Re: Heller-Dor scheduled on Tuesday

[Guest guest]

First of sorry you have to go through this. In your mention of allergies have

you been tested for Chagas, Lyme or mast cell disease?

I have an acquaintance that developed dysphagia, broke out in hives, allergic

reaction, sinusitis and it was recently discovered that she has mast cell

disease.

Donna Hall

>

> Hi all,

>

> I'm pretty new to this group and have been reading everyone's messages for a

month or so. I had never heard of achalasia before I was diagnosed in late

October.

>

> I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70 lbs

total since the problems started. I started seeing doctors a few months later

and had a difficult time finding a good doctor. The one that I went to first was

rated " Best in Dallas " by a local magazine and he gave me the major blow-off. We

did a EGD and they found candida in my esophagus. He treated the candida and

continued to treat me for reflux. (I had the " foaming " , I thought it was acid,

so it's not totally his fault) He then told me he hadn't believed me when I told

him previously that Aciphex hadn't helped me, so I decided to find a new doctor.

A bunch of doctors told me that my eating problems were psychosomatic and tried

to give me anti-anxiety meds.

>

> I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. (After

reading the symptoms of the disorder, I'm surprised that he and every other

doctor didn't know it immediately, but whatever.) He referred me to one surgeon

but we decided to go with another, Dr. Westmoreland right here in Dallas.

>

> Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

>

> I wanted to ask (after telling my life story I guess) - if you've had the

procedure, is there anything you wished you knew going in?

>

> Also - I have had frequent recurring sinus infections for about 6 years. This

coincides with my move to Texas from Michigan, so even though I don't have any

allergies, I just thought it was environmental. Could the sinus infections be

related somehow? I know there is a lot of drainage that goes on and perhaps it

is impeded by the achalasia.

>

> Thanks in advance for any thoughts or advice!!

>

[Guest guest]

<p>We all had that experience with doctors.</p>

<p>Being sleep deprived really messed me up. It's been a lot better since the

surgery.</p>

<p>Fermenting food getting backed up into the respiratory tract is the worst! It

really hurts the sinuses and nothing is more scary than waking up choking

because of aspirating stuff that doesn't belong in the esaphagous.</p>

<p>A lot of meds are available in liquid form. Pharmacists are usually better to

talk to about that than docs. They can tell you what to ask the doc to

prescribe. I never take a pill at night, unless I want to feel it until morning.

</p>

<p>Good luck with everything.</p>

<p>Dan<br><br></p>

<p>Sent from on Android</p>

[Guest guest]

Robin,

I wish you luck with your Myotomy on Tuesday. I dont' know anything about your

doctor, but I hope he is very experienced with myotomy surgery. Have you asked

him how many he has performed?

As far as the surgery is concerned, its not bad at all. I just had mine on

October 13th with Dr. Luketich in Pittsburgh. I was in surgery for a little over

2 hours. He also performed a Dor fundoplication.

The first couple of hours in recovery were hard because it was painful to

breathe. But the pain meds helped a lot with that.

I brought a pillow with me to the hospital and that helped with getting in and

out of bed, any bumps in the car or on the plane. The pillow was pressed on my

abdomen at all times for about 3-4 days.

I had 5 very tiny incisions on my abdomen, one was inside my belly button. They

are healing to the point where you can't really see them.

I was on clear liquids for 3 days post op. Full liquids (including yogurt,

puddings, smoothies, pureed soups for 2 weeks post op and then soft solids for

what will be 3 months. But I am eating pretty much everything except for steak

and salads right now.

I feel great. I didn't need pains meds after 4 days post op. I had some left

shoulder pain due to healing and now if I eat too much as food passes through

the LES I get the shoulder pain. Its not bad at all.

I had some reflux after the surgery which lasted about 3 weeks. I am no longer

taking Pepcid AC for this.

I sleep on a wedge at night but I feel like I don't need to. My esophagus seems

pretty empty before I go to bed and when I wake up. I do it just for precaution.

All I can say is take it easy after surgery. It may feel like its hard to

swallow at first but you need to let the swelling go down. As time goes on it

gets easier and easier to swallow.

I wish you all the best and hope that you get major relief from this. You have

suffered for too long.

Please keep us posted.

Cara

>

> Hi all,

>

> I'm pretty new to this group and have been reading everyone's messages for a

month or so. I had never heard of achalasia before I was diagnosed in late

October.

>

> I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70 lbs

total since the problems started. I started seeing doctors a few months later

and had a difficult time finding a good doctor. The one that I went to first was

rated " Best in Dallas " by a local magazine and he gave me the major blow-off. We

did a EGD and they found candida in my esophagus. He treated the candida and

continued to treat me for reflux. (I had the " foaming " , I thought it was acid,

so it's not totally his fault) He then told me he hadn't believed me when I told

him previously that Aciphex hadn't helped me, so I decided to find a new doctor.

A bunch of doctors told me that my eating problems were psychosomatic and tried

to give me anti-anxiety meds.

>

> I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. (After

reading the symptoms of the disorder, I'm surprised that he and every other

doctor didn't know it immediately, but whatever.) He referred me to one surgeon

but we decided to go with another, Dr. Westmoreland right here in Dallas.

>

> Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

>

> I wanted to ask (after telling my life story I guess) - if you've had the

procedure, is there anything you wished you knew going in?

