New member

[Guest guest]

Hi

Like so many people here, I suffered for years not having any idea what was

wrong with me, taking Prilosec every day, wondering if I was going to be able to

swallow, etc. Dilations really didn't help me much (gave me maybe 2 months

relief) and so last year I had the surgery (myotomy). Like many people, it has

allowed me to resume a fairly normal life, one where I don't have to spend much

time wondering 'what are the chances I'll be able to actually swallow that?' One

night in the hospital and I was back home on a soft diet for a few weeks (mashed

potatoes, meat loaf, and milk shakes - there are worse things in the world) and

then I could eat what I liked (just chew properly like your mother told you to

do). Post surgery, I had nearly no pain at all (just some soreness for a few

days as if I did a lot of situps). As others have said, this doesn't get better

with time, the E, once stretched, doesn't snap back to its original form and can

get so distended that it may have to be removed; I'm hoping that the surgery has

forestalled/prevented that eventuality for me.

If you haven't already done so, read the historical posts in this forum for the

past few years. Also, I would add my voice to encourage you to speak with an

experienced surgeon (who has done this procedure many times) in your area so you

can at least understand your options.

Mike (Cincinnati)

[Guest guest]

--who was your surgeon--- from Boston

________________________________

From: " Desantis, " <desantis.rm@...>

" achalasia " <achalasia >

Sent: Thu, February 3, 2011 9:59:54 AM

Subject: Re: New Member

 

Hi

Like so many people here, I suffered for years not having any idea what was

wrong with me, taking Prilosec every day, wondering if I was going to be able to

swallow, etc. Dilations really didn't help me much (gave me maybe 2 months

relief) and so last year I had the surgery (myotomy). Like many people, it has

allowed me to resume a fairly normal life, one where I don't have to spend much

time wondering 'what are the chances I'll be able to actually swallow that?' One

night in the hospital and I was back home on a soft diet for a few weeks (mashed

potatoes, meat loaf, and milk shakes - there are worse things in the world) and

then I could eat what I liked (just chew properly like your mother told you to

do). Post surgery, I had nearly no pain at all (just some soreness for a few

days as if I did a lot of situps). As others have said, this doesn't get better

with time, the E, once stretched, doesn't snap back to its original form and can

get so distended that it may have to be removed; I'm hoping that the surgery has

forestalled/prevented that eventuality for me.

If you haven't already done so, read the historical posts in this forum for the

past few years. Also, I would add my voice to encourage you to speak with an

experienced surgeon (who has done this procedure many times) in your area so you

can at least understand your options.

Mike (Cincinnati)

[Guest guest]

,

I echo everyone's sentiments here. You are getting great advice. You must take

your health into your own hands now. By doing nothing you risk stretching your E

out even more than it is.

I did this. I had a dilitation back in 96 and " managed " my swallowing for 14

years. I had no idea I was struggling because with a power chug of water the

food would eventually go through. But there was stasis that I couldn't feel

sitting in there. It was a miracle that I never aspirated it.

When I finally decided to take control of my achalasia, my esophagus was

considered End Stage. 10.5cm in diameter at its widest point, 9cm wide at its

smallest. It made a 90 degree sigmoid turn at the distal end where food was

sitting and fermenting. Most surgeons would tell someone like me that it needs

to be removed. I am only 36 and wanted to hold on with my native esophagus for

as long as I could.

Others in the group do not feel the same as me and were more inclined to go for

esophagectomy. I praise their courage. I was not ready for that step yet.

Thankfully, I went to one of the best surgeons and he was able to perform a

Heller Myotomy with Dor wrap. This was successful (post op almost 4 months). I

was in the hospital for 3 days and went home on a liquid diet for 10 days. i

receovered extremely fast and moved on to soft solids. Everything went down, as

long as I chewed well and ate slowly and smaller portions. But the amazing this

was that I could swallow! I had no idea how poor my swallowing was for the

previous 14 years. I was just coping and didn't know it.

I feel SO MUCH BETTER NOW and I was told by my assistant surgeon that this could

last me decades. My head surgeon believes that I will need an ectomy at some

point, and I will cross that bridge when I get there.

Good luck to you, I think you are taking the first step (which is the hardest in

my opinion) and the rest should fall into place. Just make sure you find the

RIGHT surgeon. One with extensive experience treating achalasia. One who has

performed many many moyotomies.

Please keep us posted!

Cara

>

> Hello,

>

> I am a new member here.

>

> I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

reflux meds my whole life.

