Re: Re: My 'expert' doc wants me to get a second opinion!

March 27, 2012

I started having problems eating in 2005 I went for months without going to a

doctor because I didn't have insurance, then a friend finally forced me to go to

a doctor, the dr ordered a barium swallow test, my A was diagnosed by a

radiologist after the test, then theÂ surgeon who did theÂ endoscopy told me oh

you cant have achalasia, your to young and it is to rare. Â He diagnosed me with

gerd that was in 2006. Â By 2008 the achalasia was so bad IÂ wasn'tÂ able to eat

hardly anything, the pain was incredible, IÂ couldn'tÂ sleep because of

theÂ regurgitation. Â I finally went to a doctor in Pittsburgh PA and he

diagnosed me with the achalasia with out a doubt 100% achalasia he told me, he

tried the HM but told me heÂ didn'tÂ think it would work because

myÂ esophagusÂ was so damaged and he was right it did nothing to help so I went

back in 2 months later and had the esophagectomy. I got relief from the A but

now I have to sleep with a wedge pillow because

of the heartburn, I never had heartburn before but because thereÂ isn'tÂ a

muscle to keep the acid in the stomach sometimes even bending over causes a

problem with heartburn, the major issue I have discovered, I have had major

depression and anxiety problems the last 2 years the doctors finally discovered

I haveÂ absorptionÂ problems due to the stomach surgery (similar problems happen

with people who have gastric by-pass surgery) my stomach no longer absorbs

theÂ vitaminsÂ and minerals from the food, it cant brake down the food properly

now. Â I have bowel problems, because anytime you alter theÂ dietaryÂ tract it

messes up the way your body digests food. Â I look back sometimes and think was

it worth it?? well IÂ don'tÂ know if I had any other choice, I was dropping

weight fast because IÂ couldn'tÂ eat before the surgery, I feel these

sideÂ effects are just things I have to deal with and I would have eventually

died from starvation basically. Â I wish

they could find out what causes this so maybe they could do something to fix it

without having to do such a radical surgeryÂ

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 27, 2012 6:33 AM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

How do you know if it's vigorous, and what exactly does that mean in terms of

symptoms and treatment?

I only got diagnosed with A 7 months ago and have already had unsuccessful HM

and dilation and now even the ectomy was brought up in discussion. I thought

the ectomy was only a last resort after many many years!!!

>

> The last resort for Achalasia patients is Oesophagectomy. That is what i had

back in October 2004. Ok, i still have a few issues but the timing of my surgery

should have been done when i was first diagnosed with Vigorous Achalasia that is

why the HM won't work for some people and they have to resort to the ectomy for

any kind of relief. Have you ever thought about it?

> from the UK

>

> ________________________________

> From: lindsayaus <lindsay_kite@...>

> achalasia

> Sent: Tuesday, March 27, 2012 6:21 AM

> Subject: My 'expert' doc wants me to get a second opinion!

>

> Ã‚Â

>

> What more can I say? I have had enough and it seems like nothing can be done

for me.

>

March 27, 2012

We were told that Taniea had vigorous Achalasia at the time she was diagnosed.

Although now some places use a different classification method I would think

your best bet is to check with your GI.

Hope things get better and happy eating

Shamira

My 'expert' doc wants me to get a second opinion!

>

> Ã‚Â

>

> What more can I say? I have had enough and it seems like nothing can be done

for me.

>

March 27, 2012

wrote:

Â

" I thought the ectomy was only a last resort after many many years!!! "

Â

An ectomy is an operation due to function, not time. Like everything else with

this disease, it varies from one person to the next.

Â

Making a decision to haveÂ an ectomy is one nobody takes lightly.Â Usually your

esophagus has reached a point where it is tortuous, twisted, megaesophagus,

sinking below the entrance to your stomach (forming a " J " shape like under a

bathroom sink), when you are told you need one (speaking from personal

experience), and eating has become a terrible chore (to put it mildly).

Â

You have the aspect of having a very hard time eating, but what about the

physical condition and shape of your esophagus. You need to know that. If it is

not an " S " curve with a " J " shape at the bottom, not " mega " in size, or tortuous

in appearance, then something else is going on. Perhaps you need a followup

myotomy. You need to know all this information.

Â

But, you are correct in saying that an ectomy doesn't usually happen for quite a

while since it takes time for the E to deteriorate to that point where the

ectomy needs to be done.

Â

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 27, 2012 6:33 AM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

How do you know if it's vigorous, and what exactly does that mean in terms of

symptoms and treatment?

I only got diagnosed with A 7 months ago and have already had unsuccessful HM

and dilation and now even the ectomy was brought up in discussion. I thought the

ectomy was only a last resort after many many years!!!

>

> The last resort for Achalasia patients is Oesophagectomy. That is what i had

back in October 2004. Ok, i still have a few issues but the timing of my surgery

should have been done when i was first diagnosed with Vigorous Achalasia that is

why the HM won't work for some people and they have to resort to the ectomy for

any kind of relief. Have you ever thought about it?

