Re: Old Achalasia question ...

[Guest guest]

I was diagnosed with Achalasia in 1978 (33 years ago) with the first balloon

dilation in May of 1979 with numerous balloon dilation's thereafter.  Had to

have my Heller Myotomy in March 1999 without the fundo.  I control with

medication and slow eating.  Sleep elevated, not eating anything cold or spicy

and no bread as it will ball up due to the gluten and will not reach the stomach

and spasms ensue. 

 

It sounds like you have a rather mild case, I follow doctors orders and live a

comfortable life; however with reflux and still have to have the dilation's

about 1 to 2 year apart unless there are problems; that cause me to have to have

it again.  Nothing to be scared of.  My greatest fear is that I choke to

death.  Literally.  The disease only progressively gets worse, not meaning to

scare you, but it does.  Most people will tell you the same thing, but with a

good doctor, we can live a wonderfully long long life.

 

Best Regards,

Sharon Cline

 

From: dicklahn <dicklahn@...>

Subject: Old Achalasia question ...

achalasia

Date: Monday, May 30, 2011, 10:33 PM

 

I guess I've had Achalasia now for 15 years or more. My Dr. in polis

diagnosed it right away, sent me to Hopkins, where I've been treated since. Only

treatments so far have been Botox injections. But now they don't seem to work.

Previously, I've had remissions that have lasted as long as 5 years which was

unusual as Botox is supposedly effective for only 1 year.

Lately, despite 2 injections at Hopkins in the last 6 months, Botox hasn't

worked, I've had many episodes, and I think my esophagus is deteriorating. I

need to do something different. But like years ago when I considered the

options, I'm still scared of dilitation, and even more of surgery. Maybe these

techniques are more successful today than in the past when I was one of the

first members of this group and treatment options were new and Drs had

little experience in treatment.

Question: I work on eating slowly and chewing well but I forget when I'm very

hungry and then it's too late or I gulp a liquid and the esophagus knots up. Are

there any mental tricks to learn which can help? If not, what low risk

treatments do you recommend?

[Guest guest]

I am very surprised that at Hopkins you were still receiving botox injections.

Since you have been going there for at least 15 years, you probably know that

Hopkins was at the forefront of the first FDA study of using botox injections

for easing achalasia symptoms. I was asked around 1993-1994 to participate in

that study (which I reluctantly turned down).  Hopkins used to be in the

forefront of advancement, but a doctor using botox today who practices at

Hopkins is someone who got left behind in the 1990's.  You need to find a

different doctor.

 

You asked the group for mental tricks or other low risk options, while at the

same time mentioning that you believe your esophagus is deteriorating. At this

point in time, I don't think that " mental tricks " are going to help much in the

long term (yes, you could try drinking a glass of your favorite drink before

starting a meal when you feel very hungry to slow down eating too fast, that

gets you into trouble), but I think at this point you need to take a look at the

bigger picture.  " Not doing anything " seems to be a " high risk " option.  While

there is nothing to fault you on being scared of dilatations and surgery, I

would start by first defining what kind of condition your esophagus is in right

now.  Get an endoscopy and barium swallow done.  I would also strongly

consider using doctors recommended by this group.  Also, seek out more than one

opinion.  You need to know what is going on inside you before making any kind

of decision on your own as

to what to do next.

 

From: Sharon Cline <sharon_cline@...>

achalasia

Sent: Tuesday, May 31, 2011 1:44 AM

Subject: Re: Old Achalasia question ...

 

I was diagnosed with Achalasia in 1978 (33 years ago) with the first balloon

dilation in May of 1979 with numerous balloon dilation's thereafter.  Had to

have my Heller Myotomy in March 1999 without the fundo.  I control with

medication and slow eating.  Sleep elevated, not eating anything cold or spicy

and no bread as it will ball up due to the gluten and will not reach the stomach

and spasms ensue. 

 

It sounds like you have a rather mild case, I follow doctors orders and live a

comfortable life; however with reflux and still have to have the dilation's

about 1 to 2 year apart unless there are problems; that cause me to have to have

it again.  Nothing to be scared of.  My greatest fear is that I choke to

death.  Literally.  The disease only progressively gets worse, not meaning to

scare you, but it does.  Most people will tell you the same thing, but with a

good doctor, we can live a wonderfully long long life.

