Re: Newbie Question(s)

[Guest guest]

You didn't sign your name.so I don't know what to call you..but fellow

achalasian!!!

First I'm sorry to hear that you have been diagnosed, but at least you know

what your up against now, I'm also sorry to hear about your friend, its hard

losing anyone and any point of your life!

As far as your doctor saying they wanted you to have it done locally so that

there is a doc near you, does make sense for the doctors!!! Have you checked

into the Mayo clinic down there? I don't know if anyone has went to the Mayo

clinics for their surgeries! I went to Cleveland Clinic, at the time lived

in Indiana. So it wasn't to bad of a trip! I have went once since I have

moved to Arkansas, that was a bit of a trip. But if I went again I would fly

the whole way! It is best to have a surgeon that has done many of these

procedures and has a good statistical outcome!! That just helps ensure your

possible outcome, while no one of us are the same and we have all had

different problems and there is no way of knowing before the procedure. I

would only go to Dr. Rice at CCF for another surgery! But that's ME and not

anyone else!!! I'm sure there will be plenty of people chime in to talk to

you and help ease the process of dealing with Achalasia.

in Arkansas

From: achalasia [mailto:achalasia ] On Behalf

Of love.james48

Sent: Monday, November 10, 2008 12:53 PM

achalasia

Subject: Newbie Question(s)

Sorry in advance - but this might be a bit long.

New to this group, and Achalasia, and have a few questions.

Background - I'm a 55 year old male who has just recently been

diagnosed with A. I guess I've had it for years and just didn't know

it, but then again neither did my GI Dr. I've been going to him over

the last 8-10 years telling him I had really bad heartburn and that

occasionally I had trouble swallowing my food. Since I smoked

cigarettes he did a endoscopy to make sure I didn't have Barrett's

Esophogus and didn't find anything so he prescribed Nexum. That

didn't give much relief so he next tried Prilosec. This also didn't

work and the swallowing problem was getting worse so he did another

endoscopy (this was after about a year or so) and found I had a

slight Hiatial Hernia. He said that although it wasn't very large

this was probably what was giving me a hard time swallowing and that

I was probably very sensative to it. He then put me on Prilosec

twice a day and said I'd probably just have to get used to the

hernia and deal with it since it really wasn't big enough to warrant

surgery. About 6-8 months ago my swallowing problem got to where it

was with every meal causing me to regurgitate to get a meal down.

Unlike some of you drinking water didn't help and in fact made

things worse, generating what seemed like gallons of saliva that I

also couldn't get down. Within the last 3-4 months it's gotten to

where I can only eat soup or puddings, and this is only on my " good "

days. Liquids are equally as bad, if not worse, with me only being

able to get down maybe 12 oz. of liquid a day, if I'm lucky and can

force myself to. I often go 24-36 hours without being able to eat or

drink anything.

2 months ago I went to my general practioner for my annual physical

(OK - I hadn't gotten a physical in 3 years but who's counting) and

he was concerned that I had lost 25-30 pounds for no apparent reason

(I'm 6' tall and now weigh 155 lbs.). Since I rarely ever get sick

and my bloodwork was exceptionally good he discounted cancer and had

me get a chest x-ray (remember - smoked cigarettes!). Got chest x-

ray - no problem - and he said " hey maybe you've got Achalasia,

let's send you back to the GI Dr. " Go back to GI Dr. get another

endoscopy, barrium swallow, and motility test and sure enough -

Achalasia.

Now here's the questions (I know, it's about time): I live in

Tallahassee Florida - GI Dr. recommends surgery (myotomy), and I

agree (hey - I want to eat!) but he's recommending a surgeon in

Tallahassee who has only done about 3-4 of these procedures.

Having " lurked " around this group long enough I say " How about

someone else, somewhere else, who is more familar with this

procedure. " His reply is " This surgery isn't that tough or

complicated. To get someone who has done a number of these

procedures you're going to have to go to a fairly large metropolitan

city. I'd feel better if you had someone local doing it where if

there is a problem afterwards they're available to you. " I've got to

admit - his logic has merit. He says performing the myotomy with a

lap is not as difficult or critical as it was without the lap since

the size of the cut can be bigger and then the lap can make up for

it. OPINIONS????

Does anyone have any experience with doctors in this area of the

country?

Realistically or typically, how long do we really think a myotomy is

going to last?

Thanks in advance for any input.

PS - Zlatko - I appreciate hearing/reading your opinion but having

watched and suffered with a dear friend with ALS who waited for stem

cell research here in the US and who actually went to China for a

procedure, I cannot wait to see if this is the answer to Achalasia.

Unfortunately it wasn't the answer for my friend either, he's no

longer with us.

[Guest guest]

, I live in Montgomery and once emailed a doctor in Atlanta who has

since moved to Mayo in ville. He indicated to me that " they " did a lot

of myotomies at Emory. I would certainly want to know exactly how many he'd

done. I never did have the surgery so I can't give you a more personal

opinion. I do know he did one member on this board at least 5 yrs ago and

maybe

longer and the last time I spoke with her she was doing well. My guess is she

still is or she would have been back to this board. Here is the an article

about his move to Mayo.

_C. , M.D., new chair of Surgery, Mayo Clinic, ville,

Fla._ (http://www.mayoclinic.org/checkup-2007/new-surgery-chair-march.html)

I think several people here has had surgery at Emory and I think the

doctor's name there is but I'm not sure. I'll bet someone will

chime

in with it though.

I know exactly how you feel about the urgency to get something done. I

first noticed my symptoms In November 1999, and by March of 2000 I could keep

neither food or water down. I actually missed the water more than I did food,

and I had lost a lot of weight too. I my case I needed too. I thought

though that I was going to die for the lack of water. I found an experienced

GI

at UAB in Birmingham who did a balloon dilatation on me using a 35mm balloon

and I could finally survive. In the meantime I ate chocolate. For some

reason the chocolate would go down even when water wouldn't. actually I think

it

relaxes the LES. Not healthy, but who cared at that point. I know we are

all different, but when you reach the point where neither food nor water will

go down you get desperate. So try some chocolate.

