Skip to search.

Breaking News Visit Yahoo! News for the latest.

×Close this window

achalasia · A MyHealthShare International Community

The Yahoo! Groups Product Blog

Check it out!

Group Information

  • Members: 2430
  • Category: Advice
  • Founded: May 29, 1999
  • Language: English
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Real people. Real stories. See how Yahoo! Groups impacts members worldwide.

Messages

Advanced
Messages Help
Messages 44975 - 45005 of 68723   Oldest  |  < Older  |  Newer >  |  Newest
Messages: Show Message Summaries Sort by Date ^  
#44975 From: Isabella Arnold <arnoldisabella@...>
Date: Sat Sep 1, 2007 8:10 am
Subject: Re: Re: Failed Heller???
arnoldisabella
Send Email Send Email
 
Dear Lesa,
 
This is frustrating, I know. It's a hard time both for you and your husband. I can so much understand your husband's feeling and him not wanting to go back to see the doc. Believe me, I really know what he's going through. My second open Heller's failed January 5th...
 
You know, my problems seemed to have gotten better at first. Nowadays I think it must be because the tube that was in my E. for several days kind of dilatated my E., but we don't know for sure. What I do know for sure, is that you get scared, angry, frustrated, emotional, in denial, doubting, crazy when you notice such heavy surgery to have failed. It took me (and I guess you and your husband as well) a long long time to decide to go for surgery. You go through that emotional roller coaster and then you finally go through that d... surgery and than you need to recover. Before everything has healed and you're back to being your good old self again you need to go in that roller coaster again.
 
Lesa, your husband will get to the point of seeing a doc again. If not today it will be tomorrow. Really. He just needs time.
 
Now I am going to tell you something about my case. So no worries, I am not telling you you are facing an -ectomy. I am just telling you how I coped with my renewed problems.
 
After my problems returned I got scared and I am always the person who wants to know exactly where I stand. So I immediately contacted my surgeon as well as Dr. Schulz in Germany. They both told me to be patient and it would probably be an incident. They were wrong and things got worse and worse. I wanted to go for 3rd myotomy through a new procedure by Dr. Schulz in Germany. In Holland I was told to go for the -ectomy, but that was my biggest NO-word. I am young, have 2 kids, I didn't want to go through such major surgery. Then I got back to liquids and I got severe stomach problems. Holland told me to not go for another myotomy, they told me to have an -ectomy. Furthermore I learned about complications of another patient who had the myotomy done by this new German procedure. These things twisted my mind and it took me a while to come to terms with things, a lot of postings here on the board, a lot of contact with surgeons all over the world. But -ectomy was no longer a NO-word to me and you know what: Thursday I am going to tell my Dutch surgeon to go ahead and schedule the thing.
 
What's the point in telling you this? The one and only point is, that you need to see that your husband is going to do whatever he needs to do. He just needs to be ready to do it.
My husband never doubted me needing to have an -ectomy, on one hand he did understand my confusion, on the other he didn't. He told me right away my problems were thus heavy that I should get help and I must go for surgery. It's "easy" for you to say, I told him. You are not the one being in hospital again, being in pain again, feeling sick again, recovering again, hoping again. That's what I told him. I know he just wants the best for me, but sometimes it's just hard. You know, Lesa, your husband first needs to get mentally ready to go seek renewed help. He'll get to that point, honest. Be patient, he's having a hard time.
 
Furthermore there's no need to loose hope. Did he at all improve at the beginning, that is soon after surgery? I know of a Dutch patient (I am from the Netherlands) who had surgery, thought it had failed and then had a dilatation which lasted soooo long. Perhaps it's just the scar tissueing. Don't jump to conclusions. Maybe he now just needs dilatation, maybe surgery. Time will tell and doctors will tell (go for the best and go for second opinions).
 
I hope to have been of some sort of help and I want you to know I don't mean to lecture you. But I know what a mental strain this whole thing can be and I hope I helped both you and your husband by explaining this.
 
Your husband is lucky to have such a loving and caring wife.
 
Take care,
Isabella

Lesa Myracle <lesamyracle@...> wrote:
No, we thought it would last.....most studies and info we received said HMs could last for many, many years -- never did we ever believe 6 months was it!  The doc & surgeon are VERY good - like I said, they come HIGHLY recommended on these boards -- but we're fairly certain this is their first 'failure' - why us, I don't know.... 
 
He did have the HM with the wrap done.  At this point, we know surgery and a dilation are the options.  He refuses to see the doc again until 'it gets bad enough'.....well, frankly, I'm scared to death of him choking to death - it was SO bad earlier this year....so very bad....      Anyway, before the HM, we considered a dilation.  It wasn't feasible though - we were told it definitely wouldn't last due to the current state of the esophagus; that it doesn't do as well in males as females and given my husband's stature/muscularity, they didn't think it was a good idea.  I still have faith in the doctors - - that may sound crazy, but I do -- out of everything I've read on these boards, they're probably in the top 5 mentioned and recommended (but we will consider others at this point) - I by no means want to blame them or give anyone a bad impression so I'm not going to use their names...  Now, we're wondering what surgery options there are - and how common it is for people to undergo the HM and then have it fail in 6-9 months.....  Of course we won't know the options until 'it gets bad enough' and he goes to the doctor again -- we know surgery or dilation -- but another HM, is that possible? - of just removal??? 
Thanks for responding.  I'm absolutely frazzled, stressed and very sad about it all............he's the love of my life.....

----- Original Message ----
From: toomuchclutter <sandycarroll@charter.net>
To: achalasia@yahoogroups.com
Sent: Friday, August 31, 2007 5:05:35 PM
Subject: [achalasia] Re: Failed Heller???

Why did it fail?  For instance was it looped down like a drain pipe?  I'd look back at what the surgeon said about how long it would last... was he/she right about why it wouldn't last.  Then I'd see if a dilatation would help... it is only one day, out patient... but if the esophagus is looped.... Frankly..... . I'd give up and have a removal and get it over with while your husband is young and healthy.  Living with achalasia symptoms becomes all you can think of, seems to me better to bite the bullet and have the removal and get on with your life.
Unless your surgeon was a goof (was it your husband's choice to take the chance it would last longer, why (without seeming all knowing after the fact) did he do the HM instead of a removal for such short results if he knew the results wouldn't last?  (I'm trying to say that kindly, not sure it is coming out that way... the mean way is... why did you bother, when you knew it wouldn't last?)
Again, frankly, once you reach this stage seems like removal is the only choice, anything else is a band aid and the quality of life suffers.  (Also knowing husbands are chicken and not liking to take risks, while women just jump in and get the problem taken care of...(venting. .. about a broken dryer and applying it to all of life).  Yes, you can live with the mess, but why, life is short, try to get the absolute best surgeon (not sure who you used.... but frankly (again) not impressed you are in this situation so soon, get some second opinions and resolve the problem, move on with life, before age, other diseases or depression other issues make more surgery even more difficult..
Sandy in So Cal... now happily drying clothes.

--- In achalasia@yahoogrou ps.com, "lesamyracle" <lesamyracle@ ...> wrote:
>
> My husband had a Heller Myotomy by an excellent surgeon and very
> prominent doctor (both are mentioned quite often on these boards). I
> have faith in both of them; unfortunately, the HM has failed....the doc
> said 6-9 months and sure enough, the surgery was in March and my
> husband's condition is now getting much worse everyday. The choking
> has been gone, up until last night....... ......... ......... ......
>
> Has anyone else experienced a failed Heller Myotomy this soon? Perhaps
> they didn't cut enough on the first one? I don't know if this has
> anything to do with my husband's size - he's very strong, young,
> muscular.... ??? If so, what route did you take next? I think his
> options are the balloon or another HM........
>
> We're both very depressed about it all. Anyone who can enlighten us on
> this matter would be greatly appreciated. We've looked through these
> boards before and are grateful for everyone's opinions & shared
> experiences. Thanks!
>



Be a better Globetrotter. Get better travel answers from someone who knows.
Yahoo! Answers - Check it out.


Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

#44976 From: tracylb@...
Date: Fri Aug 31, 2007 1:50 pm
Subject: Re: Oesophagectomies - question Deb
tldund
Send Email Send Email
 
Isabella,
I have no problem answering questions for you. All I can do is share
what I went through and hope that it helps someone else facing the
same thing. If I can make it easier on someone, or ease their fears
and give them confidence in their decision, or anything, then it's all
worth it. That's why we are all here for one another.
Time will go fast....I can't believe my surgery was 5 months ago
already! It's amazing how you can go through something so big, and for
a little while things are rough, but before you know it life is back
to normal and you just move on.
Please do keep us posted with the information from your surgeon!!
You are in my thoughts,
Love,
Tracy in NY

----- Original Message -----
From: Isabella Arnold <arnoldisabella@...>
Date: Friday, August 31, 2007 2:37 am
Subject: Re: [achalasia] Oesophagectomies - question Deb
To: achalasia@yahoogroups.com

> Hi Tracy and Deb,
>
>  Thanks to the both of you for taking time to answer my questions
> again!
>  You've given my some input to have a good talk about with my
> surgeon coming Thursday. Seems like things are going so fast now.
> I remember wanting to make up my mind before September 6th when it
> was still early July, I thought it was ages away and now the day
> has almost arrived. I am glad when September 6th is over, the
> deciding chapter can be closed and we can move on to the
> scheduling part...
>
>  As for the caution Dr. Rice had: I know Dr. Broeders will be
> absolutely cautious. When I had my perforations in January, he was
> the one and only person explaining to me how dangerous they were,
> that he repaired them, but that we needed to take it slow for the
> healing process (boy, did he have me on liquids for ages!). But I
> am sure I will keep you good advice in mind and I will talk things
> through with him very precisely.
>
>  Thanks again,
>  Isabella
>
> tracylb@... wrote:
>          Isabella,
> Things aren't even going to be healed at the 5 day mark! That
> truly
> makes me nervous.
> Some of the things Dr. Rice explained to me that are critical, and
> a
> big part of the reason he takes such time with his 'ectomy
> patients
> starting to eat are that 1) you want the new "structure" to stay
> as
> midline as possible in your chest, and 2) you want to avoid
> dilating
> the stomach at all...eating too soon before things are adequately
> healed will go against both of these points. You may want to
> question
> your surgeon about these things when he tells you his plan for you
> and
> eating.
> Tracy in NY
>
> ----- Original Message -----
> From: Isabella Arnold <arnoldisabella@...>
> Date: Thursday, August 30, 2007 5:00 pm
> Subject: Re: [achalasia] Oesophagectomies - question Deb
> To: achalasia@yahoogroups.com
>
> > Hi Tracy,
> >
> > Five days sounded very soon to me too. At least the leaflet
> > wasn't from my hospital -LOL-. I remember being in hospital last
> > January laying in a room with 3 men who had an -ectomy done (all
> > due to cancer). I saw one of them drink his first cup of tea I
> > think about 1 or 1,5 weeks after surgery. That day I left
> > hospital, so I don't know when he started to eat again. When I
> > left he was still on a feeding tube. Maybe there indeed is a
> > difference between cancer patients and us achalasians on that
> one
> > too. I notice to have worse stomach problems when I am on Botox
> > (so when the food gets in better/sooner).
> >
> > I am very curious as to what my surgeon thinks on this. It's at
> > least one more question to ask him (he better schedules a lot of
> > time for me -he always does-).
> >
> > Isabella
> >
> > tracylb@... wrote:
> > Isabella,
> > It seems to me that all doctors take different approaches when
> it
> > comes to introducing food again after an 'ectomy. I had surgery
> > March
> > 29th, and was not given the green light to eat until my follow
> up
> > appt. on May 3rd, at which time I was allowed to slowly start on
> > clear
> > liquids, then full liquids, then soft solids, etc. There was a
> > gradual
> > build up back to regular food (they gave me a diet to follow),
> at
> > which time you are slowly weening off the tube feedings so there
> > is a
> > good balance of calories and nutrients that is essential for
> your
> > weight as well as healing.
> > Dr. Rice's opinion and preferred method is to take it very slow.
> > Your
> > body has been through major surgery and your digestive system
> has
> > been
> > through trauma. You need time to heal on the inside. The
> > connection
> > site needs time to heal as well, and your digestive system needs
> > to
> > adjust to food again. Remember, our digestive systems haven't
> > functioned normally in years to begin with, and this just adds
> to
> > it.
> > To begin the return to food in 5 days seems CRAZY to me after
> > having
> > been through it.
> > That being said, not all docs take as long as Dr. Rice to do it
> > either, but 5 days seems just absurd.
> > Tracy in NY
> >
> > ----- Original Message -----
> > From: Isabella Arnold <arnoldisabella@...>
> > Date: Thursday, August 30, 2007 12:33 pm
> > Subject: Re: [achalasia] Oesophagectomies - question Deb
> > To: achalasia@yahoogroups.com
> >
> > > Hi Tracy,
> > >
> > > Yeh, now I remember, I also remember how glad you were the
> thing
> > > was finally taken out!
> > >
> > > I am going to ask my surgeon next week what to expect as well.
> > > This as I read that after about 5 days you get a barium test
> to
> > > check for leakages and as of that time you're slowly returning
> > to
> > > normal foods again. That was a kind of leaflet from a Dutch
> > > hospital, so I don't know if things differ on that one between
> > the
> > > US and Holland.
> > >
> > > To be honest I rather have a j-tube and not feel hungry all
> day
> > > long, than getting sick from hunger again. It's just that I
> hate
> > > tubes, but hey, it's gonna be the last time!!!
> > >
> > > Thanks,
> > > Isabella
> > >
> > > tracylb@... wrote:
> > > Isabella,
> > > I went home with a j-tube, which is a tube that is in your
> > > intestine
> > > in your abdomen.
> > > It is used for liquid nutrition until you are ready to start
> > > eating
> > > and while you build up your diet to ensure you get enough
> > > calories.
> > > Honestly, it was not a painful thing physically, but I hated
> > > having
> > > it. The day that came out was such a relief!!!
> > > Tracy in NY
> > >
> > > ----- Original Message -----
> > > From: Isabella Arnold <arnoldisabella@...>
> > > Date: Thursday, August 30, 2007 5:00 am
> > > Subject: Re: [achalasia] Oesophagectomies - question Deb
> > > To: achalasia@yahoogroups.com
> > >
> > > > Hi Deb,
> > > >
> > > > Further to your post earlier this week I do have a question
> > for
> > you.
> > > >
> > > > You mention that you are finally tubeless...does this mean
> you
> > > > went home with one or more tubes? What were they for? I do
> > > > remember Tracy also mentioning she went home with a tube, so
> > you
> > > > both got me curious (I don't like tubes, the worst tube I
> find
> > > the
> > > > one from nose to stomach, yek, that's always a thick hurting
> one).
> > > >
> > > > Thanks in advance.
> > > >
> > > > Love,
> > > > Isabella
> > > >
> > > > Debbie Burt <debbieb55au@...> wrote:
> > > > Hello all,
> > > > It's now almost five weeks since my oesophagectomy and i am
> > > > going really well. I went to see my surgeon last week and he
> > is
> > > > exceptionally pleased with my progress, finally had the last
> > of
> > > > the tubes taken out as well, so now i am tubeless and
> dressing
> > > > free and much more comfortable.
> > > > As far as post operative eating goes - i am still in the
> > > > learning phase but i can eat virtually whatever i want. At
> > times
> > > > i suffer from dumping, coffee is a real no-no, and Crunchy
> Nut
> > > > cornflakes aren't too good either. Like others i think the
> > > secret
> > > > is to not drink too much with meals. My best meal so far has
> > > been
> > > > a small piece of fish with some potato and salad, but i did
> > have
> > > a
> > > > little bit of steak last week as well. No problems at all. I
> > > > can't get over the fact that i can now just swallow and
> don't
> > > have
> > > > to think about it. I am even having ham and lettuce
> sandwiches
> > > > for lunch on fresh bread. I didn't realise i missed
> sandwiches
> > > so
> > > > much until i started eating them again. Pasta is also OK. My
> > > real
> > > > problem is that i don't have much of an appetite (but then i
> > > > hadn't been able to eat solid food all year prior to the
> > > operation
> > > > and was on a liquid diet for seven months), and food doesn't
> > > > really appeal to me. I am eating because i know i have to
> eat.
> > > > Presentation makes a big difference - if it looks appetising
> > > i'll
> > > > try it. Also if Kevin (my husband and personal chef!!!)
> > > overloads
> > > > my plate that also tends to turn me off eating. So it's a
> > fairly
> > > > fine line - things just have to be right.
> > > > I am slowly building up my energy levels - i go for a walk
> > twice
> > > > a day (about 800 m each time), and am doing small things
> > around
> > > > the house, but i still get tired very easily and have to
> have
> > a
> > > > "Nana Nap" every afternoon.
> > > > As far as reflux is concerned - NONE!! i take Nexium every
> > > > evening about half an hour before eating and i have no
> > problems
> > > at
> > > > all. I am hoping to start back at the pool next week (can't
> > > > believe it's so soon) and hope that will help build up my
> > > stamina
> > > > again. My life is already so much better than it was pre
> > > > operatively, and once i have recovered from the op and build
> > up
> > > my
> > > > strength we won't know ourselves. The social life will come
> > back
> > > > again.
> > > > So for all those wondering wht to do - my vote, based on my
> > > > experience, is a big YES.
> > > >
> > > > Deb from Melbourne Australia.
> > > >
> > > >
> > > > ---------------------------------
> > > > Get the World's number 1 free email service. Find out more.
> > > >
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Yahoo! oneSearch: Finally, mobile search that gives answers,
> > not
> > > > web links.
> > > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Ready for the edge of your seat? Check out tonight's top picks
> > on
> > > Yahoo! TV.
> > >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Need a vacation? Get great deals to amazing places on Yahoo!
> > Travel.
> >
>
>
>
>
>
> ---------------------------------
> Luggage? GPS? Comic books?
> Check out fitting  gifts for grads at Yahoo! Search.
>