 

Best Regards,

Sharon Cline

 

From: dicklahn <dicklahn@...>

Subject: Old Achalasia question ...

achalasia

Date: Monday, May 30, 2011, 10:33 PM

 

I guess I've had Achalasia now for 15 years or more. My Dr. in polis

diagnosed it right away, sent me to Hopkins, where I've been treated since. Only

treatments so far have been Botox injections. But now they don't seem to work.

Previously, I've had remissions that have lasted as long as 5 years which was

unusual as Botox is supposedly effective for only 1 year.

Lately, despite 2 injections at Hopkins in the last 6 months, Botox hasn't

worked, I've had many episodes, and I think my esophagus is deteriorating. I

need to do something different. But like years ago when I considered the

options, I'm still scared of dilitation, and even more of surgery. Maybe these

techniques are more successful today than in the past when I was one of the

first members of this group and treatment options were new and Drs had

little experience in treatment.

Question: I work on eating slowly and chewing well but I forget when I'm very

hungry and then it's too late or I gulp a liquid and the esophagus knots up. Are

there any mental tricks to learn which can help? If not, what low risk

treatments do you recommend?

[Guest guest]

AMEN to this, why not go for a knife instead of needles. BOTOX is not good at

all, please find a new doctor.

________________________________

From: RICHARD FRIEDMAN <cynmark24@...>

" achalasia " <achalasia >

Sent: Tue, May 31, 2011 10:21:52 AM

Subject: Re: Old Achalasia question ...

 

I am very surprised that at Hopkins you were still receiving botox injections.

Since you have been going there for at least 15 years, you probably know that

Hopkins was at the forefront of the first FDA study of using botox injections

for easing achalasia symptoms. I was asked around 1993-1994 to participate in

that study (which I reluctantly turned down).  Hopkins used to be in the

forefront of advancement, but a doctor using botox today who practices at

Hopkins is someone who got left behind in the 1990's.  You need to find a

different doctor.

 

You asked the group for mental tricks or other low risk options, while at the

same time mentioning that you believe your esophagus is deteriorating. At this

point in time, I don't think that " mental tricks " are going to help much in the

long term (yes, you could try drinking a glass of your favorite drink before

starting a meal when you feel very hungry to slow down eating too fast, that

gets you into trouble), but I think at this point you need to take a look at the

bigger picture.  " Not doing anything " seems to be a " high risk " option.  While

there is nothing to fault you on being scared of dilatations and surgery, I

would start by first defining what kind of condition your esophagus is in right

now.  Get an endoscopy and barium swallow done.  I would also strongly

consider

using doctors recommended by this group.  Also, seek out more than one

opinion. 

You need to know what is going on inside you before making any kind of decision

on your own as

to what to do next.

 

From: Sharon Cline <sharon_cline@...>

achalasia

Sent: Tuesday, May 31, 2011 1:44 AM

Subject: Re: Old Achalasia question ...

 

I was diagnosed with Achalasia in 1978 (33 years ago) with the first balloon

dilation in May of 1979 with numerous balloon dilation's thereafter.  Had to

have my Heller Myotomy in March 1999 without the fundo.  I control with

medication and slow eating.  Sleep elevated, not eating anything cold or spicy

and no bread as it will ball up due to the gluten and will not reach the stomach

and spasms ensue. 

 

It sounds like you have a rather mild case, I follow doctors orders and live a

comfortable life; however with reflux and still have to have the dilation's

about 1 to 2 year apart unless there are problems; that cause me to have to have

it again.  Nothing to be scared of.  My greatest fear is that I choke to

death. 

Literally.  The disease only progressively gets worse, not meaning to scare

you,

but it does.  Most people will tell you the same thing, but with a good doctor,

we can live a wonderfully long long life.

 

Best Regards,

Sharon Cline

 

From: dicklahn <dicklahn@...>

Subject: Old Achalasia question ...

achalasia

Date: Monday, May 30, 2011, 10:33 PM

 

I guess I've had Achalasia now for 15 years or more. My Dr. in polis

diagnosed it right away, sent me to Hopkins, where I've been treated since. Only

treatments so far have been Botox injections. But now they don't seem to work.

Previously, I've had remissions that have lasted as long as 5 years which was

unusual as Botox is supposedly effective for only 1 year.

