Open Discussion on Primary Esophageal Alchalasia
Posted , 11 users are following.
This discussion is primarily focused on those who are living with Alchalasia. Even though Alchalasia can occur anywhere along the GI tract, for this discussion we will focus on primary esophageal achalasia.
Esophageal achalasia is an esophageal motility disorder, also thought to be an autoimmune anomaly involving the smooth muscle of the esophagus and the lower esophageal sphincter (LES.) It is characterized by incomplete LES relaxation, increased LES tone, and lack of peristalsis of the esophagus (inability to move food down the esophagus.) The failure of these smooth muscle fibers to relax, causes the LES to remain closed and failure to open when needed, (such as when swallowing.) This particular function is dependent on how it and the brain works in unison. People with achalasia will often have trouble swallowing or feel like food is stuck in their throat. This is also known as dysphagia. This symptom can cause coughing and raises the risk of nocturnal aspiration, the inhaling or choking on food and fluids. Many who aspirate may also develop what's called aspiration pneumonia, other bacterial infections, lung abscesses and scaring if aspiration continues for an extended period of time. The incidence of death due to asphyxiation has occurred but is relatively rare. Other symptoms one may experience is pain or discomfort in the chest that can radiate to the jaw. Hence, often mimicking the symptoms of a heart attack. Weight loss is common due to one avoiding food so as to avoid the symptoms they experience. Others may have regurgitation or "back-flow" after eating. But, this may be the result of other GI conditions such as GERD (Gastro Esophageal Reflux Disease.)
Diagnosis is reached with symptoms presented, esophageal manometry, barium swallow radiographic studies and endoscopy. If your GI Dr. or surgeon doesn't feel the need to do a manometry, as many dont, I would see another Dr. Manometry is one of the most reliable and diagnostic tools there is in the diagnoses of Alchalasia.
Various treatments are available, although none cures the condition. Certain medications or Botox may be used in some cases, but more permanent relief is brought by esophageal dilatation and surgery such as Heller Myotomy, POEM, and different surgical techniques known as a Fundoplications. The type of Fundoplication that you have is extremely important and should be based off of the type and stage of Alchalasia that you have and NOT that of what a particular surgeon may hold his expertise in doing. I can't stress enough the importance of doing your homework, researching this disease, reading about other's experience, and getting 2, even 3 different opinions from both GI specialists and surgeons alike. Again, one surgeon might propose a specific type of Fundoplication because that's what he/she does the most. It doesn't necessarily mean that it's the correct one for you. That's why I suggest 2nd opinions to see what you feel is best for you. Surgery can often be put off for awhile because you may be a candidate for less invasive procedures as mentioned. I.e. a pneumatic dilatation, Botox injections, the use of medications such as nitrates and CCBs (Calcium Chanel Blockers.) Even though these treatments have many disadvantages, the most being short active, they are other options nonetheless that many may prefer initially. If your surgeon tells you that you aren't a candidate for anything but surgery, that's just another good reason to see a second one.
Another procedure opposed to a Myotomy is a POEM. But, this is somewhat new and not every medical institution performs them. And not unlike all the rest, they too have their disadvantages. I personally chose to have Botox injections because I wasn't in a position to undergo surgery at the time. So far, several months out, I have had no symptoms from my Alchalasia whatsoever. And I was aspirating almost nightly, along with developing several episodes of aspiration pneumonia which landed me in the hospital a number of times.
I hope that everyone will tell their story. What treatment that may or may not have helped them, foods and beverages found through trial and error that either helped or hindered them and anything else that may help someone else out there who is afraid and suffering alone. This is a fairly rare disease and it's difficult at times finding someone to confide in and swap notes with. You never know, something you say may prove to be music to other's ears.
Stay Well,
DWJRN
2 likes, 177 replies
AlanJM DJ-RN
Posted
Thank you for starting this thread. Something that people might find helpful is 'A Patient's Guide to Achalasia' that can be downloaded from the website of the Oesophageal Patients Association under The Oesophagus, and Achalasia. I helped to write this, not as a sufferer, but drawing on patient support meetings.
People do vary quite widely in the degree of suffering, and the extent to which different treatments are successful. The best thing seems to be to see an experienced specialist doctor and to have a definitive treatment based on careful testing, as early as possible.