>

> In August 2009 I noticed I was having trouble swallowing & started

regurgitating at night. In November of that year I went to my internist with

this complaint & she referred me to a Gastro doctor for a stricture dilation.

They assumed I had a sticture since I had been treated for reflux for so long.

When I woke up from the EGD I was told he thought I had achalasia and was

referred to Dr. Wo, Director of th Swallowing & Motility Center at the

University of Louisville.

>

> I had the manometry & was diagnosed with achalasia in December 2009. The next

month I had the dilation, but only got relief for a few weeks. My doctor said I

do not have a hernia & probably had early signs of achalasia not reflex. No one

ever did a berium swallow - just gave me acid reflux pills.

>

> Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

probably had achalasia for 10 years & it was just undiagnosed. I don't remember

having trouble swallowing prior to 2009. He said he would not recommend another

dilation due to the poor shape of my esophagus. I am not excited about the idea

of surgery & have been trying to manage with just changing my eating habits.

>

> I have discovered the foods that I can't eat - bread & beef are at the top of

the list. I eat smaller meals now & chew my food to death. Salty food is the

easiest for me to get down.

>

> I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

drank water. Now I can't. I can't drink anything hot or cold, but cola is the

easiest thing to get down because it makes me burp. Water - even if I sip it -

seems very heavy & painful when I drink it. It usually comes back up.

Complaint #2 - I get large amounts of air caught in my esophagus & it causes

horrible chest pains. I can drink Pepsi to create belching or I stick my finger

down my throat to make the air come up. The pain can be quite intense & when it

hurts the air needs to come out quickly.

>

> I look forward to learning more from everyone here.

>

> Thanks,

> Watkins

> Louisville, KY

>

[Guest guest]

who was your surgeon-- from Boston

________________________________

From: spotoca <cspoto@...>

achalasia

Sent: Thu, February 3, 2011 10:25:22 AM

Subject: Re: New Member

 

,

I echo everyone's sentiments here. You are getting great advice. You must take

your health into your own hands now. By doing nothing you risk stretching your E

out even more than it is.

I did this. I had a dilitation back in 96 and " managed " my swallowing for 14

years. I had no idea I was struggling because with a power chug of water the

food would eventually go through. But there was stasis that I couldn't feel

sitting in there. It was a miracle that I never aspirated it.

When I finally decided to take control of my achalasia, my esophagus was

considered End Stage. 10.5cm in diameter at its widest point, 9cm wide at its

smallest. It made a 90 degree sigmoid turn at the distal end where food was

sitting and fermenting. Most surgeons would tell someone like me that it needs

to be removed. I am only 36 and wanted to hold on with my native esophagus for

as long as I could.

Others in the group do not feel the same as me and were more inclined to go for

esophagectomy. I praise their courage. I was not ready for that step yet.

Thankfully, I went to one of the best surgeons and he was able to perform a

Heller Myotomy with Dor wrap. This was successful (post op almost 4 months). I

was in the hospital for 3 days and went home on a liquid diet for 10 days. i

receovered extremely fast and moved on to soft solids. Everything went down, as

long as I chewed well and ate slowly and smaller portions. But the amazing this

was that I could swallow! I had no idea how poor my swallowing was for the

previous 14 years. I was just coping and didn't know it.

I feel SO MUCH BETTER NOW and I was told by my assistant surgeon that this could

last me decades. My head surgeon believes that I will need an ectomy at some

point, and I will cross that bridge when I get there.

Good luck to you, I think you are taking the first step (which is the hardest in

my opinion) and the rest should fall into place. Just make sure you find the

RIGHT surgeon. One with extensive experience treating achalasia. One who has

performed many many moyotomies.

Please keep us posted!

Cara

>

> Hello,

>

> I am a new member here.

>

> I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took reflux

>meds my whole life.

>

> In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

>

> I had the manometry & was diagnosed with achalasia in December 2009. The next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

>

> Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

>

> I have discovered the foods that I can't eat - bread & beef are at the top of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

>

> I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

>

> I look forward to learning more from everyone here.

>

> Thanks,

> Watkins

> Louisville, KY

>

[Guest guest]

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because

of the damage done to my esophagus already. He said mine is the largest he has

ever seen & he suspects I have had the disease for about 10yrs. He recommends

the surgery, but like I said it is not an option for me at the moment. Surgery

is not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss

a nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

regurgitating at night. In November of that year I went to my internist with

this complaint & she referred me to a Gastro doctor for a stricture dilation.

They assumed I had a sticture since I had been treated for reflux for so long.

