Re: newly diagnosed with ....find expert doctor?

[Guest guest]

Welcome to the world of the big A. Quick? Where GIs are concerned, really is

NOT going to happen. Surgeons are a MUCH better bet. My " guess " on the

dilation was that is was done during an EGD, and they used a 15mm to 20mm

balloon. Which as far as Achalasia is concerned is virtually NEVER going to

work for more than two or three days. Standard Achalasia balloons are 30mm to

35mm to 40mm. Age is also important, and sex. A young male (under 50) and most

females are going to have failure with dilations. I (just personally speaking,

YMMV) would go directly for surgery. And TELL the OFFICE when you speak to them

about the insurance issue, and maybe, just maybe. . . .

Might try at Ochsner Clinic Foundation:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3096356/

Good luck!

(p.s., it really helps direct advice if you give us age, sex, and a bit more

history. . . . )(Names are nice, too. . . . )

>

> Hi, I'm new to the group. I was recently diagnosed with diffuse

> esophageal spasms with features of Achalasia. I am looking for a doctor

> in the New Orleans, LA that is a specialist in the treatment of this

> disorder. This is just the beginning of the Achalasia and I have had one

> dilation (which did not help) and another doctor wants to do a botox

> injection - which I know is only temporary. I am concerned about my

> esophagus getting stretched over time. Another important thing is that I

> am getting ready to lose my insurance in April, 2012. I don't know what

> to do, but I need just *one* very experienced doctor/surgeon/expert to

> tell me the best treatment and soon. I appreciate any quick replies

>

[Guest guest]

Hello. Welcome to the group, I hope that you find the information shared in this

group will be a great help to you. One of the members did share that the medical

center in Houston has good specialists and Dallas as some good ones too. Good

luck with your search.

  Monicqua- mother of a son with achalasia

________________________________

From: lesleco <lesleco@...>

achalasia

Sent: Saturday, March 10, 2012 12:51 AM

Subject: newly diagnosed with achalasia....find expert doctor?

 

Hi, I'm new to the group. I was recently diagnosed with diffuse

esophageal spasms with features of Achalasia. I am looking for a doctor

in the New Orleans, LA that is a specialist in the treatment of this

disorder. This is just the beginning of the Achalasia and I have had one

dilation (which did not help) and another doctor wants to do a botox

injection - which I know is only temporary. I am concerned about my

esophagus getting stretched over time. Another important thing is that I

am getting ready to lose my insurance in April, 2012. I don't know what

to do, but I need just *one* very experienced doctor/surgeon/expert to

tell me the best treatment and soon. I appreciate any quick replies

[Guest guest]

Yes! Your " guess " about my EGD was correct. It only lasted 3 days. My

surgeon used a 20mm balloon (it was the biggest that our hospital had)

and now he has ordered a 90mm (!), but he's afraid to perforate the

esophagus (he's only seen achalasia a couple of times in his 30 year

career), so he sent me for a second opinion to Ochsner in New Orleans,

Louisiana - which is 60 miles from home. I did get the same diagnosis at

Ochsner, but this dr said do NOT get the 90mm balloon and wants to do

the botox injection - which I know is so temporary (months). Of course I

don't want to go straight for the surgery, but in doing my research

(even my surgeon had to go to the internet)...It seems that the longer

you go without the proper treatment, the more dilated the esophagus gets

and then the myotomy is not as effective. What do you say about

that?????I am a 48 yr old female in fairly good health (high blood

pressure). Thanks for the link - actually, I have this same link in my

" achalasia " files, but it kinda confirms that I need to go see Dr.

. I am open to any more advice.....

> >

> > Hi, I'm new to the group. I was recently diagnosed with diffuse

> > esophageal spasms with features of Achalasia. I am looking for a

doctor

> > in the New Orleans, LA that is a specialist in the treatment of this

> > disorder. This is just the beginning of the Achalasia and I have had

one

> > dilation (which did not help) and another doctor wants to do a botox

> > injection - which I know is only temporary. I am concerned about my

> > esophagus getting stretched over time. Another important thing is

that I

> > am getting ready to lose my insurance in April, 2012. I don't know

what

> > to do, but I need just *one* very experienced doctor/surgeon/expert

to

> > tell me the best treatment and soon. I appreciate any quick replies

> >

>

[Guest guest]

Hi, ! I noted that, forgot to respond to it. For a " newbie " doctor, I

think a fairly standard " misdiagnosis " ~~ I've *had* diffuse esophageal spasm

for 35 years, and while not THAT common, it's obviously easier to pick up on

than the Achalasia. Again, just " guessing " is that she has Achalasia, with

spasms. And you are absolutely right about getting to a higher level, fast.

