Re: newbe facing decisions

[Guest guest]

You are going to hear this many times from this board, I'll be the first:

The most critical factor is the experience level of your surgeon, be sure to get

one who has personally performed MANY Heller myotomies.

Where do you live ? Maybe you are lucky enough to be near one of the renowed

specialists.

>

> I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

>

> My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

>

> A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

>

> I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

>

> I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

>

> I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

>

> I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

>

[Guest guest]

I haven't had the HM  yet, but do plan to within a month or so. I've waited

much too long - several years. Tried botox injections several times that gave

temporary relief, but that's it. Have been afraid of the HM because I've read

that it could increase spasms and I wasn't willing to trade for that.

However, now that I've spoken with the surgeon - a very good one with over 500

HM's under his belt,  I feel much better. He also told me though that due to

the botox injections and resulting scar tissue, the procedure would have a

slight more risk (perforation). This would also be the case with dilatation. So,

if I were in your shoes, I would go for the gold with the HM and a very

qualified surgeon that has a great track record.

This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

I just know for me my quality of life has deteriorated to a point I'm willing to

take a chance with the HM. I'm also concerned about other health problems

because of my horrid diet and nutritional status. I try to take my antiox juice

and sublinguals as much as possible, but I know I'm at risk for other disease

since I'm not as healthy as I should be.

That's my opinion. Hope it helps.

Kim

________________________________

From: DCBlogs <dcblogs@...>

achalasia

Sent: Wednesday, March 21, 2012 12:30 AM

Subject: newbe facing decisions

 

I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

My problem began about two years ago with some swallowing difficulty. Actually,

it never felt that food was stuck but something wasn't working. I'd eat a little

and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

I'm 57 and despite this consider myself way lucky. I have no reason to complain.

I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

[Guest guest]

My surgeon, at UVA, has done over a hundred Hellers. (Fifty would be the

*absolute* minimum.) And, unequivocally YES it has made a HUGE difference. Am I

back to pre-Achalasia? Nope. And never will be. BUT -- I'm no longer living

on chocolate (oh, yes, familiar with that) and Mountain Dew (yep: carbonation

helps a lot of us). I lost 60 pounds in the three months before the diagnosis

at the end of September last. Maintained, just barely (and it was a full-time

job simply to do that) between then and the surgery at the end of December.

Have since gained 30 pounds, and am, *very* carefully back on my adult diet: lo

carb/wheat free.

For the time being,if I were you, I'd stay with both the chocolate (which helps

relax the LES) and the carbonation, but would add some seriously GOOD protein.

A crock pot and a blender are a HUGE help (pick them up at GoodWill or Sally).

Chicken crockpots wonderfully well, and blenderizes better. You might could

even come to love chicken pate, lol! I did.

At almost three months out, I'm *still* dealing with the effects of

malnutrition: screwed up calcium, potassium, magnesium, Vitamin D, and Vitamin

B12. My waist length hair is no more -- now dealing with keeping 3 inch hair

(which IS thick!) in some kind of style while it grows back out to bun length.

Have leg swelling and nerve damage from the starvation. . . . working on that.

At three months, I'm *finally* able to eat diced chicken instead of pate. . . .

Where I see the BIGGEST DIFFERENCE is that I don't have to change pillow cases

every day because of the night time regurging, and have very little daytime

regurging at all. Some? Yes, a bit, if I've been pushing the envelope. I'll

always eat slower, and in less volume. I'll always need to wash stuff down, but

now coffee works fine -- no more need of power swallows.

BTW, the chicken pate works very well on crackers. I have no idea why crackers

are SO easy, but they dissolve almost completely when wet, and act as a great

" raft " for the pate when I got tired of just spooning it in straight, lol!

Crackers also break up the lumps cheese wants to make when eaten straight. . . .

Crock pots are also very good for making veggies into a good soup consistency. .

.. .

Ensure et al. are death traps: sugar and rancid oil with some soy protein (GMO

soy) and a cheap vitamin. YOU ARE WORTH MORE THAN THAT!!!! Please do the work.

If you live in the Washington DC area, I'd be EXTRA careful about your surgeon.

We had one member from andria I think who said there was NO ONE good in DC.

She may have been wrong, but I'd be looking at s Hopkins maybe. . . . And

remember, for some reason, your average GI is going to vote for dilation. Your

average chest surgeon is going to vote for the Heller. I, just personally,

would go with the Heller. It may need some touch up later. But *usually* not a

redo. All dilations, as nearly as I can tell, need redos. Much sooner rather

than later. About 80% of the Hellers are still going strong 30 years later.

Good odds.

Good luck and bon courage.

in the wonderful wilds of West Virginia

[Guest guest]

I had a experienced expert do my HM in Nov last year and it didn't work! I

think he has done 100's and people come from around Australia and the world to

see him. So experience sometimes isn't going to make any difference!

(Australia)

>

> I haven't had the HM  yet, but do plan to within a month or so. I've waited

much too long - several years. Tried botox injections several times that gave

temporary relief, but that's it. Have been afraid of the HM because I've read

that it could increase spasms and I wasn't willing to trade for that.