When I woke up from the EGD I was told he thought I had achalasia and was

referred to Dr. Wo, Director of th Swallowing & Motility Center at the

University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next month I had the dilation, but only got relief for a few weeks. My doctor

said I do not have a hernia & probably had early signs of achalasia not reflex.

No one ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

probably had achalasia for 10 years & it was just undiagnosed. I don't remember

having trouble swallowing prior to 2009. He said he would not recommend another

dilation due to the poor shape of my esophagus. I am not excited about the idea

of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of the list. I eat smaller meals now & chew my food to death. Salty food is the

easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I

only drank water. Now I can't. I can't drink anything hot or cold, but cola is

the easiest thing to get down because it makes me burp. Water - even if I sip

it - seems very heavy & painful when I drink it. It usually comes back up.

Complaint #2 - I get large amounts of air caught in my esophagus & it causes

horrible chest pains. I can drink Pepsi to create belching or I stick my finger

down my throat to make the air come up. The pain can be quite intense & when it

hurts the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

, you need to be careful with this.  For one thing, you can stretch out

your Esophogus, which could mean worse things toi come.  Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months.  Ultimately some medical procedure needs to be done.  Is

there a state insurance you can use?  This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... " <jwatkins67@...>

achalasia

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

 

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

My esophagus is already stretched. Dr. Wo said he has never seen one this bad.

I have lost a significant amount of weight, but I had plenty to spare so that

has not been an issue.

State insurance takes into consideration pre-existing conditions. With

Achalasia as well as High Blood Pressure the rates were huge.

I eat small meals & if I feel pressure in my chest I just regurgitate it out and

stop eating. I cannot eat or drink anything until at least noon. From a

lifelong breakfast eater that was a transition, but for some reason eating in

the morning just doesn't work anymore. I try not to eat after about 8 in the

evening to give food time to go down in the evening.

Watkins

Louisville KY

From: achalasia [mailto:achalasia ] On Behalf Of

vincent murray

Sent: Thursday, February 03, 2011 3:48 PM

achalasia

Subject: Re: Re: New Member

, you need to be careful with this. For one thing, you can stretch out

your Esophogus, which could mean worse things toi come. Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months. Ultimately some medical procedure needs to be done. Is

there a state insurance you can use? This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... <mailto:jwatkins67%40bellsouth.net> "

<jwatkins67@... <mailto:jwatkins67%40bellsouth.net> >

achalasia <mailto:achalasia%40>

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

I know only slightly more than I want to know about US medical care, but I know

that some people have spoken to their surgeons and were able to make

arrangements... I worry about your health at this point, and if you're not

receiving treatment because of a lack of health coverage, then there should be

something someone should do... pre-existing condition or not.  I would take

your condition very seriously, and not looking into every possible solution is

scary

kim

From: Watkins <jwatkins67@...>

Subject: RE: Re: New Member

achalasia

Date: Thursday, February 3, 2011, 5:56 PM

 

My esophagus is already stretched. Dr. Wo said he has never seen one this

bad.

I have lost a significant amount of weight, but I had plenty to spare so that

has not been an issue.

State insurance takes into consideration pre-existing conditions. With

Achalasia as well as High Blood Pressure the rates were huge.

I eat small meals & if I feel pressure in my chest I just regurgitate it out and

stop eating. I cannot eat or drink anything until at least noon. From a

lifelong breakfast eater that was a transition, but for some reason eating in

the morning just doesn't work anymore. I try not to eat after about 8 in the

evening to give food time to go down in the evening.

Watkins

Louisville KY

From: achalasia [mailto:achalasia ] On Behalf Of

vincent murray

Sent: Thursday, February 03, 2011 3:48 PM

achalasia

Subject: Re: Re: New Member

, you need to be careful with this. For one thing, you can stretch out

your Esophogus, which could mean worse things toi come. Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months. Ultimately some medical procedure needs to be done. Is

there a state insurance you can use? This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... <mailto:jwatkins67%40bellsouth.net> "

<jwatkins67@... <mailto:jwatkins67%40bellsouth.net> >

achalasia <mailto:achalasia%40>

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

I am taking it seriously - that I why I sought out a message board.

I am a single woman with a mortgage. I am too young for social security & I am

not disabled. I am unemployed & the unemployed in this county are not given

health insurance. I have significant debt from the medical procedures I had

done to diagnose the Achalasia at the end of 2009/beginning of 2010 - 2 EGD's &

the Manometry with sedation. I also developed a kidney stone last February

which required treatment. They think it was because I don't drink enough fluids

now with the Achalasia. I had a $3000 deductible on my insurance plans in both

2009 & 2010. I am currently making payments to 2 hospitals & 2 doctors, plus

the facility that did the cat scan for the kidney stone. The only income I have

is unemployment and that does not go far with a mortgage, utilities, the medical

bills I have & the prescription drugs I now have to pay for out of pocket.

