Achalasia

[Guest guest]

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!