>

> However, now that I've spoken with the surgeon - a very good one with over 500

HM's under his belt,  I feel much better. He also told me though that due to

the botox injections and resulting scar tissue, the procedure would have a

slight more risk (perforation). This would also be the case with dilatation. So,

if I were in your shoes, I would go for the gold with the HM and a very

qualified surgeon that has a great track record.

>

> This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

>

> I just know for me my quality of life has deteriorated to a point I'm willing

to take a chance with the HM. I'm also concerned about other health problems

because of my horrid diet and nutritional status. I try to take my antiox juice

and sublinguals as much as possible, but I know I'm at risk for other disease

since I'm not as healthy as I should be.

>

> That's my opinion. Hope it helps.

>

> Kim

>

>

>

>

> ________________________________

> From: DCBlogs <dcblogs@...>

> achalasia

> Sent: Wednesday, March 21, 2012 12:30 AM

> Subject: newbe facing decisions

>

>

>  

> I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

>

> My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

>

> A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

>

> I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

>

> I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

>

> I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

>

> I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

>

>

>

>

>

[Guest guest]

Agreed, in part.  The operation never comes with a " warranty, " but its safe to

say that the more experienced the better your odds for long term success.  

, sadly in your case, you went to the best surgeon for achalasia on the

continent, and you are still seemingly no better off.

 

Don't let Dr. Bessell off the hook.  I am confident that in time (don't know

how much), he will figure out why you are still having problems and return your

life to manageable, where you can comfortably eat out (and in) with family and

friends. 

 

How do I know this?  Being here for 6 years (way shorter than Notan), I have

read so many stories of people having problems following their surgeries

performed by less qualified surgeons than you used, and eventually getting their

lives back.  You will too. I know that the waiting and the uncertainty can

drive a person literally insane, but you can't give up.  You are way too young

with a long life ahead.

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Wednesday, March 21, 2012 8:56 PM

Subject: Re: newbe facing decisions

 

I had a experienced expert do my HM in Nov last year and it didn't work! I think

he has done 100's and people come from around Australia and the world to see

him. So experience sometimes isn't going to make any difference!

(Australia)

>

> I haven't had the HM  yet, but do plan to within a month or so. I've waited

much too long - several years. Tried botox injections several times that gave

temporary relief, but that's it. Have been afraid of the HM because I've read

that it could increase spasms and I wasn't willing to trade for that.

>

> However, now that I've spoken with the surgeon - a very good one with over 500

HM's under his belt,  I feel much better. He also told me though that due to

the botox injections and resulting scar tissue, the procedure would have a

slight more risk (perforation). This would also be the case with dilatation. So,

if I were in your shoes, I would go for the gold with the HM and a very

qualified surgeon that has a great track record.

>

> This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

>

> I just know for me my quality of life has deteriorated to a point I'm willing

to take a chance with the HM. I'm also concerned about other health problems

because of my horrid diet and nutritional status. I try to take my antiox juice

and sublinguals as much as possible, but I know I'm at risk for other disease

since I'm not as healthy as I should be.

>

> That's my opinion. Hope it helps.

>

> Kim

>

>

>

>

> ________________________________

> From: DCBlogs <dcblogs@...>

> achalasia

> Sent: Wednesday, March 21, 2012 12:30 AM

> Subject: newbe facing decisions

>

>

>  

> I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

>

> My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

>

> A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

>

> I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

>

> I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

>

> I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

>

> I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

>

>

>

>

>

[Guest guest]

Perhaps I am his biggest failure?

> >

> > I haven't had the HM  yet, but do plan to within a month or so. I've

waited much too long - several years. Tried botox injections several times that

gave temporary relief, but that's it. Have been afraid of the HM because I've

read that it could increase spasms and I wasn't willing to trade for that.

> >

> > However, now that I've spoken with the surgeon - a very good one with over

500 HM's under his belt,  I feel much better. He also told me though that due

to the botox injections and resulting scar tissue, the procedure would have a

slight more risk (perforation). This would also be the case with dilatation. So,

if I were in your shoes, I would go for the gold with the HM and a very

qualified surgeon that has a great track record.

> >

> > This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

> >

> > I just know for me my quality of life has deteriorated to a point I'm

willing to take a chance with the HM. I'm also concerned about other health

problems because of my horrid diet and nutritional status. I try to take my

antiox juice and sublinguals as much as possible, but I know I'm at risk for

other disease since I'm not as healthy as I should be.

> >

> > That's my opinion. Hope it helps.

> >

> > Kim

> >

> >

> >

> >

> > ________________________________

> > From: DCBlogs <dcblogs@>

> > achalasia

> > Sent: Wednesday, March 21, 2012 12:30 AM

> > Subject: newbe facing decisions

> >

> >

> >  

> > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> >

> > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> >

> > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> >

> > I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

> >

> > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> >

> > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> >

> > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> >

> >

> >

> >

> >

[Guest guest]

, I'm counting on you making an improvement starting soon. Perhaps you're

just slower to heal.