I cannot accept more debt at this time. Hopefully there is a job in my future,

but to get healthcare you usually have to work at least 90 days to qualify.

I understand that surgery is the next option, but it is not an option for me at

this time. If that is the only advice that can be offered than perhaps I am

wasting everyone's time here.

From: achalasia [mailto:achalasia ] On Behalf Of

Kim

Sent: Thursday, February 03, 2011 5:10 PM

achalasia

Subject: RE: Re: New Member

I know only slightly more than I want to know about US medical care, but I know

that some people have spoken to their surgeons and were able to make

arrangements... I worry about your health at this point, and if you're not

receiving treatment because of a lack of health coverage, then there should be

something someone should do... pre-existing condition or not. I would take your

condition very seriously, and not looking into every possible solution is scary

kim

From: Watkins <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> >

Subject: RE: Re: New Member

achalasia <mailto:achalasia%40>

Date: Thursday, February 3, 2011, 5:56 PM

My esophagus is already stretched. Dr. Wo said he has never seen one this bad.

I have lost a significant amount of weight, but I had plenty to spare so that

has not been an issue.

State insurance takes into consideration pre-existing conditions. With Achalasia

as well as High Blood Pressure the rates were huge.

I eat small meals & if I feel pressure in my chest I just regurgitate it out and

stop eating. I cannot eat or drink anything until at least noon. From a lifelong

breakfast eater that was a transition, but for some reason eating in the morning

just doesn't work anymore. I try not to eat after about 8 in the evening to give

food time to go down in the evening.

Watkins

Louisville KY

From: achalasia <mailto:achalasia%40>

[mailto:achalasia <mailto:achalasia%40> ] On

Behalf Of vincent murray

Sent: Thursday, February 03, 2011 3:48 PM

achalasia <mailto:achalasia%40>

Subject: Re: Re: New Member

, you need to be careful with this. For one thing, you can stretch out

your Esophogus, which could mean worse things toi come. Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months. Ultimately some medical procedure needs to be done. Is

there a state insurance you can use? This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... <mailto:jwatkins67%40bellsouth.net>

<mailto:jwatkins67%40bellsouth.net> " <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> <mailto:jwatkins67%40bellsouth.net> >

achalasia <mailto:achalasia%40>

<mailto:achalasia%40>

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

,

you need to take control of your health. Doing nothing is not really an

option. Things will get worse. What will you do when you can longer eat even in

the afternoon? Malnutrition is a very serious situation. It can preclude you

from being a candidate for surgery. I agree with Kim, there are ways of working

things out with these surgeons. There are financial depts designed to help you

get your bills paid. They will work with you especially if your condition is as

severe as you say it is.

My surgeon told me that my main issue with an esophagus as large as mine is was

aspiration. If you have food sitting in there and I am very sure you do, there

is a very high risk of aspiration. The stasis sitting in your esophagus is rich

in gram negative bacteria (I think that is what its called) and can easliy cause

pneumonia. This type of pneumonia is serious. People on this very board have

been hospitalized for almost 2 weeks with pneumonia. Its nothing to take

lightly. i would consider exploring your options financially and see what a top

surgeon is willing to do for you. Its worth the conversation. its your health.

>

> > >

>

> > > Hello,

>

> > >

>

> > > I am a new member here.

>

> > >

>

> > > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>

> >reflux meds my whole life.

>

> > >

>

> > > In August 2009 I noticed I was having trouble swallowing & started

>

> >regurgitating at night. In November of that year I went to my internist with

>

> >this complaint & she referred me to a Gastro doctor for a stricture dilation.

>

> >They assumed I had a sticture since I had been treated for reflux for so

long.

>

> >When I woke up from the EGD I was told he thought I had achalasia and was

>

> >referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>

> >University of Louisville.

>

> > >

>

> > > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>

> >month I had the dilation, but only got relief for a few weeks. My doctor said

I

>

> >do not have a hernia & probably had early signs of achalasia not reflex. No

one

>

> >ever did a berium swallow - just gave me acid reflux pills.

>

> > >

>

> > > Dr. Wo told me my esophagus is very stretched at the base & he thinks I

have

>

> >probably had achalasia for 10 years & it was just undiagnosed. I don't

remember

>

> >having trouble swallowing prior to 2009. He said he would not recommend

another

>

> >dilation due to the poor shape of my esophagus. I am not excited about the

idea

>

> >of surgery & have been trying to manage with just changing my eating habits.