#44977 From: tracylb@...
Date: Sat Sep 1, 2007 1:04 pm
Subject: Re: Re: Failed Heller???
tldund
Send Email Send Email
 
Isabella,
Hopefully your wonderful post will help more than just Lesa.
I think it is so hard for the spouse or significant other, or even
parents of the person suffering from Achalasia to understand what it
is like. Of course they mean well and are trying to be supportive, but
it is so hard for them to really understand what we go through.
Good job explaining the complexities of our often confused and crazy
thought processes.
Love,
Tracy in NY

----- Original Message -----
From: Isabella Arnold <arnoldisabella@...>
Date: Saturday, September 1, 2007 4:10 am
Subject: Re: [achalasia] Re: Failed Heller???
To: achalasia@yahoogroups.com

> Dear Lesa,
>
>  This is frustrating, I know. It's a hard time both for you and
> your husband. I can so much understand your husband's feeling and
> him not wanting to go back to see the doc. Believe me, I really
> know what he's going through. My second open Heller's failed
> January 5th...
>
>  You know, my problems seemed to have gotten better at first.
> Nowadays I think it must be because the tube that was in my E. for
> several days kind of dilatated my E., but we don't know for sure.
> What I do know for sure, is that you get scared, angry,
> frustrated, emotional, in denial, doubting, crazy when you notice
> such heavy surgery to have failed. It took me (and I guess you and
> your husband as well) a long long time to decide to go for
> surgery. You go through that emotional roller coaster and then you
> finally go through that d... surgery and than you need to recover.
> Before everything has healed and you're back to being your good
> old self again you need to go in that roller coaster again.
>
>  Lesa, your husband will get to the point of seeing a doc again.
> If not today it will be tomorrow. Really. He just needs time.
>
>  Now I am going to tell you something about my case. So no
> worries, I am not telling you you are facing an -ectomy. I am just
> telling you how I coped with my renewed problems.
>
>  After my problems returned I got scared and I am always the
> person who wants to know exactly where I stand. So I immediately
> contacted my surgeon as well as Dr. Schulz in Germany. They both
> told me to be patient and it would probably be an incident. They
> were wrong and things got worse and worse. I wanted to go for 3rd
> myotomy through a new procedure by Dr. Schulz in Germany. In
> Holland I was told to go for the -ectomy, but that was my biggest
> NO-word. I am young, have 2 kids, I didn't want to go through such
> major surgery. Then I got back to liquids and I got severe stomach
> problems. Holland told me to not go for another myotomy, they told
> me to have an -ectomy. Furthermore I learned about complications
> of another patient who had the myotomy done by this new German
> procedure. These things twisted my mind and it took me a while to
> come to terms with things, a lot of postings here on the board, a
> lot of contact with surgeons all over the world. But -ectomy was
> no longer a
> NO-word to me and you know what: Thursday I am going to tell my
> Dutch surgeon to go ahead and schedule the thing.
>
>  What's the point in telling you this? The one and only point is,
> that you need to see that your husband is going to do whatever he
> needs to do. He just needs to be ready to do it.
>  My husband never doubted me needing to have an -ectomy, on one
> hand he did understand my confusion, on the other he didn't. He
> told me right away my problems were thus heavy that I should get
> help and I must go for surgery. It's "easy" for you to say, I told
> him. You are not the one being in hospital again, being in pain
> again, feeling sick again, recovering again, hoping again. That's
> what I told him. I know he just wants the best for me, but
> sometimes it's just hard. You know, Lesa, your husband first needs
> to get mentally ready to go seek renewed help. He'll get to that
> point, honest. Be patient, he's having a hard time.
>
>  Furthermore there's no need to loose hope. Did he at all improve
> at the beginning, that is soon after surgery? I know of a Dutch
> patient (I am from the Netherlands) who had surgery, thought it
> had failed and then had a dilatation which lasted soooo long.
> Perhaps it's just the scar tissueing. Don't jump to conclusions.
> Maybe he now just needs dilatation, maybe surgery. Time will tell
> and doctors will tell (go for the best and go for second opinions).
>
>  I hope to have been of some sort of help and I want you to know
> I don't mean to lecture you. But I know what a mental strain this
> whole thing can be and I hope I helped both you and your husband
> by explaining this.
>
>  Your husband is lucky to have such a loving and caring wife.
>
>  Take care,
>  Isabella
>
> Lesa Myracle <lesamyracle@...> wrote:
>              No, we thought it would last.....most studies and
> info we received said HMs could last for many, many years -- never
> did we ever believe 6 months was it!  The doc & surgeon are VERY
> good - like I said, they come HIGHLY recommended on these boards --
> but we're fairly certain this is their first 'failure' - why us,
> I don't know....
>
>  He did have the HM with the wrap done.  At this point, we know
> surgery and a dilation are the options.  He refuses to see the doc
> again until 'it gets bad enough'.....well, frankly, I'm scared to
> death of him choking to death - it was SO bad earlier this
> year....so very bad....      Anyway, before the HM, we considered
> a dilation.  It wasn't feasible though - we were told it
> definitely wouldn't last due to the current state of the
> esophagus; that it doesn't do as well in males as females and
> given my husband's stature/muscularity, they didn't think it was a
> good idea.  I still have faith in the doctors - - that may sound
> crazy, but I do -- out of everything I've read on these boards,
> they're probably in the top 5 mentioned and recommended (but we
> will consider others at this point) - I by no means want to blame
> them or give anyone a bad impression so I'm not going to use their
> names...  Now, we're wondering what surgery options there are -
> and how common it is for people
> to undergo the HM and then have it fail in 6-9 months.....  Of
> course we won't know the options until 'it gets bad enough' and he
> goes to the doctor again -- we know surgery or dilation -- but
> another HM, is that possible? - of just removal???
>  Thanks for responding.  I'm absolutely frazzled, stressed and
> very sad about it all............he's the love of my life.....
>
>
>  ----- Original Message ----
> From: toomuchclutter <sandycarroll@...>
> To: achalasia@yahoogroups.com
> Sent: Friday, August 31, 2007 5:05:35 PM
> Subject: [achalasia] Re: Failed Heller???
>
>      Why did it fail?  For instance was it looped down like a
> drain pipe?  I'd look back at what the surgeon said about how long
> it would last... was he/she right about why it wouldn't last.
> Then I'd see if a dilatation would help... it is only one day, out
> patient... but if the esophagus is looped.... Frankly..... . I'd
> give up and have a removal and get it over with while your husband
> is young and healthy.  Living with achalasia symptoms becomes all
> you can think of, seems to me better to bite the bullet and have
> the removal and get on with your life.
>  Unless your surgeon was a goof (was it your husband's choice to
> take the chance it would last longer, why (without seeming all
> knowing after the fact) did he do the HM instead of a removal for
> such short results if he knew the results wouldn't last?  (I'm
> trying to say that kindly, not sure it is coming out that way...
> the mean way is... why did you bother, when you knew it wouldn't
> last?)  Again, frankly, once you reach this stage seems like
> removal is the only choice, anything else is a band aid and the
> quality of life suffers.  (Also knowing husbands are chicken and
> not liking to take risks, while women just jump in and get the
> problem taken care of...(venting. .. about a broken dryer and
> applying it to all of life).  Yes, you can live with the mess, but
> why, life is short, try to get the absolute best surgeon (not sure
> who you used.... but frankly (again) not impressed you are in this
> situation so soon, get some second opinions and resolve the
> problem, move on with life, before age, other diseases or
> depression other issues make more surgery even more difficult..
>  Sandy in So Cal... now happily drying clothes.
>
> --- In achalasia@yahoogrou ps.com, "lesamyracle" <lesamyracle@
> ...> wrote:
> >
> > My husband had a Heller Myotomy by an excellent surgeon and very
> > prominent doctor (both are mentioned quite often on these
> boards). I
> > have faith in both of them; unfortunately, the HM has
> failed....the doc
> > said 6-9 months and sure enough, the surgery was in March and my
> > husband's condition is now getting much worse everyday. The
> choking
> > has been gone, up until last night....... ......... .........
> ......
> >
> > Has anyone else experienced a failed Heller Myotomy this soon?
> Perhaps
> > they didn't cut enough on the first one? I don't know if this
> has
> > anything to do with my husband's size - he's very strong, young,
> > muscular.... ??? If so, what route did you take next? I think
> his
> > options are the balloon or another HM........
> >
> > We're both very depressed about it all. Anyone who can enlighten
> us on
> > this matter would be greatly appreciated. We've looked through
> these
> > boards before and are grateful for everyone's opinions & shared
> > experiences. Thanks!
> >
>
>
>
>
>
>
>
>
> ---------------------------------
>  Be a better Globetrotter. Get better travel answers from someone
> who knows.
> Yahoo! Answers - Check it out.
>
>
>
>
> ---------------------------------
> Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see
> what's on, when.
>