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Wednesday, March 21, 2012 11:09 PM

Subject: Re: newbe facing decisions

 

Perhaps I am his biggest failure?

> >

> > I haven't had the HM  yet, but do plan to within a month or so. I've

waited much too long - several years. Tried botox injections several times that

gave temporary relief, but that's it. Have been afraid of the HM because I've

read that it could increase spasms and I wasn't willing to trade for that.

> >

> > However, now that I've spoken with the surgeon - a very good one with over

500 HM's under his belt,  I feel much better. He also told me though

that due to the botox injections and resulting scar tissue, the procedure would

have a slight more risk (perforation). This would also be the case with

dilatation. So, if I were in your shoes, I would go for the gold with the HM and

a very qualified surgeon that has a great track record.

> >

> > This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

> >

> > I just know for me my quality of life has deteriorated to a point I'm

willing to take a chance with the HM. I'm also concerned about other health

problems because of my horrid diet and nutritional status. I try to take my

antiox juice and sublinguals as much as possible, but I know I'm at risk for

other disease since I'm not as healthy as I should be.

> >

> > That's my opinion. Hope it helps.

> >

> > Kim

> >

> >

> >

> >

> > ________________________________

> > From: DCBlogs <dcblogs@>

> > achalasia

> > Sent: Wednesday, March 21, 2012 12:30 AM

> > Subject: newbe facing decisions

> >

> >

> >  

> > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> >

> > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> >

> > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> >

> > I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

> >

> > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> >

> > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> >

> > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> >

> >

> >

> >

> >

[Guest guest]

Thanks Kim! I must be a challenge for him! I wonder if he is scratching his

head wondering why it didn't work. I also wonder what his success rate is for

HM's. Will have to ask when I see him.

> > >

> > > I haven't had the HM  yet, but do plan to within a month or so.

I've waited much too long - several years. Tried botox injections several times

that gave temporary relief, but that's it. Have been afraid of the HM because

I've read that it could increase spasms and I wasn't willing to trade for that.

> > >

> > > However, now that I've spoken with the surgeon - a very good one with over

500 HM's under his belt,  I feel much better. He also told me though

that due to the botox injections and resulting scar tissue, the procedure would

have a slight more risk (perforation). This would also be the case with

dilatation. So, if I were in your shoes, I would go for the gold with the HM and

a very qualified surgeon that has a great track record.

> > >

> > > This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

> > >

> > > I just know for me my quality of life has deteriorated to a point I'm

willing to take a chance with the HM. I'm also concerned about other health

problems because of my horrid diet and nutritional status. I try to take my

antiox juice and sublinguals as much as possible, but I know I'm at risk for

other disease since I'm not as healthy as I should be.

> > >

> > > That's my opinion. Hope it helps.

> > >

> > > Kim

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: DCBlogs <dcblogs@>

> > > achalasia

> > > Sent: Wednesday, March 21, 2012 12:30 AM

> > > Subject: newbe facing decisions

> > >

> > >

> > >  

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> > >

> > >

> > >

> > >

[Guest guest]

That would be interesting - also how does he measure success?  My surgeon appt

is tomorrow - think I'll throw out the same question. Haven't been able to eat

or sleep in 3 days now and so ready to take the plunge.

Kim

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 22, 2012 12:02 AM

Subject: Re: newbe facing decisions

 

Thanks Kim! I must be a challenge for him! I wonder if he is scratching his

head wondering why it didn't work. I also wonder what his success rate is for

HM's. Will have to ask when I see him.

> > >

> > > I haven't had the HM  yet, but do plan to within a

month or so. I've waited much too long - several years. Tried botox injections

several times that gave temporary relief, but that's it. Have been afraid of the

HM because I've read that it could increase spasms and I wasn't willing to trade

for that.

> > >

> > > However, now that I've spoken with the surgeon - a very good one with over

500 HM's under his belt,  I feel much better. He also told me

though that due to the botox injections and resulting scar tissue, the procedure

would have a slight more risk (perforation). This would also be the case with

dilatation. So, if I were in your shoes, I would go for the gold with the HM and

a very qualified surgeon that has a great track record.

> > >

> > > This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

> > >

> > > I just know for me my quality of life has deteriorated to a point I'm

willing to take a chance with the HM. I'm also concerned about other health

problems because of my horrid diet and nutritional status. I try to take my

antiox juice and sublinguals as much as possible, but I know I'm at risk for

other disease since I'm not as healthy as I should be.

> > >

> > > That's my opinion. Hope it helps.

> > >

> > > Kim

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: DCBlogs <dcblogs@>

> > > achalasia

> > > Sent: Wednesday, March 21, 2012 12:30 AM

> > > Subject: newbe facing decisions

> > >

> > >

> > >  

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello and welcome! 

 

I had my surgery in 2010 and I was 52 at the time!  I could have writen your

post, as I spent WAY too many years learning to cope with a bad situation. 

