience what acts like

chest pains & they are very painful. I was just at the specialist & they have

increased my acid reflux medicine. I am also going to have a ph test at the end

of May to determine if in fact I have acid in my esophagus.

Westgerdes

From: Barb C. <bagwoman52@...>

Subject: Re: New Member - Unique Symptoms - Any Suggestions??

achalasia

Date: Monday, March 7, 2011, 8:09 PM

I only had mild symptoms prior to 2010. About 6 years ago I had bad chest pains,

but they subsided. About 2 years prior I started eating smaller portions, but I

was able to eat small meals at a restaurant and drink a couple glasses of

liquid. December 2009 I started waking up every night choking, went to doctor

January 2010 and he started testing, concluded I had Achalasia. Since my surgery

my meals have been small portions only, both solids and liquids. If I go out to

dinner with my husband I get a cup of soup and eat two bites of his meal and I

am done. Cannot even drink the beverage they provide. Any more food gives me so

much pain I just want to lay down, which is the only way I can get relief. I

have never experienced this kind of stomach pain before, and it is every day.

Does not make any difference what I eat, it is the amount of food I consume. I

am desperate for relief, there has to be some way to feel better. I wonder if my

surgery is my

problem because of the area actually cut or what....I need to find a doctor with

the experience to help me.

Thanks for sharing.

Barb

>

> Hi Barb,

>

> How long did you suffer with issues before being diagnosed? I had swallowing

> problems for many years. Last year was finally diagnosed and had the surgery

in

> August 2010, my stomach is temperamental these days also. My only thoughts

on

> this is that now after surgery the food goes so quickly into the stomach and

> that causes the problems. I have been eating smaller portions, less fats and

> diary products and that seems to help me. If I eat too much, or if I have a

> high fat meal, I seem to get pains and problems. Otherwise I am doing fine

and

> do not have any heartburn issues at all. I don't experience pressure, mine

is

> more " colon " pain, which is extremely painful in my case, more like IBS. I'm

> trying to find the right balance and avoid too much " raw " things as well. I

> find that apples feel good in my tummy!Â

>

>

> Did you have any stomach issues like this before surgery?Â

>

> Julee So Calif.

>

>

>

>

> ________________________________

> From: Barb C. <bagwoman52@...>

> achalasia

> Sent: Sun, March 6, 2011 2:29:58 AM

> Subject: New Member - Unique Symptoms - Any Suggestions??

>

> Â

> This site is wonderful, so glad I found an avenue of experiences from actual

> Achalasia patients. Doctors have explained my condition but have left me with

> alot of unanswered questions. I was diagnosed with A January 2010, Myotomy

April

> 2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

> diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

> Prior to surgery I woke every night choking, that has improved, my one symptom

> that has. Since surgery I can only eat and drink small portions, over 8 ounces

I

> have alot of pain with gas, heartburn, pressure that is only relieved by

laying

> down(even though I was advised NOT to lay down for 3 hours after eating, this

is

> the only thing that provides me relief). Unfortunately I cannot lay down most

of

> the day so I am struggling to find a solution to live a normal life and

> eat/drink without pain. Has anyone else experienced these symptoms and how

have

> you found relief? Currently I am trying to find the best " A " specialist in the

> Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

> BC

>

>

>

>

>

>

>

>

[Guest guest]

Hassaan,

     I am taking omeprezole & no, I don't believe that it is helping.  In fact,

I seem to be having more " heartburn " than before.  I am just a medical mystery,

lol.

 

From: Barb C. <bagwoman52@...>

Subject: Re: New Member - Unique Symptoms - Any Suggestions??

achalasia

Date: Monday, March 7, 2011, 8:09 PM

 

I only had mild symptoms prior to 2010. About 6 years ago I had bad chest pains,

but they subsided. About 2 years prior I started eating smaller portions, but I

was able to eat small meals at a restaurant and drink a couple glasses of

liquid. December 2009 I started waking up every night choking, went to doctor

January 2010 and he started testing, concluded I had Achalasia. Since my surgery

my meals have been small portions only, both solids and liquids. If I go out to

dinner with my husband I get a cup of soup and eat two bites of his meal and I

am done. Cannot even drink the beverage they provide. Any more food gives me so

much pain I just want to lay down, which is the only way I can get relief. I

have never experienced this kind of stomach pain before, and it is every day.

