Achalasia is a relatively rare disorder whose principal symptom is the inability to easily swallow food through the esophagus into the stomach.
This page is not intended to provide authoritative information on the disorder, but instead to serve as a pointer to useful resources on the web for other sufferers. The page is organized as a single page mostly as a trap for search engines in the hope that here you will find your way quickly to the information you need to make decisions about your treatment options.
If you find broken links or any errors of fact or presentation in this page, please notify me via email and I will attempt to repair them.
There is an active mailing list hosted by Yahoo Groups. Membership is open to anyone. The link above leads to the main page for the list. The list offers support to achalasiacs and their loved ones. At the list site are archives of the list discussions as well as some information the group has collected.
Meetup is a way for achalasia sufferers to connect with others in their area living with the disease. Members in the same geographic location get together periodically in the real world to share comraderie with others who understand their affliction.
If you know of interesting sites on the web related to achalasia that are not listed here, please send them to me and I will add them. Likewise if you find that any of these links no longer function, let me know.
User beware. I don't certify any of these external sites to be correct or reputable or anything else. I provide the links here purely as a service of consolidation for other achalasia sufferers. Don't blame me if somebody out there lies to you.
That said, if you find stuff on one of these sites that you know to be false or misleading or otherwise "wrong", drop me a note and I'll add some annotation to that effect!
The cause of the disorder is unknown. There are informal theories relating to various factors like problems with the peristaltic motion of the esophageal muscle, stricture at the point where the esophagus passes through the diaphragm (the Lower Esophageal Sphincter, or LES), but no conclusive case has been made for any one physiological determinant.
Diagnosis is made through the use of endoscopic examination of the esophagus and stomach, through manometry which measures the pressure created during swallowing, and through X-ray studies using barium swallow. The X-ray in particular has a characteristic appearance with constriction at the diaphragm and distension of the esophagus above. This is usually referred to as a "bird beak" appearance.
There is no known cure.
Treatment options include balloon dilation of the LES, injection of botox into the muscle of the LES. Both of these options are considered temporary at best. Dilation comes with the risk of perforation of the esophagus. Either option can result in scar tissue that could make later surgery more difficult
The basic surgical option is the Heller Myotomy which is the surgical severing of the LES muscle sometimes accompanied by a wrap of tissue around the site in an effort to prevent stomach acid from coming up through the now unobstructed opening between stomach and esophagus. Again, the myotomy is not a cure. There are records of people having this procedure multiple times, and also of people whose symptoms returned or were only partially ameliorated by the procedure. Heller myotomies are generally conducted laproscopically.
A more extreme surgical option is the esophagectomy in which the esophagus is surgically removed and replaced either by pulling some of the stomach up to attach to the throat directly, or by a section of intestine removed from the patient for the purpose.
I first started experiencing swallowing problems in August of 2001. I found that food would not go down into my stomach and I'd have to regurgitate it before I would be able to eat or drink further.
I saw my doctor (Dr. Lawrence Greenblatt, M.D. at that time) who referred me to a gastroenterologist (Dr. V. Mohan, M.D.). Dr. Mohan performed an endoscopic exam of my esophagus and stomach and found nothing obviously wrong. I then underwent manometry which showed limited motility in my esophagus. Finally I did a barium swallow which showed the characteristic bird's mouth constriction of the lower esophagus.
During the endoscopy, Dr. Mohan performed a baloon dilation of my LES. This seemed to ease my symptoms somewhat, but the relief was short-lived and within a few weeks my symptoms were back.
Due to the risks associated with further dilations, I ruled out having any more. Botox injections seem like an absurd way to treat my body. I'm still able to eat enough to maintain my weight and nutrition, so I can't justify the surgery at this point
In general I'm completely disgusted with the available treatment options. They are what we call in the programming business "kluges" or clumsy attempts to solve a problem that you don't understand sufficiently well to solve elegantly.
I have attempted Homeopathic treatment under Dr. Robert M. Schore, M.D.. Dr. Schore expressed optimism about treating my achalasia with homeopathic remedies. Unfortunately none of the homeopathic remedies we have tried have had any result beyond that which can be explained by normal week-to-week variations in my difficulty swallowing. I'm not currently continuing that treatment, but I don't rule out the possibility of trying again.
My current doctor (Dr. James Yee, M.D.) has suggested trying acid reflux medication as a shot in the dark in the event that my swallowing dysfunction is caused by reflux that I am otherwise not troubled by. He also suggested that acupuncture would be worth trying. I haven't pursued either of these options as yet (October 2003)
I am living with achalasia. I have found that some foods are harder to swallow than others so I avoid some things as a result (french fries, milk). Mostly I eat what I want and accompany it with large quantities of warm water. It seems as though cold food or liquids have a constricting effect. I have become adept at moving food up out of my esophagus and into my mouth where I can sometimes re-chew a blocking chunk into a form that will go down. Kind of like a cow chewing its cud. Sigh. When I cannot get food to go down I excuse myself from the table and spit the food into the toilet. This makes dining out much less pleasant than it once was. I always know where the restroom is before I start eating. Getting large quantities of warm water from restaurant servers can be something of a trick too. Warm doesn't have an established meaning when it comes to beverages, I've found.
As a result of my achalasia, I have an unusual knowledge of the state of food as it leaves the mouth and begins its trip to my stomach. Situations that frequently arise (so to speak) for me are, liquid forming a foam in my esophagus that will not pass into my stomach. Frequently food and liquid will join into a sort of gooey phlegmy mass which again doesn't want to go down. Fortunately stomach acid does not enter into any of this so the substances I'm dealing with consist only of chewed food and saliva. It's not as gross as it could be.
I don't generally experience pain as part of my swallowing problems. Many achalasia sufferers suffer from esophageal spasms, sort of a muscle cramp that runs through the esophagus. I have experienced this on rare occasions, and it is no fun. Fortunately for me it has been relatively rare (and seems to be stress related for me).
When I'm not eating I feel perfectly normal. I have lost about 40 pounds since my achalasia started, but my weight has been stable (210 or so (I'm 6 feet, 2 inches tall)) for about a year. I don't plan to pursue any of the standard achalasia "treatments" because at this point I consider them worse than the disease itself. There is some danger that frequent stretching of the esophagus can make future surgery more difficult or impossible, but I'm holding out hope that some more elegant treatment will be found before I get to that point.
This page is maintained by Jeff Youngstrom
Feel free to contact me by email if you have any questions or comments about this page.