#44978 From: Ann Higgs <lilac_blossom_lady@...>
Date: Sat Sep 1, 2007 4:37 pm
Subject: Re: New member
lilac_blosso...
Send Email Send Email
 
Dear Lewis,
 
Welcome to the Group.  I live in the North of England and have had Achalasia since 1990.  You need 3 forms of support to fight this disorder: a good Doctor, a kind network of family and friends and THIS Group.  There are some wonderful members here and no one else understands the way that we do.
 
It is not uncommon for dilatations to be only temporary in younger patients (say under 50) and it may be that you now need the surgery for a much longer and better relief. You are trying your best to cope with your second-rate swallowing and I for one know how that is, because I was foolish enough to go without treatment for 16 years, but you do not have to put up with this.
 
It sounds like it is time for you to seek further medical help. It is wise to learn about the experiences of others, as that arms you with the knowledge you need to make some informed decisions about your future.
 
Best Wishes from Ann x


Marching On <marching.on@...> wrote:
Hi, I'm new here. My name is Lewis. I'm in my late 30s and I'm from Somerset in the UK.
 
After several months of being unable to eat anything in 2003 (and losing some 8 inches around the waist!), I was finally diagnosed with achalasia and underwent two balloon dialtions at my local hospital.
 
Although I can now eat almost anything I like, meal times are still uncomfortable for me, especially just recently when I've been getting very choked up.
 
I am not losing any weight at the moment but I am thinking of going back to my doctor to discuss further possible options - another dialtion? an operation perhaps?
 
The only things I try to do to counteract the problems are:
 
(i) concentrate on breathing through my nose when I eat and,
(ii) eat slowly and chew things into small pieces
 
However, it's very easy to revert to normal eating mode, forget the above and end up with some painful problems.
 
If anyone can suggest other things to do / be aware of, I'd be grateful.
 
I've not really noticed which foods make it worse. Sometimes it's bread but other times, I find it is easy to eat (especialy hard crusty bread which you'd think would be difficult).
 
I do find that a beer sometimes helps before a meal - it has to be a real ale and not a gassy lager though. Whether it relaxed the muscles inside, I don't know. 
 
Has anyone discovered any drinks or foods that help with their eating?
 
I also wondered what alternative therapies have fellow sufferers found useful.
 
I'm sure you have discussed many things in the past so it might be easier to write to me directly rather than repeat it again here. If so, my e-mail is marching.on@tiscali.co.uk
 
I will be extremely grateful for absolutely any help anyone can provide.
 
I have posted a similar message on the alternative treatment group but thought I'd replicate it here as there seems to be more people on this particular list.
 
I'm normally quite a positive person but I have to confess that the condition has got me down in recent days as I am having problems every mealtime. However, I know there are much worse things to suffer from and I'm sure that by contacting others who know what's it's like will be of some help to me.
 
Thank you for listening.
 
Regards, Lewis


For ideas on reducing your carbon footprint visit Yahoo! For Good this month.

#44979 From: Deborah Lattimore <deborah_Lattimore@...>
Date: Sat Sep 1, 2007 10:02 pm
Subject: Re:New member
artistdebora...
Send Email Send Email
 
Hello, Lewis,
 
         Before I found this group and joined it, I went through a series of various
diagnoses but it wasn't until I found this group and then, armed with loads of
information, I returned to Cedars Sinai, found a "gastro-dectective" and got
diagnosed properly.  Since then, I've had a Hellers and my swallowing has
improved enormously.  The links and files at this site are very helpful, supportive
and remind me that once some doctors thought I was just having a problem
with benign cyclical vomiting....but it was Achalasia.
 
          I hope you are able to get some great and very helpful answers here.
I know I have and still do.
 
                  Deborah

#44980 From: "lsk631" <lsk631@...>
Date: Mon Sep 3, 2007 3:39 pm
Subject: Re: Recovery
lsk631
Send Email Send Email
 
--- In achalasia@yahoogroups.com, "toniasdogsandi" <toniasdogsandi@...> wrote:
>
> A normal lapro myotomy is a day or two in the hospital and a few weeks
> down time to rest up.It depends on your type of work as well.I do not
> even know what the other procedure is,what is that?
> Tonia
>
>
> --- In achalasia@yahoogroups.com, "Leon K" <leonsam1@> wrote:
> >
> > I'm having a Lap heller myotomy and diverticulotomy.  How much time
> should I take off from
> > work?
> >
>
Tonia,
It's a small sac that forms at the lower esophagus due to the pressure. 
Apparently they fix it
at the time of the myotomy.  Is there alot of discomfort during the first week
post-op?

#44981 From: "Kristen" <contessakay@...>
Date: Mon Sep 3, 2007 4:19 pm
Subject: Appointment with Dr. Little
contessakay
Send Email Send Email
 
Hi everyone,

I'm sorry to those emails I didn't personally reply to - I appreciated
all of them!!! Just wanted to let you know I have an appointment with
an achalasia specialist/surgeon, Alex Little, on 9/11. I wondered if I
would be able to see him since I have not been diagnosed, but I got
in, anyway. I am doing this on my own, because I was just fed up with
dealing with this with no answers. I really hope he is able to help
me. I have never talked with an achalasia specialist before and am
really interested to see what he says. If not, my next step is
Cleveland Clinic.

Kristen

#44982 From: "Kristen" <contessakay@...>
Date: Mon Sep 3, 2007 9:56 pm
Subject: Does Achalasia cause severe stomach pain?
contessakay
Send Email Send Email
 
I have had severe stomach pain for the last year and have never gotten
it diagnosed. The doctors give me strong pain meds for it, but they
really don't know what it causing it. The pain is at the base of my E.
and is anywhere from burning to grinding pain. It is terrible pain.

I wondered if this goes along with achalasia. If there is a motility
problem and the food tends to sit in the E. or at the base of the E.
(where the muscle is), would this cause terrible pain? Do you guys
have it? Is this common with A or other motility disorders?

Thanks for the help!
Kristen

#44983 From: "let45ride" <brendacoyle@...>
Date: Mon Sep 3, 2007 10:24 pm
Subject: Re: Appointment with Dr. Little
let45ride
Send Email Send Email
 
Kristen,
     Good luck at your appointment with Dr. Little!  Last year, my
husband saw Dr. Rice for a consult, only after we insisted on it with
the GI doc (Dr. Achkar, also at Cleveland).  Dr. Achkar had said there
was nothing else he could do for Brian, who was still miserable and we
weren't ready to take that for an answer.  It helped to answer more
questions for us to see Dr. Rice and he did order more tests that
confirmed the DES diagnosis once again (sometimes DES progresses into
A, but they decided that Brian's hadn't).  He also prescribed
Nifedical, which has been of some help, too.
     Hopefully, you get some answers from Dr. Little!  Please keep us
posted on how it goes.