>

> > >

>

> > > I have discovered the foods that I can't eat - bread & beef are at the top

of

>

> >the list. I eat smaller meals now & chew my food to death. Salty food is the

>

> >easiest for me to get down.

>

> > >

>

> > > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I

only

>

> >drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>

> >easiest thing to get down because it makes me burp. Water - even if I sip it

-

>

> >seems very heavy & painful when I drink it. It usually comes back up.

Complaint

>

> >#2 - I get large amounts of air caught in my esophagus & it causes horrible

>

> >chest pains. I can drink Pepsi to create belching or I stick my finger down

my

>

> >throat to make the air come up. The pain can be quite intense & when it hurts

>

> >the air needs to come out quickly.

>

> > >

>

> > > I look forward to learning more from everyone here.

>

> > >

>

> > > Thanks,

>

> > > Watkins

>

> > > Louisville, KY

>

> > >

>

> >

>

>

>

>

[Guest guest]

I worded my comment incorrectly... I'm more upset by the US healthcare system

than with what you're not able to do financially  My husband is a US

citizen, but thankfully we're in Canada now, so I don't have to worry about

these issues myself, being unemployed as well.

I know there are discussions here from a few months ago discussing possible

options for people without insurance, and from what I remember, it was suggested

to talk to the surgeon and see if arrangements could be made to work things out.

 I just can't IMAGINE how someone with a serious medical condition can possibly

be turned away when it means that they can't function or EAT.  It's ridiculous,

imo.  Does your current GI know about your medical coverage issue?

kim

From: Watkins <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> >

Subject: RE: Re: New Member

achalasia <mailto:achalasia%40>

Date: Thursday, February 3, 2011, 5:56 PM

My esophagus is already stretched. Dr. Wo said he has never seen one this bad.

I have lost a significant amount of weight, but I had plenty to spare so that

has not been an issue.

State insurance takes into consideration pre-existing conditions. With Achalasia

as well as High Blood Pressure the rates were huge.

I eat small meals & if I feel pressure in my chest I just regurgitate it out and

stop eating. I cannot eat or drink anything until at least noon. From a lifelong

breakfast eater that was a transition, but for some reason eating in the morning

just doesn't work anymore. I try not to eat after about 8 in the evening to give

food time to go down in the evening.

Watkins

Louisville KY

From: achalasia <mailto:achalasia%40>

[mailto:achalasia <mailto:achalasia%40> ] On

Behalf Of vincent murray

Sent: Thursday, February 03, 2011 3:48 PM

achalasia <mailto:achalasia%40>

Subject: Re: Re: New Member

, you need to be careful with this. For one thing, you can stretch out

your Esophogus, which could mean worse things toi come. Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months. Ultimately some medical procedure needs to be done. Is

there a state insurance you can use? This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... <mailto:jwatkins67%40bellsouth.net>

<mailto:jwatkins67%40bellsouth.net> " <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> <mailto:jwatkins67%40bellsouth.net> >

achalasia <mailto:achalasia%40>

<mailto:achalasia%40>

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

wrote:

> ... If that is the only advice that can be offered than perhaps I am wasting

everyone's time here. ...

They have other advise it is just going to take some time for them to

get past what they would wish for you short of an obvious miracle. Also

there are others in the group that have chosen for one reason or another

not to have surgery. The real question is are we wasting your time?

Sometimes the biggest thing people get out of this group is not the

advise but the connection to people who know what it is like to live

with achalasia. The people that have responded to you have a connection

with you. The time they spent responding has them invested in you.

Something good could grow from it.

May I suggest you try being specific about one problem of living with

achalasia you have and see what comes of that. Otherwise we may have

trouble getting past the popular option of surgery as a topic, at least

for a while.

notan

[Guest guest]

Hey . I would apply for social security. U need health insurance once u

are accepted u might get your state to cover it. till medicare kicks in. I have

achalasia and i get social security. I have been way to sick to work. Always in

the hospital for some procedure. I would check in to it and apply.

Think of u,

Abigail

________________________________

From: Watkins <jwatkins67@...>

achalasia

Sent: Thu, February 3, 2011 5:45:14 PM

Subject: RE: Re: New Member

I am taking it seriously - that I why I sought out a message board.