Does not make any difference what I eat, it is the amount of food I consume. I

am desperate for relief, there has to be some way to feel better. I wonder if my

surgery is my

problem because of the area actually cut or what....I need to find a doctor with

the experience to help me.

Thanks for sharing.

Barb

>

> Hi Barb,

>

> How long did you suffer with issues before being diagnosed?  I had swallowing

> problems for many years.  Last year was finally diagnosed and had the surgery

in

> August 2010, my stomach is temperamental these days also.  My only thoughts

on

> this is that now after surgery the food goes so quickly into the stomach and

> that causes the problems.  I have been eating smaller portions, less fats and

> diary products and that seems to help me.  If I eat too much, or if I have a

> high fat meal, I seem to get pains and problems.  Otherwise I am doing fine

and

> do not have any heartburn issues at all.  I don't experience pressure, mine

is

> more " colon " pain, which is extremely painful in my case, more like IBS.  I'm

> trying to find the right balance and avoid too much " raw " things as well.  I

> find that apples feel good in my tummy! 

>

>

> Did you have any stomach issues like this before surgery? 

>

> Julee So Calif.

>

>

>

>

> ________________________________

> From: Barb C. <bagwoman52@...>

> achalasia

> Sent: Sun, March 6, 2011 2:29:58 AM

> Subject: New Member - Unique Symptoms - Any Suggestions??

>

>  

> This site is wonderful, so glad I found an avenue of experiences from actual

> Achalasia patients. Doctors have explained my condition but have left me with

> alot of unanswered questions. I was diagnosed with A January 2010, Myotomy

April

> 2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

> diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

> Prior to surgery I woke every night choking, that has improved, my one symptom

> that has. Since surgery I can only eat and drink small portions, over 8 ounces

I

> have alot of pain with gas, heartburn, pressure that is only relieved by

laying

> down(even though I was advised NOT to lay down for 3 hours after eating, this

is

> the only thing that provides me relief). Unfortunately I cannot lay down most

of

> the day so I am struggling to find a solution to live a normal life and

> eat/drink without pain. Has anyone else experienced these symptoms and how

have

> you found relief? Currently I am trying to find the best " A " specialist in the

> Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

> BC

>

>

>

>

>

>

>

>

[Guest guest]

wrote:

> I am taking omeprezole & no, I don't believe that it is helping. In

> fact, I seem to be having more " heartburn " than before. I am just a

> medical mystery, lol.

I noticed that you put " heartburn " in quote marks. I assume you have

some doubts that it is heartburn. Do they actually know if you have

reflux? The pain may only seem like heartburn.

notan

[Guest guest]

,

I am taking omeprezole also and I do not feel like it is helping at all. I have

heartburn, indigestion, gas, bloating and feel miserable after eating, can only

eat and drink small portions. My stomach empties too quickly. I am going to a

new doctor who is suppose to be a specialist in this area, scheduled for some

tests in May, hope he finds a solution so I can eat and maintain my weight now,

after losing 33 pounds. It is a struggle every day to try to eat enough to not

lose any more weight and drink enough not to become dehydrated. I thought the

myotomy would help me, it has made me worse. This site is correct, find the

BEST, MOST EXPERIENCED surgeon. Mine claimed to know what to do and experience,

but I would travel many miles for the best if I had a chance to redo. Good luck

to you. My doctor says I am a complicated patient, lucky me to have this rare

illness with rare complications.

Barb

> >

> > Hi Barb,

> >

> > How long did you suffer with issues before being diagnosed?  I had

swallowing

> > problems for many years.  Last year was finally diagnosed and had the

surgery in

> > August 2010, my stomach is temperamental these days also.  My only thoughts

on

> > this is that now after surgery the food goes so quickly into the stomach and

> > that causes the problems.  I have been eating smaller portions, less fats

and

> > diary products and that seems to help me.  If I eat too much, or if I have

a

> > high fat meal, I seem to get pains and problems.  Otherwise I am doing fine

and

> > do not have any heartburn issues at all.  I don't experience pressure, mine

is

> > more " colon " pain, which is extremely painful in my case, more like IBS. 

I'm

> > trying to find the right balance and avoid too much " raw " things as well. 