>

> Also - I have had frequent recurring sinus infections for about 6 years. This

coincides with my move to Texas from Michigan, so even though I don't have any

allergies, I just thought it was environmental. Could the sinus infections be

related somehow? I know there is a lot of drainage that goes on and perhaps it

is impeded by the achalasia.

>

> Thanks in advance for any thoughts or advice!!

>

[Guest guest]

Thanks for that post Cara, I will meeting with my surgeon a week from today,

surgery to follow and it's good to know what to expect post-surgical.

I don't understand something, I have trouble eating a lot of things except

mexican food, such as enchaladas and chile rellenos. I have ate this since

onset and always kept it down. This week I have had it 3 days in a roll and

still keeping it down with little to no regurgitation. I don't suffer with

reflux except I do get the foamy mucous on occasion. My husband said instead of

having surgery perhaps we should just move to Mexico. Strange, but it must be

the texture. Not the best nutrition, but it fills the tummy.

Donna

> >

> > Hi all,

> >

> > I'm pretty new to this group and have been reading everyone's messages for a

month or so. I had never heard of achalasia before I was diagnosed in late

October.

> >

> > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

lbs total since the problems started. I started seeing doctors a few months

later and had a difficult time finding a good doctor. The one that I went to

first was rated " Best in Dallas " by a local magazine and he gave me the major

blow-off. We did a EGD and they found candida in my esophagus. He treated the

candida and continued to treat me for reflux. (I had the " foaming " , I thought it

was acid, so it's not totally his fault) He then told me he hadn't believed me

when I told him previously that Aciphex hadn't helped me, so I decided to find a

new doctor. A bunch of doctors told me that my eating problems were

psychosomatic and tried to give me anti-anxiety meds.

> >

> > I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. (After

reading the symptoms of the disorder, I'm surprised that he and every other

doctor didn't know it immediately, but whatever.) He referred me to one surgeon

but we decided to go with another, Dr. Westmoreland right here in Dallas.

> >

> > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

> >

> > I wanted to ask (after telling my life story I guess) - if you've had the

procedure, is there anything you wished you knew going in?

> >

> > Also - I have had frequent recurring sinus infections for about 6 years.

This coincides with my move to Texas from Michigan, so even though I don't have

any allergies, I just thought it was environmental. Could the sinus infections

be related somehow? I know there is a lot of drainage that goes on and perhaps

it is impeded by the achalasia.

> >

> > Thanks in advance for any thoughts or advice!!

> >

>

[Guest guest]

Hi Donna! 

Funny how before surgery I could only eat certain foods too!  My menu was so

very limited, many things just caused me hours of regurgitation.  I stayed away

from spicey things and sour things.  Also avoided bready things.  I also

toasted

my bread or ate crispy taco's.  After the Myotomy Hellers/ Dor, I can eat all

kinds of things now.  No more foam...it's a blessed relief!  

I find that I have to chew extra on meats and salads...those two things are a

bit of a challenge still, but otherwise I can finally eat and have amazingly

more energy than I have had in years.  My tummy took awhile to adjust to eating

again...at first I had weird stomach issues after surgery, but now at over 3

months it is doing much better, so take it slow after surgery and eat more bland

for awhile until you know how it will go with you and your body.  I can also

sleep on one pillow at night, no more chokking. 

Wish you all the best!  Keep us posted! 

Julee So Calif.

________________________________

From: Donna <donna9513@...>

achalasia

Sent: Fri, December 3, 2010 2:02:17 PM

Subject: Re: Heller-Dor scheduled on Tuesday

 

Thanks for that post Cara, I will meeting with my surgeon a week from today,

surgery to follow and it's good to know what to expect post-surgical.

I don't understand something, I have trouble eating a lot of things except

mexican food, such as enchaladas and chile rellenos. I have ate this since onset

and always kept it down. This week I have had it 3 days in a roll and still

keeping it down with little to no regurgitation. I don't suffer with reflux

except I do get the foamy mucous on occasion. My husband said instead of having

surgery perhaps we should just move to Mexico. Strange, but it must be the

texture. Not the best nutrition, but it fills the tummy.

Donna

> >

> > Hi all,

> >

> > I'm pretty new to this group and have been reading everyone's messages for a

>month or so. I had never heard of achalasia before I was diagnosed in late

>October.

> >

> > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

>lbs total since the problems started. I started seeing doctors a few months

>later and had a difficult time finding a good doctor. The one that I went to

>first was rated " Best in Dallas " by a local magazine and he gave me the major

>blow-off. We did a EGD and they found candida in my esophagus. He treated the

>candida and continued to treat me for reflux. (I had the " foaming " , I thought

it

>was acid, so it's not totally his fault) He then told me he hadn't believed me

>when I told him previously that Aciphex hadn't helped me, so I decided to find

a

>new doctor. A bunch of doctors told me that my eating problems were

>psychosomatic and tried to give me anti-anxiety meds.

>

> >

> > I finally found a good doctor and he had a motility test done and a barium

>swallow and he said he was surprised to find that it was achalasia. (After

>reading the symptoms of the disorder, I'm surprised that he and every other

>doctor didn't know it immediately, but whatever.) He referred me to one surgeon

>but we decided to go with another, Dr. Westmoreland right here in Dallas.

>

> >

> > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

>because I am in a bad way. My weight has maintained for basically a year and a

>half, but I am tired all the time, I don't keep almost anything down, I have

>tremendous bags under my eyes from the dehydration and lack of sleep (constant

>choking all night lately even if I regurgitate before bed). I can't keep any of

>my prescriptions down with any consistency so that can't be helping my other

>health conditions.

