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
kaseymae DJ-RN
Posted
DJ-RN kaseymae
Posted
DJ
kaseymae DJ-RN
Posted
DJ-RN kaseymae
Posted
Hun, I wish that I could elaborate more on the Myotomy. I haven't had one yet but the surgeon suggested it along with a Dor Fundoplication or a POEM. I too was told that the Cleveland Clinic was one of the best places one could go to. There, or either Northwestern in Chicago or Baltimore. I'm sorry you're having such a tough time. I too was misdiagnosed for over 15 years. Janeeyre or Alan on my thread may be able to elaboarate more on the Myotomy. I don't think that I would be telling you anything that you probably don't already know since I personally have yet to have one. Please let me know what they say and how you're doing. I do know that many people go on to develop acid reflux/GERD if they don't already have it. But, not always. Are they planning on doing a Fundoplication on you as well?
DJRN
Cowgirluc DJ-RN
Posted
I'm having my done in Portland Oregon at the Oregon Health Science University. Dr. Dolan is the surgeon and said he performs this procedure about 37time a month. He is the Professor there . Wish me luck cause I'm going down hill not getting to eat much. No chocolate for me !
Robert13450 Cowgirluc
Posted
Hi Cowgirl, are you having a POEM procedure done? It seems like a very large number per month . It doesn't seem like that many would even be diagnosed every month. Do you have reflux or Achalasia?
Believe me I'm a huge chocolate fan and candy and I love Italian food but the sauce kills me. I think Dr Stravropoulos in Mineola has the most POEM procedures performed in the country , he is the doctor who brought this procedure over from ska pan in 2008 and he has over 400 done in a area of over 10 million people . This would give your doctor that much in one year. Please check with him again and make sure it's not 37total . Which is fine but this is a pretty new procedure for a rare disease and doctors all over the country want in on this. My first surgeon lied to me about how many he had done. He told me 65 when in fact I found out after it was 30-25. They don't want to say the true number in fear you won't go ahead. Look I'm just telling it the way I know it to be. Your doctor could be 100% right, either way I hope you have a successful procedure with no complications. It seems there are a few people on here upset with me for telling what I know . I to have been misdiagnosed for 7 years and had dozens of tests many of which were very unpleasant and I keep records of everything I've been told and everything done to me. So, I will try to help people whenever I think something may be a little off . I hope to take it that way in as I was only trying to help and wish you nothing but the best. Good luck
Cowgirluc Robert13450
Posted
Thank you and I'm not sure on the amount in time frame. I don't remember things good anymore and get nervous. I dont have acid reflux at all . I do have achalsia #3with bad spazms. I also have had test done many years ago I had this pain . I went through all kinds test for my gallbladder all that yucky sh*t . Well they take the gallbladder which I guess gave Mr somewhat relief for awhile but had hard time eating episodes that send me to hospital for weeks at different times only to go home with no answers and very weak! So now it has came back very bad and will not go away. I'm sure it has affected my very lower spincher also. Thanks for the luck 😊
DJ-RN Cowgirluc
Posted
DJRN
DJ-RN Robert13450
Posted
That number seems awfully high to me. I would ask again for clarification. Only one in 100,000 are diagnosed with Alchalasia. I wish you the BEST of luck! 😊
DJRN
DJ-RN Cowgirluc
Posted
Cowgirl, I wish you only the best. I'm sure you are in the best of hands. That does however seem like a lot of procedures per month. Maybe he meant annually?
DJRN
Janeeyre DJ-RN
Posted
donna15310 Janeeyre
Posted
DJ-RN Janeeyre
Posted
Not me. I forget what I am but I don't think it's B.
DJRN
DJ-RN
Posted
I just wanted to tell everyone GREAT NEWS FOR ME. As most of you already know, the main symptoms that I've had living with stage 3 spastic Alchalasia has been aspirating. Even with the head of my bed elevated I would still have nocturnal aspiration at least 5 nights out of 7. I started to sleep on 6 to 8 pillows and did better but often would slide off of them in my sleep and aspirate. Countless bouts of aspiration pneumonia over the years. I went out and bought an adjustable bed and new hybrid mattress. The head and feet will raise or lower with a remote control. Since I bought it and keeping it up about 45 degrees, I have not aspirated once in 10 nights straight. My surgeon wanted to do a Heller Myotomy with a Dor Fundoplication. I went the Botox route instead. I never thought about buying an adjustable bed. If I had, I could have prevented countless nights of aspirating. Even though it still takes up to 48 hours for food to clear the LES and go to my stomach, I'm so happy that I'm not almost choking to death now. I'm about to have a repeat of Botox as my Dr. wants another shot at it. But, as long as I don't aspirate and overeat, I'm not going to have to have neither a Myotomy or a Fundoplication it seems. I'm so thrilled that a bit over two thousand dollar bed has helped me. My surgeon told me as long as I don't aspirate there's no need for that surgery. I am very blessed and happy. I feel as though God cured me in his own way. All because of a new bed. God is good!
DJRN
Janeeyre DJ-RN
Posted
I hope for the best for you, Doug. You certainly deserve a break from all that aspirating. Perhaps between the adjustable bed and the next round of Botox you'll get a new lease on life.
DJ-RN Janeeyre
Posted
Thank you hun. As long as I don't aspirate I want have surgery. And it appears as though I'm just going to have to learn how to eat in a totally different way, when to eat and the best things that will get through that LES as quick as posssible. You never know though, this disease can progress and perhaps start to cause other symptoms later on. But I've had it for 15 years and there's a good chance that its run the course that it's going to with me. I'll remain openly cautious. Thanks for the sweet msg.
Doug
neil32387 DJ-RN
Posted
DJ-RN neil32387
Posted
DJ