I am a single woman with a mortgage. I am too young for social security & I am

not disabled. I am unemployed & the unemployed in this county are not given

health insurance. I have significant debt from the medical procedures I had

done to diagnose the Achalasia at the end of 2009/beginning of 2010 - 2 EGD's &

the Manometry with sedation. I also developed a kidney stone last February

which required treatment. They think it was because I don't drink enough fluids

now with the Achalasia. I had a $3000 deductible on my insurance plans in both

2009 & 2010. I am currently making payments to 2 hospitals & 2 doctors, plus

the facility that did the cat scan for the kidney stone. The only income I have

is unemployment and that does not go far with a mortgage, utilities, the medical

bills I have & the prescription drugs I now have to pay for out of pocket.

I cannot accept more debt at this time. Hopefully there is a job in my future,

but to get healthcare you usually have to work at least 90 days to qualify.

I understand that surgery is the next option, but it is not an option for me at

this time. If that is the only advice that can be offered than perhaps I am

wasting everyone's time here.

From: achalasia [mailto:achalasia ] On Behalf Of

Kim

Sent: Thursday, February 03, 2011 5:10 PM

achalasia

Subject: RE: Re: New Member

I know only slightly more than I want to know about US medical care, but I know

that some people have spoken to their surgeons and were able to make

arrangements... I worry about your health at this point, and if you're not

receiving treatment because of a lack of health coverage, then there should be

something someone should do... pre-existing condition or not. I would take your

condition very seriously, and not looking into every possible solution is scary

kim

From: Watkins <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> >

Subject: RE: Re: New Member

achalasia <mailto:achalasia%40>

Date: Thursday, February 3, 2011, 5:56 PM

My esophagus is already stretched. Dr. Wo said he has never seen one this bad.

I have lost a significant amount of weight, but I had plenty to spare so that

has not been an issue.

State insurance takes into consideration pre-existing conditions. With Achalasia

as well as High Blood Pressure the rates were huge.

I eat small meals & if I feel pressure in my chest I just regurgitate it out and

stop eating. I cannot eat or drink anything until at least noon. From a lifelong

breakfast eater that was a transition, but for some reason eating in the morning

just doesn't work anymore. I try not to eat after about 8 in the evening to give

food time to go down in the evening.

Watkins

Louisville KY

From: achalasia <mailto:achalasia%40>

[mailto:achalasia <mailto:achalasia%40> ] On

Behalf Of vincent murray

Sent: Thursday, February 03, 2011 3:48 PM

achalasia <mailto:achalasia%40>

Subject: Re: Re: New Member

, you need to be careful with this. For one thing, you can stretch out

your Esophogus, which could mean worse things toi come. Second, I also had

trouble eating, which got worse, then I could not even drink anything, losing 80

pounds in 3 months. Ultimately some medical procedure needs to be done. Is

there a state insurance you can use? This is a disease that can get bad in a

hurry.

________________________________

From: " jwatkins67@... <mailto:jwatkins67%40bellsouth.net>

<mailto:jwatkins67%40bellsouth.net> " <jwatkins67@...

<mailto:jwatkins67%40bellsouth.net> <mailto:jwatkins67%40bellsouth.net> >

achalasia <mailto:achalasia%40>

<mailto:achalasia%40>

Sent: Thu, February 3, 2011 9:54:39 AM

Subject: Re: New Member

Surgery is not an option at this time. I lost my job last Spring & have no

health insurance. I am still making payments on the 2 EGD's & the Manometry I

had done just before I lost my job.

Dr. Wo knows the disease & the treatments. He runs the Swallowing & Motility

Center at the University of Louisville. We discussed botox - which he did not

recommend. We did the dilation 13mos ago, but he will not do it again because of

the damage done to my esophagus already. He said mine is the largest he has ever

seen & he suspects I have had the disease for about 10yrs. He recommends the

surgery, but like I said it is not an option for me at the moment. Surgery is

not really something I want to do right away anyway if I can avoid it.

I am OK with eating small meals & giving up certain foods. I will admit I miss a

nice hamburger, but there are worse things that could be wrong.

I actually seem to have more trouble drinking than eating most of the time. As

long as I drink room temperature Pepsi I am pretty safe. Water doesn't go down

at all. Anything hot or cold is a no go also.

I will look at some of the old posts & see what I can find. I think I need

advise on how to live with achalasia since further medical intervention cannot

happen right now.

Thanks,

Watkins

Louisville KY

> >

> > Hello,

> >

> > I am a new member here.

> >

> > I was told I had acid reflux & hiatal hernia at 19. I am now 43. I took

>reflux meds my whole life.

> >

> > In August 2009 I noticed I was having trouble swallowing & started

>regurgitating at night. In November of that year I went to my internist with

>this complaint & she referred me to a Gastro doctor for a stricture dilation.