I have since learned that dilatations and Botox can reduce the chances of

long term results on surgery, but at the time I didn't know that and as

desperate as I was I might not have cared. That dilatation lasted 3 yrs. I

did

another and it has been almost 4 years. I elected the 2nd dilatation partially

because of my age. I figured as old as I am I might be able to out run this

thing.

Good luck on finding a surgeon do does at least 50 a year. I would

certainly email him and ask him some specific questions and tell him you want

to know

how many " he's done. " Don't let him be vague as he answered me. Oh

sometimes these doctors can be a big help to you in getting your insurance to

pay.

So be sure to try that.

Maggie

Alabama

**************AOL Search: Your one stop for directions, recipes and all other

Holiday needs. Search Now.

(http://pr.atwola.com/promoclk/100000075x1212792382x1200798498/aol?redir=http://\

searchblog.aol.com/2008/11/04/happy-holidays-from

-aol-search/?ncid=emlcntussear00000001)

[Guest guest]

Thanks for the reply

Yes I'm sorry I've got A but at least I know what I'm dealing with now -

it's much better than dealing with the unknown, although there doesn't seem

to be a lot known about A either.

And yes, my test results are being sent to Dr. Hinder @ Mayo (here in

ville) who I've heard is fairly well experienced with A.

Unfortunately my HMO doesn't have a relationship with Mayo, although they do

with Shands in Gainesville, so that's another problem. I don't mind fighting

with my HMO but it sure would help if my GI was on my side with this.

Maybe that's my problem - now that I know what my problem is I want to get

it fixed - NOW! I envision that if I have to go somewhere (Mayo, Cleveland,

wherever) I'm going to have to go for consultations, maybe additional

testing, and then the surgery. I see this taking months and although my body

can probably take it my mind is past overload and wants to get this over

with.

Sorry for the rant - guess I'm just getting frustrated

in Tally

Newbie Question(s)

Sorry in advance - but this might be a bit long.

New to this group, and Achalasia, and have a few questions.

Background - I'm a 55 year old male who has just recently been diagnosed

with A. I guess I've had it for years and just didn't know it, but then

again neither did my GI Dr. I've been going to him over the last 8-10 years

telling him I had really bad heartburn and that occasionally I had trouble

swallowing my food. Since I smoked cigarettes he did a endoscopy to make

sure I didn't have Barrett's Esophogus and didn't find anything so he

prescribed Nexum. That didn't give much relief so he next tried Prilosec.

This also didn't work and the swallowing problem was getting worse so he did

another endoscopy (this was after about a year or so) and found I had a

slight Hiatial Hernia. He said that although it wasn't very large this was

probably what was giving me a hard time swallowing and that I was probably

very sensative to it. He then put me on Prilosec twice a day and said I'd

probably just have to get used to the hernia and deal with it since it

really wasn't big enough to warrant surgery. About 6-8 months ago my

swallowing problem got to where it was with every meal causing me to

regurgitate to get a meal down.

Unlike some of you drinking water didn't help and in fact made things worse,

generating what seemed like gallons of saliva that I also couldn't get down.

Within the last 3-4 months it's gotten to where I can only eat soup or

puddings, and this is only on my " good "

days. Liquids are equally as bad, if not worse, with me only being able to

get down maybe 12 oz. of liquid a day, if I'm lucky and can force myself to.

I often go 24-36 hours without being able to eat or drink anything.

2 months ago I went to my general practioner for my annual physical (OK - I

hadn't gotten a physical in 3 years but who's counting) and he was concerned

that I had lost 25-30 pounds for no apparent reason (I'm 6' tall and now

weigh 155 lbs.). Since I rarely ever get sick and my bloodwork was

exceptionally good he discounted cancer and had me get a chest x-ray

(remember - smoked cigarettes!). Got chest x- ray - no problem - and he said

" hey maybe you've got Achalasia, let's send you back to the GI Dr. " Go back

to GI Dr. get another endoscopy, barrium swallow, and motility test and sure

enough - Achalasia.

Now here's the questions (I know, it's about time): I live in Tallahassee

Florida - GI Dr. recommends surgery (myotomy), and I agree (hey - I want to

eat!) but he's recommending a surgeon in Tallahassee who has only done about

3-4 of these procedures.

Having " lurked " around this group long enough I say " How about someone else,

somewhere else, who is more familar with this procedure. " His reply is " This

surgery isn't that tough or complicated. To get someone who has done a

number of these procedures you're going to have to go to a fairly large

metropolitan city. I'd feel better if you had someone local doing it where

if there is a problem afterwards they're available to you. " I've got to

admit - his logic has merit. He says performing the myotomy with a lap is

not as difficult or critical as it was without the lap since the size of the

cut can be bigger and then the lap can make up for it. OPINIONS????

Does anyone have any experience with doctors in this area of the country?

Realistically or typically, how long do we really think a myotomy is going

to last?

Thanks in advance for any input.

PS - Zlatko - I appreciate hearing/reading your opinion but having watched

and suffered with a dear friend with ALS who waited for stem cell research

here in the US and who actually went to China for a procedure, I cannot wait

to see if this is the answer to Achalasia.

Unfortunately it wasn't the answer for my friend either, he's no longer with

us.

