- DES

[Guest guest]

,

Hi! It's me, , the one that has told you about. My

husband, , was diagnosed with DES about 2 years ago. Actually, a

doctor at Univ. of Michigan diagnosed him 2 years ago (telling us that

it was an esophagus muscle problem, but we didn't learn the name of

DES until last year) and the Cleveland Clinic confirmed the diagnosis

last year. First of all, what diagnostic tests have you had?

Manometry is probably the most definitive test for DES, but a barium

swallow and EGD (upper endoscopy) are a good idea, also, to rule out

other causes of your problems. has had several manometries, and

we've learned that there are differences with the quality of the test

results, depending on where you have it done. The equipment used at U

of M was much better than at our local hospital, and Cleveland

Clinic's equipment (as well as the staff administering the test) was

the best, helping to make a very definitive diagnosis. From what

we've learned, it can be hard to get an accurate diagnosis (I think

it's difficult to differentiate exactly which motility disorder you

have), so you need to go to a well-qualified hospital or medical

center for that. I know that Cleveland Clinic is one, but I'm not

sure where else. Do they say you have DES along with nutcracker? I

don't know much about nutcracker and I didn't know you could have both

at the same time.

I'm sorry to hear that you're having this problem and the weight

loss! was just a little heavy to start with, but has lost

almost 75 lbs. in the 4 years since his symptoms began (he's 6 ft.

tall and now weighs just under 160 lbs.). Unfortunately, he hasn't

found a treatment that's been hugely succesful, yet. We would

recommend that you follow 's recommendation in taking your time

to research this disease (and make sure that you have a definitive

diagnosis) before rushing into anything, especially Botox! had

3 different rounds of Botox. The first injections were placed at the

LES and took the spasms away for about a week (BIG DEAL!!). The

second ones were placed at the LES and at a spot higher up on the

esophagus (E) and just seemed to make the spasms less severe for a few

weeks. The third round of injections were done by Dr. Achkar at

Cleveland and were placed in a linear fashion, up the wall of the E.

They didn't bring him much relief at all, and after the second and

third treatments, had a rebound day a few weeks later each time,

when the spasms came back with a vengence. After the third one, he

was in major pain and was unable to get solids down and could only get

a few sips of Pepsi down (the carbonation helps) for over 26 hours!!

I was ready to take him in for I.V. fluids for the dehydration!

I will try to help you as much as I can in dealing with all this.

Maybe we can be a support for each other in this, since there aren't

many DES people out there. I'll send you a private e mail as well, in

case you want to respond or ask questions that way. Hang in there!

in Michigan