> >

> > I wanted to ask (after telling my life story I guess) - if you've had the

>procedure, is there anything you wished you knew going in?

> >

> > Also - I have had frequent recurring sinus infections for about 6 years.

This

>coincides with my move to Texas from Michigan, so even though I don't have any

>allergies, I just thought it was environmental. Could the sinus infections be

>related somehow? I know there is a lot of drainage that goes on and perhaps it

>is impeded by the achalasia.

>

> >

> > Thanks in advance for any thoughts or advice!!

> >

>

[Guest guest]

Hi Donna,

I had my myotomy last Summer and a dilation 6 weeks later.  My life has

improved

considerably.  No more foam or spitting up after every meal and I can eat most

things if I eat consciously, chew carefully and drink water after a fewbites. 

My only problem is leafy greens like baby lettuce, but not romaine as in ceaser

salad.  Who knows why.  It was a great decision to do it.

________________________________

From: Montoya <medhelpinfo@...>

achalasia

Sent: Fri, December 3, 2010 7:11:08 PM

Subject: Re: Re: Heller-Dor scheduled on Tuesday

 

Hi Donna! 

Funny how before surgery I could only eat certain foods too!  My menu was so

very limited, many things just caused me hours of regurgitation.  I stayed away

from spicey things and sour things.  Also avoided bready things.  I also

toasted

my bread or ate crispy taco's.  After the Myotomy Hellers/ Dor, I can eat all

kinds of things now.  No more foam...it's a blessed relief!  

I find that I have to chew extra on meats and salads...those two things are a

bit of a challenge still, but otherwise I can finally eat and have amazingly

more energy than I have had in years.  My tummy took awhile to adjust to eating

again...at first I had weird stomach issues after surgery, but now at over 3

months it is doing much better, so take it slow after surgery and eat more bland

for awhile until you know how it will go with you and your body.  I can also

sleep on one pillow at night, no more chokking. 

Wish you all the best!  Keep us posted! 

Julee So Calif.

________________________________

From: Donna <donna9513@...>

achalasia

Sent: Fri, December 3, 2010 2:02:17 PM

Subject: Re: Heller-Dor scheduled on Tuesday

 

Thanks for that post Cara, I will meeting with my surgeon a week from today,

surgery to follow and it's good to know what to expect post-surgical.

I don't understand something, I have trouble eating a lot of things except

mexican food, such as enchaladas and chile rellenos. I have ate this since onset

and always kept it down. This week I have had it 3 days in a roll and still

keeping it down with little to no regurgitation. I don't suffer with reflux

except I do get the foamy mucous on occasion. My husband said instead of having

surgery perhaps we should just move to Mexico. Strange, but it must be the

texture. Not the best nutrition, but it fills the tummy.

Donna

> >

> > Hi all,

> >

> > I'm pretty new to this group and have been reading everyone's messages for a

>month or so. I had never heard of achalasia before I was diagnosed in late

>October.

> >

> > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

>lbs total since the problems started. I started seeing doctors a few months

>later and had a difficult time finding a good doctor. The one that I went to

>first was rated " Best in Dallas " by a local magazine and he gave me the major

>blow-off. We did a EGD and they found candida in my esophagus. He treated the

>candida and continued to treat me for reflux. (I had the " foaming " , I thought

it

>

>was acid, so it's not totally his fault) He then told me he hadn't believed me

>when I told him previously that Aciphex hadn't helped me, so I decided to find

a

>

>new doctor. A bunch of doctors told me that my eating problems were

>psychosomatic and tried to give me anti-anxiety meds.

>

> >

> > I finally found a good doctor and he had a motility test done and a barium

>swallow and he said he was surprised to find that it was achalasia. (After

>reading the symptoms of the disorder, I'm surprised that he and every other

>doctor didn't know it immediately, but whatever.) He referred me to one surgeon

>but we decided to go with another, Dr. Westmoreland right here in Dallas.

>

> >

> > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

>because I am in a bad way. My weight has maintained for basically a year and a

>half, but I am tired all the time, I don't keep almost anything down, I have

>tremendous bags under my eyes from the dehydration and lack of sleep (constant

>choking all night lately even if I regurgitate before bed). I can't keep any of

>my prescriptions down with any consistency so that can't be helping my other

>health conditions.

> >

> > I wanted to ask (after telling my life story I guess) - if you've had the

>procedure, is there anything you wished you knew going in?

> >

> > Also - I have had frequent recurring sinus infections for about 6 years.

This

>

>coincides with my move to Texas from Michigan, so even though I don't have any

>allergies, I just thought it was environmental. Could the sinus infections be

>related somehow? I know there is a lot of drainage that goes on and perhaps it

>is impeded by the achalasia.

>

> >

> > Thanks in advance for any thoughts or advice!!

> >

>

[Guest guest]

Thanks everyone for the words of encouragement. This group is very informative,

educational and supportive.

I surely miss my salads.

When I meet with my surgeon next week I almost would prefer if he just held me

hostage and proceeded instead having to think about it in the weeks following

initial visit.

Donna Hall

> > >

> > > Hi all,

> > >

> > > I'm pretty new to this group and have been reading everyone's messages for

a

>

> >month or so. I had never heard of achalasia before I was diagnosed in late

> >October.