[Guest guest]

Its more then normal to feel the way you are!!!! There are a lot of us that

have had to deal with HMO's or our insurance company not wanting to let us

go where we want!!! As for Cleveland, I went for consultation (I believe it

took 3 days) they scheduled everything for me, the last day I met with the

surgeon and made arrangements for the surgery. Which was suppose to be I

think it was 3-4 weeks later.I can't remember been years now!!! I ended up

not getting the surgery for 12 weeks because I had to fight with my

insurance..UGH!!! That was not fun so I can feel your pain there!!! My

surgery was open and not lap ( I had a previous surgery lap by a doc that

didn't know what he was doing and he really messed me up) so I was in the

hospital for 9 days, and up there for 2 weeks total for the surgery. I had

the open myotomy and a small portion of my E was removed, but I still have

most of it LOL, and Dr. Rice did want me to come back because of the extent

of my surgery, and if I had any problems I needed to come back and see him.

Whew!!! That was a lot of explaining!! I have since had 3 dilations (all at

ccf) due to scar tissue!!! But I wouldn't change a thing even with knowing

how much pain I was in, and it was quite a bit!! I had a pic line in my

neck, chest tube, ng tube, epidural, .you name it I had it LOL!! Now I can

eat anything I want, bread sometimes doesn't like me but if that's all I

have to deal with that's fine by me!!!!! More then worth all the pain,

travel and everything.

We are a great connected family here and you will get all the support that

you want!!!!

From: achalasia [mailto:achalasia ] On Behalf

Of Love

Sent: Monday, November 10, 2008 3:12 PM

achalasia

Subject: RE: Newbie Question(s)

Thanks for the reply

Yes I'm sorry I've got A but at least I know what I'm dealing with now -

it's much better than dealing with the unknown, although there doesn't seem

to be a lot known about A either.

And yes, my test results are being sent to Dr. Hinder @ Mayo (here in

ville) who I've heard is fairly well experienced with A.

Unfortunately my HMO doesn't have a relationship with Mayo, although they do

with Shands in Gainesville, so that's another problem. I don't mind fighting

with my HMO but it sure would help if my GI was on my side with this.

Maybe that's my problem - now that I know what my problem is I want to get

it fixed - NOW! I envision that if I have to go somewhere (Mayo, Cleveland,

wherever) I'm going to have to go for consultations, maybe additional

testing, and then the surgery. I see this taking months and although my body

can probably take it my mind is past overload and wants to get this over

with.

Sorry for the rant - guess I'm just getting frustrated

in Tally

Newbie Question(s)

Sorry in advance - but this might be a bit long.

New to this group, and Achalasia, and have a few questions.

Background - I'm a 55 year old male who has just recently been diagnosed

with A. I guess I've had it for years and just didn't know it, but then

again neither did my GI Dr. I've been going to him over the last 8-10 years

telling him I had really bad heartburn and that occasionally I had trouble

swallowing my food. Since I smoked cigarettes he did a endoscopy to make

sure I didn't have Barrett's Esophogus and didn't find anything so he

prescribed Nexum. That didn't give much relief so he next tried Prilosec.

This also didn't work and the swallowing problem was getting worse so he did

another endoscopy (this was after about a year or so) and found I had a

slight Hiatial Hernia. He said that although it wasn't very large this was

probably what was giving me a hard time swallowing and that I was probably

very sensative to it. He then put me on Prilosec twice a day and said I'd

probably just have to get used to the hernia and deal with it since it

really wasn't big enough to warrant surgery. About 6-8 months ago my

swallowing problem got to where it was with every meal causing me to

regurgitate to get a meal down.

Unlike some of you drinking water didn't help and in fact made things worse,

generating what seemed like gallons of saliva that I also couldn't get down.

Within the last 3-4 months it's gotten to where I can only eat soup or

puddings, and this is only on my " good "

days. Liquids are equally as bad, if not worse, with me only being able to

get down maybe 12 oz. of liquid a day, if I'm lucky and can force myself to.

I often go 24-36 hours without being able to eat or drink anything.

2 months ago I went to my general practioner for my annual physical (OK - I

hadn't gotten a physical in 3 years but who's counting) and he was concerned

that I had lost 25-30 pounds for no apparent reason (I'm 6' tall and now

weigh 155 lbs.). Since I rarely ever get sick and my bloodwork was

exceptionally good he discounted cancer and had me get a chest x-ray

(remember - smoked cigarettes!). Got chest x- ray - no problem - and he said

" hey maybe you've got Achalasia, let's send you back to the GI Dr. " Go back

to GI Dr. get another endoscopy, barrium swallow, and motility test and sure

enough - Achalasia.

Now here's the questions (I know, it's about time): I live in Tallahassee

Florida - GI Dr. recommends surgery (myotomy), and I agree (hey - I want to

eat!) but he's recommending a surgeon in Tallahassee who has only done about

3-4 of these procedures.

Having " lurked " around this group long enough I say " How about someone else,

somewhere else, who is more familar with this procedure. " His reply is " This

surgery isn't that tough or complicated. To get someone who has done a

number of these procedures you're going to have to go to a fairly large

metropolitan city. I'd feel better if you had someone local doing it where

if there is a problem afterwards they're available to you. " I've got to

admit - his logic has merit. He says performing the myotomy with a lap is

not as difficult or critical as it was without the lap since the size of the

cut can be bigger and then the lap can make up for it. OPINIONS????

Does anyone have any experience with doctors in this area of the country?

Realistically or typically, how long do we really think a myotomy is going

to last?

Thanks in advance for any input.

PS - Zlatko - I appreciate hearing/reading your opinion but having watched

and suffered with a dear friend with ALS who waited for stem cell research

here in the US and who actually went to China for a procedure, I cannot wait

to see if this is the answer to Achalasia.

Unfortunately it wasn't the answer for my friend either, he's no longer with

us.

[Guest guest]

Dear ,

I'd start with finding a new gi that will support you. Obviously

your old gi is kind of lacking in the achalasia area, you poor thing

suffering so long... so why would the HMO organization think he knows

what he is talking about????

I would suggest making a little summary of your history and pertinent

test results and emailing to supportive gi doctors that are IN your

HMO. Follow up with a phone call, all with the intent of getting you

forwarded to a good surgeon, assuming you want surgery.

