Re: New member history

[Guest guest]

Welcome to the group, ma.

ma wrote:

> I am going to Richter in Philly for a consult.

He has done a lot with achalasia.

> (Crohn's, achalasia)--could they truly be unrelated??

Yes. Why not? If you have a large enough group someone in it will

probably have Crohn's. In our group you are that person, or one of those

persons. Even if it is related I don't think knowing would change

anything. You would still face the same options for achalasia and same

options for Crohn's.

> Confused by " class II " subtype thing.

In the Chicago classification system, class II is achalasia with

esophageal compression. It means that, instead of a wave of compression

going from top to bottom to move food, the entire esophagus has the same

pressure at the same time. That kind of compression is not good for

moving food. The good news is that class II responds better to any of

the treatments than the other classes.

For more info see:

Achalasia: A New Clinically Relevant Classification by High-Resolution

Manometry

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894987

> Worried that I will be steered to dilation when I should just do the myometry.

Doctor Richter is an expert who has written positively about dilation.

You are 50, female and class II. Each of those three attributes is

associated with better outcome from dilation. You have a better chance

of being happy with dilatation results than someone who is male, 20 and

class III. Is dilatation or surgery the best option for you? I don't

know. I haven't said it in while, there are no right answers just good

guesses. Study so with your doctors you can make the best guess you can,

then never look back.

Management of achalasia: surgery or pneumatic dilation.

Richter JE, Boeckxstaens GE.

http://www.ncbi.nlm.nih.gov/pubmed/21303915

Achalasia - an update.

Richter JE.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912115

notan

[Guest guest]

Hi ma,

The key is to get to a VERY qualified surgeon/GI who can speak to you and make

the best sense of what exactly would work best in your situation.  I have

achalasia, in my manometry test it showed 100% failure of peristalsis, and high

LES pressure.  I am over 50 and everyone told me that myotomy was a good choice

in my situation.  I went ahead and had my surgery last August.  I found the

BEST

surgeon at UCLA for my surgery, she is a top notch esophageal surgeon who does

alot of myotomy's etc.  I had a long consult with her and asked LOTS of

questions about the surgery, how she performs it and what MY chances were for

success.  She felt 100% confident that it would improve my quality of life and

that it would help my swallowing greatly.  I had been struggling with achalasia

(undiagnosed) for years.  I could barely eat anything without tons of water and

facing hours of regurg, vomiting and sleeping propped up on 2 pillows for over 2

decades of my life. 

For me, the surgery has been amazing, it has been 7 months and I eat very well

now.  I have no reflux or acid problems.  I take no medications.  I think the

key is that you have to find the right GI or surgeon who can explain it to you

and make good sense as to which way is BEST for you.  The person who does the

procedure has to be the top of the line, results will depend on how much

experience they have (not always, but in most cases). 

In my situation, I was told that the dilitation would not last as long for me as

the surgery would.  My surgeon told me that she felt I was going to be okay for

a long time, hopefully for the rest of my life. 

It took me a long time to read and research and then to be brave enough (with

lots of support from this group), then to make the decisions to have surgery. 

But, it was the best thing I could have done. 

Best regards, Julee So. Calif.

________________________________

From: chapeaurosedc <chapeaurosedc@...>

achalasia

Sent: Thu, February 24, 2011 6:19:22 AM

Subject: New member history

 

I'm 50 and female...I have never been able to swallow pills without eating

something (perhaps shows an underlying propensity). I first became aware of

painful esophageal spasms after I took clindamycin for a root canal seven years

ago. (The cindamycin also seemed to provoke the onset of my Crohn's disease). I

went through years of misdiagnosis of heartburn (and cardio workups). I began

having more swallowing problems several years ago. I have had three endoscopies

(one during a painful yeast outbreak in my esophagus) with two GI docs but all

they did was check for Barrett's and neither diagnosed achalasia. I had a barium

swallow a year ago but they said " probably not achalasia. " My swallowing

deteriorated...I now have to drink about six glasses of water to eat a meal, and

I cannot eat a large meal, avoid meat and salad, etc. After shedding 20 (excess)

pounds, I keep my weight stable by eating high-fat foods (and chewable

vitamins). I finally had HR manometry at s Hopkins in January--zero

peristalsis. Achalasia. I had known it in my heart, been lurking on here, but

put off the nasty manometry and definitive diagnosis for almost a year. They say

I am " class II " because my LES pressure was NOT actually high (no " bird beak " ),

just lack of peristalsis? My GI says there is no one truly expert in the DC

area, not clear myometry would help me, so I am going to Richter in Philly

for a consult.

Questions--presume I will face dilation/myometry choice now. Eager to do

something. Hard to get my head around having two inflammation-related rare GI

conditions that onset at the same time (Crohn's, achalasia)--could they truly be

unrelated?? Confused by " class II " subtype thing. Worried that I will be steered

to dilation when I should just do the myometry. Worried about where to do the

surgery--good insurance, could go anywhere. Frustrated that there are no top

docs in DC. Can't seem to find the file with doctor recommendation in the

archive? What is the label on it?