> > >

> > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

> >lbs total since the problems started. I started seeing doctors a few months

> >later and had a difficult time finding a good doctor. The one that I went to

> >first was rated " Best in Dallas " by a local magazine and he gave me the major

> >blow-off. We did a EGD and they found candida in my esophagus. He treated the

> >candida and continued to treat me for reflux. (I had the " foaming " , I thought

it

> >

> >was acid, so it's not totally his fault) He then told me he hadn't believed

me

> >when I told him previously that Aciphex hadn't helped me, so I decided to

find a

> >

> >new doctor. A bunch of doctors told me that my eating problems were

> >psychosomatic and tried to give me anti-anxiety meds.

> >

> > >

> > > I finally found a good doctor and he had a motility test done and a barium

> >swallow and he said he was surprised to find that it was achalasia. (After

> >reading the symptoms of the disorder, I'm surprised that he and every other

> >doctor didn't know it immediately, but whatever.) He referred me to one

surgeon

>

> >but we decided to go with another, Dr. Westmoreland right here in Dallas.

> >

> > >

> > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

> >because I am in a bad way. My weight has maintained for basically a year and

a

> >half, but I am tired all the time, I don't keep almost anything down, I have

> >tremendous bags under my eyes from the dehydration and lack of sleep

(constant

> >choking all night lately even if I regurgitate before bed). I can't keep any

of

>

> >my prescriptions down with any consistency so that can't be helping my other

> >health conditions.

> > >

> > > I wanted to ask (after telling my life story I guess) - if you've had the

> >procedure, is there anything you wished you knew going in?

> > >

> > > Also - I have had frequent recurring sinus infections for about 6 years.

This

> >

> >coincides with my move to Texas from Michigan, so even though I don't have

any

> >allergies, I just thought it was environmental. Could the sinus infections be

> >related somehow? I know there is a lot of drainage that goes on and perhaps

it

> >is impeded by the achalasia.

> >

> > >

> > > Thanks in advance for any thoughts or advice!!

> > >

> >

>

>

[Guest guest]

Hi Robin,

I too was diagnosed with reflux, before a friend told me about Achalasia,

because her brother-in-law had it. I lost 60 lbs and had lots of problems

keeping my food down, sleeping because of coughing up all night. Then I had a

dilation on 4/22/10.

Because another friend saw how bad I looked, she advised that I see her teacher

who is a Traditional Chinese Medicine doc for an evaluation which I did in

March. After an evaluation of being totally depleted (half dead energetically

and nutritionally, dried out and having too much heat (in TCM terms),he advised

that I totally change my diet to mostly soups of pureed veggies and a little

meat. No chocolate, spices, cinnamon, pop. Cut down on salt, sugar, and fat

etc. Lots of rest. Tried to take mostly liquid meds.

And he gave me Chinese herbs to drink and oils with herbs in them to put on my

skin--especially the chest. These herbs helped with the spasms. I'm still on

the herbs and follow some of the diet. I've gained back more weight than I

wanted to, but I am feeling really great.

My point in telling you this is to go ahead and get the surgery, but you may

need a lot more than that to really recover from what you've been through. My

GI doc who is great at doing dilations did not tell me anything on how to get my

strength back and neither did the MD internist who I've seen for years and who

did blood tests for me in Jan/Feb 2010 and found nothing wrong. Coworkers were

telling me I looked anemic. Western medicine looks at the esophagus and fixes

that, but not at the whole person.

I had to change much of what I was doing in order to heal.

Hopefully, you know that your surgion has lots of experience with doing this

specific myotomy. Wishing you much success in your surgery. Just go in there

with positive thoughts that all will work out great.

Blessings

Eva in Chicagoland

> I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70 lbs

total since the problems started. I started seeing doctors a few months later

and had a difficult time finding a good doctor.

>

> I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. He referred

me to one surgeon but we decided to go with another, Dr. Westmoreland right here

in Dallas.

>

> Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

>

>

[Guest guest]

Eva,

Is it my understanding that you have not had surgery, just dilations and Chinese

Medicine?

BTW my Mother-in-law (deceased) was named Eva. She passed away many years ago

after having surgery to have a large percentage of her lower intestines taken

out due to them being non-functioning/diseased. It is ironic that my esophagus

is the same, my Husband hasn't verbally spoke of it, but I can only imagine what

his thoughts are on this irony.

Would you send me a list of the herbs and oils you use?

Donna Hall 61+years old (Mentally I have been young longer than old, only my

body knows for sure)

Missouri

>

> > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

lbs total since the problems started. I started seeing doctors a few months

later and had a difficult time finding a good doctor.

> >

> > I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. He referred

me to one surgeon but we decided to go with another, Dr. Westmoreland right here

in Dallas.

> >

> > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

> >

> >

>

[Guest guest]

Thanks to Eva and everyone for your helpful responses. This group is so

informative!

Yes, Dr. Westmoreland has done about 200 of these procedures. This is why we

stuck with him instead of the surgeon that my Gastro referred me to - he had

only done about 50 or so.

I will keep all your emails handy as I manage my way through recovery and keep

you all posted as much as I can

>

> > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

lbs total since the problems started. I started seeing doctors a few months

later and had a difficult time finding a good doctor.

> >

> > I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. He referred

me to one surgeon but we decided to go with another, Dr. Westmoreland right here

in Dallas.

> >

> > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

> >

> >

>

[Guest guest]

Eva wrote:

> ... Western medicine looks at the esophagus and fixes that, but not at the

whole person. ...