Yes, I ate stupid things to keep my energy levels up during the work day and I

also usually vomited up my breakfast if it was a typical day!  Things did get

gradually worse for me, I suffered many years and was coping the best I could,

until the days and years came when things just kept coming back up and nothing

was staying down.  That said, I think you should do something " BUT " and this is

the MOST important thing you will learn.....you need to make sure you have one

of the TOP NOTCH surgeons that deal with ACHALASIA and have done at least 100

surgeries under their belt with good success. 

 

Long story short, when I found my surgeon (lived in Calif. at the time), I had a

list of questions that I needed answers.  Mainly, how do you do the " cut " ???

How many of your patients are successful and can I call some references??? 

Find out if they do a wrap and what kind of wrap they do??  Read up on the

wraps and see the success rates for them.  You have to be proactive, because

this is a RARE disorder/disease and getting a surgeon that doesn't know for sure

how to do it right can mess you up!!!!  MHO!

 

My surgeon told me that according to my tests and my situation she felt my

success rate would be 100%.  She was positive about it, I felt positive in

letting it happen.  I think it was the best thing I ever did.  I can eat and I

can function at 95% normal these days.  So for you the first step is to learn

about this surgery and ask lots of questions and soon you will know if you are

ready to take that step.  You are right that having good insurance helps, take

advantage of it while you can!!!

 

Julee in Oregon

 

________________________________

From: DCBlogs <dcblogs@...>

achalasia

Sent: Tuesday, March 20, 2012 9:30 PM

Subject: newbe facing decisions

 

I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

My problem began about two years ago with some swallowing difficulty. Actually,

it never felt that food was stuck but something wasn't working. I'd eat a little

and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

I'm 57 and despite this consider myself way lucky. I have no reason to complain.

I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

[Guest guest]

Although I am able to eat, I try very hard to drink juice and eat things that

are healthy, but overall my diet consists more of carbs, becuase they are easier

for me to swallow. It changes daily. Right now my doctor is happy that my weight

is good ( 5'3 and 120-125 pounds ) and I think at least 5 lbs of it is from

eating cake (banana cake has yet to fail me ) or Oreo Golden's. I have had viral

infection after viral infection, tired all the time and always seem to have a

cold. My doctor says my immune system is still not bounced back yet. I take

vitamins and my insurance company ( God love them ) appointed me a personal

nurse in the last couple of weeks. I peaked her interest because she has been a

nurse for 36 years and only has come across a handful of patients with this

dreadful disease. She had a relative years ago who they thought had it but

didn't so she did her homework and seems knowledgeable. I am grateful I had

someone to talk to .

I am a little apprehensive about HM but know that at some point I will have to

make a choice.

I am sure some people wit A could go to a nutritionist, which I thought about,

but for me it is not possible to be on any kind of regular diet. I am a lot

pickier now about what I eat then i used to be.

Unfortunatley a lot of trial and error but I really hope Kim that this works

well for you. I will cross my fingers!

 

Kim A

Wi

________________________________

From: Leda Mae <leda444@...>

" achalasia " <achalasia >

Sent: Wednesday, March 21, 2012 7:42 AM

Subject: Re: newbe facing decisions

 

I haven't had the HM  yet, but do plan to within a month or so. I've waited

much too long - several years. Tried botox injections several times that gave

temporary relief, but that's it. Have been afraid of the HM because I've read

that it could increase spasms and I wasn't willing to trade for that.

However, now that I've spoken with the surgeon - a very good one with over 500

HM's under his belt,  I feel much better. He also told me though that due to

the botox injections and resulting scar tissue, the procedure would have a

slight more risk (perforation). This would also be the case with dilatation. So,

if I were in your shoes, I would go for the gold with the HM and a very

qualified surgeon that has a great track record.

This is a wonderful group and I don't know what I would do without their

support. But...as someone pointed out, we may not be a representation of the

majority of people that have HM's with good outcomes. 

I just know for me my quality of life has deteriorated to a point I'm willing to

take a chance with the HM. I'm also concerned about other health problems

because of my horrid diet and nutritional status. I try to take my antiox juice

and sublinguals as much as possible, but I know I'm at risk for other disease

since I'm not as healthy as I should be.

That's my opinion. Hope it helps.

Kim

________________________________

From: DCBlogs <dcblogs@...>

achalasia

Sent: Wednesday, March 21, 2012 12:30 AM

Subject: newbe facing decisions

 

I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

My problem began about two years ago with some swallowing difficulty. Actually,

it never felt that food was stuck but something wasn't working. I'd eat a little

and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

I'm 57 and despite this consider myself way lucky. I have no reason to complain.

I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

[Guest guest]

Hi - welcome to the group!

I don't post very often, but I lurk when I can and watch for folks like

yourself.