Thanks for help--

ma

[Guest guest]

, AMEN to everything you WROTE.. I am like you, I always ask lots of

question, do research about the doctors performance or how many research he has

done. I even ask if any of his patients came back to him and said " they have

problems " . Always be preferred to ask questions. I even ask them how they feel

about botox, dilation and MYOTOMY being suggested to patients. My daughter GI

doctor flat out suggested myotomy bcoz he don't believe on doing things that

will not work.  He said he don't want his patients to be unhappy that is why he

suggested MYOTOMY for my my child. He stated that my daughter is young and

healthy and has good future and he positively and 100% sure this will help

her. 

He also said that he discuss his ideas to his other GI specialist what they

think and some suggested to do  DILATION  first and if it don't work, do

MYOTOMY. He said they all have good ideas but ' WHY DO I HAVE TO SUBJECT MY

PATIENT ON ANOTHER SCAR TISSUES'.. I love this GI DOCTOR. I have talked to some

nurses about him and they all said " he is a good doctor and your child is in

good hands " ....

To Shamira, please do a lot of research for your daughter.. Good luck and

remember on the 28th is RARE DISORDER DAY... PRAYERS FOR TANIEA...

________________________________

From: Montoya <medhelpinfo@...>

achalasia

Sent: Fri, February 25, 2011 12:37:14 AM

Subject: Re: New member history

 

Hi ma,

The key is to get to a VERY qualified surgeon/GI who can speak to you and make

the best sense of what exactly would work best in your situation.  I have

achalasia, in my manometry test it showed 100% failure of peristalsis, and high

LES pressure.  I am over 50 and everyone told me that myotomy was a good choice

in my situation.  I went ahead and had my surgery last August.  I found the

BEST

surgeon at UCLA for my surgery, she is a top notch esophageal surgeon who does

alot of myotomy's etc.  I had a long consult with her and asked LOTS of

questions about the surgery, how she performs it and what MY chances were for

success.  She felt 100% confident that it would improve my quality of life and

that it would help my swallowing greatly.  I had been struggling with achalasia

(undiagnosed) for years.  I could barely eat anything without tons of water and

facing hours of regurg, vomiting and sleeping propped up on 2 pillows for over 2

decades of my life. 

For me, the surgery has been amazing, it has been 7 months and I eat very well

now.  I have no reflux or acid problems.  I take no medications.  I think the

key is that you have to find the right GI or surgeon who can explain it to you

and make good sense as to which way is BEST for you.  The person who does the

procedure has to be the top of the line, results will depend on how much

experience they have (not always, but in most cases). 

In my situation, I was told that the dilitation would not last as long for me as

the surgery would.  My surgeon told me that she felt I was going to be okay for

a long time, hopefully for the rest of my life. 

It took me a long time to read and research and then to be brave enough (with

lots of support from this group), then to make the decisions to have surgery. 

But, it was the best thing I could have done. 

Best regards, Julee So. Calif.

________________________________

From: chapeaurosedc <chapeaurosedc@...>

achalasia

Sent: Thu, February 24, 2011 6:19:22 AM

Subject: New member history

 

I'm 50 and female...I have never been able to swallow pills without eating

something (perhaps shows an underlying propensity). I first became aware of

painful esophageal spasms after I took clindamycin for a root canal seven years

ago. (The cindamycin also seemed to provoke the onset of my Crohn's disease). I

went through years of misdiagnosis of heartburn (and cardio workups). I began

having more swallowing problems several years ago. I have had three endoscopies

(one during a painful yeast outbreak in my esophagus) with two GI docs but all

they did was check for Barrett's and neither diagnosed achalasia. I had a barium

swallow a year ago but they said " probably not achalasia. " My swallowing

deteriorated...I now have to drink about six glasses of water to eat a meal, and

I cannot eat a large meal, avoid meat and salad, etc. After shedding 20 (excess)

pounds, I keep my weight stable by eating high-fat foods (and chewable

vitamins). I finally had HR manometry at s Hopkins in January--zero

peristalsis. Achalasia. I had known it in my heart, been lurking on here, but

put off the nasty manometry and definitive diagnosis for almost a year. They say

I am " class II " because my LES pressure was NOT actually high (no " bird beak " ),

just lack of peristalsis? My GI says there is no one truly expert in the DC

area, not clear myometry would help me, so I am going to Richter in Philly

for a consult.

Questions--presume I will face dilation/myometry choice now. Eager to do

something. Hard to get my head around having two inflammation-related rare GI

conditions that onset at the same time (Crohn's, achalasia)--could they truly be

unrelated?? Confused by " class II " subtype thing. Worried that I will be steered

to dilation when I should just do the myometry. Worried about where to do the

surgery--good insurance, could go anywhere. Frustrated that there are no top

docs in DC. Can't seem to find the file with doctor recommendation in the

archive? What is the label on it?

Thanks for help--

ma

[Guest guest]

Belated thanks for responses, I can't seem to face checking this board all the

time (in denial I guess).

Is there a file with recommended doctors in the archive? I can't find it...

Thanks,

ma