I wouldn't say it is a thing of " western " medicine. I would say it may

be a thing of specialists in western medicine. I wouldn't go to my

surgeon for help with nutritional problems, but I would expect my

primary doctor to listen and either tell me it isn't a problem, try to

find the right help, or say there is nothing that can be done. I would

not expect him to ignore the indirect problems caused by achalasia. Your

doctor may wait until you ask for help with these problems. Unless you

are paying out of pocket there may be limits to what he can justify

billing for. For spasms it may come down to whatever works for you

because there seems to be no one thing that works for everyone. If herbs

and oil work for you great but it may be something completely different

for someone else. I doubt there is any " whole person " approach that will

change that.

notan

[Guest guest]

Robin wrote:

> - if you've had the procedure, is there anything you wished you knew going

in?

Yes, I should have demanded something to prevent nausea. I had suggested

that pain medication could make me nauseated but I was assured that my

previous situation was different and not to worry. I was retching during

the night after the surgery. That can do damage but surprisingly didn't

feel as painful as you would think. Then I got the shot for nausea. If

you have any history of pain meds causing nausea demand the medication

for it. I now have a paraesophageal hernia which may have been the

result of that retching.

If your work involves heavy lifting tell your surgeon how much you lift.

You may need more time off than is usual. My surgeon did not want me

back at work for 6 weeks.

> ... Could the sinus infections be related somehow? ...

Yes. Food trapped in the esophagus is a breading ground for all kinds of

things. It is not hard to figure that they can find their way to the

sinuses especially when you have problems while sleeping.

notan

[Guest guest]

Donna Good luck with everything and please stay with the group and keep us

posted.  For me, the surgery was the BEST thing to come along in a very long

time...I feel so much better these days!  I did not fully realize how bad off I

was...I knew I was sick and could barely eat, yet I was doing it for soooo long

that it was normal to me.  Now that I can eat food again,  I feel so much

better

and have tons of more energy. 

Take care, Julee So Calif.

________________________________

From: Donna <donna9513@...>

achalasia

Sent: Sat, December 4, 2010 9:46:25 AM

Subject: Re: Heller-Dor scheduled on Tuesday

 

Thanks everyone for the words of encouragement. This group is very informative,

educational and supportive.

I surely miss my salads.

When I meet with my surgeon next week I almost would prefer if he just held me

hostage and proceeded instead having to think about it in the weeks following

initial visit.

Donna Hall

> > >

> > > Hi all,

> > >

> > > I'm pretty new to this group and have been reading everyone's messages for

>a

>

>

> >month or so. I had never heard of achalasia before I was diagnosed in late

> >October.

> > >

> > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

> >lbs total since the problems started. I started seeing doctors a few months

> >later and had a difficult time finding a good doctor. The one that I went to

> >first was rated " Best in Dallas " by a local magazine and he gave me the major

> >blow-off. We did a EGD and they found candida in my esophagus. He treated the

> >candida and continued to treat me for reflux. (I had the " foaming " , I thought

>it

>

> >

> >was acid, so it's not totally his fault) He then told me he hadn't believed

me

>

> >when I told him previously that Aciphex hadn't helped me, so I decided to

find

>a

>

> >

> >new doctor. A bunch of doctors told me that my eating problems were

> >psychosomatic and tried to give me anti-anxiety meds.

> >

> > >

> > > I finally found a good doctor and he had a motility test done and a barium

> >swallow and he said he was surprised to find that it was achalasia. (After

> >reading the symptoms of the disorder, I'm surprised that he and every other

> >doctor didn't know it immediately, but whatever.) He referred me to one

>surgeon

>

>

> >but we decided to go with another, Dr. Westmoreland right here in Dallas.

> >

> > >

> > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

> >because I am in a bad way. My weight has maintained for basically a year and

a

>

> >half, but I am tired all the time, I don't keep almost anything down, I have

> >tremendous bags under my eyes from the dehydration and lack of sleep

(constant

>

> >choking all night lately even if I regurgitate before bed). I can't keep any

>of

>

>

> >my prescriptions down with any consistency so that can't be helping my other

> >health conditions.

> > >

> > > I wanted to ask (after telling my life story I guess) - if you've had the

> >procedure, is there anything you wished you knew going in?

> > >

> > > Also - I have had frequent recurring sinus infections for about 6 years.

>This

>

> >

> >coincides with my move to Texas from Michigan, so even though I don't have

any

>

> >allergies, I just thought it was environmental. Could the sinus infections be

> >related somehow? I know there is a lot of drainage that goes on and perhaps

it

>

> >is impeded by the achalasia.

> >

> > >

> > > Thanks in advance for any thoughts or advice!!

> > >

> >

>

>

[Guest guest]

Julee, Last night I actually was able to get down a ground sirloin patty with

cheese, baked potato with sour cream and small cream puffs for desert, with no

problems. It's times like this that makes me wonder if I shouldn't delay

surgery.

I still think my Achalasia variant is a Neurogenic Achalasia due to the other

disorder I have Mal de Debarquement. When the seas are calmer and my anxiety

level is low is when I can eat better.

Going out to eat is still scary, because the noise, movement of a busy

environment elevates the rocking sensation and in turn aggravates my eating

ability.

Of course being a cave-bat hermit is no life. I still intend to keep my appt.

with surgeon and will see how the trip/eating goes when we go on our trip. I

have had individuals say put surgery off as long as possible and others

saying..........glad I had it done, don't put it off.

Donna

Missouri

Would rather be at the beach!