Brenda in Michigan

--- In achalasia@yahoogroups.com, "Kristen" <contessakay@...> wrote:
>
> Hi everyone,
>
> I'm sorry to those emails I didn't personally reply to - I appreciated
> all of them!!! Just wanted to let you know I have an appointment with
> an achalasia specialist/surgeon, Alex Little, on 9/11. I wondered if I
> would be able to see him since I have not been diagnosed, but I got
> in, anyway. I am doing this on my own, because I was just fed up with
> dealing with this with no answers. I really hope he is able to help
> me. I have never talked with an achalasia specialist before and am
> really interested to see what he says. If not, my next step is
> Cleveland Clinic.
>
> Kristen
>

#44984 From: "jagd41" <jchavez1925@...>
Date: Tue Sep 4, 2007 4:22 pm
Subject: Questions
jagd41
Send Email Send Email
 
I am finally going to meet with the doctor that diagnosed my 14 y.o.
son on wed. We live in Albuquerque, so I am not sure about surgeons,
but I was wondering if anyone has suggestions for pertinent questions
I should ask the doctor when we meet. I have quite a few in mind
thanks to your posts, and one lady in particular who has a son my
son's age. Thanks again for this site. John Chavez

#44985 From: "jomascarenas" <jomascarenas@...>
Date: Tue Sep 4, 2007 6:29 pm
Subject: Re: Questions
jomascarenas
Send Email Send Email
 
--Hi,
I'm also from NM.  I was diagnosed last December.   My home dr. put me on
medication
and made an appointment for six weeks later. I was lucky enough to get in
contact with
Tonia from this group. (She has a son with achalasia)  When I went to my
appointment I
discovered that I knew more about achalasia than he did.  I ended up going to
Dr. Rice in
Cleveland and have never regretted it.  I had my records sent to Cleveland and
Dr. Rice
reviewed them, called me and set up an appointment, all the tests needed and
also
allowed time for the Hellar Myotomy if need be.  This was all within one weeks
time.  It
was such a relief to be around doctors and nurses who understood achalasia.  If
you are
looking for a surgeon I strongly suggest you find one who is VERY experienced
with
achalasia.  My surgery was very successful and I am able to eat everything I
want.  I also
have no acid reflux so I do not need to be on medication.  If I can be of any
help pleast let
me know.
JoAnn

- In achalasia@yahoogroups.com, "jagd41" <jchavez1925@...> wrote:
>
> I am finally going to meet with the doctor that diagnosed my 14 y.o.
> son on wed. We live in Albuquerque, so I am not sure about surgeons,
> but I was wondering if anyone has suggestions for pertinent questions
> I should ask the doctor when we meet. I have quite a few in mind
> thanks to your posts, and one lady in particular who has a son my
> son's age. Thanks again for this site. John Chavez
>

#44986 From: LunaIam2@...
Date: Tue Sep 4, 2007 2:30 pm
Subject: Re: Questions
lunaiam2
Send Email Send Email
 
John, here is a link to some questions for both the GI and
Surgeon that has been added to the database on the web
page.  Hope these will help you.
 
 
 
 
Please let us know what the doctor has to say and any
other questions you might have before or after your
visit to the doctor.
 
Maggie
Alabama
 
 
 
 




Get a sneak peek of the all-new AOL.com.

#44987 From: Sharon West <iipistacio1117@...>
Date: Tue Sep 4, 2007 7:06 pm
Subject: HELP! I DONT KNOW WHAT ELSE TO SAY!
iipistacio
Send Email Send Email
 
Dear Group,  I a once again reaching out with my greedy hand.  I feel that I am at a total loss and the last 8 months has been for nothing.  I am forwarding a copy of the letter I received from Dr. Gary Falk.  As many of you know I had a scope with biopsies done on the 15th of August and have been waiting for the results and the next steps in my medical treatment of this darn A.  I called the Clinic several time only to be told they  had nothing back but according to this letter Dr. Falk knew on 08/17/07.  I received this letter on Friday 08/29/07.
 
THE LETTER:  Dear Mrs. West:  Just a quick note to let you know that the biopsies from your esophageal ulcer reveal no evidence of ongoing herpers infection.  There is evidence of a viral infection though.  This is a run-of-the-mill ulcer.  While there are fungal elements seen elsewhere in the e esophagus, it is unclear what significance this has.  When you receive , it is essential that you start acid blocking medications such as Prilosec OTC or prescription strength medication for acid blocker.  The use of anti-fungal medications in your case is elective.  I would only do this if the Infectious Disease service thinks that is appropriate.
 
Should you have any questions, please feel free to contact me.
 
Sincerely yours Gary Falk, electronically signed.
 
What the heck is this about and why is he acting like he doesn't even know that I am already taking Protonix 2x per day with no relief.
 
I am done, I feel like I am swimming in circles in a scum filled pool.  I have no idea what to do at this point except that I am really angry that this is all I get after the months of testing.  I would like to scream at him
 
Can someone tell me where to go an how to pick myself up>  The pain is so overwhelming.  I am so tired and weak.
 
Sharon I want to eat and swallow in Ohio

#44988 From: "toniasdogsandi" <toniasdogsandi@...>
Date: Tue Sep 4, 2007 10:26 pm
Subject: Re: HELP! I DONT KNOW WHAT ELSE TO SAY!
toniasdogsandi
Send Email Send Email
 
PLEASE JUST CALL AND SCHEDULE A APPOINTMENT WITH DR RICE !!!
TELL HIM YOU ARE READY FOR SOMETHING TO BE DONE AND OBVIUOSLY NOONE
ELSE CAN DO THAT FOR YOU.
THIS IS FRUSTRATING ME SO I CAN ONLY IMAGINE HOW YOU MUST FEEL ALONG
WITH NOT BEING ABLE TO EAT AND BEING IN PAIN.PLEASE CALL DR RICE!!!!
ALSO IF YOU WOULD LIKE TO TALK BY PHONE JUST LET ME KNOW-SOMETIMES
IT HELPS TO HEAR A VOICE.I KNOW IT HELPED ME TREMENDOUSLY WHEN I WAS
GOING THROUGH THIS WITH MY SON.SEVERAL PEOPLE HERE REALLY HELPED ME
BY JUST TALKING AND LETTING ME VENT.LET ME KNOW OK.
DO CALL THAT CLINIC AND LET US KNOW WHAT IS DONE.
HANG IN THEIR SWEETIE-I WILL KEEP YOU IN MY PRAYERS
TONIA IN VA

--- In achalasia@yahoogroups.com, Sharon West <iipistacio1117@...>
wrote:
>
> Dear Group,  I a once again reaching out with my greedy hand.  I
feel that I am at a total loss and the last 8 months has been for
nothing.  I am forwarding a copy of the letter I received from Dr.
Gary Falk.  As many of you know I had a scope with biopsies done on
the 15th of August and have been waiting for the results and the
next steps in my medical treatment of this darn A.  I called the
Clinic several time only to be told they  had nothing back but
according to this letter Dr. Falk knew on 08/17/07.  I received this
letter on Friday 08/29/07.
>
>   THE LETTER:  Dear Mrs. West:  Just a quick note to let you know
that the biopsies from your esophageal ulcer reveal no evidence of
ongoing herpers infection.  There is evidence of a viral infection
though.  This is a run-of-the-mill ulcer.  While there are fungal
elements seen elsewhere in the e esophagus, it is unclear what
significance this has.  When you receive , it is essential that you
start acid blocking medications such as Prilosec OTC or prescription
strength medication for acid blocker.  The use of anti-fungal
medications in your case is elective.  I would only do this if the
Infectious Disease service thinks that is appropriate.
>
>   Should you have any questions, please feel free to contact me.
>
>   Sincerely yours Gary Falk, electronically signed.
>
>   What the heck is this about and why is he acting like he doesn't
even know that I am already taking Protonix 2x per day with no
relief.
>
>   I am done, I feel like I am swimming in circles in a scum filled
pool.  I have no idea what to do at this point except that I am
really angry that this is all I get after the months of testing.  I
would like to scream at him
>
>   Can someone tell me where to go an how to pick myself up>  The
pain is so overwhelming.  I am so tired and weak.
>
>   Sharon I want to eat and swallow in Ohio
>

#44989 From: "toniasdogsandi" <toniasdogsandi@...>
Date: Tue Sep 4, 2007 10:34 pm
Subject: Re: Questions
toniasdogsandi
Send Email Send Email
 
Hey John-
I am glad you are meeting with him.Give me a call if you have anymore
questions ok.Also Let me know how things go and remember to ask how
many he has done and request names and numbers of the pateints.Look
foward to hearing back from you.Tell Adam to hang in their.
I had another lady from  Maryland  email me the other day -she also
has a son 14 just diagnosed with A.
Tonia
--- In achalasia@yahoogroups.com, "jagd41" <jchavez1925@...> wrote:
>
> I am finally going to meet with the doctor that diagnosed my 14 y.o.
> son on wed. We live in Albuquerque, so I am not sure about surgeons,
> but I was wondering if anyone has suggestions for pertinent
questions
> I should ask the doctor when we meet. I have quite a few in mind
> thanks to your posts, and one lady in particular who has a son my
> son's age. Thanks again for this site. John Chavez
>

#44990 From: Sharon West <iipistacio1117@...>
Date: Wed Sep 5, 2007 1:28 am
Subject: Re: Re: HELP! I DONT KNOW WHAT ELSE TO SAY!
iipistacio
Send Email Send Email
 
I have made my decision thanks to you that I have waited long enough abd benn patient enough I  need action and answewrs I will call dr Rice first thing Wed and get back to you.
 