> from the UK

>

> ________________________________

> From: lindsayaus <lindsay_kite@...>

> achalasia

> Sent: Tuesday, March 27, 2012 6:21 AM

> Subject: My 'expert' doc wants me to get a second opinion!

>

> Ã‚Â

>

> What more can I say? I have had enough and it seems like nothing can be done

for me.

>

March 27, 2012

,

Â

Do you have any idea as to the condition of your esophagus as I had mentioned in

a previous message? (eg. twisted, tortuous, mega, distended).

Â

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 27, 2012 10:24 PM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

Wow...I can't believe a radiologist got you diagnosed properly then a trained

surgeon said you didn't have A!

> >

> > The last resort for Achalasia patients is Oesophagectomy. That is what i had

back in October 2004. Ok, i still have a few issues but the timing of my surgery

should have been done when i was first diagnosed with Vigorous Achalasia that is

why the HM won't work for some people and they have to resort to the ectomy for

any kind of relief. Have you ever thought about it?

> > from the UK

> >

> > ________________________________

> > From: lindsayaus <lindsay_kite@>

> > achalasia

> > Sent: Tuesday, March 27, 2012 6:21 AM

> > Subject: My 'expert' doc wants me to get a second opinion!

> >

> > Ãƒâ€šÃ‚Â

> >

> > What more can I say? I have had enough and it seems like nothing can be done

for me.

> >

March 27, 2012

You have heard that each case is unique. It would be highly unlikely that it

could have gotten that bad so quickly. Refresh my memory though...when did you

first start experiencing achalasia symptoms?

Â

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 27, 2012 11:20 PM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

I haven't been told it has done anything yet other than there is no motility.

Could it have gotten so stretched in such a short time when I have been eating

like a bird?

> > >

> > > The last resort for Achalasia patients is Oesophagectomy. That is what i

had back in October 2004. Ok, i still have a few issues but the timing of my

surgery should have been done when i was first diagnosed with Vigorous Achalasia

that is why the HM won't work for some people and they have to resort to the

ectomy for any kind of relief. Have you ever thought about it?

> > > from the UK

> > >

> > > ________________________________

> > > From: lindsayaus <lindsay_kite@>

> > > achalasia

> > > Sent: Tuesday, March 27, 2012 6:21 AM

> > > Subject: My 'expert' doc wants me to get a second opinion!

> > >

> > > ÃƒÆ’Ã¢â‚¬Å¡Ãƒâ€šÃ‚Â

> > >

> > > What more can I say? I have had enough and it seems like nothing can be

done for me.

> > >

March 28, 2012

I belive Notan can tell the difference much better between Vigorous and the

usual Achalasia. I only know that the difficulty in swallowing symptoms affect

the whole of the oesophagus and even the upper oesophageal sphincter? And that

the symptoms are much more wild and painfull? I think. I was told at diagnosis

that i had vigorous achalasia and unfortunately i didn't have the forsight back

then to ask more.

from the UK

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Tuesday, March 27, 2012 11:33 AM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

How do you know if it's vigorous, and what exactly does that mean in terms of

symptoms and treatment?

I only got diagnosed with A 7 months ago and have already had unsuccessful HM

and dilation and now even the ectomy was brought up in discussion. I thought

the ectomy was only a last resort after many many years!!!

>

> The last resort for Achalasia patients is Oesophagectomy. That is what i had

back in October 2004. Ok, i still have a few issues but the timing of my surgery

should have been done when i was first diagnosed with Vigorous Achalasia that is

why the HM won't work for some people and they have to resort to the ectomy for

any kind of relief. Have you ever thought about it?

> from the UK

>

> ________________________________

> From: lindsayaus <lindsay_kite@...>

> achalasia

> Sent: Tuesday, March 27, 2012 6:21 AM

> Subject: My 'expert' doc wants me to get a second opinion!

>

> Ã‚Â

>

> What more can I say? I have had enough and it seems like nothing can be done

for me.

>

March 29, 2012

Again i would like Notan to answer this question as he is far more knowledgable

about the 2 types of Achalasia than me.

from the UK

________________________________

From: lindsayaus <lindsay_kite@...>

achalasia

Sent: Thursday, March 29, 2012 3:02 AM

Subject: Re: My 'expert' doc wants me to get a second opinion!

Â

I would really like to know the difference between vigorous and classic and how

each one effects us differently!

> >

> > The last resort for Achalasia patients is Oesophagectomy. That is what i had

back in October 2004. Ok, i still have a few issues but the timing of my surgery

should have been done when i was first diagnosed with Vigorous Achalasia that is

why the HM won't work for some people and they have to resort to the ectomy for

any kind of relief. Have you ever thought about it?

> > from the UK

> >

> > ________________________________

> > From: lindsayaus <lindsay_kite@>

> > achalasia

> > Sent: Tuesday, March 27, 2012 6:21 AM

> > Subject: My 'expert' doc wants me to get a second opinion!

> >

> > Ãƒâ€šÃ‚Â

> >

> > What more can I say? I have had enough and it seems like nothing can be

done for me.

> >

April 1, 2012

wrote:

>

> How do you know if it's vigorous, and what exactly does that mean in

> terms of symptoms and treatment?