Or send direct to your desired surgeon and his or her office staff

will help you with the paperwork. Contrary to your gi's opinion, the

skill of the surgeon is highly coordinated with the long term

success. (DUH???)

As with any of us, in any of our jobs, don't your cringe to think how

little you knew when you handled your first client, or job, or first

whatever? For example... painting interiors... Look how slow you

did the first time, how much faster you are, when you watch your kids

learn... and probably how fast and efficient professional painters

are. Same thing with surgeons. You want one who does this often.

Even a surgeon who does bariatric surgery or other esophagus

surgeries, you want someone who does myotomies, hopefully at least

one a week, more likely more.

Really, if your current gi knew his stuff, he would have ordered a

manometry long ago and you would have been diagnosed a while ago.

Sandy in So Cal

(son and daughter helping to paint their bedrooms)

>

> Sorry in advance - but this might be a bit long.

> New to this group, and Achalasia, and have a few questions.

> Background - I'm a 55 year old male who has just recently been

> diagnosed with A. I guess I've had it for years and just didn't

know

> it, but then again neither did my GI Dr. I've been going to him

over

> the last 8-10 years telling him I had really bad heartburn and that

> occasionally I had trouble swallowing my food. Since I smoked

> cigarettes he did a endoscopy to make sure I didn't have Barrett's

> Esophogus and didn't find anything so he prescribed Nexum. That

> didn't give much relief so he next tried Prilosec. This also didn't

> work and the swallowing problem was getting worse so he did another

> endoscopy (this was after about a year or so) and found I had a

> slight Hiatial Hernia. He said that although it wasn't very large

> this was probably what was giving me a hard time swallowing and

that

> I was probably very sensative to it. He then put me on Prilosec

> twice a day and said I'd probably just have to get used to the

> hernia and deal with it since it really wasn't big enough to

warrant

> surgery. About 6-8 months ago my swallowing problem got to where it

> was with every meal causing me to regurgitate to get a meal down.

> Unlike some of you drinking water didn't help and in fact made

> things worse, generating what seemed like gallons of saliva that I

> also couldn't get down. Within the last 3-4 months it's gotten to

> where I can only eat soup or puddings, and this is only on

my " good "

> days. Liquids are equally as bad, if not worse, with me only being

> able to get down maybe 12 oz. of liquid a day, if I'm lucky and can

> force myself to. I often go 24-36 hours without being able to eat

or

> drink anything.

> 2 months ago I went to my general practioner for my annual physical

> (OK - I hadn't gotten a physical in 3 years but who's counting) and

> he was concerned that I had lost 25-30 pounds for no apparent

reason

> (I'm 6' tall and now weigh 155 lbs.). Since I rarely ever get sick

> and my bloodwork was exceptionally good he discounted cancer and

had

> me get a chest x-ray (remember - smoked cigarettes!). Got chest x-

> ray - no problem - and he said " hey maybe you've got Achalasia,

> let's send you back to the GI Dr. " Go back to GI Dr. get another

> endoscopy, barrium swallow, and motility test and sure enough -

> Achalasia.

> Now here's the questions (I know, it's about time): I live in

> Tallahassee Florida - GI Dr. recommends surgery (myotomy), and I

> agree (hey - I want to eat!) but he's recommending a surgeon in

> Tallahassee who has only done about 3-4 of these procedures.

> Having " lurked " around this group long enough I say " How about

> someone else, somewhere else, who is more familar with this

> procedure. " His reply is " This surgery isn't that tough or

> complicated. To get someone who has done a number of these

> procedures you're going to have to go to a fairly large

metropolitan

> city. I'd feel better if you had someone local doing it where if

> there is a problem afterwards they're available to you. " I've got

to

> admit - his logic has merit. He says performing the myotomy with a

> lap is not as difficult or critical as it was without the lap since

> the size of the cut can be bigger and then the lap can make up for

> it. OPINIONS????

> Does anyone have any experience with doctors in this area of the

> country?

> Realistically or typically, how long do we really think a myotomy

is

> going to last?

>

> Thanks in advance for any input.

>

>

> PS - Zlatko - I appreciate hearing/reading your opinion but having

> watched and suffered with a dear friend with ALS who waited for

stem

> cell research here in the US and who actually went to China for a

> procedure, I cannot wait to see if this is the answer to Achalasia.

> Unfortunately it wasn't the answer for my friend either, he's no

> longer with us.

>

[Guest guest]

james fighting the hmo fight myself for my son. I find it really hard to believe

the insurance companies can now dictate to you who can and cannot operate on

you, but it seem to be true...angela

Newbie Question(s)

Sorry in advance - but this might be a bit long.

New to this group, and Achalasia, and have a few questions.

Background - I'm a 55 year old male who has just recently been diagnosed

with A. I guess I've had it for years and just didn't know it, but then

again neither did my GI Dr. I've been going to him over the last 8-10 years

telling him I had really bad heartburn and that occasionally I had trouble

swallowing my food. Since I smoked cigarettes he did a endoscopy to make

sure I didn't have Barrett's Esophogus and didn't find anything so he

prescribed Nexum. That didn't give much relief so he next tried Prilosec.

This also didn't work and the swallowing problem was getting worse so he did

another endoscopy (this was after about a year or so) and found I had a

slight Hiatial Hernia. He said that although it wasn't very large this was

probably what was giving me a hard time swallowing and that I was probably

very sensative to it. He then put me on Prilosec twice a day and said I'd

probably just have to get used to the hernia and deal with it since it

really wasn't big enough to warrant surgery. About 6-8 months ago my

swallowing problem got to where it was with every meal causing me to

regurgitate to get a meal down.

Unlike some of you drinking water didn't help and in fact made things worse,

generating what seemed like gallons of saliva that I also couldn't get down.

Within the last 3-4 months it's gotten to where I can only eat soup or

puddings, and this is only on my " good "

days. Liquids are equally as bad, if not worse, with me only being able to

get down maybe 12 oz. of liquid a day, if I'm lucky and can force myself to.

