Re: For those of you who've had -ectomies or considered one

[Guest guest]

Hi Jacquie,

I don't recall anyone having spams so bad that they were driven to consider an

ectomy as a solution to the problem (though I would say that since you are

feeling that way, perhaps others have too.)

I gather at this point nothing is dependably working for you, other than (you

mentioned) some relief from chugging cold yogurt and takng Midol.

You know there have been plenty of posts regarding this. I'm curious though,

please bear with me...what have you tried, to relieve the pain of spasms that

has not worked?

________________________________

From: jacquieheys <jaxheys@...>

achalasia

Sent: Thu, June 9, 2011 10:59:10 AM

Subject: For those of you who've had -ectomies or considered one

 

I think the last few times I've posted here, it's been good news. NCCPs

practically went away for two years (pregnancy+breastfeeding). Now that my

little guy is 1, my NCCPs (standard spasms) have started up again (with a

vengeance....can you hear my weeping?).

What I'd like to know from people who decided to have -ectomies (and I guess the

people who decided not to) was what drove you to make that decision? Was it the

unrelenting spasms or were there other factors?

I swallow without trouble these days (thank you myotomy) and reflux is managed

with pills (generic Prevacid, I love you), but these SPASMS are ruining my life.

After almost two years of not having them, to have them come back is SO ANNOYING

(major understatement).

What sort of recovery time is there and how bad is it really living without an

esophagus? I've read a bit on " dumping " (which sounds horrible), but I don't

have a clear picture of what else I'd have to deal with post-op and in the long

run.

I just can't accurately judge if having no esophagus to spasm is worth the

effects of having no esophagus at all. Right now, I'm still able to care for my

son, work a 30-hour week, and take the dog for walks and jogs. I need to be able

to KEEP doing all that stuff but not have my days punctuated by chugging cold

yogurt and taking Midol.

Also, for anyone in the Toronto, ON area (or even better, Ottawa), which doctors

and surgeons did you use for the -ectomy?

Thanks in advance for your help,

Jacquie

[Guest guest]

Hi ,

I've tried just about everything this group has ever posted.

Heat is horrible for me, either as a heating pad or drinking. Actually makes

things worse. Horrible horrible.

No meds have touched it (except for muscle relaxants, which make me dopey). I

tried nifepedine and nitro. Zero help.

Cold liquid used to work, sometimes. Water is no longer good enough (ever since

myotomy).

Meditation and diet changes: nope, no effect.

I tried anti-depressants two years ago. Switched twice to different

brands/kinds. Zero effect. And by the way, even though I was taking a very small

dose, I had HORRIBLE withdrawals, including brain pzzzts and just plan going

nuts for a few weeks. Brutal.

I never did try acupuncture. I don't have anything against it, I just haven't

done it.

A liquid-yogurt drink + midol/robaxacet might stop the medium ones (yogurt on

its own can stop the small guys), but the whammies just keep hammering me. And I

can't always travel everywhere with yogurt (like when I'm jogging or out for an

entire day).

And they just plain wipe me out.

In my last job, I had to take so many sick days it was embarrassing. I'm now

working from home with a new job, but there are going to be those times (like 3

days ago when I started jogging with the fam only to have to turn around and

sprint back to the house for yogurt) when having something to stop the pain just

isn't available. Driving has, historically, been a particularly bad situation.

Spasm+stuck in traffic is NOT GOOD. Spasm while driving, generally, a big danger

to self and others. Sitting in a meeting or classroom. It's just a huge pain in

my life.

I don't know about everyone else, but my bad spasms are worse than labor. I turn

red, pant, cry. Heart rate skyrockets. I would rather be pushing an 8-lb baby

out of me.

>

> Hi Jacquie,

>

> I don't recall anyone having spams so bad that they were driven to consider an

> ectomy as a solution to the problem (though I would say that since you are

> feeling that way, perhaps others have too.)

