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

[Guest guest]

Hi Jacquie,

It seems like with achalasia that the NCCP's is the " side affect " that GI docs

and surgeons don't get too involved with, perhaps because there is very little

understanding as to what causes it, and what can make them stop. Over the years

we have read on the Board such things as " stress " causing it, going too long

without eating, or it just happens spontaneously. And even relating it to

something (such as stress), we still don't seem to know the mechanism that makes

a stressful event turn into a " heart attack " like spasm.

I asked you what kind of things you have tried that did not work to get some

idea of where you are with this.

Back in the mid-eighties I discussed spasms with my GI doctor, the chairman of

the Dept of Gastroenterology at s Hopkins, and while he had no answers for

what causes it, he had answers as to how to stop it. He put me on Prilosec and I

did not have a spasm for 2 years. I went off the Prilosec after 18 months

because I was afraid of some long term negative effects for taking the

medication for so long.

Like you, I tried nifedipine, but unlike you I did not have any negative

reactions and it helped me greatly, so I always carry them with me. As I've said

on this Board more times than I can can count, drinking a carbonated beverage

gets rid of the spasms immediately if I drink it right after the spasms start.

But, many achalasians cannot tolerate the fizz, and so it doesn't help them.

I think before you take the huge step of having an ectomy performed you should

look back at old posts and I believe something in the files where contributors

(myself included) wrote about what works best for them to relieve spasms. It

appears that there are many things you can still try in order to have a much

more normal life.

________________________________

From: jacquieheys <jaxheys@...>

achalasia

Sent: Thu, June 9, 2011 4:35:28 PM

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

 

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]

Jacquie,

I wish I had something to offer, but sadly I don't.  I did want to let you know

that your spasms sound so very similar to mine that it's scary.  I've mentioned

them before in my comments, but I've never seen anyone with anything too similar

mentioned, so I thought it best to keep the severity to myself.  I actually

missed so much time from work that my doctor put me off, and just last month,

the week before my son was born, I was approved for a medical retirement, as I

had a government job.  Scary, considering I just turned 40, but my doctors have

no clue when or if they can get these under control.

I will follow your replies, for sure... it's small comfort that someone shares

your pain, but I do find it some comfort, and I hope you do too.

kim in canada

________________________________

From: jacquieheys <jaxheys@...>

achalasia

Sent: Thursday, June 9, 2011 5:35 PM

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

 

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]

The only difference in your story and mine that I read was that I use chocolate

milk instead of yogurt drink.  If I catch it in time, I can minimize things,

but like you, it's not something you can have on-hand every minute of the day.

 I have a lactose intolerance, so unless I pack my milk and take it with me, I

sacrifice spasm pain for lactose issues later on... oh, the joys

I worked for Service Canada and when things got really bad 5 years ago I went

off work and stayed on LWOP (leave without pay) until last September when they

" let me go " .  They wanted me to retire but I was sure that Health Canada

wouldn't approve the retirement, as I was never able to get LTD, but the doctor

at HC seemed to really understand, which was great.  I was approved the middle

of May.  Hopefully if they can figure things out, and get me to a place where I

can limit them, I'll be able to get back to work (sadly, not with my old

government job though).

We're currently north of Fredericton NB, originally from there.  I have family

in Ottawa.  Beautiful city, quite similar to Fredericton actually... government

city

Feel free to send me an email if you want to talk more.  It really is nice to

have someone that can relate to the specifics

kim in canada

________________________________

From: jacquieheys <jaxheys@...>

achalasia

Sent: Friday, June 10, 2011 11:25 AM

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

 

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

> >

> >

> >

> >

> >