Achalasia

[Guest guest]

Dear ,

May I just point out a flaw in your argument? Even these experienced surgeons who have carried out procedures on hundreds of patients must have started out at some point. If they are the only doctors that anyone feels they can trust how can any other young surgeon carry on the good work?

Love from your friend in England XXX>> > Hi everyone,> > I joined this group this past January and have had my share of postings> and have read every post since, responding to many. I had a successful> Open Heller & wrap 14 years ago.> > With the sudden influx (unrelated to "reflux") of newbies posting here,> I have serious doubts as to the "claimed" 1 person out of 100,000 who> have achalasia in the U.S. Many of the older members here have quoted> the number of Myotomies their surgeons have performed, and when you take> the sum of those numbers and add that to the pre-myotomy patients, I am> certain that the number would far exceed 3,000 (300 million people> multiplied by 1/100,000.) Other than statistics I do have a point.> > There are far too many people in this country who have either been> diagnosed with achalasia, or are suffering unnecessarily with achalasia,> not as yet diagnosed, for this to remain an orphan disease in the minds> of many physicians, or more practically speaking, a disease known well> by only a handful of surgeons or gastroenterologists. Maybe some> doctors believe that with such a small number of people having this> disease, there is little point to learn about it. The numbers are> beginning to add up to far greater, and its time for the medical> community to realize that.> > It bothers me to no end to read the countless stories from newbies here> of failed dilatations or myotomies, let alone the botox treatments> (let's leave botox for the actors who really need it). There are just> too many failed procedures and surgeries for we, who suffer from this> unusual disease to accept. This must end.> > There used to be a time, before we wised up and knew better, that you> would go to any specialized surgeon for this kind of surgery (a very> long time ago), and if you were lucky it worked. We have learned> collectively that there are only a handful of surgeons in this country> who "get it." This surgery should only be performed by those doctors> who have done hundreds of these operations.> > Anyone who comes to this site better learn from reading these posts and> checking the "links" and "database" here that in order to improve your> chances of a successful operation and a return to a normal lifestyle> that you must research your surgeon. You need the most experienced> surgeons from the best hospitals. While there are exceptions to any> statement, the best or most experienced surgeons do not usually operate> at run-of-the-mill hospitals.> > If you have to travel far to get to these surgeons, and your finances> or insurance permits, then by all means, do so. We are talking about a> condition you must address three times a day, and sometimes all night. > The most important step you must take is to go to the most experienced> surgeon your circumstances will permit. The short term inconvenience> does not compare to a lifetime of suffering if you use a local, but> inexperienced surgeon. Performing a handful of myotomies doesn't> qualify. I just cringed reading the recent post of the surgeon who> performed a failed myotomy and blamed the patient for his first failure!> Nor would I, even for a moment, go back to the same surgeon if the> myotomy failed and I needed another one.> > I appreciate the time all of you have spent, newbies and my friends, to> post here. We all learn from each other, regardless of how long we have> been here. For those of you who suffer from the "heart attack" type> spasms, there have been numerous posts here over the years describing> how to deal with it. As always, what works for one person may not for> another, but there should be something for everyone.> > A special note of appreciation to those of us with Achalasia, with no> present issues, who continue to help and support the new people here,> and especially to those people who have had the Heller and immediately> report back as to how they are doing, and what to expect. This is one> great community!> > >

[Guest guest]

Dear Ann,

Its not so much as a "flaw" in my argument, but what you pointed out, of course, is correct, and as I was writing my note last night I thought about it. I could have gotten into what you were saying ("how can a surgeon become experienced, without getting the experience,") but, in the end, felt that it was going way beyond the scope of the purpose of my writing (and I am already far too "wordy.")

Now between us buddies, what I would have said was that doctors must train under the surgeons who regularly perform this operation, and learn the techniques that way, and perform the surgery under the care and guidance of the more experienced surgeons, until their skills can be perfected. No surgeon for this type of surgery should learn the techniques with the first hundred or so patients being the "guinea pigs."

My daughter, who is an orthopaedic surgeon, chief resident now at age 31, still does not operate without an attending surgeon. While she is first learns in a more academic setting, the real learning takes place in the operating room under the strict supervision of an experienced surgeon.

Thank you for "forcing" me to complete the open part of that post.

Love,

> >> >> > Hi everyone,> >> > I joined this group this past January and have had my share of> postings> > and have read every post since, responding to many. I had a successful> > Open Heller & wrap 14 years ago.> >> > With the sudden influx (unrelated to "reflux") of newbies posting> here,> > I have serious doubts as to the "claimed" 1 person out of 100,000 who> > have achalasia in the U.S. Many of the older members here have quoted> > the number of Myotomies their surgeons have performed, and when you> take> > the sum of those numbers and add that to the pre-myotomy patients, I> am> > certain that the number would far exceed 3,000 (300 million people> > multiplied by 1/100,000.) Other than statistics I do have a point.> >> > There are far too many people in this country who have either been> > diagnosed with achalasia, or are suffering unnecessarily with> achalasia,> > not as yet diagnosed, for this to remain an orphan disease in the> minds> > of many physicians, or more practically speaking, a disease known well> > by only a handful of surgeons or gastroenterologists. Maybe some> > doctors believe that with such a small number of people having this> > disease, there is little point to learn about it. The numbers are> > beginning to add up to far greater, and its time for the medical> > community to realize that.> >> > It bothers me to no end to read the countless stories from newbies> here> > of failed dilatations or myotomies, let alone the botox treatments> > (let's leave botox for the actors who really need it). There are just> > too many failed procedures and surgeries for we, who suffer from this> > unusual disease to accept. This must end.> >> > There used to be a time, before we wised up and knew better, that you> > would go to any specialized surgeon for this kind of surgery (a very> > long time ago), and if you were lucky it worked. We have learned> > collectively that there are only a handful of surgeons in this country> > who "get it." This surgery should only be performed by those doctors> > who have done hundreds of these operations.> >> > Anyone who comes to this site better learn from reading these posts> and> > checking the "links" and "database" here that in order to improve your> > chances of a successful operation and a return to a normal lifestyle> > that you must research your surgeon. You need the most experienced> > surgeons from the best hospitals. While there are exceptions to any> > statement, the best or most experienced surgeons do not usually> operate> > at run-of-the-mill hospitals.> >> > If you have to travel far to get to these surgeons, and your finances> > or insurance permits, then by all means, do so. We are talking about a> > condition you must address three times a day, and sometimes all night.> > The most important step you must take is to go to the most experienced> > surgeon your circumstances will permit. The short term inconvenience> > does not compare to a lifetime of suffering if you use a local, but> > inexperienced surgeon. Performing a handful of myotomies doesn't> > qualify. I just cringed reading the recent post of the surgeon who> > performed a failed myotomy and blamed the patient for his first> failure!> > Nor would I, even for a moment, go back to the same surgeon if the> > myotomy failed and I needed another one.> >> > I appreciate the time all of you have spent, newbies and my friends,> to> > post here. We all learn from each other, regardless of how long we> have> > been here. For those of you who suffer from the "heart attack" type> > spasms, there have been numerous posts here over the years describing> > how to deal with it. As always, what works for one person may not for> > another, but there should be something for everyone.> >> > A special note of appreciation to those of us with Achalasia, with no> > present issues, who continue to help and support the new people here,> > and especially to those people who have had the Heller and immediately> > report back as to how they are doing, and what to expect. This is one> > great community!> >> > > >>

[Guest guest]

Hello Ann,

Thanks so much for responding, yes dear friend we are in the same boat, how strange a situation it is. I feel fine, and mostly live with it. I NEVER knew that I HAd to do something about it, what a shame that no one ever told me this before. I'm scared now, wondering what they will find.

Well, I'm with you, ship-mate, and I hope that you find a good surgeon, they say that's of the upmost importance. Do you have someone in mind over there?? That you truly trust with this?? I hope and pray that you do.

What age range are you in??? I am 48, and started the beginings of A, at the age of 30. Just out of the blue, one day, it seemed.

I had many tests back then, and many dilations, which helped only slightly, for short periods of time, so that's why I gave it up and decided to cope. The surgery was NEVER mentioned to me. Wondering why.

Take care, and stay in touch, I'm here for you!

Jules