>

> I gather at this point nothing is dependably working for you, other than (you

> mentioned) some relief from chugging cold yogurt and takng Midol.

>

> You know there have been plenty of posts regarding this. I'm curious though,

> please bear with me...what have you tried, to relieve the pain of spasms that

> has not worked?

>

>

>

>

>

>

> ________________________________

> From: jacquieheys <jaxheys@...>

> achalasia

> Sent: Thu, June 9, 2011 10:59:10 AM

> Subject: For those of you who've had -ectomies or considered one

>

>  

> I think the last few times I've posted here, it's been good news. NCCPs

> practically went away for two years (pregnancy+breastfeeding). Now that my

> little guy is 1, my NCCPs (standard spasms) have started up again (with a

> vengeance....can you hear my weeping?).

>

> What I'd like to know from people who decided to have -ectomies (and I guess

the

> people who decided not to) was what drove you to make that decision? Was it

the

> unrelenting spasms or were there other factors?

>

> I swallow without trouble these days (thank you myotomy) and reflux is managed

> with pills (generic Prevacid, I love you), but these SPASMS are ruining my

life.

> After almost two years of not having them, to have them come back is SO

ANNOYING

> (major understatement).

>

> What sort of recovery time is there and how bad is it really living without an

> esophagus? I've read a bit on " dumping " (which sounds horrible), but I don't

> have a clear picture of what else I'd have to deal with post-op and in the

long

> run.

>

> I just can't accurately judge if having no esophagus to spasm is worth the

> effects of having no esophagus at all. Right now, I'm still able to care for

my

> son, work a 30-hour week, and take the dog for walks and jogs. I need to be

able

> to KEEP doing all that stuff but not have my days punctuated by chugging cold

> yogurt and taking Midol.

>

> Also, for anyone in the Toronto, ON area (or even better, Ottawa), which

doctors

> and surgeons did you use for the -ectomy?

>

> Thanks in advance for your help,

>

> Jacquie

>

>

>

>

>

[Guest guest]

Hi Jackuie

Now I only get spasms if something is in the e, if I chew a lot and follow it

with a coke, they pass. Most of mine are at lunch with a toasted English muffin,

now that I have added a lot of real butter, hardle ever have them.

Is that normal that spasms only start when solids are in the e? Who woud know

this. Or are there other causes?

PS I was from Toronto 50 years ago.

Ray CA OC

>

> I think the last few times I've posted here, it's been good news. NCCPs

practically went away for two years (pregnancy+breastfeeding). Now that my

little guy is 1, my NCCPs (standard spasms) have started up again (with a

vengeance....can you hear my weeping?).

>

> What I'd like to know from people who decided to have -ectomies (and I guess

the people who decided not to) was what drove you to make that decision? Was it

the unrelenting spasms or were there other factors?

>

> I swallow without trouble these days (thank you myotomy) and reflux is managed

with pills (generic Prevacid, I love you), but these SPASMS are ruining my life.

After almost two years of not having them, to have them come back is SO ANNOYING

(major understatement).

>

> What sort of recovery time is there and how bad is it really living without an

esophagus? I've read a bit on " dumping " (which sounds horrible), but I don't

have a clear picture of what else I'd have to deal with post-op and in the long

run.

>

> I just can't accurately judge if having no esophagus to spasm is worth the

effects of having no esophagus at all. Right now, I'm still able to care for my

son, work a 30-hour week, and take the dog for walks and jogs. I need to be able

to KEEP doing all that stuff but not have my days punctuated by chugging cold

yogurt and taking Midol.

>

> Also, for anyone in the Toronto, ON area (or even better, Ottawa), which

doctors and surgeons did you use for the -ectomy?

>

> Thanks in advance for your help,

>

> Jacquie

>

[Guest guest]

There must be other causes. I'm pretty sure I never have food stuck in there

anymore. My myotomy was raging success.