I

> > find that apples feel good in my tummy! 

> >

> >

> > Did you have any stomach issues like this before surgery? 

> >

> > Julee So Calif.

> >

> >

> >

> >

> > ________________________________

> > From: Barb C. <bagwoman52@>

> > achalasia

> > Sent: Sun, March 6, 2011 2:29:58 AM

> > Subject: New Member - Unique Symptoms - Any Suggestions??

> >

> >  

> > This site is wonderful, so glad I found an avenue of experiences from actual

> > Achalasia patients. Doctors have explained my condition but have left me

with

> > alot of unanswered questions. I was diagnosed with A January 2010, Myotomy

April

> > 2010, 2nd manomatry with balloon dilation November 2010. January 2011 was

> > diagnosed with dysfunctional stomach as well as my dysfunctional esophagus.

> > Prior to surgery I woke every night choking, that has improved, my one

symptom

> > that has. Since surgery I can only eat and drink small portions, over 8

ounces I

> > have alot of pain with gas, heartburn, pressure that is only relieved by

laying

> > down(even though I was advised NOT to lay down for 3 hours after eating,

this is

> > the only thing that provides me relief). Unfortunately I cannot lay down

most of

> > the day so I am struggling to find a solution to live a normal life and

> > eat/drink without pain. Has anyone else experienced these symptoms and how

have

> > you found relief? Currently I am trying to find the best " A " specialist in

the

> > Philadelphia/Baltimore area. Any recommendations? Thanks for sharing.

> > BC

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I suffered from acid reflux for approx 10 yrs before having fundaplication &

hiatal hernia surgery.  I don't believe I ever felt heartburn in all those

years.  I would suddenly be hit with excrutiating pain that several times sent

me to the e.r. for a gi-cocktail.  Since the surgery, I have a burning in my

chest & throat that comes & goes like the wind.  The specialist is treating me

for esophageal spasms with a heart medicine & acid reflux meds.  I explained to

the doctor that I can't for sure say what I'm feeling is heartburn because I

never felt it before my surgery.  He explained that my reflux was so bad that

it had killed the nerves in my esophagus.  Now, whatever is coming up, is

affecting new nerves & presenting itself as chest pain.  If things start to get

bad, I actually have pain in my right jaw & right temple area.  I am having a

ph test inserted on May 31 that will hopefully confirm or deny the presence of

acid.  I'm just sad that

this $30,000.00 + surgery did not fix me, only caused more problems.

 

> I am taking omeprezole & no, I don't believe that it is helping. In

> fact, I seem to be having more " heartburn " than before. I am just a

> medical mystery, lol.

I noticed that you put " heartburn " in quote marks. I assume you have

some doubts that it is heartburn. Do they actually know if you have

reflux? The pain may only seem like heartburn.

notan

[Guest guest]

Ahh , I'm sorry your surgery hasn't worked out so well, I haven't had

surgery myself, my I do suffer from the spasms you talk about. Mine almost

always start in my chest or ears, as well as my jaw. I have found that if I

drink anything (I constantly carry around a water bottle), it goes away fairly

quickly. I used to suffer through the whole thing before I discovered this, so

hopefully it will help you as well.

Jen

________________________________

From: Westerdes <sara4894@...>

achalasia

Sent: Sun, April 10, 2011 7:04:59 AM

Subject: Re: Re: New Member - Unique Symptoms - Any Suggestions??

I suffered from acid reflux for approx 10 yrs before having fundaplication &

hiatal hernia surgery. I don't believe I ever felt heartburn in all those

years. I would suddenly be hit with excrutiating pain that several times sent

me to the e.r. for a gi-cocktail. Since the surgery, I have a burning in my

chest & throat that comes & goes like the wind. The specialist is treating me

for esophageal spasms with a heart medicine & acid reflux meds. I explained to

the doctor that I can't for sure say what I'm feeling is heartburn because I

never felt it before my surgery. He explained that my reflux was so bad that it

had killed the nerves in my esophagus. Now, whatever is coming up, is affecting

new nerves & presenting itself as chest pain. If things start to get bad, I

actually have pain in my right jaw & right temple area. I am having a ph test

inserted on May 31 that will hopefully confirm or deny the presence of acid.