Lately, despite 2 injections at Hopkins in the last 6 months, Botox hasn't

worked, I've had many episodes, and I think my esophagus is deteriorating. I

need to do something different. But like years ago when I considered the

options, I'm still scared of dilitation, and even more of surgery. Maybe these

techniques are more successful today than in the past when I was one of the

first members of this group and treatment options were new and Drs had

little experience in treatment.

Question: I work on eating slowly and chewing well but I forget when I'm very

hungry and then it's too late or I gulp a liquid and the esophagus knots up. Are

there any mental tricks to learn which can help? If not, what low risk

treatments do you recommend?

[Guest guest]

I would get to another doctor quickly. This is the reason I did not go to

Hopkins---they are sold on Botox for some reason. Too much Botox will cause

scar tissue to develop and will give you not only problems with the

inability to swallow, but also problems for any surgery you may need such as

a Heller or esophagectomy. I live in the DC area, and I went to The

Cleveland Clinic.I can recommend Dr. Shay, gastro and Dr.

Rice, thoracic surgeon.

You might want to read this thread:

http://health.dir./group/achalasia/message/41665

InVA

Achalasia Free since 2/2008!

[Guest guest]

Dick, I hope things get better for you.  I have been tolg by several doctors

and by some of the reading I do about botox ad its use for Achalasia that unless

there is a reason other procedures or surgeries are not able to be done for a

patient because of there health and such that botox should not be used.  Part

of the reason is that any time that a balloon dilation is done with out without

botox there is a high chance that scar tissue will develope.  Having that scar

tissue present when a patient has the Heller's myotomy it could nt have as good

of an outcome as needed or wanted.  The second reason is that botox normally

only lasts about 3 to 4 months.  Having a patient returning many times over a

years time is not only taxing on the patient but in the long run might have aver

effects when surgery is finaly undertaken.

 

in Georgia

<font face= " comic sans ms " color= " #ff0000 " size= " 5 " > in Georgia

</font><img src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

From: dicklahn <dicklahn@...>

Subject: Old Achalasia question ...

achalasia

Date: Friday, June 3, 2011, 2:39 AM

 

Thanks for your responses.

Since in the last 10 years I've been out of touch with anyone with Achalasia I'm

surprised that the treatment landscape has changed re: Botox. I've always

thought that if it works keep doing it. Now I sense in this on-line group (but

not from my regular GI Dr in polis, Drs in my family, or my Hopkins Dr Kaloo

who is head of GI Dept) that Botox is no good. Why has view on Botox changed in

this group?

I met with Dr Kaloo on Tuesday and now I'm scheduled for a dilatation next

Tuesday. Hiis answer on treatment is that all you can do is to " treat the

symptoms " there is nothing beyond that to do. Also, that treatment methodology

since my onset in 1999 hasn't changed. Initially, at Hopkins I was treated by

head of GI Dr. Pashrica, who is now head of GI at Stanford. Both have led me

down the same path I'm on now. I read no different in this group save responses

to differences in severrity in individuals and general dislike for botox, Why is

botox now rejected? Thanks, Dick

[Guest guest]

Dick wrote:

> ... Why is botox now rejected?

>

I wouldn't say it is rejected, but it wouldn't be first choice in most

cases. In some cases it is not only a treatment but diagnostic. If the

Botox works then other treatments should also work. Where there is doubt

that treatment can work Botox before surgery may be the right decision.

There are other reason to use it also. However, Botox is a protein and

your immune system can learn to attack it. That immune response can

result in inflammation and fibrosis (scarring). Fibrosis is not going

help your LES work any better and it can make surgery more difficult.

There is debate on whether that difficulty really matters or not. Some

surgeons report that it does not. Here is a paper by a center where they

think it does matter.

Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse

Outcomes Than Heller Myotomy Alone

From the Department of Surgery, Emory University School of Medicine,

Atlanta, GA.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1570551/

As others have mentioned many patients get only short relief before

needing another treatment. In that short time the benefit of the

treatment falls and they live with less than optimal result after the

benefit falls but before the next treatment. That time may also be

putting the esophagus at risk. There is evidence that untreated or

inadequately treated achalasia results in esophageal dilation. If

patients wait too long to get retreated or learn to live with less than

optimal results that may be a problem.

If it works for you and these are not your problems then we are happy

that you are happy, but we are cautious for the sake of others.

notan

[Guest guest]

I had the botox in October 2010 to help confirm the diagnosis of achalasia.

