Re: Welcome Jim and

[Guest guest]

Hi Kathie,

Thank you for your message. In answer to your question about the

Botox pilot study, originally I thought back then,

" Wow, I've been asked by s Hopkins Hospital to participate in an

FDA study using Botox to help other patients with Achalasia! Where

can I sign up? "

When they told me that the FDA required a manometry study as a base

line, I said to my wife something like, " What am I stupid? I'd

rather face a firing squad than subject myself to that again! "

Years later, after my wife got full blown GERD in 1996, she faced a

manometry study in order to have a Nissen Laproscopic Fundoplication

operation. Knowing what I went thru, she was not a happy camper.

Regarding the corn flake study, and I don't know how many people have

made reference to it on this board, but in post #172 Alan Laviolette

gave the real name of it as part of his post:

" a radioactive esophogram (apparently, eating radioactive cornflakes

as fast as I can will help monitor food movement when viewed through

an x-ray machine. All they will see is the cornflakes coming right

back up!). "

This test was a piece of cake compared to the manometry or the barium

swallow, and the corn flakes didn't taste bad either.

With my wife having GERD & my having Achalasia, we are just a barrel

of fun when we go out to eat. Sometimes the " Wrap " she had tightens

up too much and the food gets stuck. Sometimes I get acid reflux,

despite my having the wrap to prevent it. If nothing else, this

makes for a solid marriage of understanding each other!

Kathie: it sounds as if you have gotten your life back again, and

hopefully you will continue on without any additional surgeries. You

sound wonderful!

In achalasia , " zekenoahme " <kgasior2@y...> wrote:

>

> So glad that you found us.

>

>

, sounds like you went thru HELL!!! Did you participate in

that study? I would wonder if you subjected yourself to the mannotry

again?

>

The Corn Flake Study sounds like the stomach emptying study that I

had to have. In my diagnosis, I endured 39 test and procedures to

diagnosis Achalasia. That was really an easy test. Mine was not

cornflakes, it was something like a pudding because at that point I

could not swallow anything with any consistancy. At that point my

LES was like an IV Drip, only allowing liquids to drip into my

stomach. A small can of ensure took 3 hours to drink!!! At the end

of the 2 hour test, almost all of the radioactive pudding was still

in the Esophagus. Once it was done, a quick trip to the bathroom to

empty it.

>

Yes, this disease is progressive. I had my Lap Hellers March 16,

2005, almost 10 months ago. I DEFINATELY WOULD DO IT AGAIN. I am

currently noticing more sticking that 3 months ago. I will see my

surgeon on Feb 7, just to be sure the E is not closing again. This

has been an adventure, but like someone else said ... we all seem to

have some restrictions in life. I am so grateful to my surgeon for

allowing me to get to this point.

>

Really glad both of you joined the group. Do not hesitate to ask

questions ... someone will definately jump in to help you.

>

> Jim, where do you live? Near the Cleveland Clinic?

>

> Kathie in Pittsburgh, PA

In achalasia , A. Laviolette " <alanlav@...> wrote:

From: " A. Laviolette " <alanlav@...>

Date: Tue Aug 15, 2000 7:09 pm

Subject: Myotomy prep alanlav@...

Send Email

In preparation for the surgery, my doctor said I would need three

things:

First, another endoscopic dilation.

Second a radioactive esophogram (apparently, eating radioactive

cornflakes as fast as I can will help monitor food movement when

viewed through an x-ray machine. All they will see is the cornflakes

coming right back up!).

Third, a manometry. Has anyone had these? Are they really necessary?

Are they as uncomfortable as they sound? Any info would be greatly

appreciated. Thanks to Carol for the doctor suggestion. He led me to

Dr. Weaver who does the operation at Wayne State medical center in

downtown Detroit. I really hate having to go through all this, I hope

it is worth it.

Alan

>

[Guest guest]

>I live in a suburb of Cleveland, Parma, Ohio. I am fortunate to be

so close. Thanks for the recommendations.

Jim

> So glad that you found us.

>

> Jim, see if you can get your hands on some Chapstick or Lip Balm.

> The hospital makes your lips so dry and cracked, you will really be

> happy you have it.

>

> , sounds like you went thru HELL!!! Did you participate in

> that study? I would wonder if you subjected yourself to the

mannotry

> again?

>

> The Corn Flake Study sounds like the stomach emptying study that I

> had to have. In my diagnosis, I endured 39 test and procedures to

> diagnosis Achalasia. That was really an easy test. Mine was not

> cornflakes, it was something like a pudding because at that point I

> could not swallow anything with any consistancy. At that point my

> LES was like an IV Drip, only allowing liquids to drip into my

> stomach. A small can of ensure took 3 hours to drink!!! At the

end

> of the 2 hour test, almost all of the radioactive pudding was still

> in the Esophagus. Once it was done, a quick trip to the bathroom

to

> empty it.

>

> Yes, this disease is progressive. I had my Lap Hellers March 16,

> 2005, almost 10 months ago. I DEFINATELY WOULD DO IT AGAIN. I am

> currently noticing more sticking that 3 months ago. I will see my

> surgeon on Feb 7, just to be sure the E is not closing again. This

> has been an adventure, but like someone else said ... we all seem

to

> have some restrictions in life. I am so grateful to my surgeon for

> allowing me to get to this point.

>

> Really glad both of you joined the group. Do not hesitate to ask

> questions ... someone will definately jump in to help you.

>

> Jim, where do you live? Near the Cleveland Clinic?

>

> Kathie in Pittsburgh, PA

>