Re: New to this group: Care for Mentally-Challenged with Achalasia

[Guest guest]

Hi,

I am not able to answer most of your questions but I can assure you you are not

alone. I have a 13 yr old daughter who symptoms you have just described.

Recently she had a second HM (heller's myotomy) where they extended the original

myotomy and she also had a pyloric myotomy to enable her food to pass into her

stomach more quickly. Her pain has diminished from all day everyday to every

once and a while (so far).

The pain you're describing is what my daughter had and we have tried everything

from chiropractors to heat and ice to pain meds nothing helped except finding

ways to get her mind off it. Forcing her to be strong of sorts. That is until

this past surgery. If I am not mistaken Achalasia can effect other parts of the

body although I don't think it is called Achalasia.

Wishing you both the best of luck

Shamira

Sent from my Motorola ATRIXâ„¢ 4G on AT & T

New to this group: Care for Mentally-Challenged with

Achalasia

Sorry, I'm resending this again as a new topic. Realized I should have done it

this way the first time.

I'm new to this group. I am caregiver for my mentally-challenged sister who is

54.

Beginning in 2006, she began having pain in her chest after she ate, when food

would feel like it was getting stuck. She never got to the extreme condition

often described here of not being able to keep food down or even being able to

drink. She had her esophagus stretched a couple times, botox injections (which

made her condition worse). Due to the pain she experienced after eating, she

wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

I have taken her to numerous specialists (I would guess maybe 20) and some out

of state. Some believed it could have been adhesions from the surgery or nerve

damage. It was only within the past 3 months when we saw a new physician in our

winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irri

[Guest guest]

I had similar pain for a couple of decades

post HM. On a biopsy test for celiac the doc

noticed that bile was reversing and going into

my stomach. He thought it was due to the HM

surgery and I believe a change in pressure

causing it. It was only caught because the

endoscope went past the E and into the intestine.

I'm sure I'm not the only one to have this problem.

Sent from my iPod

On Jul 13, 2012, at 22:00, " kasullivan56 " <kasullivan56@...> wrote:

> Sorry, I'm resending this again as a new topic. Realized I should have done it

this way the first time.

>

> I'm new to this group. I am caregiver for my mentally-challenged sister who is

54.

>

> Beginning in 2006, she began having pain in her chest after she ate, when food

would feel like it was getting stuck. She never got to the extreme condition

often described here of not being able to keep food down or even being able to

drink. She had her esophagus stretched a couple times, botox injections (which

made her condition worse). Due to the pain she experienced after eating, she

wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

>

> She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

>

> I have taken her to numerous specialists (I would guess maybe 20) and some out

of state. Some believed it could have been adhesions from the surgery or nerve

damage. It was only within the past 3 months when we saw a new physician in our

winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irritable bowel

syndrome, and cardiomyopaty (enlarged heart). The doctor said even though she

had the myotomy, this does not resolve her achalasia; she still has it and that

electrical impulses in her neurological system cause erratic spasms and don't

work properly.

>

> We have tried numerous approaches to ease her symptoms including Fentanyl pain

patches, pain meds, nerve block, alternative approaches including massage, Amega

wand, TENS, energy healing treatments, etc. However, she still suffers with this

pain and has a low pain tolerance. She cries a lot when she is in pain.

>

> Since she is mentally-challenged, she isn't able to effectively communicate

the level of pain or description of pain she has. I believe it is sharp, and at

times it has been a pain level 9. When she experiences her pain, she doesn't

want to eat because sometimes she does have pain afterwards, but again, it is in

her sternum area. After a few minutes, it usually gets better after the food

moves down her digestive system. Unfortunately, she is not a good chewer;

although we try to explain and teach her how to do this. Her mentality is about

that of a 4 year old.

>

> Any suggestions, tips, or guidance would be most welcome. I don't understand a

lot of the abbreviations yet, like what is an HM? I'm wondering if when

has her pain, is she really experiencing spasms? I have found that when she is

pain and sleeps a lot, it can go on for 3 or 4 days. However, if I encourage her

to get up and get her out of the house and engaged, it can break the pain cycle.

Because her brain is not normal, I wonder if her brain stays locked on the pain

sensation until it is distracted.

>

> I am persistent and determined to find relief for her. She is a precious,

sweet person. Everyone loves her and she is the joy of our lives. We almost lost

her last fall when she was put under anesthesia for a heart MRI and she had a

cardiac arrest and it also happened when I took her to the University of

Illinois Hospital in Chicago to see specialists and she had a cardiac arrest

when they did an endoscopy. Those were horrible experiences. She deserves a

better quality of life and I won't give up trying to improve her condition.