My realization that something major was wrong was when I couldn't hold down

Thanksgiving dinner in 2007. Long story short, I was lucky enough to have a GI

who recognized/diagnosed achalasia immediately. I had a HM/Dor in May, 2008 with

Dr. at Emory in Atlanta. I still have occasional problems,

especially with soft bread and meat, but life is 1000% better.

You have to make your own choices, but don't stop asking questions until you're

satisfied that your own choice is clear to you.

The conclusion I came to after going through that was that having the HM as soon

as possible was the route to go. It seemed to me that that those who took this

path had fewer issues long-term.

Just 2 cents worth from a fellow traveler.

Keep asking questions, and Good Luck to you!

Lee in Santa Barbara (formerly from Atlanta)

>

> I'm really glad to have found this list and I've been reading through some of

the older posts. So, my question may seem super repetitive but it is earnest as

my treatment options begin to emerge.

>

> My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

>

> A new GI ordered a cat scan and a manometry, and conducted an endoscopy which

confirmed achalasia.

>

> I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

>

> I need to do something. This is wearing me down. On days when it seems really

difficult to eat and even drink anything, my energy level is low. I've managed

to adapt and keep up a good front, but worry that my lousy diet will bring its

own set of problems.

>

> I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

>

> I'm leaning toward surgery, in part because I'm employed with good insurance,

but if that changes, at my age, the options for insurance will evaporate so a

longer-lasting remedy, such as it is, seems like a better option. But that said,

I'm interested in any advice, especially any experiences with surgery that may

help me decide. Did the surgery really make a difference? Best regards --

>

[Guest guest]

I had my HM only 2 1/2 months after being diagnosed, then first dilation 3 1/2

months later....neither has worked.

Guess I was just one of the few unluckly ones.

> >

> > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> >

> > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> >

> > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> >

> > I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

> >

> > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> >

> > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> >

> > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> >

>

[Guest guest]

,

 

If it makes you feel any better, (and this really shouldn't), you are not

amongst the " few unlucky ones; " you are amongst the many unlucky ones.

The thing is, " luck " probably has nothing to do with it. So, in considering who

your surgeon is, Dr.  Bessell, he will figure out what is going on down

there. Something that either direct observation, or diagnostic tools, will

figure out why eating remains such a great challenge to you. Once that is done,

he can take the steps necessary to correct the problem.  While I know that the

use of the word, " luck " or " lucky " is just an expression, it seems to be used in

such a way that people think that for no other reason than " randomness " some

fare worse than others who have been operated on or had a dilatation. ,

you must believe that he will figure it out. For your part, you should keep a

" food " and " time " diary journalizing what you have eaten, when you ate it, and

whether it went down, sat there, or got regurgitated. Include the liquids also.

By giving him more information it might give him more to work with to " connect

the dots. "

 

On another post you wrote that you are never hungry.  Shouldn't that concern

someone who seems unable to get any food down? I would pose that question to the

good doctor also.

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, March 25, 2012 5:44 PM

Subject: Re: newbe facing decisions

 

I had my HM only 2 1/2 months after being diagnosed, then first dilation 3 1/2

months later....neither has worked.

Guess I was just one of the few unluckly ones.

> >

> > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> >

> > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> >

> > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> >

> > I met with a surgeon who is recommending a heller myotomy, and gave me good

reasons for it: unlike dilation it will last. I have an appt. coming up with my

GI to review my options which seem to boil down to HM or dilation.

> >

> > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> >

> > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> >

> > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> >

>

[Guest guest]

About never being hungry.....my GP's have said for years it's prob because of

the Nexium I used to take.

I know everyone is different, but it has to come down to some being lucky that

things work quickly, and some not!

> > >

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> >

>

>

>

>

>

[Guest guest]

Perhaps its just a matter of semantics.  I just don't believe that " luck " has

anything to do with it. But, certainly I can understand that from one's own

perspective there is an appearance of good luck and bad luck.

 

My wife is a " lifer " on Prevacid. In her case she gets hungry on a " regular "

schedule.  In your case, , since you rarely feel hungry, how do you know

how much to eat to satisfy your non-existent appetite?  Or should I know better

than to ask that question now, since most foods are not getting where they

should be going?

 

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Sunday, March 25, 2012 6:28 PM

Subject: Re: newbe facing decisions

 

About never being hungry.....my GP's have said for years it's prob because of

the Nexium I used to take.

I know everyone is different, but it has to come down to some being lucky that

things work quickly, and some not!

> > >

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> >

>

>

>

>

>

[Guest guest]

I eat only because I have to for energy and to survive. Although by eating I

mean Sustagen or soup mainly. I can feel when my energy levels drop because I

become 'shaky,' then I know I need something. I also know that if I don't have

something nearly every hour my energy drops.

Chocolate helps almost instantly for some quick energy!

> > > >

> > > > I'm really glad to have found this list and I've been reading through

some of the older posts. So, my question may seem super repetitive but it is

earnest as my treatment options begin to emerge.