I'm just sad that

this $30,000.00 + surgery did not fix me, only caused more problems.

> I am taking omeprezole & no, I don't believe that it is helping. In

> fact, I seem to be having more " heartburn " than before. I am just a

> medical mystery, lol.

I noticed that you put " heartburn " in quote marks. I assume you have

some doubts that it is heartburn. Do they actually know if you have

reflux? The pain may only seem like heartburn.

notan

[Guest guest]

wrote:

>

> I suffered from acid reflux for approx 10 yrs before having

> fundaplication & hiatal hernia surgery. I don't believe I ever felt

> heartburn in all those years.

>

You said in another message that you have not been diagnosed with

achalasia but that you have esophageal spasm. Did you ever have a

manometry test? Have you ever had a pH test before? I am guessing that

without a diagnosis of achalasia that they did not do a myotomy with the

fundoplication and hernia surgery. If you never had heartburn but did

have spasm pain you could have had a motility problem before the surgery

and adding a fundoplication without a myotomy to it may have been a

mistake. But if they did a manometry test before the surgery then maybe

that was not the case or they chose a partial fundoplication instead of

a full one based on the results of the test. Still another manometry

test now may be good too. If the fundoplication is a problem a

dilatation may be the answer to the swallowing problems, of a surgery to

redo it or take it down may be in order. The use part of the stomach to

make the fundoplication which means the stomach is effectively smaller

after the surgery. This not normally a problem for long because the

stomach can stretch with use. Scars, adhesions and fibrosis from

surgery can cause pain when the stomach is being distended, causing a

quick somewhat painful full feeling instead of just full, which is

something else to look into.

> He explained that my reflux was so bad that it had killed the nerves

> in my esophagus.

>

This explanation seems too convenient even if it may be true. I would

want the theory tested. The pH test will help to do that. You want

results not excuses based on guesses.

See also:

Value of preoperative esophageal function studies before laparoscopic

antireflux surgery.

http://www.ncbi.nlm.nih.gov/pubmed/21424193

" Obstructive LES pathophysiology was noted in 2.5% (achalasia in 1%;

incomplete LES relaxation in 1.5%), and significant esophageal body

hypomotility in 4.5% (aperistalsis in 3.2%; severe hypomotility in 1.3%)

of the subjects. Evidence of GERD was absent in 23.9% of the subjects.

Spastic disorders were more frequent in the absence of GERD (43.9% vs.

23.1% with GERD; p < 0.0001), whereas hypomotility and normal patterns

were more common with GERD. "

Laparoscopic antireflux surgery for gastroesophageal reflux disease:

experience with 668 laparoscopic antireflux procedures.

http://www.ncbi.nlm.nih.gov/pubmed/12458385

" Nissen fundoplications in patients with normal esophageal motility, 24%

laparoscopic 270 degrees Toupet partial fundoplications in patients with

poor esophageal motility or severely disordered peristalsis). Patients

with achalasia were excluded from analysis. "

Achalasia developing years after surgery for reflux disease: case

reports, laparoscopic treatment, and review of achalasia syndromes

following antireflux surgery.

http://www.ncbi.nlm.nih.gov/pubmed/11307099

" In type 1, primary achalasia is misdiagnosed as GERD and inappropriate

antireflux surgery causes worsening dysphagia immediately after surgery

without any symptom-free interval. In type 2, secondary iatrogenic

achalasia is seen early after antireflux surgery and is characterized by

the presence of stenosis and scar formation at the site of the fundic

wrap. Although the motility studies resemble achalasia, the repair needs

only to be taken down and refashioned when there is no response to

balloon dilatation. In type 3, illustrated by the case reports, primary

achalasia follows antireflux surgery after a significant symptom-free

interval. "

(That is about achalasia but it could have also include other motility

disorders.)

Iatrogenic achalasia. A case series.

http://www.ncbi.nlm.nih.gov/pubmed/7769210

" This achalasia-like picture appears to be the result of a tight

antireflux repair that impairs the ability of the lower esophageal

sphincter to completely relax, creating a functional obstruction with

proximal dilation and stasis. "

(Note the term " achalasia-like " ).

notan

[Guest guest]

I too haven't had surgery but suffer from spasms. Mine usually start in my

right side then radiate to the jaw and ears. Drinking water usually stops

the pain. These spasms are so bad that they make me nauseous if I don't

drink something as soon as they start.