>

Historically achalasia was classified as vigorous or not. While doing a

manometry if there seemed to be spasms then it was vigorous. In more

recent years high resolution manometry has indicated that there was an

overlap of of vigorous and non-vigorous achalasia as determined by older

manometry techniques and that in the overlap was also a distinct

version. So now there are three versions type l that is the classic

non-vigorous achalasia and on the other end of the spectrum type lll

achalasia with spasms. In between those two is type ll achalasia with

esophageal compression. In the past type ll patients were hard to

classify and sometime ended up in with the type llls and sometimes with

the type ls in various studies depending on who did the classifying and

how. That created a problem because the type lls are the most likely to

benefit from treatment, any kind of treatment. Depending on if the lls

ended up with the ls or with the llls could determine if it seemed that

vigorous achalasia was harder or easier to treat than non-vigorous.

Studies on that topic had conflicting results. Today it is thought that

type ll is most like to benefit from treatment. Type lll is similar to

DES and is least likely to benefit from treatment, any treatment.

Being told that someone has vigorous achalasia doesn't mean much for

predicting if they will benefit from treatment. They could be type ll or

type lll, the most likely or the least likely to benefit.

check this out:

Achalasia: A New Clinically Relevant Classification by High-Resolution

Manometry

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2894987

notan

April 1, 2012

wrote:

>

> From what you said I can't tell which I am.

>

I can't tell which type you are either. " Vigorous " is not a very helpful

term.

> Don't all A's have spasms of some sort, only some have them longer or

> worse than others.

>

No, not all with A have spasms. The type llls have spasms that are like

the spasms of DES, very strong and often painful. The types lls have

esophageal compression that can look like a spasm but is not the DES

type of spasm and is not painful. The esophageal compression of type lls

may help get food through the LES by pressurizing the esophagus. The

spasms of the type llls can close off the esophagus and act as

strictures before food or drink even has a chance to reach the LES. The

type Is have little muscle activity in the lower esophagus, not even

spasms or compression.

Also, not everyone with A that has pain has spasms. Sometimes it is

other types of NCCP that seems just like spasms.

notan

April 1, 2012

I feel like the spasm queen these days. I hope I am not a type III. Having a HM

in 9 days! On the upside - they are trying Valium for the spasms and it seems to

have relaxed my LES! I have bad more food in the last 2 days than in the last 2+

weeks.

Jenn

Sent from my iPhone

On Apr 1, 2012, at 20:01, notan ostrich <notan_ostrich@...> wrote:

> wrote:

> >

> > From what you said I can't tell which I am.

> >

>

> I can't tell which type you are either. " Vigorous " is not a very helpful

> term.

>

> > Don't all A's have spasms of some sort, only some have them longer or

> > worse than others.

> >

>

> No, not all with A have spasms. The type llls have spasms that are like

> the spasms of DES, very strong and often painful. The types lls have

> esophageal compression that can look like a spasm but is not the DES

> type of spasm and is not painful. The esophageal compression of type lls

> may help get food through the LES by pressurizing the esophagus. The

> spasms of the type llls can close off the esophagus and act as

> strictures before food or drink even has a chance to reach the LES. The

> type Is have little muscle activity in the lower esophagus, not even

> spasms or compression.

>

> Also, not everyone with A that has pain has spasms. Sometimes it is

> other types of NCCP that seems just like spasms.

>

> notan

>

April 1, 2012

Could be. I am going to try to remain optimistic.

Sent from my iPhone

On Apr 1, 2012, at 21:52, " lindsayaus " <lindsay_kite@...> wrote:

> Makes me wonder if most that 'hang around' here longer are those with the more

vigorous type!

>

> > > >

> > > > From what you said I can't tell which I am.

> > > >

> > >

> > > I can't tell which type you are either. " Vigorous " is not a very helpful

> > > term.

> > >

> > > > Don't all A's have spasms of some sort, only some have them longer or

> > > > worse than others.

> > > >

> > >

> > > No, not all with A have spasms. The type llls have spasms that are like

> > > the spasms of DES, very strong and often painful. The types lls have

> > > esophageal compression that can look like a spasm but is not the DES

> > > type of spasm and is not painful. The esophageal compression of type lls

> > > may help get food through the LES by pressurizing the esophagus. The

> > > spasms of the type llls can close off the esophagus and act as

> > > strictures before food or drink even has a chance to reach the LES. The

> > > type Is have little muscle activity in the lower esophagus, not even

> > > spasms or compression.

> > >

> > > Also, not everyone with A that has pain has spasms. Sometimes it is

> > > other types of NCCP that seems just like spasms.

> > >

> > > notan

> > >

April 2, 2012

Thank you Notan for your ingenious explaination of the differences between the 3

stages of Achalasia. You have far more knowledge about this which is why i

forwarded Lindsey's question about vigorous achalasia to you.

from the UK

________________________________

From: notan ostrich <notan_ostrich@...>

achalasia

Sent: Sunday, April 1, 2012 11:37 PM

Subject: Re: Re: My 'expert' doc wants me to get a second opinion!