> > > >

> > > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > > >

> > > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > > >

> > > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > > >

> > > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > > >

> > > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > > >

> > > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

(Australia) wrote:

>

> I had a experienced expert do my HM in Nov last year and it didn't

> work! I think he has done 100's and people come from around Australia

> and the world to see him. So experience sometimes isn't going to make

> any difference!

>

If anyone has a success rate of 100% for HM without redoes, it may just

mean he hasn't done the hard ones or enough of them to find the ones he

couldn't help. Generally HM success rates are around 90%. Some of the

better centers may be higher. Experience does raise the odds of getting

a good result but it can't guarantee it.

notan

[Guest guest]

Leda wrote:

>

> That would be interesting - also how does he measure success?

>

A very good question. There is no standard for success.

notan

[Guest guest]

wrote:

>

> Perhaps its just a matter of semantics. I just don't believe that

> " luck " has anything to do with it.

>

Semantics it is.

I believe the universe is a matter of causes (yes I know about

uncertainty but lets not go there now) but I also believe in chance. I

don't simply mean a thing can be a matter of some cause or a matter of

chance I see a thing as both. Free will and destiny are not

contradictory to me. They coexist. The irresistible force is also the

immovable object. Enough of that. I know that is a contradiction to most

people. I don't plan on changing anyone's mind on it.

In this group if the subject is something we can control I think of it

as not being by chance and not a matter of luck. If it is not something

we can control then I think of it as being by chance and a matter of luck.

I didn't get to pick my genes so they are to me a matter of luck. The

biology that went into the selection of what would become my genes may

have been very deterministic but the human experience here is chance and

it is not fair. We don't even get to role the same dice. Some families

seem to have loaded dice. Some loaded good and some loaded bad.

notan

[Guest guest]

There are obviously 'bad' genes in my family! My brother, nephew and cousin all

have Crohns! It was even my brothers doctor who diagnosed my A, but I didn't

know it at the time. Wonder if there is some link between A and Crohns? My

brother also said he would prefer to have Crohns than A. When he first said

that before I had the HM, I thought he was wrong. Boy was I wrong!!! He know

what he was saying!!

> >

> > Perhaps its just a matter of semantics. I just don't believe that

> > " luck " has anything to do with it.

> >

>

> Semantics it is.

>

> I believe the universe is a matter of causes (yes I know about

> uncertainty but lets not go there now) but I also believe in chance. I

> don't simply mean a thing can be a matter of some cause or a matter of

> chance I see a thing as both. Free will and destiny are not

> contradictory to me. They coexist. The irresistible force is also the

> immovable object. Enough of that. I know that is a contradiction to most

> people. I don't plan on changing anyone's mind on it.

>

> In this group if the subject is something we can control I think of it

> as not being by chance and not a matter of luck. If it is not something

> we can control then I think of it as being by chance and a matter of luck.

>

> I didn't get to pick my genes so they are to me a matter of luck. The

> biology that went into the selection of what would become my genes may

> have been very deterministic but the human experience here is chance and

> it is not fair. We don't even get to role the same dice. Some families

> seem to have loaded dice. Some loaded good and some loaded bad.

>

> notan

>

>

>

>

[Guest guest]

Re. being lucky or unlucky, has anyone's else's GP or surgeon ever told them

that they will ALWAYS have motility issues because of issues with the

ennervation of the muscles in the lower oesophagus?? My surgeon has told me that

people with A usually always have issues with those muscles as well as the LES,

so even surgery won't fix all of the problems. I'm wondering am I alone?

(Sorry for hijacking your post !!)

> > >

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> >

>

>

>

>

>

[Guest guest]

No - you are not alone. Some may suffer more than others. My swallowing

problems started last May and hit me like a freight train. There is no cure and

it is degenerative so could progressively get worse over the years. Some peope

respond really well to treatment and some don't.

 

So your doctor is correct!! 

________________________________

From: Lally <jennifer.m.lally@...>

achalasia

Sent: Monday, March 26, 2012 9:32 AM

Subject: Re: newbe facing decisions

 

Re. being lucky or unlucky, has anyone's else's GP or surgeon ever told them

that they will ALWAYS have motility issues because of issues with the

ennervation of the muscles in the lower oesophagus?? My surgeon has told me that

people with A usually always have issues with those muscles as well as the LES,

so even surgery won't fix all of the problems. I'm wondering am I alone?

(Sorry for hijacking your post !!)

> > >

> > > I'm really glad to have found this list and I've been reading through some

of the older posts. So, my question may seem super repetitive but it is earnest

as my treatment options begin to emerge.

> > >

> > > My problem began about two years ago with some swallowing difficulty.

Actually, it never felt that food was stuck but something wasn't working. I'd

eat a little and then saliva production would start in earnest leading to

semi-vomiting-coughing anything to get rid of the constant uncomfortable

feeling. Sometimes crushing chest pains would arrive, but a cardiologist ruled

out heart problems. My diet, through trial and error, shifted to Ensure/Boost,

Lipton noodle soup, frozen yogurt usually with walnuts, and lots of chocolate

candy to keep me energized during the work day. And for some reason I find it

easier to drink Gatorade instead of water, which can trigger a reaction. My

weight, after a drop, has stabilized.