S

-- Re: Re: New Member - Unique Symptoms - Any

Suggestions??

I suffered from acid reflux for approx 10 yrs before having fundaplication &

hiatal hernia surgery. I don't believe I ever felt heartburn in all those

years. I would suddenly be hit with excrutiating pain that several times

sent

me to the e.r. for a gi-cocktail. Since the surgery, I have a burning in my

chest & throat that comes & goes like the wind. The specialist is treating

me

for esophageal spasms with a heart medicine & acid reflux meds. I explained

to

the doctor that I can't for sure say what I'm feeling is heartburn because I

never felt it before my surgery. He explained that my reflux was so bad

that it

had killed the nerves in my esophagus. Now, whatever is coming up, is

affecting

new nerves & presenting itself as chest pain. If things start to get bad, I

actually have pain in my right jaw & right temple area. I am having a ph

test

inserted on May 31 that will hopefully confirm or deny the presence of acid.

I'm just sad that

this $30,000.00 + surgery did not fix me, only caused more problems.

> I am taking omeprezole & no, I don't believe that it is helping. In

> fact, I seem to be having more " heartburn " than before. I am just a

> medical mystery, lol.

I noticed that you put " heartburn " in quote marks. I assume you have

some doubts that it is heartburn. Do they actually know if you have

reflux? The pain may only seem like heartburn.

notan

[Guest guest]

Notan,

     I had a dialation done I think in February & it was found that the opening

of my esophagus was smaller than it should be.  There was no manometry done

until May following my surgery.  I had continued to have problems & did some

research myself which is when I found out about Achalasia.  That doctor (my

surgeon Dr L.) said it comfirmed esophageal spasms & put me on medication for

same.  I went to Florida in June & suffered several spasms while there.  I was

able to see Dr L. & he was at a loss.  I was referred to the Cleveland Clinic. 

The doctor I saw there was very arrogant.  He did perform another manometry & a

barium swallow test.  I waited 3 weeks before any results which came as a letter

addressed to Dr L & me as a carbon copy.  The letter stated that he did not find

anything on the manometry & that he felt my pain was " pre-operative " which

obviously means he felt the pain was from something before my surgery.  I didn't

buy this

answer because before my surgery I didn't have pain everyday but now was.  I

started seeing my PCP for help.  She tried a couple of acid reflux medicines but

they didn't work either.  She then referred me to OSU which is where I am

doctoring now.  My current specialist did mention another manometry the last

time I was there & scheduled my first ever ph test.

     My surgery consisted of a full wrap & hiatal hernia repair.  As far as

swallowing goes, I don't have a problem very often & it's nothing in particular

that seems to get stuck, sometimes even liquid gives me fits.  I did end up

loosing 30 lbs after my surgery & Dr L could not explain why so much.  Can't say

I'm unhappy about the weight loss though, LOL.  Also, no one has been able to

explain why I have had diarrhea/loose stool ever since my surgery.  I had a

colonoscopy a few years before surgery to check for IBS because of problems but

the test came back negative.  My IBS symptoms have increased greatly since my

surgery & like my pain, not one thing seems to specifically cause it.  I may

have mentioned this but the only thing I have found that will cause my spasms is

" overeating " .  I can't eat 3 meals a day or I end up in pain.  I don't usually

eat 2 meals in a row or eat them too close together.  I am currently at work &

sitting here

with pain in my chest that is also in my right shoulder.  The fear of a heart

attack sits in my mind, the fear that I will be having one & won't realize it. 

I'm not under any stress so I know it's not that.  I just want answers. 

 

>

> I suffered from acid reflux for approx 10 yrs before having

> fundaplication & hiatal hernia surgery. I don't believe I ever felt

> heartburn in all those years.