DJ-RN AlanJM
Posted
DJ-RN AlanJM
Posted
Thank you Alan for the kind words. I just hope that we all can learn something from each other and not feel afraid and alone. There are many of us out there with some anomaly of this disease and what they have to say may be what another has been hoping to hear. Your site is excellent. Your dedication to this disease is unsurpassed. I can tell that your heart is in it. As is mine. There's a lot of information out there about Alchalasia in one form or another. Finding it can prove to be difficult at times. That's why I wanted to do what I could and write this thread. If it just helps one person, it would be worth it.
I think this site could loosen up on some of the moderation however. I feel that it's our right to publish other websites as we like.
Thanks again for the info. I too downloaded that page and found it very helpful. As a Cardio Thoracic Nurse Specialist I can tell you that it, and what you write is excellent material.
DWJRN
1blindmice AlanJM
Posted
Stop advertising that "guide". It has misrepresentations in it and it has not been updated to the new information that has been found out of about achalasia. Such as the FACT that stress does not cause it.
AlanJM 1blindmice
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DJ-RN 1blindmice
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DJ-RN 1blindmice
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DJ-RN 1blindmice
Posted
1blindmice,
I don't think that Alan was necessarily advertising that guide or claiming that it was the best to read. I think it was suggested as another site/tool for people to look at who are living with Alchalasia. I read it and found it quiet interesting and informative. We are all here for all the same reasons. And those would include learning as much as we can about this disease and Redding other's experiences with different tests, procedures and surgeries.
DWJRN
1blindmice DJ-RN
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AlanJM 1blindmice
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DJ-RN AlanJM
Posted
Sometimes when there is no known etiology about a disease, speculation is all that you have. Do you know if any medications such as opiates (Percocet) has been known to cause Alchalasia? I take 2 every 8 hours for severe osteoporosis pain, etc. and was just curious if you had ever heard this? My Dr. said they wouldn't be the cause. But?
1blindmice AlanJM
Posted
I sent you another direct response. I don't want to "clog" up this forum with our disagreement, so if it's possible to remove our post, please do so.
DJ-RN 1blindmice
Posted
I don't know which post you are talking about. This is my thread that I recently just started. I don't know how to delete a post anyway. I would just suggest not leaving a post at all. That way you want have to worry about it.
1blindmice DJ-RN
Posted
Robert13450 1blindmice
Posted
1blindmice- do you read minds? That is something I think about on a daily basis . Especially now that I have lost trust in my doctor the fear is taking over. I actually said to my wife that if this past surgery didn't work I would most likely end up with a tube. I wouldn't wish that on anyone and I don't know how I would handle it . Hope I never have to. It just saddens me to see the lack of caring from everyone doctors and nurses . Most nurses don't know anything about the disease , let me clarify before I get yelled at. Lol inNew York they are not very up to date. How are you feeling?
AAR20 DJ-RN
Posted
Hello.
I am in the middle of a possible alchalasia diagnosis.
I have been having issues with a sore throat for over 5 weeks and was put on steroids because the ER Dr I saw said I had pharyngitis. Long story short, I was on the steroids then got the stomach flu in the middle of taking them, then finished them up. Still sore throat would come and go. So I go back to ER they put me on a 12 day steroid taper. I never felt worse in my life! And this is when my esophagus really started hurting (at first I thought it was my thyroid) but before it was just a random sore throat, after taking steroids it is what feels like knot in throat and food getting stuck. I've done a swallow test and they can see where food is getting stuck. Had thyroid ultrasound and it is fine.
I'm just curious about your statement of steroid induced alchalsia?? Maybe this is what has happened to me!
DJ-RN Robert13450
Posted
DJ-RN AAR20
Posted
I was on steroids for several years and they tore up my entire musculoskeletal system. Left me in severe pain all over. I don't know about steroids and Alchalasia. I know that it's been suggested that opiates can cause some stages of Alchalasia. Sounds like they were treating you with steroids either for inflammatory problems or acid reflux that could have caused your sore throats.
DJ-RN 1blindmice
Posted
You know that's a good question. Honestly I don't think so. My Alchalasia is more about causing me to aspirate at sleep and getting aspiration pneumonia over and over. I've gained weight cause all my food collects in an esophagus that's basically turned into a second stomach. So, I keep eating cause my stomach is never
Full at one given time and signals the brain to tell me I'm full. I'm 5-10" and should weigh about 170. I've gained 15 pounds.