> > > >

> > > > Hi all,

> > > >

> > > > I'm pretty new to this group and have been reading everyone's messages

for

> >a

> >

> >

> > >month or so. I had never heard of achalasia before I was diagnosed in late

> > >October.

> > > >

> > > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost

70

>

> > >lbs total since the problems started. I started seeing doctors a few months

> > >later and had a difficult time finding a good doctor. The one that I went

to

> > >first was rated " Best in Dallas " by a local magazine and he gave me the

major

>

> > >blow-off. We did a EGD and they found candida in my esophagus. He treated

the

>

> > >candida and continued to treat me for reflux. (I had the " foaming " , I

thought

> >it

> >

> > >

> > >was acid, so it's not totally his fault) He then told me he hadn't believed

me

> >

> > >when I told him previously that Aciphex hadn't helped me, so I decided to

find

> >a

> >

> > >

> > >new doctor. A bunch of doctors told me that my eating problems were

> > >psychosomatic and tried to give me anti-anxiety meds.

> > >

> > > >

> > > > I finally found a good doctor and he had a motility test done and a

barium

>

> > >swallow and he said he was surprised to find that it was achalasia. (After

> > >reading the symptoms of the disorder, I'm surprised that he and every other

> > >doctor didn't know it immediately, but whatever.) He referred me to one

> >surgeon

> >

> >

> > >but we decided to go with another, Dr. Westmoreland right here in Dallas.

> > >

> > > >

> > > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it

helps

> > >because I am in a bad way. My weight has maintained for basically a year

and a

> >

> > >half, but I am tired all the time, I don't keep almost anything down, I

have

> > >tremendous bags under my eyes from the dehydration and lack of sleep

(constant

> >

> > >choking all night lately even if I regurgitate before bed). I can't keep

any

> >of

> >

> >

> > >my prescriptions down with any consistency so that can't be helping my

other

> > >health conditions.

> > > >

> > > > I wanted to ask (after telling my life story I guess) - if you've had

the

> > >procedure, is there anything you wished you knew going in?

> > > >

> > > > Also - I have had frequent recurring sinus infections for about 6 years.

> >This

> >

> > >

> > >coincides with my move to Texas from Michigan, so even though I don't have

any

> >

> > >allergies, I just thought it was environmental. Could the sinus infections

be

>

> > >related somehow? I know there is a lot of drainage that goes on and perhaps

it

> >

> > >is impeded by the achalasia.

> > >

> > > >

> > > > Thanks in advance for any thoughts or advice!!

> > > >

> > >

> >

> >

[Guest guest]

Notan, you are right in what you say. The herbs and treatment that the Chinese

doctor is giving me is specific to what he sees to be the problem with me.

These same herbs may not work for someone else with Achalasia. However, they do

work for spasms (which is common to A) but they also work on the excessive

" heat " that I have and the " dryness " -- terms specific to TCM (Traditional

Chinese Medicine). It is very expensive for the herbs and acupuncture which are

all out of pocket.

Thanks for your clarifications.

> > ... Western medicine looks at the esophagus and fixes that, but not at the

whole person. ...

>

> I wouldn't say it is a thing of " western " medicine. I would say it may

> be a thing of specialists in western medicine. I wouldn't go to my

> surgeon for help with nutritional problems, but I would expect my

> primary doctor to listen and either tell me it isn't a problem, try to

> find the right help, or say there is nothing that can be done. I would

> not expect him to ignore the indirect problems caused by achalasia. Your

> doctor may wait until you ask for help with these problems. Unless you

> are paying out of pocket there may be limits to what he can justify

> billing for. For spasms it may come down to whatever works for you

> because there seems to be no one thing that works for everyone. If herbs

> and oil work for you great but it may be something completely different

> for someone else. I doubt there is any " whole person " approach that will

> change that.

>

> notan

>

[Guest guest]

Donna, I'm almost 63 and have not had the A all the long and have not had

surgery. I can't send you the list of herbs because you need to be under the

care of a TCM (Traditional Chinese Medicine) doc for this. The herbs are very

specific for my " symptoms " . I am grateful to have found a really good TCM doc.

See my response to Notan of today.

Eva

> >

> > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost 70

lbs total since the problems started. I started seeing doctors a few months

later and had a difficult time finding a good doctor.

> > >

> > > I finally found a good doctor and he had a motility test done and a barium

swallow and he said he was surprised to find that it was achalasia. He referred

me to one surgeon but we decided to go with another, Dr. Westmoreland right here

in Dallas.

> > >

> > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it helps

because I am in a bad way. My weight has maintained for basically a year and a

half, but I am tired all the time, I don't keep almost anything down, I have

tremendous bags under my eyes from the dehydration and lack of sleep (constant

choking all night lately even if I regurgitate before bed). I can't keep any of

my prescriptions down with any consistency so that can't be helping my other

health conditions.

> > >

> > >

> >

>

[Guest guest]

Donna, you started to have swallowing problems in 2008?  Now you have been

diagnosised with achalasia (variant), did your manometry test show complete

failure?  I ask this because achalasia can for some of us, roller coaster

between better days and worse days.  I've had it for 22yrw and never had any

surgeries until this past August.  I had times when it seemed okay, and I

didn't

want to go for surgery or even consider it...I was very scared of anyone messing

with my esophagus and possibly turning things worse, so I can understand how you

feel. 

