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

[Guest guest]

Hi ,

 

While you first started off by mentioning a diagnosis of " diffuse esophageal

spasms, " it seems as if that has gotten lost.

We had a wife of a person diagnosed iwth " DES " and if she's reading this I hope

she forgives me for not rememberig her name (was the husband's name ?), who

used to post all the time of his troubles with spasms that you are not even

talking about. It leaves me feeling very curious as to how this was diagnosed.

And then you went on to say with " features of achalasia. " That concerns me.

Something does not seem to be adding up correctly here.

 

Your're talking about their bringing in a 90mm balloon. If they use that on you,

you won't just have a perforation, you won't have an esophagus!  The surgeon is

talking about surgery and you haven't been diagnosed with achalasia yet. A

surgeon who will be operating with one hand on a scalpel and the other hand on

" Cliff Notes " as to how to do the surgery, since he had to look it up on the

internet!

 

, you need to slow things down and get yourself with a 21st Century

surgeon who knows what he's doing.  I read what you wrote about losing your

insurance in April 2012, but you don't want to lose your life either.

 

First, go to a real doctor and get a confirmed diagnosis. If you do have

achalasia, you are probably better off getting a Heller Myotomy. Botox only

begets more botox, and potentially more difficult surgery later on.

 

You want the surgery, you want it soon, but you want to have it done right. If

the surgeon hasn't done it at least 50 times, move on to the next surgeon. You

need to keep this group up to date with you so we can offer you guidance, for if

everything you wrote is true about the doctors and diagnosis, your troubles may

only first be starting.

 

________________________________

From: lesleco <lesleco@...>

achalasia

Sent: Saturday, March 10, 2012 10:38 PM

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

 

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 (not Doctor) ,

 

Thank you for adding in more valuable information for to consider. 

 

Doctors are all too human and we as patients often do not necessarily know,

especially with a rare disorder, when we are in contact with someone who is an

expert in the field, or is checking on the internet about it. As achalasians all

we want is to be able to get a meal down. Finding this group has been a godsend

for many of us.  I hope that keeps checking in.

 

________________________________

From: puddleriver13 <puddleriver13@...>

achalasia

Sent: Sunday, March 11, 2012 6:40 AM

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

 

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]

Steve wrote:

>

> 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.

>

Some doctors are better than others at relating. Even true of the best.

But when it comes to a surgeon I'm not there to have him relate to me.

It could be a bigger factor with my PC or GI.

> 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.

>

Too late for what? What is the alternative in your view? Also, it

sometime happens that one goes through a number of treatments and does

not find success but others get success right from the start. We

probably don't here nearly as often from them.

notan

[Guest guest]

Well it was too late for me Notan. After trying dilatation after dilatation and

a whole raft of different medications i , yes i decided enough was enough and

sought help elsewhere. When i said it was too late for me in that if i had known

what my options were at an earlier stage of my Achalasia it might have been more

successfull earlier on. As it was i ended up having the full Oesophagectomy with

gastric pull-up and going through my left side through the ribs. With so much

scar tissue in my chest now even a simple dilataton would have to be carefully

thought out before i need to have one and have a surgical team on standby every

time i had one as is in my case these days.

from the UK

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Sunday, March 25, 2012 6:56 PM

Subject: Re: Re: newly diagnosed with achalasia....find expert

doctor?

 

Steve wrote:

>

> 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.

>

Some doctors are better than others at relating. Even true of the best.

But when it comes to a surgeon I'm not there to have him relate to me.

It could be a bigger factor with my PC or GI.

> 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.

>

Too late for what? What is the alternative in your view? Also, it

sometime happens that one goes through a number of treatments and does

not find success but others get success right from the start. We

probably don't here nearly as often from them.

notan