>

You said in another message that you have not been diagnosed with

achalasia but that you have esophageal spasm. Did you ever have a

manometry test? Have you ever had a pH test before? I am guessing that

without a diagnosis of achalasia that they did not do a myotomy with the

fundoplication and hernia surgery. If you never had heartburn but did

have spasm pain you could have had a motility problem before the surgery

and adding a fundoplication without a myotomy to it may have been a

mistake. But if they did a manometry test before the surgery then maybe

that was not the case or they chose a partial fundoplication instead of

a full one based on the results of the test. Still another manometry

test now may be good too. If the fundoplication is a problem a

dilatation may be the answer to the swallowing problems, of a surgery to

redo it or take it down may be in order. The use part of the stomach to

make the fundoplication which means the stomach is effectively smaller

after the surgery. This not normally a problem for long because the

stomach can stretch with use. Scars, adhesions and fibrosis from

surgery can cause pain when the stomach is being distended, causing a

quick somewhat painful full feeling instead of just full, which is

something else to look into.

> He explained that my reflux was so bad that it had killed the nerves

> in my esophagus.

>

This explanation seems too convenient even if it may be true. I would

want the theory tested. The pH test will help to do that. You want

results not excuses based on guesses.

[Guest guest]

,

I can't comment on all of your symptoms but I can comment on the IBS symptoms.

I too had a heller myotomy and partial wrap back in Oct 2010, performed by Dr.

L. Its been 6 months and I still have symtoms of IBS or " dumping " . I find that

its triggered by dairy and sugar products. So I try to avoid those or just eat a

meal with protein before I have any dairy or sugar. This has been helping.

I hope that you can find some triggers to your symmptoms and then maybe

eliminating those things from your diet may help to improve the situation.

Hoping for the best

Cara

> >

> > I suffered from acid reflux for approx 10 yrs before having

> > fundaplication & hiatal hernia surgery. I don't believe I ever felt

> > heartburn in all those years.

> >

>

> You said in another message that you have not been diagnosed with

> achalasia but that you have esophageal spasm. Did you ever have a

> manometry test? Have you ever had a pH test before? I am guessing that

> without a diagnosis of achalasia that they did not do a myotomy with the

> fundoplication and hernia surgery. If you never had heartburn but did

> have spasm pain you could have had a motility problem before the surgery

> and adding a fundoplication without a myotomy to it may have been a

> mistake. But if they did a manometry test before the surgery then maybe

> that was not the case or they chose a partial fundoplication instead of

> a full one based on the results of the test. Still another manometry

> test now may be good too. If the fundoplication is a problem a

> dilatation may be the answer to the swallowing problems, of a surgery to

> redo it or take it down may be in order. The use part of the stomach to

> make the fundoplication which means the stomach is effectively smaller

> after the surgery. This not normally a problem for long because the

> stomach can stretch with use. Scars, adhesions and fibrosis from

> surgery can cause pain when the stomach is being distended, causing a

> quick somewhat painful full feeling instead of just full, which is

> something else to look into.

>

> > He explained that my reflux was so bad that it had killed the nerves

> > in my esophagus.

> >

>

> This explanation seems too convenient even if it may be true. I would

> want the theory tested. The pH test will help to do that. You want

> results not excuses based on guesses.

>

>

>

>

[Guest guest]

, your message is complex. There seems to be a lot of different

things to address.

wrote:

>

> I had a dialation done I think in February & it was found that the

> opening of my esophagus was smaller than it should be.

>

If so, that could be a stricture that causes food to hang up. You may

not even feel that happen. I think some of us only feel the food when it

backs up to where we choke. The other thing a stricture can do is cause

distention because of the pressure from the food trying to get through.

Distention stimulates the nerves. This may result in pain or spasms

which also cause pain. So, the question is, did the dilatation take care

of the stricture?

> There was no manometry done until May following my surgery.

>

Dr. L did this surgery? Is this the famous doctor L or another?

> ... That doctor (my surgeon Dr L.) said it comfirmed esophageal spasms

> & put me on medication for same.

>

Did he tell you any details about the spasms? How strong or how much of

the esophagus? Was it standard or high resolution manometry?

> I was referred to the Cleveland Clinic. The doctor I saw there was

> very arrogant.

>

You are not the fist to say that.

> He did perform another manometry & a barium swallow test. ... The

> letter stated that he did not find anything on the manometry & that he

> felt my pain was " pre-operative " which obviously means he felt the

> pain was from something before my surgery.

>

Spasms can come and go. You may have been having a good day. Did you

feel any spasms during the test? I don't see how a manometry could rule

out all causes of surgery related pain. Adhesions causing pain is not

uncommon after surgery. I do not believe that would be detectable by a

manometry. What did he say about the barium?

> She tried a couple of acid reflux medicines but they didn't work

> either.

>

Sometimes they help. It could be you need more. The pH test will help

answer that.

> My current specialist did mention another manometry the last time I

> was there & scheduled my first ever ph test.

>

If you get another manometry try to get a high resolution one.

> My surgery consisted of a full wrap & hiatal hernia repair.

>

If there is a motility problem, and spasms can be a motility problem,

then the full wrap may be too much. The barium should have indicated

that though. Again, maybe not if you were having a good day.

> As far as swallowing goes, I don't have a problem very often & it's

> nothing in particular that seems to get stuck, sometimes even liquid

> gives me fits.

>

Again, if things are getting stuck down deep then you may not notice a

problem swallowing until you have swallowed enough to backup. At other

times you may be having things stick higher up in a spasm. In cases like

this things don't have to get stuck at the same place, or feel the same

when they do get stuck.

> ... Also, no one has been able to explain why I have had

> diarrhea/loose stool ever since my surgery.

>

Sometimes a wrap will lead to dumping syndrome. It is all to common in

children but not so common in adults. Have you tried the tricks for

avoiding dumping?

> ... I may have mentioned this but the only thing I have found that

> will cause my spasms is " overeating " .

>

Fundoplication can also cause hypersensitivity and impaired gastric

accommodation. In other words what would take a lot to make others hurt

only takes a little for you. Acid reflux can cause similar problems in

the esophagus.

> I can't eat 3 meals a day or I end up in pain. I don't usually eat 2

> meals in a row or eat them too close together.

>

In contrast to dumping, which is rapid gastric emptying, this sounds

more like delayed gastric emptying. Food still in the stomach from the

last meal. Or, your esophagus is still being distended by food eaten at

the last meal. Too many possibilities. I think you need more data, so

more tests, to rule out some of the possibilities. They could test

gastric emptying by timed barium. You also could have a water load test

to see how much it takes to make you have pain from distention. Also, if

the barium test you have had in the past was the stuff you drink, you

could have the barium meal where you eat barium in food.

> The fear of a heart attack sits in my mind, the fear that I will be

> having one & won't realize it. I'm not under any stress so I know

> it's not that.

>

At some point you may have to have your heart checked out for peace of

mind. I had to do that for surgery screening and the heart doc was not

pleased that I hadn't done it sooner even if I was sure it was just spasms.

Drinking capacity and severity of dyspeptic symptoms during a water load

test after Nissen fundoplication.

http://www.ncbi.nlm.nih.gov/pubmed/17406836

Altered esophageal sensory-motor function in patients with persistent

symptoms after Nissen fundoplication.

http://www.ncbi.nlm.nih.gov/pubmed/17236847

Motor and sensory function of the proximal stomach in reflux disease and

after laparoscopic Nissen fundoplication.

http://www.ncbi.nlm.nih.gov/pubmed/10364011

notan

[Guest guest]

Notan,

     I don't believe my doctor is the famous Dr L.  His name just starts with

L.  I didn't want to use his name & cause any problems.  He did not tell me

anything about the manometry except that it confirmed esophageal spasms & no

achalasia.

     I don't remember feeling any spasms during my barium test.  I was told that

the barium test came out " fine " . 

     I found an old email on this group that talked about the " non-cardiac chest

pains " & forwarded it to my doctor on Monday.  I actually got a call from him on

Tuesday.  That really impressed me!!  He too feels that is what I am

experiencing & asked me to try to push up the date of my ph test.  Since I have

to drive 1hr 30min 2 days in a row, I was trying to get it done on my days off,

Tuesdays & Wednesdays.  I'm a 9-1-1 dispatcher & really don't want to have to

deal with a tube shoved up my nose while dealing with officers & the public.  I

was originally scheduled for May 31st.  They called yesterday & was able to get

me in on May 3rd.  I am also submitting a stool sample (YUCK!!) to re-test me

for H pylori.  I did the triple therapy in January & my doctor wants to confirm

it is gone. 

     Thanks for the info on the manometry, I will remember that.  It is strange

to me though how my pain has " changed " during this ordeal.  By change I mean

where it starts & where it all goes.  My surgeon actually said I was a mystery. 

I told the nurse in Cleveland that I felt like someone who would be on Mystery

Diagnosis.  She said they don't have any of those there.  Little did she know

they would have an unsatisfied customer.  Thanks again for all of your help

Notan.

 

[Guest guest]

Hey ,

Do you go to a surgeon in pittsburgh is it Dr. Landreneau? I live in

pittsburgh and have Achalasia. I have had it for 15 years

hope they figure it out.

Abigail

________________________________

From: Westerdes <sara4894@...>

achalasia

Sent: Fri, April 15, 2011 5:27:09 PM

Subject: Re: Re: New Member - Unique Symptoms - Any Suggestions??

Notan,

I don't believe my doctor is the famous Dr L. His name just starts with

L. I didn't want to use his name & cause any problems. He did not tell me

anything about the manometry except that it confirmed esophageal spasms & no

achalasia.

I don't remember feeling any spasms during my barium test. I was told that

the barium test came out " fine " .

I found an old email on this group that talked about the " non-cardiac chest

pains " & forwarded it to my doctor on Monday. I actually got a call from him on

Tuesday. That really impressed me!! He too feels that is what I am

experiencing & asked me to try to push up the date of my ph test. Since I have

to drive 1hr 30min 2 days in a row, I was trying to get it done on my days off,

Tuesdays & Wednesdays. I'm a 9-1-1 dispatcher & really don't want to have to

deal with a tube shoved up my nose while dealing with officers & the public. I

was originally scheduled for May 31st. They called yesterday & was able to get

me in on May 3rd. I am also submitting a stool sample (YUCK!!) to re-test me

for H pylori. I did the triple therapy in January & my doctor wants to confirm

it is gone.

Thanks for the info on the manometry, I will remember that. It is strange

to me though how my pain has " changed " during this ordeal. By change I mean

where it starts & where it all goes. My surgeon actually said I was a mystery.

I told the nurse in Cleveland that I felt like someone who would be on Mystery

Diagnosis. She said they don't have any of those there. Little did she know

they would have an unsatisfied customer. Thanks again for all of your help

Notan.

[Guest guest]

Abigail,

     No, sorry it isn't the same doctor.  Mine is from the central Ohio

area,

 

From: Abigailail Tyson <abigailstar2009@...>

Subject: Re: Re: New Member - Unique Symptoms - Any Suggestions??

achalasia

Date: Friday, April 15, 2011, 8:37 PM

 

Hey ,

Do you go to a surgeon in pittsburgh is it Dr. Landreneau? I live in

pittsburgh and have Achalasia. I have had it for 15 years

hope they figure it out.

Abigail

________________________________

From: Westerdes <sara4894@...>

achalasia

Sent: Fri, April 15, 2011 5:27:09 PM

Subject: Re: Re: New Member - Unique Symptoms - Any Suggestions??

Notan,

I don't believe my doctor is the famous Dr L. His name just starts with

L. I didn't want to use his name & cause any problems. He did not tell me

anything about the manometry except that it confirmed esophageal spasms & no

achalasia.

I don't remember feeling any spasms during my barium test. I was told that

the barium test came out " fine " .

I found an old email on this group that talked about the " non-cardiac chest

pains " & forwarded it to my doctor on Monday. I actually got a call from him on

Tuesday. That really impressed me!! He too feels that is what I am

experiencing & asked me to try to push up the date of my ph test. Since I have

to drive 1hr 30min 2 days in a row, I was trying to get it done on my days off,

Tuesdays & Wednesdays. I'm a 9-1-1 dispatcher & really don't want to have to

deal with a tube shoved up my nose while dealing with officers & the public. I

was originally scheduled for May 31st. They called yesterday & was able to get

me in on May 3rd. I am also submitting a stool sample (YUCK!!) to re-test me

for H pylori. I did the triple therapy in January & my doctor wants to confirm

it is gone.

Thanks for the info on the manometry, I will remember that. It is strange

to me though how my pain has " changed " during this ordeal. By change I mean

where it starts & where it all goes. My surgeon actually said I was a mystery.

I told the nurse in Cleveland that I felt like someone who would be on Mystery

Diagnosis. She said they don't have any of those there. Little did she know

they would have an unsatisfied customer. Thanks again for all of your help

Notan.