Needs the barium swallow and the manometry.

My guess is also that the person she's calling a surgeon *isn't* ~~ rather is a

GI. So far as I know, surgeons *don't* do EGDs, and I've never heard of one

wanting to do botox, which is another EGD experience.

Ochsner Clinic seems to be fully competent. The question is whether of not the

tests can be done in the required " insurance time. " My own experience when

*finally* getting to the surgeon/major center (also sixty miles away from me,

lol!), is that they can and DO act very swiftly. 's been doing lap

Hellers since 1998, so I'd lay odds that he's got more than 50 under his belt.

But yes, absolutely, she needs to ask.

And , make sure NO ONE USES A 90mm balloon on you!! (Sounds like one for a

colon!) And anyone suggesting it has *automatically* disqualified him/herself

from consideration of being your doctor!!

At the link, gives his phone number and email. USE THEM!!!! [Address

correspondence to: S. , MD, Ochsner Medical Center, 1514

Jefferson Highway, New Orleans, LA 70121, Tel: (504) 842-5874, Fax: (504)

842-5875, Email: dlicini@...] The expert surgeons will often call you

back/respond quickly. It's the GIs who are slow as molasses in January, grin.

NOT a doctor, nor do I play one on TV. . . .

in WV

> > >

> > > Hi, I'm new to the group. I was recently diagnosed with diffuse

> > > esophageal spasms with features of Achalasia. I am looking for a

> doctor

> > > in the New Orleans, LA that is a specialist in the treatment of this

> > > disorder. This is just the beginning of the Achalasia and I have had

> one

> > > dilation (which did not help) and another doctor wants to do a botox

> > > injection - which I know is only temporary. I am concerned about my

> > > esophagus getting stretched over time. Another important thing is

> that I

> > > am getting ready to lose my insurance in April, 2012. I don't know

> what

> > > to do, but I need just *one* very experienced doctor/surgeon/expert

> to

> > > tell me the best treatment and soon. I appreciate any quick replies

> > >

> >

>

>

[Guest guest]

Welcome to the group. Dan is one of the best surgeons in the SE - at

Emory. May be a jaunt for you, but worth checking into.

Kim

________________________________

From: lesleco <lesleco@...>

achalasia

Sent: Saturday, March 10, 2012 1:51 AM

Subject: newly diagnosed with achalasia....find expert doctor?

 

Hi, I'm new to the group. I was recently diagnosed with diffuse

esophageal spasms with features of Achalasia. I am looking for a doctor

in the New Orleans, LA that is a specialist in the treatment of this

disorder. This is just the beginning of the Achalasia and I have had one

dilation (which did not help) and another doctor wants to do a botox

injection - which I know is only temporary. I am concerned about my

esophagus getting stretched over time. Another important thing is that I

am getting ready to lose my insurance in April, 2012. I don't know what

to do, but I need just *one* very experienced doctor/surgeon/expert to

tell me the best treatment and soon. I appreciate any quick replies

[Guest guest]

You're right. Doctors are human. But they should also listen to their patients.

When I first had horrible spasms, regurgitation, chest pain, and needed gallons

of water to force anything down - my physician downplayed my concerns with,

" Chew your food more carefully and the symptoms will go away. "

Of course they didn't, precipitating another visit, when he viewed an X-Ray and

ominously told me something was very wrong.

Actually the latter statement reassured me, because I already knew something was

wrong or I wouldn't be wasting my time in a doctor's office.

the first " expert " performed a dilatation in a major teaching hospital, and

later said nothing more could be done.

I think most people with achalasia can relate to these experiences because you

won't find many doctors who can fully appreciate how you feel.

Trust your instincts.

Your experts will want to perform a dilatation, then another, and another;

inject botox into the LES, perform manometry testing, endoscopies, possibly try

nifedine or Ca channel blockers; perrhaps a myotomy with or without a

fundoplication.

By this time it may be too late. The damage to your esophagus is irreversible.

> > > >

> > > > Hi, I'm new to the group. I was recently diagnosed with diffuse

> > > > esophageal spasms with features of Achalasia. I am looking for a

> > doctor

> > > > in the New Orleans, LA that is a specialist in the treatment of this

> > > > disorder. This is just the beginning of the Achalasia and I have had

> > one

> > > > dilation (which did not help) and another doctor wants to do a botox

> > > > injection - which I know is only temporary. I am concerned about my

> > > > esophagus getting stretched over time. Another important thing is

> > that I

> > > > am getting ready to lose my insurance in April, 2012. I don't know

> > what

> > > > to do, but I need just *one* very experienced doctor/surgeon/expert

> > to

> > > > tell me the best treatment and soon. I appreciate any quick replies

> > > >

> > >

> >

> >

[Guest guest]

What do you mean by this time it is too late? I understand our esophagus is

going to be damaged even without any HM's or dilations!

