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
Janeeyre DJ-RN
Posted
I don't know what I have and don't have yet. Will undergo another endoscopy tomorrow morning. Meanwhile, I'm amusing myself by continuing to read the papers on achalasia in the medical journals [perhaps I'm a glutton for punishment]. Some things appear to be coming a full circle. In one place I found the interesting information that "Already in 1674, Sir Thomas Willis successfully dilated the LES in a patient with achalasia using a cork-tipped whalebone. To date, this approach has evolved to pneumatic dilation (PD)?." 343 years later, a paper appeared in "Medicine" just last February with the title "Laparoscopic Heller myotomy is not superior to pneumatic dilation in the management of primary achalasia: Conclusions of a systematic review and meta-analysis of randomized controlled trials".
?This was the conclusion of some Chinese doctors who investigated five trials, involving 498 participants. The opinion was "Laparoscopic Heller myotomy is not superior to pneumatic dilation in the management of primary achalasia: Conclusions of a systematic review and meta-analysis of randomized controlled trials?".
?But I suppose "primary" is the operative word here.
neil32387 Janeeyre
Posted
It is interesting how treatment hasn't really changed for centuries. Testament to the challenges we face; but maybe also due to the rarity of the condition. Hopefully not going off subject, but I have often thought about the possibility of applying strong nitrates during dilation, to stretch the LES with less resistance (which might be less invasive).. I will mention it to my doc; but I expect will remain in the possible good ideas box!
Good luck and good karma for your tests.N
DJ-RN neil32387
Posted
You're right! If you are a candidate for pneumatic dilatation if I were you I would start with the less invasive procedures first. I'm about to have my 2nd Botox. Unfortunately it doesn't last but about 6 months but I'd rather have it than a Myotomy, POEM Or any of the Fundoplications that are available. Who knows what they will come up with during the two years that you may be symptom free with your dilatation. It's really just what one personally prefers or has to do according to their Alchalasia and the degree of it. I was told by two surgeons that I need either a POEM or Heller Myotomy with a Dor Fundo. I want have it done until I absolutely have to. I have stage 3 spastic Alchalasia which many say is the most difficult to treat. But, I'm fortunate in that it doesn't interfere with my eating habits, etc. I just have esophageal spasms that are intense but my sublingual nitroglycerin takes care of within minuets. However, I have SEVERE aspiration that has caused several bouts of aspiration pneumonia and most likely damage to my trachea and/or lungs. I want know the extent till after my Bronchoscope. I truly wish you well and hope that whichever route you take brings you nothing but relief. Again, I'm glad you are considering less invasive first. Many jump into surgery because of two reasons. First, they believe what their surgeon tells them and don't get a second even a third opinion, and two, they haven't done their homework to learn that there are indeed other options at times other than surgery.
DJRN
Janeeyre neil32387
Posted
Cowgirluc DJ-RN
Posted
I had heard that to many botox shots will cause scar tissue. I neleive it cause my other type docs well my pain management doc said not to get hots in like my joints cause of scar tissue so I'm sure your inside are more tense than ligiments
neil32387 Janeeyre
Posted
Warmest Regards, and healthy karma,
N
Janeeyre neil32387
Posted
Thanks for your response. I get it now. Nitroglycerin. Didn't I read that it's used for the pain of esophageal spasms as well as angina?
neil32387 Janeeyre
Posted
As you said earlier, research is not a bad way to fill the gaps between treatments..
Hope the test goes/went well.
N
DJ-RN Janeeyre
Posted
It is used for both angina and esophageal spasms. Gives you a horrible headache but that only lasts about 10 to 15 min for most. In fact, its one way of knowing your tablets haven't expired. That's why they are kept in darkened bottles/containers too. 😊
DJ-RN Cowgirluc
Posted
In some cases they can. I have seen 3 GI specialists and two prominent surgeons. If I don't go out of state to have a POEM done, I've got a great surgeon here in town that will be doing my Myotomy and Dor Fundo. I asked him if my having Botox would compromise the surgery he has offered me and he said absolutely not in your case. Sometimes GI docs use it too much and he said it could potentially cause the surgery to last a bit longer, but again, was ok if I had it done up to 3 to 4 times. But, everyone needs to ask his/her own surgeon and get their own direct opinion. Perhaps in some types of Alchalasia it may not be a good idea. That I don't know. Everyone is different.