My manometry test had been inconclusive, so this was the next option

available. My doctor told me that botox was temporary and that the failure

rate increases with each additional treatment. Currently I am better than I

was before the botox but I can tell that it is slowly starting to wear off.

He had quoted 9 to 12 months average duration for botox. I am going on the

8th month and find food is sticking more but at least it isn't as bad as it

was. I see my doctor on the 28th of this month to discuss surgery.

-- Re: Old Achalasia question ...

Dick wrote:

> ... Why is botox now rejected?

>

I wouldn't say it is rejected, but it wouldn't be first choice in most

cases. In some cases it is not only a treatment but diagnostic. If the

Botox works then other treatments should also work. Where there is doubt

that treatment can work Botox before surgery may be the right decision.

There are other reason to use it also. However, Botox is a protein and

your immune system can learn to attack it. That immune response can

result in inflammation and fibrosis (scarring). Fibrosis is not going

help your LES work any better and it can make surgery more difficult.

There is debate on whether that difficulty really matters or not. Some

surgeons report that it does not. Here is a paper by a center where they

think it does matter.

Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse

Outcomes Than Heller Myotomy Alone

From the Department of Surgery, Emory University School of Medicine,

Atlanta, GA.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1570551/

As others have mentioned many patients get only short relief before

needing another treatment. In that short time the benefit of the

treatment falls and they live with less than optimal result after the

benefit falls but before the next treatment. That time may also be

putting the esophagus at risk. There is evidence that untreated or

inadequately treated achalasia results in esophageal dilation. If

patients wait too long to get retreated or learn to live with less than

optimal results that may be a problem.

If it works for you and these are not your problems then we are happy

that you are happy, but we are cautious for the sake of others.

notan

[Guest guest]

Why not try dilatation first? The risk is minimal and it may work for up to 3

yrs. Dick

>

> > ... Why is botox now rejected?

> >

>

> I wouldn't say it is rejected, but it wouldn't be first choice in most

> cases. In some cases it is not only a treatment but diagnostic. If the

> Botox works then other treatments should also work. Where there is doubt

> that treatment can work Botox before surgery may be the right decision.

> There are other reason to use it also. However, Botox is a protein and

> your immune system can learn to attack it. That immune response can

> result in inflammation and fibrosis (scarring). Fibrosis is not going

> help your LES work any better and it can make surgery more difficult.

> There is debate on whether that difficulty really matters or not. Some

> surgeons report that it does not. Here is a paper by a center where they

> think it does matter.

>

> Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse

> Outcomes Than Heller Myotomy Alone

> From the Department of Surgery, Emory University School of Medicine,

> Atlanta, GA.

> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1570551/

>

> As others have mentioned many patients get only short relief before

> needing another treatment. In that short time the benefit of the

> treatment falls and they live with less than optimal result after the

> benefit falls but before the next treatment. That time may also be

> putting the esophagus at risk. There is evidence that untreated or

> inadequately treated achalasia results in esophageal dilation. If

> patients wait too long to get retreated or learn to live with less than

> optimal results that may be a problem.

>

> If it works for you and these are not your problems then we are happy

> that you are happy, but we are cautious for the sake of others.

>

> notan

>

>

>

>

[Guest guest]

My concern is the build up of scar tissue and lack of doctors in the area

who specialize in this type of surgery. I am hoping that the surgery will

provide a better longer term result for me and then save dilatation for the

times when symptoms come back. I feel surgery is my best bet and I don't

want to risk any further damage to the E by waiting for surgery. It seems

that at my age surgery is the better option. I have researched all options

and from what I have read in this group surgery will be more effective now

than if I wait a few years down the road.

-- Re: Old Achalasia question ...

Why not try dilatation first? The risk is minimal and it may work for up to

3 yrs. Dick

>

> > ... Why is botox now rejected?

> >

>

> I wouldn't say it is rejected, but it wouldn't be first choice in most

> cases. In some cases it is not only a treatment but diagnostic. If the

> Botox works then other treatments should also work. Where there is doubt

> that treatment can work Botox before surgery may be the right decision.

> There are other reason to use it also. However, Botox is a protein and

> your immune system can learn to attack it. That immune response can

> result in inflammation and fibrosis (scarring). Fibrosis is not going

> help your LES work any better and it can make surgery more difficult.