>

>

> Your experts will want to perform a dilatation, then another, and another;

inject botox into the LES, perform manometry testing, endoscopies, possibly try

nifedine or Ca channel blockers; perrhaps a myotomy with or without a

fundoplication.

>

> By this time it may be too late. The damage to your esophagus is irreversible.

>

>

[Guest guest]

" Your experts will want to perform a dilatation, then another, and another;

inject botox into the LES, perform manometry testing, endoscopies, possibly try

nifedine or Ca channel blockers; perrhaps a myotomy with or without a

fundoplication. "

We were more fortunate: after it became clear that nitro and nifedipine wouldn't

do the trick, we were advised by two senior gastroenterologists and two senior

GI surgeons at four different Boston teaching hospitals to proceed directly to

Heller myotomy.

All four docs advised avoiding even a single dilatation due to the unwarranted

(though small) risk of a perforation that would necessitate emergency

surgery--which would be an open rather than a laparoscopic procedure. None saw

any possible advantage of dilatation for a person able to undergo surgery

safely. The two GI docs did dilatations for achalasia for years, but with the

advent of laparoscopic Heller myotomy and the extraordinary success rates it

achieves, they no longer recommend or perform the dilatations.

They discouraged botox even more strongly on the grounds that, unlike expertly

performed dilatation, it could complicate a future surgery.

We also escaped the dreaded manometry. Only one of the docs, a

gastroenterologist, pushed it, to absolutely confirm the diagnosis. But all the

others felt the diagnosis was secure based on the endoscopy and barium swallow

and agreed manometry results would not affect treatment recommendations. To us,

the infinitesimal risk of a misdiagnosis wasn't worth the stress, discomfort,

and time to do the manometry. (For someone with a less definitive barium study,

manometry might be more useful, I suppose.)

It's very important to find the right docs, who know achalasia well and have

some common sense about it to boot. In this respect, we were very lucky. Maybe

not just luck: reading the stories on this group convinced us early on to be

very careful about the docs we consulted. In Boston, we had good choices close

to home, not always the case of course.

My SO is now 1 week post-Heller. In some pain, but able to swallow liquids (all

she's allowed for now) with no problems, for the first time in ages. Her surgeon

was Dr. Rattner at MGH.

> > > > >

> > > > > Hi, I'm new to the group. I was recently diagnosed with diffuse

> > > > > esophageal spasms with features of Achalasia. I am looking for a

> > > doctor

> > > > > in the New Orleans, LA that is a specialist in the treatment of this

> > > > > disorder. This is just the beginning of the Achalasia and I have had

> > > one

> > > > > dilation (which did not help) and another doctor wants to do a botox

> > > > > injection - which I know is only temporary. I am concerned about my

> > > > > esophagus getting stretched over time. Another important thing is

> > > that I

> > > > > am getting ready to lose my insurance in April, 2012. I don't know

> > > what

> > > > > to do, but I need just *one* very experienced doctor/surgeon/expert

> > > to

> > > > > tell me the best treatment and soon. I appreciate any quick replies

> > > > >

> > > >

> > >

> > >

[Guest guest]

sounds like you have great doctors. mine also advised about the risks of

perforation from dilatations that would likely to be ineffective and the massive

open chest surgery to clean out infection. Decades ago, we didn't have

laparoscopic myotomies, and were given dilatations as standard first treatments.

unfortunately by the time I had a myotomy, my surgeons said my achalasia was too

advanced to respond successfully. it sounds like your surgeons know what they

are doing.

> > > > > >

> > > > > > Hi, I'm new to the group. I was recently diagnosed with diffuse

> > > > > > esophageal spasms with features of Achalasia. I am looking for a

> > > > doctor

> > > > > > in the New Orleans, LA that is a specialist in the treatment of this

> > > > > > disorder. This is just the beginning of the Achalasia and I have had

> > > > one

> > > > > > dilation (which did not help) and another doctor wants to do a botox

> > > > > > injection - which I know is only temporary. I am concerned about my

> > > > > > esophagus getting stretched over time. Another important thing is

> > > > that I

> > > > > > am getting ready to lose my insurance in April, 2012. I don't know

> > > > what

> > > > > > to do, but I need just *one* very experienced doctor/surgeon/expert

> > > > to

> > > > > > tell me the best treatment and soon. I appreciate any quick replies

> > > > > >

> > > > >

> > > >

> > > >