>They assumed I had a sticture since I had been treated for reflux for so long.

>When I woke up from the EGD I was told he thought I had achalasia and was

>referred to Dr. Wo, Director of th Swallowing & Motility Center at the

>University of Louisville.

> >

> > I had the manometry & was diagnosed with achalasia in December 2009. The

next

>

>month I had the dilation, but only got relief for a few weeks. My doctor said I

>do not have a hernia & probably had early signs of achalasia not reflex. No one

>ever did a berium swallow - just gave me acid reflux pills.

> >

> > Dr. Wo told me my esophagus is very stretched at the base & he thinks I have

>probably had achalasia for 10 years & it was just undiagnosed. I don't remember

>having trouble swallowing prior to 2009. He said he would not recommend another

>dilation due to the poor shape of my esophagus. I am not excited about the idea

>of surgery & have been trying to manage with just changing my eating habits.

> >

> > I have discovered the foods that I can't eat - bread & beef are at the top

of

>

>the list. I eat smaller meals now & chew my food to death. Salty food is the

>easiest for me to get down.

> >

> > I have 2 complaints - #1 - I can't drink water. Prior to my diagnosis I only

>drank water. Now I can't. I can't drink anything hot or cold, but cola is the

>easiest thing to get down because it makes me burp. Water - even if I sip it -

>seems very heavy & painful when I drink it. It usually comes back up. Complaint

>#2 - I get large amounts of air caught in my esophagus & it causes horrible

>chest pains. I can drink Pepsi to create belching or I stick my finger down my

>throat to make the air come up. The pain can be quite intense & when it hurts

>the air needs to come out quickly.

> >

> > I look forward to learning more from everyone here.

> >

> > Thanks,

> > Watkins

> > Louisville, KY

> >

>

[Guest guest]

, you wrote:

> I am not excited about the idea of surgery & have been trying to manage with

just changing my eating habits.

>

>

I can relate to your comment. I too was " not too excited about the idea of

surgery " .

Here is some of the thinking I did that changed my mind:

* I accepted that achalasia wasn't going to 'go away'.

* No other solution (herbal, acupuncture, Nifedipine, dilatations ...) provided

lasting relief.

* I accepted that no cure was going to be found soon enough.

* My ability to eat deteriorated to the point where social situations (they

invariably involve food) became too difficult and stressful to enjoy.

* I am sometimes very scared that I might aspirate food during regurgitation and

vomiting.

* I found a doctor I trust who has very substantial experience with achalasia

and a very good track record. This is a great comfort to me.

* I want to enjoy my life.

It took me years to arrive at this, to be ready for surgery. I suspect many

have gone through a similar process.

--Rich (Chicago)

[Guest guest]

I will add a 'Part 2' here.

Prior to deciding to go forward with surgery, like many here, I found a few

foods that worked for me: small salads with a good amount of dressing, soup

(without chunks of anything), breakfast cereal with milk, room temperature

water, kid-sized portions of pasta, frozen dinners, fruit & yogurt 'parfaits'

and so forth.

I am probably good for one solid-food meal a day and have to pretty much avoid

beef, chicken, sandwich bread, etc. though small amounts are possible. I need

lots of time to eat. A half-hour is rushing it for me. An hour is better.

I keep a ready supply of Boost (Ensure) on hand and have been relying on it for

maintaining my weight and some level of nutrition. It makes a good midnight

snack .

For me, stress level is a factor, too. For eating to work well, I need to be

relaxed and not rushed. I probably do my best with it while reading and/or

listening to music.

I know you are looking for concrete examples of how folks have managed ...

Perhaps this will help while you are deciding what to do.

--Rich (Chicago)

[Guest guest]

The seriousness of your condition calls for extreme actions. If I were you, I'd

get the surgery immediately and then file for bankruptcy. I'm so tired of the

system screwing us. Get yourself taken care of and put the screws to them!

[Guest guest]

I don't think there is anything wrong with it for people who can digest the combination of proteins with fruits (there is a subset of people who have digestive issues when they combine fruits with protein).But in general, the reason many people don't add yogurt is because the concept of "Green Smoothies" was made famous by a raw foodist ( Boutenko) who advises against it.