Thanks Sharon

toniasdogsandi <toniasdogsandi@...> wrote:
PLEASE JUST CALL AND SCHEDULE A APPOINTMENT WITH DR RICE !!!
TELL HIM YOU ARE READY FOR SOMETHING TO BE DONE AND OBVIUOSLY NOONE
ELSE CAN DO THAT FOR YOU.
THIS IS FRUSTRATING ME SO I CAN ONLY IMAGINE HOW YOU MUST FEEL ALONG
WITH NOT BEING ABLE TO EAT AND BEING IN PAIN.PLEASE CALL DR RICE!!!!
ALSO IF YOU WOULD LIKE TO TALK BY PHONE JUST LET ME KNOW-SOMETIMES
IT HELPS TO HEAR A VOICE.I KNOW IT HELPED ME TREMENDOUSLY WHEN I WAS
GOING THROUGH THIS WITH MY SON.SEVERAL PEOPLE HERE REALLY HELPED ME
BY JUST TALKING AND LETTING ME VENT.LET ME KNOW OK.
DO CALL THAT CLINIC AND LET US KNOW WHAT IS DONE.
HANG IN THEIR SWEETIE-I WILL KEEP YOU IN MY PRAYERS
TONIA IN VA

--- In achalasia@yahoogroups.com, Sharon West <iipistacio1117@...>
wrote:
>
> Dear Group, I a once again reaching out with my greedy hand. I
feel that I am at a total loss and the last 8 months has been for
nothing. I am forwarding a copy of the letter I received from Dr.
Gary Falk. As many of you know I had a scope with biopsies done on
the 15th of August and have been waiting for the results and the
next steps in my medical treatment of this darn A. I called the
Clinic several time only to be told they had nothing back but
according to this letter Dr. Falk knew on 08/17/07. I received this
letter on Friday 08/29/07.
>
> THE LETTER: Dear Mrs. West: Just a quick note to let you know
that the biopsies from your esophageal ulcer reveal no evidence of
ongoing herpers infection. There is evidence of a viral infection
though. This is a run-of-the-mill ulcer. While there are fungal
elements seen elsewhere in the e esophagus, it is unclear what
significance this has. When you receive , it is essential that you
start acid blocking medications such as Prilosec OTC or prescription
strength medication for acid blocker. The use of anti-fungal
medications in your case is elective. I would only do this if the
Infectious Disease service thinks that is appropriate.
>
> Should you have any questions, please feel free to contact me.
>
> Sincerely yours Gary Falk, electronically signed.
>
> What the heck is this about and why is he acting like he doesn't
even know that I am already taking Protonix 2x per day with no
relief.
>
> I am done, I feel like I am swimming in circles in a scum filled
pool. I have no idea what to do at this point except that I am
really angry that this is all I get after the months of testing. I
would like to scream at him
>
> Can someone tell me where to go an how to pick myself up> The
pain is so overwhelming. I am so tired and weak.
>
> Sharon I want to eat and swallow in Ohio
>



#44991 From: "toomuchclutter" <sandycarroll@...>
Date: Wed Sep 5, 2007 4:17 am
Subject: Re: HELP! I DONT KNOW WHAT ELSE TO SAY!
toomuchclutter
Send Email Send Email
 

Well Sharon, I have a tattle-tale need sometimes when people are incompetent.

I looked up Dr. Falk, hoping to find a chain of command or organizational chart as to who is the head of the Digestive Disease Department, but CC doesn't seem to have that.  Here is the link http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=261

But I don't see a head of the department.  I'd search and find it, when you make appointments or just save time and write to any top official you find.  Hospitals are very status oriented and have a very strict chain of command I think.  I'd tattle, first by stating your history, copying what he sent, showing documentation he should have about what you are already taking and explaining your dreadful stress "causing you increased spasms, misery and loss of faith in CC".  Then I'd copy some of the marketing words they have about their high level of service and ask why in the world you weren't referred to Dr. Rice when he is right there????  Why aren't they meeting what they say in their marketin pieces.

Try to make it summarized, I'm guessing your records are all available to the heads of departments and tell them what a let down it is to this group etc.etc.  (suggesting bad publicity)  Find quotes from their website about how they are specialists etc.

If you make it concise and pointed I bet you will just sail through any other tests at Cleveland.  I think the heads need to know how you were let down, only by knowing can they improve.

You will vent and feel SO much better.  And I'd copy him.  It isn't as if you would ever see him again, or if you do he will be on his toes.  But find the head of the department.  Perhaps copy their marketing department, or anyone who won't just cover it up.

They need to know there was a screw up.  I think doctors may cover up for each other, so a peer or someone who works with him often likely wouldn't take it any further. 

Sandy in So Cal..... (School starts tomorrow here, Celebrations galore.!!!)


--- In achalasia@yahoogroups.com, Sharon West <iipistacio1117@...> wrote:
>
> Dear Group, I a once again reaching out with my greedy hand. I feel that I am at a total loss and the last 8 months has been for nothing. I am forwarding a copy of the letter I received from Dr. Gary Falk. As many of you know I had a scope with biopsies done on the 15th of August and have been waiting for the results and the next steps in my medical treatment of this darn A. I called the Clinic several time only to be told they had nothing back but according to this letter Dr. Falk knew on 08/17/07. I received this letter on Friday 08/29/07.
>
> THE LETTER: Dear Mrs. West: Just a quick note to let you know that the biopsies from your esophageal ulcer reveal no evidence of ongoing herpers infection. There is evidence of a viral infection though. This is a run-of-the-mill ulcer. While there are fungal elements seen elsewhere in the e esophagus, it is unclear what significance this has. When you receive , it is essential that you start acid blocking medications such as Prilosec OTC or prescription strength medication for acid blocker. The use of anti-fungal medications in your case is elective. I would only do this if the Infectious Disease service thinks that is appropriate.
>
> Should you have any questions, please feel free to contact me.
>
> Sincerely yours Gary Falk, electronically signed.
>
> What the heck is this about and why is he acting like he doesn't even know that I am already taking Protonix 2x per day with no relief.
>
> I am done, I feel like I am swimming in circles in a scum filled pool. I have no idea what to do at this point except that I am really angry that this is all I get after the months of testing. I would like to scream at him
>
> Can someone tell me where to go an how to pick myself up> The pain is so overwhelming. I am so tired and weak.
>
> Sharon I want to eat and swallow in Ohio
>


#44992 From: notan ostrich <notan_ostrich@...>
Date: Wed Sep 5, 2007 6:45 am
Subject: News: Shape of E DOES effect outcome!!!
notan_ostrich
Send Email Send Email
 
I said it would be interesting to see other studies on the effect the
diameter and shape of the esophagus have on surgery outcome. Here is
one. Again, this was announced in the news at CarePlace. Stage IV is
otherwise known as end stage. Now the question is why do these studies
come to opposite conclusions?

Long-term functional results after laparoscopic surgery for esophageal
achalasia.
http://www.ncbi.nlm.nih.gov/sites/entrez?tmpl=NoSidebarfile&db=PubMed&cmd=Retrie\
ve&list_uids=17188083&dopt=AbstractPlus
<http://www.ncbi.nlm.nih.gov/sites/entrez?tmpl=NoSidebarfile&db=PubMed&cmd=Retri\
eve&list_uids=17188083&dopt=AbstractPlus>

"Sixty-eight patients with achalasia were assessed ... Only 50% of stage
IV patients reported satisfactory results. ... Stage IV patients with
initially unsatisfactory results reported a worsening of symptoms ...
Esophageal emptying remained satisfactory in stage I, II, and III
responders, but deteriorated in stage IV nonresponders and in 6 of the
10 patients with a pseudodiverticulum. CONCLUSIONS: A satisfactory
outcome of the laparoscopic Heller-Dor procedure in stage I, II, and III
achalasic patients seems to last. Stage IV nonresponders tend to
deteriorate over time. The development of pseudodiverticulum is
associated with an increased symptom score."

notan

#44993 From: "let45ride" <brendacoyle@...>
Date: Wed Sep 5, 2007 1:44 pm
Subject: Re: HELP! I DONT KNOW WHAT ELSE TO SAY!
let45ride
Send Email Send Email
 
Sharon,
      As of a couple of years ago, when my husband first went to
Cleveland Clinic, Dr. Edgar Achkar was the head of the Swallowing
Disorders Clinic.  Is Dr. Falk back from his vacation this week, also?
  Maybe you should try calling his office first, then if you don't get
anywhere try to contact Dr. Achkar or Dr. Rice.  Good luck and please
keep us posted!  We're all hoping you get some relief SOON!