But, over time...it did get worse and it was a slow process for me....I began to

avoid going out to eat with others, I cooked for my family, but really I ate

simply to survive most of the time.  Food was painful...I had to push and push

it down with lots of liquid all the time, and it would get stuck...it was

embarrassing.  It does not get better, it will get worse.  But, it's important

to have the surgeon explain why he thinks this surgery will help you.  Mine

seemed to be a varient when it first started, then it changed over time and grew

worse.  I don't think any of us are exactly the same, but if yours does get

worse, then what?  There will be good days and bad days, it does not mean that

the achalasia is going away.  Talk to the doctor and then make your decision. 

Get all the facts. 

Take care, Julee So Calif. 

________________________________

From: Donna <donna9513@...>

achalasia

Sent: Mon, December 6, 2010 5:35:10 AM

Subject: Re: Heller-Dor scheduled on Tuesday

 

Julee, Last night I actually was able to get down a ground sirloin patty with

cheese, baked potato with sour cream and small cream puffs for desert, with no

problems. It's times like this that makes me wonder if I shouldn't delay

surgery.

I still think my Achalasia variant is a Neurogenic Achalasia due to the other

disorder I have Mal de Debarquement. When the seas are calmer and my anxiety

level is low is when I can eat better.

Going out to eat is still scary, because the noise, movement of a busy

environment elevates the rocking sensation and in turn aggravates my eating

ability.

Of course being a cave-bat hermit is no life. I still intend to keep my appt.

with surgeon and will see how the trip/eating goes when we go on our trip. I

have had individuals say put surgery off as long as possible and others

saying..........glad I had it done, don't put it off.

Donna

Missouri

Would rather be at the beach!

> > > >

> > > > Hi all,

> > > >

> > > > I'm pretty new to this group and have been reading everyone's messages

>for

>

> >a

> >

> >

> > >month or so. I had never heard of achalasia before I was diagnosed in late

> > >October.

> > > >

> > > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've lost

>70

>

>

> > >lbs total since the problems started. I started seeing doctors a few months

> > >later and had a difficult time finding a good doctor. The one that I went

to

>

> > >first was rated " Best in Dallas " by a local magazine and he gave me the

>major

>

>

> > >blow-off. We did a EGD and they found candida in my esophagus. He treated

>the

>

>

> > >candida and continued to treat me for reflux. (I had the " foaming " , I

>thought

>

> >it

> >

> > >

> > >was acid, so it's not totally his fault) He then told me he hadn't believed

>me

>

> >

> > >when I told him previously that Aciphex hadn't helped me, so I decided to

>find

>

> >a

> >

> > >

> > >new doctor. A bunch of doctors told me that my eating problems were

> > >psychosomatic and tried to give me anti-anxiety meds.

> > >

> > > >

> > > > I finally found a good doctor and he had a motility test done and a

>barium

>

>

> > >swallow and he said he was surprised to find that it was achalasia. (After

> > >reading the symptoms of the disorder, I'm surprised that he and every other

> > >doctor didn't know it immediately, but whatever.) He referred me to one

> >surgeon

> >

> >

> > >but we decided to go with another, Dr. Westmoreland right here in Dallas.

> > >

> > > >

> > > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it

helps

>

> > >because I am in a bad way. My weight has maintained for basically a year

and

>a

>

> >

> > >half, but I am tired all the time, I don't keep almost anything down, I

have

>

> > >tremendous bags under my eyes from the dehydration and lack of sleep

>(constant

>

> >

> > >choking all night lately even if I regurgitate before bed). I can't keep

any

>

> >of

> >

> >

> > >my prescriptions down with any consistency so that can't be helping my

other

>

> > >health conditions.

> > > >

> > > > I wanted to ask (after telling my life story I guess) - if you've had

the

>

> > >procedure, is there anything you wished you knew going in?

> > > >

> > > > Also - I have had frequent recurring sinus infections for about 6 years.

> >This

> >

> > >

> > >coincides with my move to Texas from Michigan, so even though I don't have

>any

>

> >

> > >allergies, I just thought it was environmental. Could the sinus infections

>be

>

>

> > >related somehow? I know there is a lot of drainage that goes on and perhaps

>it

>

> >

> > >is impeded by the achalasia.

> > >

> > > >

> > > > Thanks in advance for any thoughts or advice!!

> > > >

> > >

> >

> >

[Guest guest]

,

Here are manometry results. I sure can't interpret, I will note the

abnormalities. This is a fax copy so it is hard to read.

High-Resolution Esophageal Motility Study

Lower Esophageal Sphincter Region

LES Length = 1.9 cm Normal is 2.7-4.8

LES pressures

Basal (respirtory min., eSleeve,3sN) 14.5mmHg Normal is 4.8-32.0

Basal (respiriatory mean, eSleeve,3sN) 23.1mmHg Normal is 13-43

Residual (mean,eSleve,3sN) 12.3mmHG 12.3mmHg Normal is <15.0

Upper Esophageal Sphincter

Mean basal pressure =14.1mmHG Normal is 34-104

Mean residual pressure=-2.1mmHg Normal is <34-104

Relaxation time-to-nadir(?)=97 mg Normal is 74-365

Esophageal Motility

Simultaneous (vel.>6.26 cm/s=80% Normal <10%

Failed 10% Normal is 0%

Evaluated@... & 7.0 above LES

Mean wave amptitude=94.4mmHg Normal is 43-162

Mean wave duration 6.4s Normal is 2.7-5.4

Double-peaked waves 11% Normal is 0%

Velocity (11.0-3.0 above LES)= 0.3cm/s Normal is 2.8-6.3

Pharyngeal/UES Motility

No.swallows evaluated 10

Peak pressure@... above mid UES 223.0mmHG

Analysis of HRM Clouse Plots

Normal UES relaxation from a rather low baseline. Normal peristatic initiation

in the skeletal muscle esophagus. However, progression is significantly

abnormal in the smooth muscle esophagus, with fast transmission and simultaneous

waves, and increased intrbolus pressures ending in a dam effect at the level of

a poorly relaxing LES. The LES intermittently relaxes.