Blessings,Lea Ann SavageSatellite Beach, FL(321) 773-7088 (home)(321-961-9219 (cell)))><'>www.VitamixLady.comwww..com<))><

On Mar 31, 2011, at 12:50 PM, carol wrote:

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

[Guest guest]

Welcome, Carol-so glad you joined us. Most people don't add yogurt simply because it is unnecessary and detracts from a true green smoothie, in that the dairy prevents many of the nutrients from absorbing as quickly as they do without it. Also, yogurt is largely not near the "health food" that most people think it is. Commercial yogurt rarely contains any true active cultures, and often contains loads of chemical thickeners and preservatives. That said, I OFTEN add homemade raw milk yogurt to my smoothies, so it is a matter of preference. If you choose to add it, please be sure to get a good quality, TRUE yogurt that doesn't contain fillers and additives, but does contain active, live cultures.

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

[Guest guest]

In my opinion it is unnecessary and adds unneeded calories. welcome to our group! Gab "The greatness of a nation and its moral progress can be judged by the way its animals are treated." ~ Mahatma Ghandi From: carol <pasolucy@...> Sent: Thu, March 31, 2011 9:50:16 AMSubject: New Member

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

[Guest guest]

It's a matter of taste, I think, plus lots of people want to reduce their dairy intake and are looking to determine how alternatives might taste. I actually like yogurt (and many other dairy products) a lot but rarely use it in smoothies; one exception is a lovely cantaloupe smoothie that's a big favorite. Play around, get creative, and see what suits you.

Welcome to the group!

New Member

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

[Guest guest]

I think you can add what you want to. I add homemade kefir and some almond milk to mine. It makes a creamier smoothie. That's the beauty of it all. You can add what you want. I add some coconut oil, sesame seeds and flax seed too. Plus the greens.

I sure made a yummy one yesterday. Every day it has a bit different taste.

k

-- New Member

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

------------------------------------

[Guest guest]

's right--get creative! If there's another milk or other liquid you like that you think will combine well with your other ingredients, go for it! (After all, how bad can it be?) Cater to your imagination and taste buds and don't be afraid to try something brand new, even if you're a bit unsure about it!

BTW, in case I missed anyone, a big welcome to our new members--we're very happy to have you here.

New Member

I live in Oregon, hubby and I are retired, we used to raise, train, and sell Paso Fino horses but are not breeding any more and have just a few young ones left to train and sell. We are just going to go out and camp and play from now on. My husband is recovering from surgery for a carcinoid tumor and we both could lose some weight. I am hoping that with the VitaMix that I can get in the habit of shopping to eat a more healthy diet.

I saw a demo at Costco and was very impressed. I did not buy one at that time, I came home and did a lot of research on the internet. It was the last day of the demo at costco so could not go back at the demo price. I looked on ebay and found this " Vitamix Vita-Mix Model VM0103 Total Nutrition Center". I have ordered it and it should be here on Monday. In the mean time I have joined this group and am going through a lot of the older posts to try to find out more information. One thing that I have not yet seen discussed much is adding something like yogurt to a fruit smoothie for the added protein. You can get non fat or low fat yogurt and I am wondering why that does not seem to be a popular thing to do.

[Guest guest]

by visual disturbances do you mean you have hallucinations?

>

> Hi everyone, just thought I'd introduce myself to the group. My name is

Cheryl and I live in Mid Wales, UK and was diagnosed with ME just over two years

ago. The onset of it became immediately apparent after undergoing my third back

surgery in May 2008(now waiting to undergo further spinal surgery).

>

> I no longer work due to both the ME/CFS and my prolapsed discs. My Civil

Partner works full time but is also my carer, also have a carer who visit

Mon-Fri to make my mid day meal as I am too exxhausted.

>

> When I am not sleeping, suffering from brain fog, visual disturbances etc, I

am trying to finish my BSc degree and try my hand at various crafts.

>

by visual disturbances do you mean you have hallucinations?

[Guest guest]

Most of the green smoothies I make only taste of fruit. Check out Lea Ann's

recipes on her website.

Terry

Sent from my iPad

On Apr 12, 2011, at 11:18 AM, " audrramon " <audrramon@...> wrote:

> Hello all, I recently purchased a Vitamix from QVC and which will be arriving

soon. The main reason I shelled out $450 for this machine is that I'm one of

those people that hate veggies, especially " green " veggies. I've been doing

some research on green smoothies and wanted to see if anyone has a tried and

true green smoothie recipe that will completely mask the taste of veggies -

maybe something kids would really like. Thanks!

>

>

>

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

>

>

[Guest guest]

mikem wrote:

> by visual disturbances do you mean you have hallucinations?

Visual disturbances are extremely common in PWCs. They are not

hallucinations. They are everything from double vision to blurry vision

to seeing spots or other shapes, strong after-images from bright lights,

etc. They can be due to diminished blood flow, damage to the visual

cortex, etc.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

@>----------<---------->-----------------------<----------<----------<@

MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida