Joy - Back from CC

[Guest guest]

Hi all,

Checking in with you tonight with my second opinion....and

confirmation of my diagnosis of Achalasia from the Cleveland Clinic.

*Barium Swallow - Nothing emptied @ 5min. time mark. (5cm)

*Endoscopy -

*Menometry - NO Paristalsis...some small muscle contractions.

So, after coming to grips with it I still have some questions I

didn't get answered. I guess I could have surgery in about 2 weeks.

1. How long is the Heller supposed to last for, be good for before

you have to get something else done? When I got the botox they were

able to say....this will be good for about 6-12 months. Nobody was

able to give me any indication what the life expectancy of a Heller

is. They just said you don't get a warranty like buying a washing

machine.

2. Nobody wanted to address the issue of muscle spasm pains that I

was worried about getting following the operation (like I got for 3

days following the botox/stretch in Dec). They said the Heller

wouldn't do anything to solve those pain issues and that it wasn't an

issue with surgery. Has anyone gotten increased pains following the

surgery and what has your Dr. done for you?

3. Here in Detroit the surgeon was talking about a 3 day hospital

stay while connected to a feeding tube for the first day and also a

suction tube to keep the stomoch contents evacuated for at least a

day......but at the CC they were talking about going home the next

day. Wow, that seems soon! Is that typical?

[Guest guest]

HI Joy,

I think your hospital stay depends on the surgery you are having..

open or lap? I had lap and was home the next day. Never had a

feeding tube or anything but some pain meds for the first 24 hours.

I did however experience quite severe spasms after the surgery. I

suffered with them until I learned that there was medication that I

could try. My dr. gave me two medications.. One to take daily and

one to use while having a spasm. I also had and am still having some

really annoying issues with air getting trapped in my throat whenever

I eat or drink. Right after the surgery I was unable to belch to

relieve it and so it continued most of the day. Now it takes a bit

but I'm able to get relief much quicker.

As for how long the surgery lasts, I think it is different for

everyone. Some are lucky and I think it can last for years.. some

not so lucky and need further treatment.

I'm sure you can call your dr. with any unanswered questions you

have. Don't be afraid to ask every little thing that worries you.

Deb in NJ

> Checking in with you tonight with my second opinion....and

> confirmation of my diagnosis of Achalasia from the Cleveland Clinic.

> *Barium Swallow - Nothing emptied @ 5min. time mark. (5cm)

> *Endoscopy -

> *Menometry - NO Paristalsis...some small muscle contractions.

>

> So, after coming to grips with it I still have some questions I

> didn't get answered. I guess I could have surgery in about 2

weeks.

>

> 1. How long is the Heller supposed to last for, be good for before

> you have to get something else done? When I got the botox they

were

> able to say....this will be good for about 6-12 months. Nobody was

> able to give me any indication what the life expectancy of a Heller

> is. They just said you don't get a warranty like buying a washing

> machine.

>

> 2. Nobody wanted to address the issue of muscle spasm pains that I

> was worried about getting following the operation (like I got for 3

> days following the botox/stretch in Dec). They said the Heller

> wouldn't do anything to solve those pain issues and that it wasn't

an

> issue with surgery. Has anyone gotten increased pains following

the

> surgery and what has your Dr. done for you?

>

> 3. Here in Detroit the surgeon was talking about a 3 day hospital

> stay while connected to a feeding tube for the first day and also a

> suction tube to keep the stomoch contents evacuated for at least a

> day......but at the CC they were talking about going home the next

> day. Wow, that seems soon! Is that typical?

[Guest guest]

> 1. How long is the Heller supposed to last for, be good for before

> you have to get something else done? When I got the botox they were

> able to say....this will be good for about 6-12 months. Nobody was

> able to give me any indication what the life expectancy of a Heller

> is. They just said you don't get a warranty like buying a washing

> machine.

This isn't a precise disease; it's not like appendicitis where you remove

the appendix and life goes on. The surgery doesn't fix the disease, and

there's no way of knowing if the disease has progressed as far as it's

going to go. Even if they get the LES opened up, you may still have

problems swallowing b/c of the lack of peristalsis. The muscle can scar

up or heal up and be too tight again in the future. There's just no way

of knowing for sure, but I can tell you we've had people on the board who

are 20 years out on their first myotomy and still happy and healthy.