Brenda in Michigan

--- In achalasia@yahoogroups.com, "toomuchclutter" <sandycarroll@...>
wrote:
>
>
> Well Sharon, I have a tattle-tale need sometimes when people are
> incompetent.
>
> I looked up Dr. Falk, hoping to find a chain of command or
> organizational chart as to who is the head of the Digestive Disease
> Department, but CC doesn't seem to have that.  Here is the link
> http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=261
> <http://cms.clevelandclinic.org/digestivedisease/body.cfm?id=261>
>
> But I don't see a head of the department.  I'd search and find it, when
> you make appointments or just save time and write to any top official
> you find.  Hospitals are very status oriented and have a very strict
> chain of command I think.  I'd tattle, first by stating your history,
> copying what he sent, showing documentation he should have about what
> you are already taking and explaining your dreadful stress "causing you
> increased spasms, misery and loss of faith in CC".  Then I'd copy some
> of the marketing words they have about their high level of service and
> ask why in the world you weren't referred to Dr. Rice when he is right
> there????  Why aren't they meeting what they say in their marketin
> pieces.
>
> Try to make it summarized, I'm guessing your records are all available
> to the heads of departments and tell them what a let down it is to this
> group etc.etc.  (suggesting bad publicity)  Find quotes from their
> website about how they are specialists etc.
>
> If you make it concise and pointed I bet you will just sail through any
> other tests at Cleveland.  I think the heads need to know how you were
> let down, only by knowing can they improve.
>
> You will vent and feel SO much better.  And I'd copy him.  It isn't as
> if you would ever see him again, or if you do he will be on his toes.
> But find the head of the department.  Perhaps copy their marketing
> department, or anyone who won't just cover it up.
>
> They need to know there was a screw up.  I think doctors may cover up
> for each other, so a peer or someone who works with him often likely
> wouldn't take it any further.
>
> Sandy in So Cal..... (School starts tomorrow here, Celebrations
> galore.!!!)
>

#44994 From: "Kristen" <contessakay@...>
Date: Wed Sep 5, 2007 1:52 pm
Subject: Are my LES levels normal? Please help!!!
contessakay
Send Email Send Email
 
Some of you suggested I try to find out what the numbers on my LES
are. I got out copies of my motility tests and have no idea what
the 'normal' LES levels are supposed to be, or what they read for
achalasia. Could someone please help me? I don't know exactly how to
read it, but here is what the report says:

LES Proximal - 38.0 cm
Distal - 42.0 cm
Total LES Length - 4.0 cm
Intra-abdominal length - 3.0 cm

Does this mean anything to anyone? Thanks so much!!!
Kristen in Ohio

#44995 From: "michelle" <mcnairmichelle@...>
Date: Wed Sep 5, 2007 3:42 pm
Subject: Isabella
zlmmom1
Send Email Send Email
 
Hey I - good luck tomorrow, hopefully I've gotten this to you in enough
time, I don't know how far ahead of me you are on the clock. Please let
us know what your surgeon says and when your date will be.

Your 'sister' in the -ectomy world...

Happy swallowing!
-Michelle in NC

#44996 From: Ann Higgs <lilac_blossom_lady@...>
Date: Wed Sep 5, 2007 4:44 pm
Subject: Re: Isabella
lilac_blosso...
Send Email Send Email
 
All the best, Isabella, for tomorrow.
We are all on your side.
Love from Ann in England XXX

michelle <mcnairmichelle@...> wrote:
Hey I - good luck tomorrow, hopefully I've gotten this to you in enough
time, I don't know how far ahead of me you are on the clock. Please let
us know what your surgeon says and when your date will be.

Your 'sister' in the -ectomy world...

Happy swallowing!
-Michelle in NC



Yahoo! Answers - Get better answers from someone who knows. Try it now.

#44997 From: "battaglinianita" <battaglinianita@...>
Date: Wed Sep 5, 2007 5:12 pm
Subject: Re: Isabella
battaglinianita
Send Email Send Email
 
G'day Isabella!

I've had September 6 "earmarked" in my internal clock, too. Have been thinking
of you in the
lead-up to your appointment tomorrow. All the best!

Anita in Germany

#44998 From: "Rob Earl" <rob@...>
Date: Wed Sep 5, 2007 5:45 pm
Subject: RE: Does Achalasia cause severe stomach pain?
earlrc_2000
Send Email Send Email
 

Hi Kristen,

 

I didn’t check to see if anyone replied to you, but I thought you should know that for me the pain was an indicator that something was wrong long before I was diagnosed with A.  I’ve learned over the years that the pain I get is from muscles cramping down near my diaphram.  This is not to be confused with E. spasms which I also get and feel like a heart attack.  The cramping pain can go on for hours and even after the Heller surgery it seems to happen once in a while, usually after I strain something down in that area.  I find that cold applied to my back just behind my stomach helps numb the pain.  I have no idea why, but it works.  After things feel numb, I then apply heat to help relax the muscles.  I also take a couple of Advil and that helps it go away as well.

 

I hope this info helps.  Let me know if you have more questions.

 

Rob

 

 


From: achalasia@yahoogroups.com [mailto:achalasia@yahoogroups.com] On Behalf Of Kristen
Sent: Monday, September 03, 2007 5:56 PM
To: achalasia@yahoogroups.com
Subject: [achalasia] Does Achalasia cause severe stomach pain?

 

I have had severe stomach pain for the last year and have never gotten
it diagnosed. The doctors give me strong pain meds for it, but they
really don't know what it causing it. The pain is at the base of my E.
and is anywhere from burning to grinding pain. It is terrible pain.

I wondered if this goes along with achalasia. If there is a motility
problem and the food tends to sit in the E. or at the base of the E.
(where the muscle is), would this cause terrible pain? Do you guys
have it? Is this common with A or other motility disorders?

Thanks for the help!
Kristen


#44999 From: Isabella Arnold <arnoldisabella@...>
Date: Wed Sep 5, 2007 6:16 pm
Subject: Re: Isabella
arnoldisabella
Send Email Send Email
 
Hi guys,
 
Thank you all so much for your well wishes! Just what I needed today...
 
At the moment I am so very very nervous, I don't know why, I just am. Of course my mind is made up and I know what to expect, but this is D-Day and things are getting "official" now. My feelings change by the hour: one moment I doubt whether I need to do it; the other I am convinced again. Sometimes I even think (hope) I am going to hear tomorrow that there's no need for an -ectomy. But deep down I know what's going to be discussed tomorrow (not even deep down, I know it way up, I guess...).
 
Well just one more night and the doubting time will be over and done with.
 
Of course I'll let you all know what happened tomorrow night.
 
Thanks again, you guys are the best!
 
Love,
Isabella

michelle <mcnairmichelle@...> wrote:
Hey I - good luck tomorrow, hopefully I've gotten this to you in enough
time, I don't know how far ahead of me you are on the clock. Please let
us know what your surgeon says and when your date will be.

Your 'sister' in the -ectomy world...

Happy swallowing!
-Michelle in NC



Park yourself in front of a world of choices in alternative vehicles.
Visit the Yahoo! Auto Green Center.

#45000 From: Isabella Arnold <arnoldisabella@...>
Date: Wed Sep 5, 2007 6:43 pm
Subject: Another e-mail... renewed doubts...
arnoldisabella
Send Email Send Email
 
Dear friends,
 
Just after I wrote the post about my decision and my doubts, I got a post from Dr. Schulz tonight.
 
He still wants to perform the TSE on me. He tells me he thought the -ectomy would indeed be performed in the breast area and he tells me that indeed the neck area is less risky for reflux etc. He is against removing organs, as you cannot replace them later.
 
He tells me he could try TSE and if it doesn't work we can still go for the -ectomy.
I wrote him back that I then first want to know how many -ectomies he has performed already, as experience is of the utmost importance here.
 
Guys, I know you think I am doing the right thing by going for the -ectomy. But why am I doubting again? I made up my mind. I am so scared. I will follow my heart, but does it tell me the right thing???
 
Why am I doing this to myself? Why do I keep having these doubts and why do I keep running around in this crazy little circle?
 