> > >

> > > A new GI ordered a cat scan and a manometry, and conducted an endoscopy

which confirmed achalasia.

> > >

> > > I met with a surgeon who is recommending a heller myotomy, and gave me

good reasons for it: unlike dilation it will last. I have an appt. coming up

with my GI to review my options which seem to boil down to HM or dilation.

> > >

> > > I need to do something. This is wearing me down. On days when it seems

really difficult to eat and even drink anything, my energy level is low. I've

managed to adapt and keep up a good front, but worry that my lousy diet will

bring its own set of problems.

> > >

> > > I'm 57 and despite this consider myself way lucky. I have no reason to

complain.

> > >

> > > I'm leaning toward surgery, in part because I'm employed with good

insurance, but if that changes, at my age, the options for insurance will

evaporate so a longer-lasting remedy, such as it is, seems like a better option.

But that said, I'm interested in any advice, especially any experiences with

surgery that may help me decide. Did the surgery really make a difference? Best

regards --

> > >

> >

>

>

>

>

>

[Guest guest]

I ended up deciding to have a dilation. It will be done April 25th. I'll

take it as a first step. If it works, it works. If it doesn't then I'll be

more likely to go for the HM.

I'd love to be able to say that my decision was based on something

conclusive: careful study and learned insights. But after looking at some

of the material out there and reading all the wonderful stories that people

have shared on this list about their own experiences, it just becomes

impossible to make a considered decision. If there's such a thing as

mush-brain syndrome, I have it.

As what happens so many other times when life doesn't provide clear

guidance, as it was in this case, it was an action based on whatever gust

of wind blew through the window just before dialing the phone to make an

appointment.

The stories that people have shared on this list about HM have been very

helpful. This list is a wonderful resource and I have learned many new

things from it. I'll let you know how it goes.

Best,

Pat

On Mon, Mar 26, 2012 at 12:47 PM, Kim Abrams <xploring37@...> wrote:

> **

>

>

> No - you are not alone. Some may suffer more than others. My swallowing

> problems started last May and hit me like a freight train. There is no cure

> and it is degenerative so could progressively get worse over the years.

> Some peope respond really well to treatment and some don't.

>

> So your doctor is correct!!

>

> ________________________________

> From: Lally <jennifer.m.lally@...>

> achalasia

> Sent: Monday, March 26, 2012 9:32 AM

>

> Subject: Re: newbe facing decisions

>

>

> Re. being lucky or unlucky, has anyone's else's GP or surgeon ever told

> them that they will ALWAYS have motility issues because of issues with the

> ennervation of the muscles in the lower oesophagus?? My surgeon has told me

> that people with A usually always have issues with those muscles as well as

> the LES, so even surgery won't fix all of the problems. I'm wondering am I

> alone?

>

> (Sorry for hijacking your post !!)

>

>

>

>

> > > >

> > > > I'm really glad to have found this list and I've been reading

> through some of the older posts. So, my question may seem super repetitive

> but it is earnest as my treatment options begin to emerge.

> > > >

> > > > My problem began about two years ago with some swallowing

> difficulty. Actually, it never felt that food was stuck but something

> wasn't working. I'd eat a little and then saliva production would start in

> earnest leading to semi-vomiting-coughing anything to get rid of the

> constant uncomfortable feeling. Sometimes crushing chest pains would

> arrive, but a cardiologist ruled out heart problems. My diet, through trial

> and error, shifted to Ensure/Boost, Lipton noodle soup, frozen yogurt

> usually with walnuts, and lots of chocolate candy to keep me energized

> during the work day. And for some reason I find it easier to drink Gatorade

> instead of water, which can trigger a reaction. My weight, after a drop,

> has stabilized.

> > > >

> > > > A new GI ordered a cat scan and a manometry, and conducted an

> endoscopy which confirmed achalasia.

> > > >

> > > > I met with a surgeon who is recommending a heller myotomy, and gave

> me good reasons for it: unlike dilation it will last. I have an appt.

> coming up with my GI to review my options which seem to boil down to HM or

> dilation.

> > > >

> > > > I need to do something. This is wearing me down. On days when it

> seems really difficult to eat and even drink anything, my energy level is

> low. I've managed to adapt and keep up a good front, but worry that my

> lousy diet will bring its own set of problems.

> > > >

> > > > I'm 57 and despite this consider myself way lucky. I have no reason

> to complain.

> > > >

> > > > I'm leaning toward surgery, in part because I'm employed with good

> insurance, but if that changes, at my age, the options for insurance will

> evaporate so a longer-lasting remedy, such as it is, seems like a better

> option. But that said, I'm interested in any advice, especially any

> experiences with surgery that may help me decide. Did the surgery really

> make a difference? Best regards --

> > > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

Hi Pat,

 

You have been facing the proverbial " fork in the road, " and rather than your

making a choice of which direction to go, you let the " fork " decide.