I often go 24-36 hours without being able to eat or drink anything.

2 months ago I went to my general practioner for my annual physical (OK - I

hadn't gotten a physical in 3 years but who's counting) and he was concerned

that I had lost 25-30 pounds for no apparent reason (I'm 6' tall and now

weigh 155 lbs.). Since I rarely ever get sick and my bloodwork was

exceptionally good he discounted cancer and had me get a chest x-ray

(remember - smoked cigarettes!). Got chest x- ray - no problem - and he said

" hey maybe you've got Achalasia, let's send you back to the GI Dr. " Go back

to GI Dr. get another endoscopy, barrium swallow, and motility test and sure

enough - Achalasia.

Now here's the questions (I know, it's about time): I live in Tallahassee

Florida - GI Dr. recommends surgery (myotomy), and I agree (hey - I want to

eat!) but he's recommending a surgeon in Tallahassee who has only done about

3-4 of these procedures.

Having " lurked " around this group long enough I say " How about someone else,

somewhere else, who is more familar with this procedure. " His reply is " This

surgery isn't that tough or complicated. To get someone who has done a

number of these procedures you're going to have to go to a fairly large

metropolitan city. I'd feel better if you had someone local doing it where

if there is a problem afterwards they're available to you. " I've got to

admit - his logic has merit. He says performing the myotomy with a lap is

not as difficult or critical as it was without the lap since the size of the

cut can be bigger and then the lap can make up for it. OPINIONS????

Does anyone have any experience with doctors in this area of the country?

Realistically or typically, how long do we really think a myotomy is going

to last?

Thanks in advance for any input.

PS - Zlatko - I appreciate hearing/reading your opinion but having watched

and suffered with a dear friend with ALS who waited for stem cell research

here in the US and who actually went to China for a procedure, I cannot wait

to see if this is the answer to Achalasia.

Unfortunately it wasn't the answer for my friend either, he's no longer with

us.

[Guest guest]

Hi, ,

 

        I've enjoyed reading the excellent comments given to you by Ann, Notan,

and Sandy in So Cal.  And I agree with Sandy that your doctor should

have ordered the manometry asap.

 

        What I hadn't known, until I read through the posts, was that dilations

lesson

the chance of long-term success with the myotomy.  Wow.  (I went straight for

the

myotomy, no dilations and no botox, thank you, but I did it because I thought of

it

as an " end run " and I, too, was impatient to get on with my life and not

wondering as

if the next time I had Chinese stir-fry noodles in a mall that they'd shoot out

my

nostrils like soaring snakes on fire after I'd attempted to push them down with

a

tall glass of diet Coke, which also shot out my nostrils.  Talk about a free

show!

And, my! didn't I look dandy with twelve-inch noodles hanging out of my nose

while

Coke dribbled down onto the table!  (I think not!)

 

        Go for info. Go asap.

 

        And, I wish every one of us here the Best of Swallows (and I am not

referring to Capistrano),

                                         Deborah

[Guest guest]

,

My surgeon thought you could expect a myotomy to last 6-10 years, but she said

you could get lucky and it could last 30.  Everyone's body is different, and

everyone reacts to surgery different.  She also said to expect that you'll never

be able to swallow normal.  Since my myotomy on October 16, I have gained 5 lbs

and I feel like it has given me new life.  I even invited friends over for

supper yesterday.  I basically eat what I want now, but I'm trying to take it

easy (no steaks yet).   I've had a few things stick since the myotomy, mostly

sticky soft stuff. 

I don't know about doctors in Florida, but I know several have been mentioned

from Georgia.  You could search the archives to find this info. 

I would use the word lap to mean laproscopic.  Did you mean fundoplication?  I

was confused by one of your questions.

Hope this helps and I pray you find relief soon,

Jeff

________________________________

From: love.james48 <jrl@...>

achalasia

Sent: Monday, November 10, 2008 12:52:35 PM

Subject: Newbie Question(s)

Sorry in advance - but this might be a bit long.

New to this group, and Achalasia, and have a few questions.

Background - I'm a 55 year old male who has just recently been

diagnosed with A. I guess I've had it for years and just didn't know

it, but then again neither did my GI Dr. I've been going to him over

the last 8-10 years telling him I had really bad heartburn and that

occasionally I had trouble swallowing my food. Since I smoked

cigarettes he did a endoscopy to make sure I didn't have Barrett's

Esophogus and didn't find anything so he prescribed Nexum. That

didn't give much relief so he next tried Prilosec. This also didn't

work and the swallowing problem was getting worse so he did another

endoscopy (this was after about a year or so) and found I had a

slight Hiatial Hernia. He said that although it wasn't very large

this was probably what was giving me a hard time swallowing and that

I was probably very sensative to it. He then put me on Prilosec

twice a day and said I'd probably just have to get used to the

hernia and deal with it since it really wasn't big enough to warrant

surgery. About 6-8 months ago my swallowing problem got to where it

was with every meal causing me to regurgitate to get a meal down.

Unlike some of you drinking water didn't help and in fact made

things worse, generating what seemed like gallons of saliva that I

also couldn't get down. Within the last 3-4 months it's gotten to

where I can only eat soup or puddings, and this is only on my " good "

days. Liquids are equally as bad, if not worse, with me only being

able to get down maybe 12 oz. of liquid a day, if I'm lucky and can

force myself to. I often go 24-36 hours without being able to eat or

drink anything.

2 months ago I went to my general practioner for my annual physical

(OK - I hadn't gotten a physical in 3 years but who's counting) and

he was concerned that I had lost 25-30 pounds for no apparent reason

(I'm 6' tall and now weigh 155 lbs.). Since I rarely ever get sick

and my bloodwork was exceptionally good he discounted cancer and had

me get a chest x-ray (remember - smoked cigarettes!) . Got chest x-

ray - no problem - and he said " hey maybe you've got Achalasia,

let's send you back to the GI Dr. " Go back to GI Dr. get another

endoscopy, barrium swallow, and motility test and sure enough -

Achalasia.