Love,
Isabella


Boardwalk for $500? In 2007? Ha!
Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

#45001 From: "jagd41" <jchavez1925@...>
Date: Wed Sep 5, 2007 7:29 pm
Subject: progress
jagd41
Send Email Send Email
 
Hi all. I finally met with my son's gastro, and was armed with my own
questions as well as some you sent me. It seems our dr has done his
own research, so he basically answered my questions without my ever
asking them! Our next order of business is to find a surgeon to
perform my son's procedure(s). We are to meet with a surgeon our dr
recommended, but I feel we will ultimately be going out of town to
find a surgeon that we are comfortable with. I will be trying to get
in touch with dr Rice's office in hopes of ultimately using him since
his name is the name I most often see.
Once again, I thank you all for this site, and for your willingness to
share.
John in ABQ

#45002 From: tracylb@...
Date: Wed Sep 5, 2007 7:35 pm
Subject: Re: Another e-mail... renewed doubts...
tldund
Send Email Send Email
 
To answer your questions: "Why am I do this to myself? Why do I keep
having these doubts and why do I keep running around in this crazy
little circle?", I have two responses:

1. You are NORMAL.
2. Human nature

See my previous response to your earlier "doubting yourself" note for
my thoughts.
Again, only you can make this decision, and we will ALL support you no
matter what that decision is. Unfortunately there is no easy answer,
and there is no way to know the right answer or take away your fear of
the unknown.
That being said, you need to put the fear aside to examine your
choices from a logical viewpoint. Realistically, you will have fear no
matter which surgery you choose. After all, surgery is surgery. The
TSE surgery runs the risk of failure, in which case you would have
an 'ectomy anyway. The 'ectomy is removing something, but it's
removing something that doesn't work to begin with, so the fact that
he says it would be too late to replace it is kind of silly in my
mind. Why would you want it back if it is causing you so much trouble
in the first place?? Personally, while I have my good days and bad
days, I am still glad to be rid of it. The past 5 months have had
challenges, but overall I am healthier for having this done, and there
is no question in my future of when the problems will occur and how
bad will they be and so forth.
SO, again, both surgeries are a big deal, and both are scary. Enough
said. Now look at the facts of both and of what you are up against,
and what you will consider success. Also think of what you have been
through and if you want to continue with the unknown, or be done with
it. Think about your family and what each surgery means to them.
Consider your confidence in the surgeons and the information you have
gathered. Don't think of the fear, think of all these other things. If
it was someone else you were giving advice to, instead of yourself,
what would you tell them????

Leaving you with things to think about,
Tracy in NY


----- Original Message -----
From: Isabella Arnold <arnoldisabella@...>
Date: Wednesday, September 5, 2007 2:47 pm
Subject: [achalasia] Another e-mail... renewed doubts...
To: Achalasia <achalasia@yahoogroups.com>

> Dear friends,
>
>  Just after I wrote the post about my decision and my doubts, I
> got a post from Dr. Schulz tonight.
>
>  He still wants to perform the TSE on me. He tells me he thought
> the -ectomy would indeed be performed in the breast area and he
> tells me that indeed the neck area is less risky for reflux etc.
> He is against removing organs, as you cannot replace them later.
>
>  He tells me he could try TSE and if it doesn't work we can still
> go for the -ectomy.
>  I wrote him back that I then first want to know how many -
> ectomies he has performed already, as experience is of the utmost
> importance here.
>
>  Guys, I know you think I am doing the right thing by going for
> the -ectomy. But why am I doubting again? I made up my mind. I am
> so scared. I will follow my heart, but does it tell me the right
> thing???
>  Why am I doing this to myself? Why do I keep having these doubts
> and why do I keep running around in this crazy little circle?
>
>  Love,
>  Isabella
>
>
> ---------------------------------
> Boardwalk for $500? In 2007? Ha!
> Play Monopoly Here and Now (it's updated for today's economy) at
> Yahoo! Games.
>

#45003 From: "Susan" <1x2y3z@...>
Date: Wed Sep 5, 2007 7:04 pm
Subject: Re: Are my LES levels normal? Please help!!!
binzhouren2000
Send Email Send Email
 
Kristen, those aren't the pressure numbers.  They just show how
far down your LES was located on the manometry sensors.  Pressure
is expressed as millimeters of mercury (mm Hg).  Normal LES
pressure is about 14 to 34 mm Hg.

Susan

----- Original Message -----
From: "Kristen" <contessakay@...>
To: <achalasia@yahoogroups.com>
Sent: Wednesday, September 05, 2007 9:52 AM
Subject: [achalasia] Are my LES levels normal? Please help!!!


> Some of you suggested I try to find out what the numbers on my
> LES
> are. I got out copies of my motility tests and have no idea
> what
> the 'normal' LES levels are supposed to be, or what they read
> for
> achalasia. Could someone please help me? I don't know exactly
> how to
> read it, but here is what the report says:
>
> LES Proximal - 38.0 cm
> Distal - 42.0 cm
> Total LES Length - 4.0 cm
> Intra-abdominal length - 3.0 cm
>
> Does this mean anything to anyone? Thanks so much!!!
> Kristen in Ohio

#45005 From: Isabella Arnold <arnoldisabella@...>
Date: Wed Sep 5, 2007 7:51 pm
Subject: Re: Another e-mail... renewed doubts...
arnoldisabella
Send Email Send Email
 
Hi Tracy,
 
Thanks so much! I would tell a friend to go for the -ectomy, so I'll try to tell myself too, definitely for the last time. You've said so many things that make sense. You didn't just give one reason, you gave plenty.
 
Romeo just got home and also told me to stop doubting and to just go for it. He didn't know about the post of Dr. Schulz untill about 15 minutes ago.
 
Wish it were tomorrow night instead of tonight...
 
Love,
Isabella

tracylb@... wrote:
To answer your questions: "Why am I do this to myself? Why do I keep
having these doubts and why do I keep running around in this crazy
little circle?", I have two responses:

1. You are NORMAL.
2. Human nature

See my previous response to your earlier "doubting yourself" note for
my thoughts.
Again, only you can make this decision, and we will ALL support you no
matter what that decision is. Unfortunately there is no easy answer,
and there is no way to know the right answer or take away your fear of
the unknown.
That being said, you need to put the fear aside to examine your
choices from a logical viewpoint. Realistically, you will have fear no
matter which surgery you choose. After all, surgery is surgery. The
TSE surgery runs the risk of failure, in which case you would have
an 'ectomy anyway. The 'ectomy is removing something, but it's
removing something that doesn't work to begin with, so the fact that
he says it would be too late to replace it is kind of silly in my
mind. Why would you want it back if it is causing you so much trouble
in the first place?? Personally, while I have my good days and bad
days, I am still glad to be rid of it. The past 5 months have had
challenges, but overall I am healthier for having this done, and there
is no question in my future of when the problems will occur and how
bad will they be and so forth.
SO, again, both surgeries are a big deal, and both are scary. Enough
said. Now look at the facts of both and of what you are up against,
and what you will consider success. Also think of what you have been
through and if you want to continue with the unknown, or be done with
it. Think about your family and what each surgery means to them.
Consider your confidence in the surgeons and the information you have
gathered. Don't think of the fear, think of all these other things. If
it was someone else you were giving advice to, instead of yourself,
what would you tell them????

Leaving you with things to think about,
Tracy in NY

----- Original Message -----
From: Isabella Arnold <arnoldisabella@yahoo.com>
Date: Wednesday, September 5, 2007 2:47 pm
Subject: [achalasia] Another e-mail... renewed doubts...
To: Achalasia <achalasia@yahoogroups.com>

> Dear friends,
>
> Just after I wrote the post about my decision and my doubts, I
> got a post from Dr. Schulz tonight.
>
> He still wants to perform the TSE on me. He tells me he thought
> the -ectomy would indeed be performed in the breast area and he
> tells me that indeed the neck area is less risky for reflux etc.
> He is against removing organs, as you cannot replace them later.
>
> He tells me he could try TSE and if it doesn't work we can still
> go for the -ectomy.
> I wrote him back that I then first want to know how many -
> ectomies he has performed already, as experience is of the utmost
> importance here.
>
> Guys, I know you think I am doing the right thing by going for
> the -ectomy. But why am I doubting again? I made up my mind. I am
> so scared. I will follow my heart, but does it tell me the right
> thing???
> Why am I doing this to myself? Why do I keep having these doubts
> and why do I keep running around in this crazy little circle?
>
> Love,
> Isabella
>
>
> ---------------------------------
> Boardwalk for $500? In 2007? Ha!
> Play Monopoly Here and Now (it's updated for today's economy) at
> Yahoo! Games.
>


Got a little couch potato?
Check out fun summer activities for kids.

Messages 44975 - 45005 of 68723   Oldest  |  < Older  |  Newer >  |  Newest
Add to My Yahoo!      XML What's This?

Copyright © 2010 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines NEW - Help