 After all your research and reading all the stories here, that as a result of

finding it nearly impossible to make a clear decision, you basically came down

to making it a  " coin toss. "   How frustrated you must feel, though you would

never know it by your refreshing attitude about all this.

 

No matter how great or not the surgeon is for our HM or the GI doctor for the

dilatation, ultimately it is our decision which makes us responsible for the

outcome.  As we have learned, recently, and over the years of posts here, there

are no guarantees for a favorable outcome no matter what the choice ends up

being. We have all read about " success rates " but as one poster recently put it

(now in my own words), we need success to be measured in terms of years far

exceeding the two years that some studies go by.  Sadly, nobody can guarantee

anything.

 

A dilatation is a more conservative approach to this problem than a HM, which

you could always have later on. I don't know enough about your history to get a

feeling as to which choice might be preferable. Sadly, even going to the best

doesn't always work out, but usually gives the patient better odds. 

 

I wish you the best, as well as Geoffrey, who is having his HM on the same day

as your dilatation, and I hope the " gust of wind " blows in your direction that

day.

 

 

________________________________

From: dcblogs administrator <dcblogs@...>

achalasia

Sent: Tuesday, April 10, 2012 1:52 PM

Subject: Re: Re: newbe facing decisions

I ended up deciding to have a dilation. It will be done April 25th. I'll

take it as a first step. If it works, it works. If it doesn't then I'll be

more likely to go for the HM.

I'd love to be able to say that my decision was based on something

conclusive: careful study and learned insights. But after looking at some

of the material out there and reading all the wonderful stories that people

have shared on this list about their own experiences, it just becomes

impossible to make a considered decision. If there's such a thing as

mush-brain syndrome, I have it.

As what happens so many other times when life doesn't provide clear

guidance, as it was in this case, it was an action based on whatever gust

of wind blew through the window just before dialing the phone to make an

appointment.

The stories that people have shared on this list about HM have been very

helpful. This list is a wonderful resource and I have learned many new

things from it. I'll let you know how it goes.

Best,

Pat

On Mon, Mar 26, 2012 at 12:47 PM, Kim Abrams <xploring37@...> wrote:

> **

>

>

> No - you are not alone. Some may suffer more than others. My swallowing

> problems started last May and hit me like a freight train. There is no cure

> and it is degenerative so could progressively get worse over the years.

> Some peope respond really well to treatment and some don't.

>

> So your doctor is correct!!

>

> ________________________________

> From: Lally <jennifer.m.lally@...>

> achalasia

> Sent: Monday, March 26, 2012 9:32 AM

>

> Subject: Re: newbe facing decisions

>

>

> Re. being lucky or unlucky, has anyone's else's GP or surgeon ever told

> them that they will ALWAYS have motility issues because of issues with the

> ennervation of the muscles in the lower oesophagus?? My surgeon has told me

> that people with A usually always have issues with those muscles as well as

> the LES, so even surgery won't fix all of the problems. I'm wondering am I

> alone?

>

> (Sorry for hijacking your post !!)

>

>

>

>

> > > >

> > > > I'm really glad to have found this list and I've been reading

> through some of the older posts. So, my question may seem super repetitive

> but it is earnest as my treatment options begin to emerge.

> > > >

> > > > My problem began about two years ago with some swallowing

> difficulty. Actually, it never felt that food was stuck but something

> wasn't working. I'd eat a little and then saliva production would start in

> earnest leading to semi-vomiting-coughing anything to get rid of the

> constant uncomfortable feeling. Sometimes crushing chest pains would

> arrive, but a cardiologist ruled out heart problems. My diet, through trial

> and error, shifted to Ensure/Boost, Lipton noodle soup, frozen yogurt

> usually with walnuts, and lots of chocolate candy to keep me energized

> during the work day. And for some reason I find it easier to drink Gatorade

> instead of water, which can trigger a reaction. My weight, after a drop,

> has stabilized.

> > > >

> > > > A new GI ordered a cat scan and a manometry, and conducted an

> endoscopy which confirmed achalasia.

> > > >

> > > > I met with a surgeon who is recommending a heller myotomy, and gave

> me good reasons for it: unlike dilation it will last. I have an appt.

> coming up with my GI to review my options which seem to boil down to HM or

> dilation.

> > > >

> > > > I need to do something. This is wearing me down. On days when it

> seems really difficult to eat and even drink anything, my energy level is

> low. I've managed to adapt and keep up a good front, but worry that my

> lousy diet will bring its own set of problems.

> > > >

> > > > I'm 57 and despite this consider myself way lucky. I have no reason

> to complain.

> > > >

> > > > I'm leaning toward surgery, in part because I'm employed with good

> insurance, but if that changes, at my age, the options for insurance will

> evaporate so a longer-lasting remedy, such as it is, seems like a better

> option. But that said, I'm interested in any advice, especially any

> experiences with surgery that may help me decide. Did the surgery really

> make a difference? Best regards --

> > > >

> > >

> >

> >

> >

> >

> >