Re: Got another Question??

[Guest guest]

Slm, I too have had two Botox and one dilatation. The two Botox were

totally ineffective. They gave me no relief at all. I had them one month

apart. I then had a pneumatic dilatation with a 3.5 balloon and it has

lasted for 2 years.

It is now slowly getting more and more difficult to swallow. I am really

amazed that I can continue to eat and get food down without losing

weight. Mine seems tied a lot to what I eat. I can't keep down any

fruits, breads are very difficult, and many other things come back but

not every time. I do know that the food does not go into my stomach right away and after hearing that some people have ended up with a very stretched esophagus makes me feel that I really should get in high gear

and have another GED to see just what is going on. It is just really hard

to go back into treatment when I feel I am getting plenty of nourishment.

I am also having spasms again, but still able to control them with water

enough to be able to tolerate them.

I think one thing that holds me back is the fact that I have decided my

next step will be surgery. I have made this decision based mostly on my

age. I think I may be the oldest member in this group. I am 73 and I

realize that as we get older we tend to develop more physical problems.

I feel that if I am going to have this surgery maybe I should go ahead and

do it while I am in fairly good health and not wait until something happens

that would prevent me from being able to have it. So what am I waiting

for? Hmmm just call me the world's greatest procrastinator.

I do not know exactly how you and I compare. I have only had this

disease for 3 years. But like you, I seem to have learned to live with it.

Before my dilatation I could keep nothing down....not even water. I don't

think I have given you any answers but yes I am another who wonders

if I could continue to live without it's ever getting that bad again.

Good luck and hugs,

Maggie

Alabama

[Guest guest]

Hi Maggie,

Sorry it appears to be getting worse, that is usually the nature of the condition,

although it can be over a period of time - years.

They usually can see the functionality of your esophagus by looking to see how

you are swallowing and where it goes. They do this with a Barium Swallow and

can see the barium staying in your esophagus or going down. They also see the

presence of absence of peristalsis and they get to look at how big your esophagus

is getting and what the bottom of it looks like. If it is in shape of a beak then it

is one of the factors used to diagnose achalasia. The GED only tell you what

the inside mucosa of your esophagus looks like. When you introduce a scope

into an esophagus yourare taking away the normality of the esophagus so the

GED only tells you certain things and is not necessarily indicative of its functioning

unless you have food in there even though fasting. It is a good tool and one that

must be done before surgery but it is not the only test that yields good information.

Most good doctors recommend: The GED, the barium swallow, and manometry

to help them make the diagnosis.

Good luck in your decision making.

I just had the surgery - 10 days ago and feel great.

Bobbie

[Guest guest]

In a message dated 10/4/2003 2:05:15 PM Central America Standard Tim, bing721@... writes:

Most good doctors recommend: The GED, the barium swallow, and manometry

to help them make the diagnosis

Bobbie, thanks for your reply and good wishes. I am aware of the different

test available and have had them all. The barium swallow did show the

bird beak and the results of the manometry was classic Achalasia. I

mentioned the GED now only as a follow up measure to see if my esophagus

is getting larger or stretched and for recommendations from the doctor

regarding the necessity of further treatment at this time. Again I am in a

holding pattern and will not likely do anything until after the first of the

year unless I get a great deal worse.

I am delighted that you are doing so well with your Myotomy. I follow

all the treatments with great interest and am always pleased when

someone has gotten relief. Keep reporting and let us know how it

continues.

Hugs and best wishes,

Maggie

Alabama

[Guest guest]

SLM, I've had symptoms for about ten years and was finally diagnosed in late 1996. I've had two dilations (first didn't help, second one did) and one botox (didn't help at all) and my symptoms are coming back. I've been told that they won't dilate me anymore b/c each subsequent dilation increases the risk of perforating (ripping) the esophagus.

Since I can't have more dilations and botox didn't help, my next step will be surgery, when my symptoms get so bad that I can't get by without it anymore.

Everyone is so different, I wish I could give you The Answer! That's my own experience, at least, to give you something to guage yours against.Debbi in Michigan