> There is debate on whether that difficulty really matters or not. Some

> surgeons report that it does not. Here is a paper by a center where they

> think it does matter.

>

> Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse

> Outcomes Than Heller Myotomy Alone

> From the Department of Surgery, Emory University School of Medicine,

> Atlanta, GA.

> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1570551/

>

> As others have mentioned many patients get only short relief before

> needing another treatment. In that short time the benefit of the

> treatment falls and they live with less than optimal result after the

> benefit falls but before the next treatment. That time may also be

> putting the esophagus at risk. There is evidence that untreated or

> inadequately treated achalasia results in esophageal dilation. If

> patients wait too long to get retreated or learn to live with less than

> optimal results that may be a problem.

>

> If it works for you and these are not your problems then we are happy

> that you are happy, but we are cautious for the sake of others.

>

> notan

>

>

>

>

[Guest guest]

Notan, Thank you for your thoughtful response. I remember you on-line from

years ago, maybe 2002, 2003. You must now be the world's leading authority on

Achalasia, you were the authority then.

I had a dilation today at Hopkins and I'll see how I make out. As one data

point, I don't think I'm the average case. Botox has worked for me for many

years and my wife reminded me that 4 or 5 years ago I had a big piece of meat

stuck and she took me to the ER. The Dr. debated whether to pull it out or push

it down. He decided on the latter which my wife equated to having a baloon

treatment. The result was remission for 3 yrs or more.

Can't remember if you had the illness or was an observer/contributor to the

group. If the former, how are you doing?

Best regards, Dick

>

> > ... Why is botox now rejected?

> >

>

> I wouldn't say it is rejected, but it wouldn't be first choice in most

> cases. In some cases it is not only a treatment but diagnostic. If the

> Botox works then other treatments should also work. Where there is doubt

> that treatment can work Botox before surgery may be the right decision.

> There are other reason to use it also. However, Botox is a protein and

> your immune system can learn to attack it. That immune response can

> result in inflammation and fibrosis (scarring). Fibrosis is not going

> help your LES work any better and it can make surgery more difficult.

> There is debate on whether that difficulty really matters or not. Some

> surgeons report that it does not. Here is a paper by a center where they

> think it does matter.

>

> Endoscopic Therapy for Achalasia Before Heller Myotomy Results in Worse

> Outcomes Than Heller Myotomy Alone

> From the Department of Surgery, Emory University School of Medicine,

> Atlanta, GA.

> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1570551/

>

> As others have mentioned many patients get only short relief before

> needing another treatment. In that short time the benefit of the

> treatment falls and they live with less than optimal result after the

> benefit falls but before the next treatment. That time may also be

> putting the esophagus at risk. There is evidence that untreated or

> inadequately treated achalasia results in esophageal dilation. If

> patients wait too long to get retreated or learn to live with less than

> optimal results that may be a problem.

>

> If it works for you and these are not your problems then we are happy

> that you are happy, but we are cautious for the sake of others.

>

> notan

>

>

>

>

[Guest guest]

Dick Lahn wrote:

> Can't remember if you had the illness or was an observer/contributor

> to the group. If the former, how are you doing?

>

I had the surgery in Nov. of 2005. I am doing very well with it. It

isn't perfect but if I didn't know I had it I would just think everyone

has these minor events. I eat anything without problems. I may need a

little water but often I can eat a meal without a drink. I know because

sometimes I forget to drink and I have a full glass at the end. Eating

something like nuts late before bed can be a problem. The grit of the

nuts seems to be hard to completely clear. I don't know why it is so

much worse than other things. I also have to deal with some reflux after

the surgery.

notan

[Guest guest]

Dick wrote:

>

> I sent your link below to my Dr. asking if he agreed with article...

> Here's his response:

> Tony Kalloo to Dickshow details 3:15 PM (2 hours ago)

> I don't agree with the results of this study, maybe we need a poem.

>

> http://www.ncbi.nlm.nih.gov/pubmed/20354937

> <http://www.ncbi.nlm.nih.gov/pubmed/20354937>

>

> N. Kalloo, MD

>

There are studies that come to different conclusions on this topic. Good

doctors will disagree on which are right and what to make of them. I

don't have a problem with his disagreeing. I just think it is good to

know that there are differing opinions.

notan