Summary: 1. Advanced spastic disorder with simultaneous contractions and poorly

relaxing LES. This pattern is sometimes termed Achalasia variant and need to be

treated as Achalasia. Differentials for this picture includes infiltrating

conditions including eosinophillic esophagitis and neoplasia. Suggest

esophageal biopsies, EUS of the esophagus before definitive Achalasia type

managments.

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

I have had two biopsies, one performed locally that showed strip Hyperplastic

squamous epilthelium. The one I had at showed H-Pylori which I was

treated for. Eosinophillic ruled out.

I have one barium swallow, several endoscopies, however I have not had an

ultrsound. And I have had not heard of any planned ultrasound.

Donna Hall

> > > > >

> > > > > Hi all,

> > > > >

> > > > > I'm pretty new to this group and have been reading everyone's messages

> >for

> >

> > >a

> > >

> > >

> > > >month or so. I had never heard of achalasia before I was diagnosed in

late

> > > >October.

> > > > >

> > > > > I've had problems keeping food down for 3.5 years (I'm 33/F). I've

lost

> >70

> >

> >

> > > >lbs total since the problems started. I started seeing doctors a few

months

>

> > > >later and had a difficult time finding a good doctor. The one that I went

to

> >

> > > >first was rated " Best in Dallas " by a local magazine and he gave me the

> >major

> >

> >

> > > >blow-off. We did a EGD and they found candida in my esophagus. He treated

> >the

> >

> >

> > > >candida and continued to treat me for reflux. (I had the " foaming " , I

> >thought

> >

> > >it

> > >

> > > >

> > > >was acid, so it's not totally his fault) He then told me he hadn't

believed

> >me

> >

> > >

> > > >when I told him previously that Aciphex hadn't helped me, so I decided to

> >find

> >

> > >a

> > >

> > > >

> > > >new doctor. A bunch of doctors told me that my eating problems were

> > > >psychosomatic and tried to give me anti-anxiety meds.

> > > >

> > > > >

> > > > > I finally found a good doctor and he had a motility test done and a

> >barium

> >

> >

> > > >swallow and he said he was surprised to find that it was achalasia.

(After

> > > >reading the symptoms of the disorder, I'm surprised that he and every

other

>

> > > >doctor didn't know it immediately, but whatever.) He referred me to one

> > >surgeon

> > >

> > >

> > > >but we decided to go with another, Dr. Westmoreland right here in Dallas.

> > > >

> > > > >

> > > > > Anyway, my surgery is scheduled for Tuesday morning. I am hoping it

helps

> >

> > > >because I am in a bad way. My weight has maintained for basically a year

and

> >a

> >

> > >

> > > >half, but I am tired all the time, I don't keep almost anything down, I

have

> >

> > > >tremendous bags under my eyes from the dehydration and lack of sleep

> >(constant

> >

> > >

> > > >choking all night lately even if I regurgitate before bed). I can't keep

any

> >

> > >of

> > >

> > >

> > > >my prescriptions down with any consistency so that can't be helping my

other

> >

> > > >health conditions.

> > > > >

> > > > > I wanted to ask (after telling my life story I guess) - if you've had

the

> >

> > > >procedure, is there anything you wished you knew going in?

> > > > >

> > > > > Also - I have had frequent recurring sinus infections for about 6

years.

>

> > >This

> > >

> > > >

> > > >coincides with my move to Texas from Michigan, so even though I don't

have

> >any

> >

> > >

> > > >allergies, I just thought it was environmental. Could the sinus

infections

> >be

> >

> >

> > > >related somehow? I know there is a lot of drainage that goes on and

perhaps

> >it

> >

> > >

> > > >is impeded by the achalasia.

> > > >

> > > > >

> > > > > Thanks in advance for any thoughts or advice!!

> > > > >

> > > >

> > >

> > >

[Guest guest]

Notan,

Here in Springfield when I asked if my hiatal hernia was sliding they said NO.

However, Gastro. at fully noted in report that it was sliding. Just

shows to go ya!

Donna Hall

> > - if you've had the procedure, is there anything you wished you knew going

in?

>

> Yes, I should have demanded something to prevent nausea. I had suggested

> that pain medication could make me nauseated but I was assured that my

> previous situation was different and not to worry. I was retching during

> the night after the surgery. That can do damage but surprisingly didn't

> feel as painful as you would think. Then I got the shot for nausea. If

> you have any history of pain meds causing nausea demand the medication

> for it. I now have a paraesophageal hernia which may have been the

> result of that retching.

>

> If your work involves heavy lifting tell your surgeon how much you lift.

> You may need more time off than is usual. My surgeon did not want me

> back at work for 6 weeks.

>

> > ... Could the sinus infections be related somehow? ...

>

> Yes. Food trapped in the esophagus is a breading ground for all kinds of

> things. It is not hard to figure that they can find their way to the

> sinuses especially when you have problems while sleeping.

>

> notan

>