>

>

[Guest guest]

How was this resolved for you? 

Kristy

________________________________

From: Faith Weiss <weissf@...>

" achalasia " <achalasia >

Sent: Friday, July 13, 2012 10:37 PM

Subject: Re: New to this group: Care for Mentally-Challenged with

Achalasia

I had similar pain for a couple of decades

post HM.  On a biopsy test for celiac the doc

noticed that bile was reversing and going into

my stomach.  He thought it was due to the HM

surgery and I believe a change in pressure

causing it.  It was only caught because the

endoscope went past the E and into the intestine.

I'm sure I'm not the only one to have this problem.

Sent from my iPod

On Jul 13, 2012, at 22:00, " kasullivan56 " <kasullivan56@...> wrote:

> Sorry, I'm resending this again as a new topic. Realized I should have done it

this way the first time.

>

> I'm new to this group. I am caregiver for my mentally-challenged sister who is

54.

>

> Beginning in 2006, she began having pain in her chest after she ate, when food

would feel like it was getting stuck. She never got to the extreme condition

often described here of not being able to keep food down or even being able to

drink. She had her esophagus stretched a couple times, botox injections (which

made her condition worse). Due to the pain she experienced after eating, she

wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

>

> She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

>

> I have taken her to numerous specialists (I would guess maybe 20) and some out

of state. Some believed it could have been adhesions from the surgery or nerve

damage. It was only within the past 3 months when we saw a new physician in our

winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irritable bowel

syndrome, and cardiomyopaty (enlarged heart). The doctor said even though she

had the myotomy, this does not resolve her achalasia; she still has it and that

electrical impulses in her neurological system cause erratic spasms and don't

work properly.

>

> We have tried numerous approaches to ease her symptoms including Fentanyl pain

patches, pain meds, nerve block, alternative approaches including massage, Amega

wand, TENS, energy healing treatments, etc. However, she still suffers with this

pain and has a low pain tolerance. She cries a lot when she is in pain.

>

> Since she is mentally-challenged, she isn't able to effectively communicate

the level of pain or description of pain she has. I believe it is sharp, and at

times it has been a pain level 9. When she experiences her pain, she doesn't

want to eat because sometimes she does have pain afterwards, but again, it is in

her sternum area. After a few minutes, it usually gets better after the food

moves down her digestive system. Unfortunately, she is not a good chewer;

although we try to explain and teach her how to do this. Her mentality is about

that of a 4 year old.

>

> Any suggestions, tips, or guidance would be most welcome. I don't understand a

lot of the abbreviations yet, like what is an HM? I'm wondering if when

has her pain, is she really experiencing spasms? I have found that when she is

pain and sleeps a lot, it can go on for 3 or 4 days. However, if I encourage her

to get up and get her out of the house and engaged, it can break the pain cycle.

Because her brain is not normal, I wonder if her brain stays locked on the pain

sensation until it is distracted.

>

> I am persistent and determined to find relief for her. She is a precious,

sweet person. Everyone loves her and she is the joy of our lives. We almost lost

her last fall when she was put under anesthesia for a heart MRI and she had a

cardiac arrest and it also happened when I took her to the University of

Illinois Hospital in Chicago to see specialists and she had a cardiac arrest

when they did an endoscopy. Those were horrible experiences. She deserves a

better quality of life and I won't give up trying to improve her condition.

>

>

[Guest guest]

Thank you for sharing your daughter's experience!

Kristy

________________________________

From: " shareedanieal@... " <shareedanieal@...>

achalasia

Sent: Friday, July 13, 2012 10:22 PM

Subject: Re: New to this group: Care for Mentally-Challenged with

Achalasia

 

Hi,

I am not able to answer most of your questions but I can assure you you are not

alone. I have a 13 yr old daughter who symptoms you have just described.

Recently she had a second HM (heller's myotomy) where they extended the original

myotomy and she also had a pyloric myotomy to enable her food to pass into her

stomach more quickly. Her pain has diminished from all day everyday to every

once and a while (so far).

The pain you're describing is what my daughter had and we have tried everything

from chiropractors to heat and ice to pain meds nothing helped except finding

ways to get her mind off it. Forcing her to be strong of sorts. That is until

this past surgery. If I am not mistaken Achalasia can effect other parts of the

body although I don't think it is called Achalasia.

Wishing you both the best of luck

Shamira

Sent from my Motorola ATRIXâ„¢ 4G on AT & T

New to this group: Care for Mentally-Challenged with

Achalasia

Sorry, I'm resending this again as a new topic. Realized I should have done it

this way the first time.

I'm new to this group. I am caregiver for my mentally-challenged sister who is

54.

Beginning in 2006, she began having pain in her chest after she ate, when food

would feel like it was getting stuck. She never got to the extreme condition

often described here of not being able to keep food down or even being able to

drink. She had her esophagus stretched a couple times, botox injections (which

made her condition worse). Due to the pain she experienced after eating, she

wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

I have taken her to numerous specialists (I would guess maybe 20) and some out

of state. Some believed it could have been adhesions from the surgery or nerve

damage. It was only within the past 3 months when we saw a new physician in our

winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irri

[Guest guest]

It wasn't resolved. The knowledge of the cause

was helpful. I do modify my diet and don't

eat or limit intake of foods that increase

bile. It's improved some.

Sent from my iPod

On Jul 13, 2012, at 22:48, Kristy Sullivan <kasullivan56@...> wrote:

> How was this resolved for you?

>

> Kristy

>

>

> ________________________________

> From: Faith Weiss <weissf@...>

> " achalasia " <achalasia >

> Sent: Friday, July 13, 2012 10:37 PM

> Subject: Re: New to this group: Care for Mentally-Challenged with

Achalasia

>

> I had similar pain for a couple of decades

> post HM. On a biopsy test for celiac the doc

> noticed that bile was reversing and going into

> my stomach. He thought it was due to the HM

> surgery and I believe a change in pressure

> causing it. It was only caught because the

> endoscope went past the E and into the intestine.

>

> I'm sure I'm not the only one to have this problem.

>

> Sent from my iPod

>

> On Jul 13, 2012, at 22:00, " kasullivan56 " <kasullivan56@...> wrote:

>

> > Sorry, I'm resending this again as a new topic. Realized I should have done

it this way the first time.

> >

> > I'm new to this group. I am caregiver for my mentally-challenged sister who

is 54.

> >

> > Beginning in 2006, she began having pain in her chest after she ate, when

food would feel like it was getting stuck. She never got to the extreme

condition often described here of not being able to keep food down or even being

able to drink. She had her esophagus stretched a couple times, botox injections

(which made her condition worse). Due to the pain she experienced after eating,

she wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

> >

> > She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

> >

> > I have taken her to numerous specialists (I would guess maybe 20) and some

out of state. Some believed it could have been adhesions from the surgery or

nerve damage. It was only within the past 3 months when we saw a new physician

in our winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irritable bowel

syndrome, and cardiomyopaty (enlarged heart). The doctor said even though she

had the myotomy, this does not resolve her achalasia; she still has it and that

electrical impulses in her neurological system cause erratic spasms and don't

work properly.

> >

> > We have tried numerous approaches to ease her symptoms including Fentanyl

pain patches, pain meds, nerve block, alternative approaches including massage,

Amega wand, TENS, energy healing treatments, etc. However, she still suffers

with this pain and has a low pain tolerance. She cries a lot when she is in

pain.

> >

> > Since she is mentally-challenged, she isn't able to effectively communicate

the level of pain or description of pain she has. I believe it is sharp, and at

times it has been a pain level 9. When she experiences her pain, she doesn't

want to eat because sometimes she does have pain afterwards, but again, it is in

her sternum area. After a few minutes, it usually gets better after the food

moves down her digestive system. Unfortunately, she is not a good chewer;

although we try to explain and teach her how to do this. Her mentality is about

that of a 4 year old.

> >

> > Any suggestions, tips, or guidance would be most welcome. I don't understand

a lot of the abbreviations yet, like what is an HM? I'm wondering if when

has her pain, is she really experiencing spasms? I have found that when she is

pain and sleeps a lot, it can go on for 3 or 4 days. However, if I encourage her

to get up and get her out of the house and engaged, it can break the pain cycle.

Because her brain is not normal, I wonder if her brain stays locked on the pain

sensation until it is distracted.

> >

> > I am persistent and determined to find relief for her. She is a precious,

sweet person. Everyone loves her and she is the joy of our lives. We almost lost

her last fall when she was put under anesthesia for a heart MRI and she had a

cardiac arrest and it also happened when I took her to the University of

Illinois Hospital in Chicago to see specialists and she had a cardiac arrest

when they did an endoscopy. Those were horrible experiences. She deserves a

better quality of life and I won't give up trying to improve her condition.

> >

> >

>

>

[Guest guest]

Hi

I decided to see if any other things might be the cause.

http://www.buzzle.com/articles/sternum-pain-causes.html

After my dinner I use a HOT heating pad on the chest, below the neck, EVERY

night, this helps getting the food to pass through. I do this for all for

several hours while watching TV

Also have a hot coffee or maybe a COLD COKE with a lot of CO2, which opens the

LES.

Many people after a HM get a FULL dilation of 30 mm, followed by 35 and 40 mm.

Maybe some will reply who have had it. I have had Achalasia for 6 or more years.

My problem with spasms, in my case, when food is in the e, once it passes, I am

ok. I am being very active, being vertical, walking each morning for hot coffee

to Mcs. Without the walk about a mile I would be terrible. I used to

regurgitate on the second cup on the way home, now I have found out what caused

it, FOOD from last evening that did not pass.

I wonder if she has had a FULL dilation after the HM? Some times peopls say this

also causes a spasm.

What a wonderful sister who takes on this problem.

Ray CA OC 81-NO HM or dilation, have found out how to MANAGE it, difficult at

times.

>

> Sorry, I'm resending this again as a new topic. Realized I should have done

it this way the first time.

>

> I'm new to this group. I am caregiver for my mentally-challenged sister who

is 54.

>

> Beginning in 2006, she began having pain in her chest after she ate, when

food would feel like it was getting stuck. She never got to the extreme

condition often described here of not being able to keep food down or even being

able to drink. She had her esophagus stretched a couple times, botox injections

(which made her condition worse). Due to the pain she experienced after eating,

she wouldn't want to eat and she lost 70 lbs. over the course of a year (she is

actually at an ideal weight now, but can't risk losing more).

>

> She was diagnosed with achalasia in 2008 and 10/08, she had an esophageal

myotomy with fundiplication surgery. Since that time, she has had a severe,

dibilitating pain just below her sternum and sometimes 4 inches below her

sternum (doctors describe it as in the epigastric area). She has suffered with

this pain for almost 4 years.

>

> I have taken her to numerous specialists (I would guess maybe 20) and some

out of state. Some believed it could have been adhesions from the surgery or

nerve damage. It was only within the past 3 months when we saw a new physician

in our winter home in Florida did I get an explanation that the pain is due to a

neurological syndrome which is the cause of her achalasia, irritable bowel

syndrome, and cardiomyopaty (enlarged heart). The doctor said even though she

had the myotomy, this does not resolve her achalasia; she still has it and that

electrical impulses in her neurological system cause erratic spasms and don't

work properly.

>

> We have tried numerous approaches to ease her symptoms including Fentanyl

pain patches, pain meds, nerve block, alternative approaches including massage,

Amega wand, TENS, energy healing treatments, etc. However, she still suffers

with this pain and has a low pain tolerance. She cries a lot when she is in

pain.

>

> Since she is mentally-challenged, she isn't able to effectively communicate

the level of pain or description of pain she has. I believe it is sharp, and at

times it has been a pain level 9. When she experiences her pain, she doesn't

want to eat because sometimes she does have pain afterwards, but again, it is in

her sternum area. After a few minutes, it usually gets better after the food

moves down her digestive system. Unfortunately, she is not a good chewer;

although we try to explain and teach her how to do this. Her mentality is about

that of a 4 year old.

>

> Any suggestions, tips, or guidance would be most welcome. I don't understand

a lot of the abbreviations yet, like what is an HM? I'm wondering if when

has her pain, is she really experiencing spasms? I have found that when she is

pain and sleeps a lot, it can go on for 3 or 4 days. However, if I encourage

her to get up and get her out of the house and engaged, it can break the pain

cycle. Because her brain is not normal, I wonder if her brain stays locked on

the pain sensation until it is distracted.

>

> I am persistent and determined to find relief for her. She is a precious,

sweet person. Everyone loves her and she is the joy of our lives. We almost

lost her last fall when she was put under anesthesia for a heart MRI and she had

a cardiac arrest and it also happened when I took her to the University of

Illinois Hospital in Chicago to see specialists and she had a cardiac arrest

when they did an endoscopy. Those were horrible experiences. She deserves a

better quality of life and I won't give up trying to improve her condition.

>