> 2. Nobody wanted to address the issue of muscle spasm pains that I

> was worried about getting following the operation (like I got for 3

> days following the botox/stretch in Dec). They said the Heller

> wouldn't do anything to solve those pain issues and that it wasn't an

> issue with surgery. Has anyone gotten increased pains following the

> surgery and what has your Dr. done for you?

I've seen people who had them prior who still had them after surgery. I've

seen people who did not have them prior who still didn't have them after

surgery. I've seen people who had them prior who no longer had them after

surgery. And I've seen people who did not have them prior who did start to

have them after surgery.

Did I mention that this isn't a precise disease? ;o)

In general, of the people who had surgery who have posted on this subject,

I would say that most reported an increase in spasms immediately after

surgery (for about the first month or two), with them subsiding

significantly after that. But like I said, I've seen every possible

combination, so there are no guarantees one way or another.

I think it's important to keep in mind that there are several ways to deal

with NCCP -- the possibility that you " might " have them after surgery

shouldn't impact your decision to have the surgery, because you " might "

start getting them even WITHOUT the surgery. Since NCCP are manageable

for just about everyone who is willing to try to deal with them medically,

I personally would be more afraid of setting myself up for a future

esophagectomy by not having the surgery, rather than worrying about taking

a prophylactic medication to keep NCCPs at bay. (But that's just my own

opinion of what I would do -- you obviously have to make your own decision

based on your own situation!)

> 3. Here in Detroit the surgeon was talking about a 3 day hospital

> stay while connected to a feeding tube for the first day and also a

> suction tube to keep the stomoch contents evacuated for at least a

> day......but at the CC they were talking about going home the next

> day. Wow, that seems soon! Is that typical?

It's typical among clinics/surgeons who know what they're doing... Lap

surgery is significantly less " violent " to the body, and so you can go

home much sooner. (Even with my c-section, I was home 48 hours after they

cut me open, and that's an open procedure!)

With you being out of state, I would guess that they *might* keep you for

two " overnights " -- so if you had surgery on, say, a Monday morning, you'd

be released sometime Wednesday morning. But if everything goes

wonderfully and you're up and walking and eating and drinking Tuesday

morning, they might go ahead and let you go home Tuesday night. They'll

base it on how YOU are doing on that specific day, too -- if you don't

feel like you can manage at home on Tuesday (or can't manage the car ride

home), they'd keep you another day. (Personally, I was begging to go home

after my c-section -- it's impossible to get any rest in a hospital room!)

Now, what did Dr. Rice have to say about your esophagus? Are you

" horribly dilated " or just " mildly dilated " ?

Debbi in Michigan

[Guest guest]

In a message dated 6/25/2004 9:16:37 PM Eastern Daylight Time, q.t@... writes:

Hi all, Checking in with you tonight with my second opinion....and confirmation of my diagnosis of Achalasia from the Cleveland Clinic.*Barium Swallow - Nothing emptied @ 5min. time mark. (5cm)*Endoscopy - *Menometry - NO Paristalsis...some small muscle contractions.So, after coming to grips with it I still have some questions I didn't get answered. I guess I could have surgery in about 2 weeks. 1. How long is the Heller supposed to last for, be good for before you have to get something else done? When I got the botox they were able to say....this will be good for about 6-12 months. Nobody was able to give me any indication what the life expectancy of a Heller is. They just said you don't get a warranty like buying a washing machine. 2. Nobody wanted to address the issue of muscle spasm pains that I was worried about getting following the operation (like I got for 3 days following the botox/stretch in Dec). They said the Heller wouldn't do anything to solve those pain issues and that it wasn't an issue with surgery. Has anyone gotten increased pains following the surgery and what has your Dr. done for you?3. Here in Detroit the surgeon was talking about a 3 day hospital stay while connected to a feeding tube for the first day and also a suction tube to keep the stomoch contents evacuated for at least a day......but at the CC they were talking about going home the next day. Wow, that seems soon! Is that typical?

Joy,

It's good to hear back from you, Joy. I've been wondering how your "visit" to CC went.

Sorry to hear about the confirmation of the a diagnosis, but glad to hear they feel they can help, and that the Heller can be scheduled soon!

I'm sure those with experience can answer about the "longevity " of the Heller.

It sounds like TCC is VERY adept at seeing patients through all of the surgery and recovery time being kept to a short day after the surgery.

Please keep us posted about your plans for treatment, I know you have some big deciscions to make.

Hugs,

Jan in NKY