Now here's the questions (I know, it's about time): I live in

Tallahassee Florida - GI Dr. recommends surgery (myotomy), and I

agree (hey - I want to eat!) but he's recommending a surgeon in

Tallahassee who has only done about 3-4 of these procedures.

Having " lurked " around this group long enough I say " How about

someone else, somewhere else, who is more familar with this

procedure. " His reply is " This surgery isn't that tough or

complicated. To get someone who has done a number of these

procedures you're going to have to go to a fairly large metropolitan

city. I'd feel better if you had someone local doing it where if

there is a problem afterwards they're available to you. " I've got to

admit - his logic has merit. He says performing the myotomy with a

lap is not as difficult or critical as it was without the lap since

the size of the cut can be bigger and then the lap can make up for

it. OPINIONS????

Does anyone have any experience with doctors in this area of the

country?

Realistically or typically, how long do we really think a myotomy is

going to last?

Thanks in advance for any input.

PS - Zlatko - I appreciate hearing/reading your opinion but having

watched and suffered with a dear friend with ALS who waited for stem

cell research here in the US and who actually went to China for a

procedure, I cannot wait to see if this is the answer to Achalasia.

Unfortunately it wasn't the answer for my friend either, he's no

longer with us.

[Guest guest]

, in case you check out Emory, my wonderful thoracic surgeon who performed

my lap myotomy at the Univ of MI on 10/7 was recently recruited by Emory.  I

believe he is heading up their thoracic surgery dept there, specializing in lap

procedures.  His name is Allan Pickens, and he was due to move the end of Oct. 

He did the most lap myotomies at the Univ of MI. 

Good luck to you!

Eloisa

________________________________

From: " LunaIam2@... " <LunaIam2@...>

achalasia

Sent: Monday, November 10, 2008 8:07:36 PM

Subject: Re: Newbie Question(s)

, I live in Montgomery and once emailed a doctor in Atlanta who has

since moved to Mayo in ville. He indicated to me that " they " did a lot

of myotomies at Emory. I would certainly want to know exactly how many he'd

done. I never did have the surgery so I can't give you a more personal

opinion. I do know he did one member on this board at least 5 yrs ago and maybe

longer and the last time I spoke with her she was doing well. My guess is she

still is or she would have been back to this board. Here is the an article

about his move to Mayo.

_C. , M.D., new chair of Surgery, Mayo Clinic, ville,

Fla._ (http://www.mayoclin ic.org/checkup- 2007/new- surgery-chair- march.html)

I think several people here has had surgery at Emory and I think the

doctor's name there is but I'm not sure. I'll bet someone will

chime

in with it though.

I know exactly how you feel about the urgency to get something done. I

first noticed my symptoms In November 1999, and by March of 2000 I could keep

neither food or water down. I actually missed the water more than I did food,

and I had lost a lot of weight too. I my case I needed too. I thought

though that I was going to die for the lack of water. I found an experienced GI

at UAB in Birmingham who did a balloon dilatation on me using a 35mm balloon

and I could finally survive. In the meantime I ate chocolate. For some

reason the chocolate would go down even when water wouldn't. actually I think it

relaxes the LES. Not healthy, but who cared at that point. I know we are

all different, but when you reach the point where neither food nor water will

go down you get desperate. So try some chocolate.

I have since learned that dilatations and Botox can reduce the chances of

long term results on surgery, but at the time I didn't know that and as

desperate as I was I might not have cared. That dilatation lasted 3 yrs. I did

another and it has been almost 4 years. I elected the 2nd dilatation partially

because of my age. I figured as old as I am I might be able to out run this

thing.

Good luck on finding a surgeon do does at least 50 a year. I would

certainly email him and ask him some specific questions and tell him you want to

know

how many " he's done. " Don't let him be vague as he answered me. Oh

sometimes these doctors can be a big help to you in getting your insurance to

pay.

So be sure to try that.

Maggie

Alabama

************ **AOL Search: Your one stop for directions, recipes and all other

Holiday needs. Search Now.

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[Guest guest]

To Deborah and everyone else who replied:

Thanks I needed this, especially Deborah (the visual I get is priceless!) -

I needed some humor injected in here to bring me back into focus. I normally

look at and deal with life with a spot of humor and a note of irony but I'm

afraid I let myself get invited to a pity party on Monday and was feeling

sorry for myself. Granted - if this condition doesn't get you depressed at

times there must be something seriously wrong with you, but you've also got

to laugh at some of the situations you find yourself in. I mean how many

creative places can you really find to regurg at or into! Before Achalasia,

who'd have thought the human body could actually generate that much

foam/saliva! Wait it get's better:

OK so here I am Monday, getting home from work feeling down in the dumps

with myself, I let my three dogs out of the house (live on 5 acres of fenced

land in a rural area) and one comes screaming back into the house limping

and crying. Since these are three terriers (terrors), whose sole purpose in

life is to chase, dig-up, and/or harrass any living thing on this 5 acre

plot of land, I already know what's happened. He's been snake-bit! With

these three scoundrels this isn't an unusual occurrence (they've all been

bitten at least once) so I already know the drill - rush him to the vet -

get him started on IV's and pain meds and keep this going all night - been

there, done that. Well I promised my son and his friends I'd take them

fishing Tuesday (off work Veteran's Day) so what the heck it's 5:30 AM and

I'm awake, might as well go. Off we go to the coast (salt water fishing - 2

1/2 hour drive) and I'm enjoying the day when my son's cell phone rings (who

brings a cell phone fishing?). It's my wife (who's baby sitting the invalid

dog) saying the local surgeon my GI doctor recommended, who I'm not

scheduled to see to see for a consultation till 12/5/08 (he couldn't see me

before that) has called and can squeeze me in at 2:30PM. Well it's 12:30 PM

(did I say it's a 2 1/2 hour drive?) so I play NASCAR driver getting back to

town and my wife meets me outside the doctor's office with clean clothes

(although I smell like low tide - yes, we caught fish!) and I go in for a 1

1/12 hour wait!