> >

> > I think the last few times I've posted here, it's been good news. NCCPs

practically went away for two years (pregnancy+breastfeeding). Now that my

little guy is 1, my NCCPs (standard spasms) have started up again (with a

vengeance....can you hear my weeping?).

> >

> > What I'd like to know from people who decided to have -ectomies (and I guess

the people who decided not to) was what drove you to make that decision? Was it

the unrelenting spasms or were there other factors?

> >

> > I swallow without trouble these days (thank you myotomy) and reflux is

managed with pills (generic Prevacid, I love you), but these SPASMS are ruining

my life. After almost two years of not having them, to have them come back is SO

ANNOYING (major understatement).

> >

> > What sort of recovery time is there and how bad is it really living without

an esophagus? I've read a bit on " dumping " (which sounds horrible), but I don't

have a clear picture of what else I'd have to deal with post-op and in the long

run.

> >

> > I just can't accurately judge if having no esophagus to spasm is worth the

effects of having no esophagus at all. Right now, I'm still able to care for my

son, work a 30-hour week, and take the dog for walks and jogs. I need to be able

to KEEP doing all that stuff but not have my days punctuated by chugging cold

yogurt and taking Midol.

> >

> > Also, for anyone in the Toronto, ON area (or even better, Ottawa), which

doctors and surgeons did you use for the -ectomy?

> >

> > Thanks in advance for your help,

> >

> > Jacquie

> >

>

[Guest guest]

Kim, you must be my spasm twin! It actually makes me feel a lot better that

you're sharing in this too. I'm trying not to envy you your " retirement " !

Where are you in Canada? I'm hanging out in Ottawa these days but from Toronto.

> >

> > Hi Jacquie,

> >

> > I don't recall anyone having spams so bad that they were driven to consider

an

> > ectomy as a solution to the problem (though I would say that since you are

> > feeling that way, perhaps others have too.)

> >

> > I gather at this point nothing is dependably working for you, other than

(you

> > mentioned) some relief from chugging cold yogurt and takng Midol.

> >

> > You know there have been plenty of posts regarding this. I'm curious though,

> > please bear with me...what have you tried, to relieve the pain of spasms

that

> > has not worked?

> >

> >

> >

> >

> >

> >

> > ________________________________

> > From: jacquieheys <jaxheys@>

> > achalasia

> > Sent: Thu, June 9, 2011 10:59:10 AM

> > Subject: For those of you who've had -ectomies or considered one

> >

> >  

> > I think the last few times I've posted here, it's been good news. NCCPs

> > practically went away for two years (pregnancy+breastfeeding). Now that my

> > little guy is 1, my NCCPs (standard spasms) have started up again (with a

> > vengeance....can you hear my weeping?).

> >

> > What I'd like to know from people who decided to have -ectomies (and I guess

the

> > people who decided not to) was what drove you to make that decision? Was it

the

> > unrelenting spasms or were there other factors?

> >

> > I swallow without trouble these days (thank you myotomy) and reflux is

managed

> > with pills (generic Prevacid, I love you), but these SPASMS are ruining my

life.

> > After almost two years of not having them, to have them come back is SO

ANNOYING

> > (major understatement).

> >

> > What sort of recovery time is there and how bad is it really living without

an

> > esophagus? I've read a bit on " dumping " (which sounds horrible), but I don't

> > have a clear picture of what else I'd have to deal with post-op and in the

long

> > run.

> >

> > I just can't accurately judge if having no esophagus to spasm is worth the

> > effects of having no esophagus at all. Right now, I'm still able to care for

my

> > son, work a 30-hour week, and take the dog for walks and jogs. I need to be

able

> > to KEEP doing all that stuff but not have my days punctuated by chugging

cold

> > yogurt and taking Midol.

> >

> > Also, for anyone in the Toronto, ON area (or even better, Ottawa), which

doctors

> > and surgeons did you use for the -ectomy?

> >

> > Thanks in advance for your help,

> >

> > Jacquie

> >

> >

> >

> >

> >