Phil.Brown

[Guest guest]

hey Phil - so sorry your son is going through this but please let him

know that he doesn't have to be alone. One thing about achalasia -

and I'm guessing he's had it for awhile if he's end stage - is that

it is VERY lonely. It's unlikely that he has randomly ever met anyone

else with it. Please let him know that we are here and invite him to

come join us. Most of us are in the states but we have a good many in

the UK, europe and 'down under'.

I don't want to confuse you and I'm certainly not trying to

contradict anyone but end stage does not have to be the end of his

life. (posted earlier) has had some EXTREME recovery issues

after having an esophagectomy (removal of the esophagus, we shorten

it to -ectomy). There are at least 12-15 of us here who have had the -

ectomy, mostly in our 30's and 40's (I was 39 when I had it done

almost a year ago) and it was no walk in the park mind you but now,

almost 1 year later - I'm better off than I've been in years. I'll

never be 'normal' again, and I'll always have to monitor my condition

with yearly scopes and I've had quite a few post-op dilations **BUT**

I eat everything (except OJ) and other than eating slowly - no one

would even know that I have no esophagus. In short, I would do it

again in a minute.

My main concern for you and your son is being able to find someone,a

surgeon, who has treated a good deal of people with achalasia. WE

only have a handful of really experienced people here in the states,

in a country as small as yours - I'm not sure how much expertise

you'll find. What is his current doctor recommending? What do they

consider 'end stage' and how do they want to treat it? How is your

son doing? Is he eating and drinking OK? Weight loss?

Please keep us posted and ask many many questions - that's what we

are here for.

take care,

- in NC, USA