We talk - turns out he's done more than 3-4 myotomy's - he's done about 50.

I ask him about some details of the surgery - whether he intends to do a

wrap with it (yes, I misspoke on earlier e-mail and reffered to this as a

lap). He said no wrap, that the results of my manometry showed little or no

muscle pressure (peristalsis?) in my esophagus and that any type of wrap,

even a partial, would not allow food to go down. He knows I'm also looking

at other doctors and said any doctor who looks at my manometry, and still

talks about doing a wrap, I should run, not walk away from. I discussed with

him his success rate. He says out of the 50 myotomy's he's done he's only

had one re-do and that that was one of his first ones. He said he's had

patients he's done over 15 years ago that have yet to have a problem. He

likes the fact that I haven't had any BOTOX or dilations (helps the success

rate). I've had this guy checked out extensively and he's considered the

best thoracic and laproscopic surgeon in town.

Soooo - although I'm not completely sold on this guy I'm feeling a lot

better about him. Will wait to hear back from other doctors that me and my

GI doctor have contacted.

Bottom line - life's an adventure - if you can't find the humor in it and

laugh at it, on occasion, it'll wear you down. Thanks again to everyone who

replied to me and picked me up.

in Tally

Re: Newbie Question(s)

Hi, ,

 

        I've enjoyed reading the excellent comments given to you by Ann,

Notan, and Sandy in So Cal.  And I agree with Sandy that your

doctor should have ordered the manometry asap.

 

        What I hadn't known, until I read through the posts, was that

dilations lesson the chance of long-term success with the myotomy.  Wow.  (I

went straight for the myotomy, no dilations and no botox, thank you, but I

did it because I thought of it as an " end run " and I, too, was impatient to

get on with my life and not wondering as if the next time I had Chinese

stir-fry noodles in a mall that they'd shoot out my nostrils like soaring

snakes on fire after I'd attempted to push them down with a tall glass of

diet Coke, which also shot out my nostrils.  Talk about a free show!

And, my! didn't I look dandy with twelve-inch noodles hanging out of my nose

while Coke dribbled down onto the table!  (I think not!)

 

        Go for info. Go asap.

 

        And, I wish every one of us here the Best of Swallows (and I am not

referring to Capistrano),

                                         Deborah

[Guest guest]

,

I don't spend as much time here as when I was in your situation, but I

certainly relate. You're in the best place for achalasia support that

can be found anywhere, IMHO.

I'm 58, and was diagnosed with achalasia in early 2008, after several

months of rapidly increasing symptoms. I lost 70 lbs in about 6 months

- no fun. I used the resources ii found through the good folks in this

group to come to the conclusion that I wanted the myotomy, and to find

Dr. at Emory in Atlanta (I live in the Atlanta area). He

studied (at Mayo) and worked (at Emory) with Dr. (who is

more of a general surgeon). Here's a link to his CV, and a previous

post of mine where I talk about my experience with him:

http://www.surgery.emory.edu/cardio_surgery/fac_d_miller.htm

achalasia/message/51716

After 6 months, I've gained back 45 lbs of the 70 lbs I lost (a little

more than I wanted to, but that's pretty normal), and have had no

complications. Life is not the same as before A, but it the operation

has given me a quality of life that I don't believe would have been

possible any other way. Dr. performs several myotomies every

month, and focuses on all things esophagus.

There are many here who swear by Dr. Rice in Cleveland, and he's a

great choice too. If you search the posts here for geminiguy50 you'll

see what I've written about Dr. and my experience with A so

far. I'm still a relative newbie, in terms of my experience with

achalasia, but as you've probably seen from the posts of others, the

advice to find the best, most experienced (with A) surgeon you can is

the way to go. In your case, a GI who understands achalasia, and how

it can be treated most effectively would certainly help.

It is frustrating, but understand that in time, with proper treatment,

you will probably live a pretty normal life again. The upside of

having A is that you learn to be thankful for many small things that

may have previously escaped your attention - at least that's what's

happened to me.

I wish you the best of luck - if you want to speak with me about any

of this, feel free to call me at 770-309-0476.

Lee Oppert

>

> , in case you check out Emory, my wonderful thoracic surgeon

who performed my lap myotomy at the Univ of MI on 10/7 was recently

recruited by Emory. I believe he is heading up their thoracic surgery

dept there, specializing in lap procedures. His name is Allan

Pickens, and he was due to move the end of Oct. He did the most lap

myotomies at the Univ of MI.

>

> Good luck to you!

>

> Eloisa

>

>

>

>

> ________________________________

> From: " LunaIam2@... " <LunaIam2@...>

> achalasia

> Sent: Monday, November 10, 2008 8:07:36 PM

> Subject: Re: Newbie Question(s)

>

>

>

> , I live in Montgomery and once emailed a doctor in Atlanta who

has

> since moved to Mayo in ville. He indicated to me that " they "

did a lot

> of myotomies at Emory. I would certainly want to know exactly how

many he'd

> done. I never did have the surgery so I can't give you a more personal

> opinion. I do know he did one member on this board at least 5 yrs

ago and maybe

> longer and the last time I spoke with her she was doing well. My

guess is she

> still is or she would have been back to this board. Here is the an

article

> about his move to Mayo.

>

> _C. , M.D., new chair of Surgery, Mayo Clinic,

ville,

> Fla._ (http://www.mayoclin ic.org/checkup- 2007/new- surgery-chair-

march.html)

>

> I think several people here has had surgery at Emory and I think the

> doctor's name there is but I'm not sure. I'll bet

someone will chime

> in with it though.

>

> I know exactly how you feel about the urgency to get something done. I

> first noticed my symptoms In November 1999, and by March of 2000 I

could keep

> neither food or water down. I actually missed the water more than I

did food,

> and I had lost a lot of weight too. I my case I needed too. I thought

> though that I was going to die for the lack of water. I found an

experienced GI

> at UAB in Birmingham who did a balloon dilatation on me using a 35mm

balloon

> and I could finally survive. In the meantime I ate chocolate. For some

> reason the chocolate would go down even when water wouldn't.

actually I think it

> relaxes the LES. Not healthy, but who cared at that point. I know we

are

> all different, but when you reach the point where neither food nor

water will

> go down you get desperate. So try some chocolate.

>

> I have since learned that dilatations and Botox can reduce the

chances of

> long term results on surgery, but at the time I didn't know that and as

> desperate as I was I might not have cared. That dilatation lasted 3

yrs. I did

> another and it has been almost 4 years. I elected the 2nd dilatation

partially

> because of my age. I figured as old as I am I might be able to out

run this

> thing.

>

> Good luck on finding a surgeon do does at least 50 a year. I would

> certainly email him and ask him some specific questions and tell him

you want to know

> how many " he's done. " Don't let him be vague as he answered me. Oh

> sometimes these doctors can be a big help to you in getting your

insurance to pay.

> So be sure to try that.

>

> Maggie

> Alabama

>

> ************ **AOL Search: Your one stop for directions, recipes and

all other

> Holiday needs. Search Now.

> (http://pr.atwola. com/promoclk/ 100000075x121279 2382x1200798498/

aol?redir= http://searchblo g.aol.com/ 2008/11/04/ happy-holidays- from

> -aol-search/ ?ncid=emlcntusse ar00000001)

>

>

[Guest guest]

wrote:

> ... He said no wrap, that the results of my manometry showed little or no

> muscle pressure (peristalsis?) in my esophagus and that any type of wrap,

> even a partial, would not allow food to go down. ...

I was going to wait to later today to answer email but I just have to

comment on this.

The main criterion for a diagnosis of achalasia is aperistalsis of the

lower esophagus. From the name, achalasia, you would think it was LES

pressure and the failure for it to completely relax. LES problems are

typical but aperistalsis is the main criterion. Often people who still

have some peristalsis but have trouble with the LES are told they have

achalasia and in the past the term achalasia was more inclusive. Some of

the people here probably do have peristalsis other than trouble right at

the LES. But, when you read studies about the effectiveness of heller

myotomy with fundoplication those are largely about patients that have

aperistalsis. Often, there is some dilation of the esophagus too and the

constrictions of peristalsis can't even close the gap. In this case the

manometry shows what is called common cavity. Any muscle activity

anywhere on the cavity causes a rise in pressure that is small because

it is spread out throughout the entire cavity because it is one big open

cavity. These constrictions are not productive. Even so, most of us have

had wraps, fundoplications, with our myotomies and many of us who have

had them are doing well. Go to PubMed and search for studies about

myotomy with fundoplications.

If no wrap is done with a myotomy then the LES has to be left strong

enough to keep acid from refluxing. This is tricky because if it is left

too strong the myotomy will not be effective, but iff there is no

peristalsis there is little difference between one that is too strong

and one that is too weak. It has to be loose enough to let gravity alone

move the food down through it but strong enough to stop acid from

refluxing. Think about that. It almost sounds impossible. But it is

possible just tricky. Other surgeons feel it is better to make sure the

LES is weak and then add a wrap. They tend to make a longer myotomy. The

wrap should provide very gentle pressure and work with gravity alone. Of

course the wrap can go bad.

To some degree it depends on how much the surgeon fears acid reflux or

incomplete myotomy.

Again, there is no right answer and doctors opinions differ about this.

Not just to do a wrap or not but which wrap and then how long to make

the myotomy. It is all six of one or a half dozen of another.

I suggest you look at the studies and see which risk you prefer not just

what your doctor prefers. A different doctor may have a different

preference and yet be just as qualified as this doc that said run from

them. Opinions in this support group also differ on whether a wrap is

best or not. If your esophagus was very long, bent, and very dilated I

think there would be more of a case for skipping the wrap. If you don't

mind taking a PPI for the rest of your life then that could also effect

your choice. You may want to ask your doctors how many of their patients

end up on PPIs for life. I am on a PPI. Some people are bothered by that

idea more than others. I am comfortable with it, though I would prefer

not be on them. The risk of being on a PPI was not a factor for me in

choosing to have the surgery I did. It may be a factor for you though.

Some studies suggest that one of the main reasons for problems years

after the myotomy is due to damage from acid reflux. Read the long-term

studies.

notan

[Guest guest]

james- reading your post. did doc give you any parameters or percentages in

peristalsis to best determine when and when not to wrap? or did he just say

little to no movement?... angela

Re: Newbie Question(s)

Hi, ,

I've enjoyed reading the excellent comments given to you by Ann,

Notan, and Sandy in So Cal. And I agree with Sandy that your

doctor should have ordered the manometry asap.

What I hadn't known, until I read through the posts, was that

dilations lesson the chance of long-term success with the myotomy. Wow. (I

went straight for the myotomy, no dilations and no botox, thank you, but I

did it because I thought of it as an " end run " and I, too, was impatient to

get on with my life and not wondering as if the next time I had Chinese

stir-fry noodles in a mall that they'd shoot out my nostrils like soaring

snakes on fire after I'd attempted to push them down with a tall glass of

diet Coke, which also shot out my nostrils. Talk about a free show!

And, my! didn't I look dandy with twelve-inch noodles hanging out of my nose

while Coke dribbled down onto the table! (I think not!)

Go for info. Go asap.

And, I wish every one of us here the Best of Swallows (and I am not

referring to Capistrano),

Deborah