DJ-RN Cowgirluc
Posted
Btw, Cowgirl, much literature does state that it "could" compromise surgery down the road. I would suggest that everyone considering it ask his/her own surgeon and see what they say. :-)
DJ
DJ-RN neil32387
Posted
Good point! The thing about all of what we read and share amongst ourselves is greatly individualized. What one experiences doesn't mean that everyone will. And that's important to understand because you don't want to dismiss something which might prove to be beneficial just because someone else had a poor reaction to it. And visa versa. Just because one does great with any treatment or procedure doesn't necessarily mean that you will. This disease seems to have a mind of its own and nothing is cut and dry by any means.
DJ
AlanJM neil32387
Posted
Also Buscopan for spasms, but I think that calcium channel blockers might work differently. I do not know enough about themn to say.
Robert13450 AlanJM
Posted
Hello Alan, calcium channel blockers were the first thing they tried . Just a quick note: when I went to see my doctor for my first follow up after my procedure he was nice enough to inform me at this time that this was not a permanent fix much more it would need to be done most likely on a annual basis. This mans ego is as big as I don't know what I've never run across a doctor like this before. He doesn't give a damn about helping people he wants to be famous and needs the numbers to get there. He makes me sick to my stomach. I'm sorry but you are very knowledgeable and I thought would understand but legally they tell me it would cost to much to take him to trial and would end up his word against mine so they don't want to take that chance. So, I will file with American medical association and anywhere else that can hurt him . Thanks for hearing me out.
Bob
AlanJM Robert13450
Posted
That's bad news isn't it!
The important thing for you is to get some treatment that will hopefully last as long as possible. You do need to be able to trust your doctor.
Pasha333 Robert13450
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I am curious on what he has actually done as an annual repeat is very odd!
Janeeyre Robert13450
Posted
DJ-RN AlanJM
Posted
CCB's are antagonists used primarily to treat and prevent several things. Especially hypertension (systolic for the most,) altered heart rates, vasospasm and chest pain caused by angina as well as the esophageal muscle. They along with nitrates both have a relaxant effect on the LES muscle and decrease LES pressure but they don't improve LES relaxation to a desirable level. This line of treatment is usually used with those who have type 1 and 2 Alchalasia, not type 3 like I have. They are prescribed mostly for the elderly who have contraindications to either pneumatic dilatation or surgery or acts as a temporary means while other treatments are being considered. Some studies suggest that more respond to CCB's than nitrates. One study on medication treatments for Alchalasia stated that the sublingual CCB Nifedipine significantly improved the outcome in 75% of people with mild to moderate Alchalasia. I asked a colleague/friend who is a thoracic surgeon and he told me that was farther from being factual. In fact, it is said through many controlled clinical trials and studies that nitrates and CCB's only help but 10% of those suffering with Alchalasia and lasted just a few months. Not unlike that of Botox. There are many untoward side effects with both classes of these medications as well. And, the benefits of being on them have to outweigh the risks like any drug. It was classically considered that surgical Myotomy provided greater benefit than either Botox or pneumatic dilatation in those who fail medical management of this disease. A randomized controlled study found pneumatic Dilatation to be non-inferior to a Heller's Myotomy. There are tons of information on Alchalasia and all the treatments that are available at our fingertips. But, each of us has to be extremely careful and consider cautiously what we are reading. I've found by joining this site and starting this thread has brought forth GREAT advice from all of you, and has been a tremendous learning tool. Sadly though, there are so many of you out there who are really having a tough time living with this disease. But, your stories and conditions have helped me and I'm certain they've touched many others as well. That I thank you for. This being the rare a disease that it is makes it difficult for one newly diagnosed with it to have someone to swap notes with and to have a shoulder to lean on during tough and worrisome times. All of us want the same thing. We want to learn as much as we can from one another, understand the many different directions this disease can take us and to offer what knowledge we may hold within that may indeed be music to another's ears.
Stay Well!
DJRN
Janeeyre
Posted
Sorry, Robert, that wasn't you. You had the plication.
DJ-RN Janeeyre
Posted
How are you feeling? Haven't heard from you in a while?
DJ-RN Robert13450
Posted
Robert, I'm doing the same. I sought legal advice and now have an attorney. I've been aspirating for over 15 years and have come close to choking to death countless times. Over a 15 year period I've had 6 dilatations. Not of the LES. My GI doc and surgeon told me that I shouldn't have ever had one dilitation moreover 6 of them. They misdiagnosed me and with all of these dilatations has simply caused my esophagus to grow larger than my stomach. It acts as a large reservoir. I can eat 3 Big Macs a large fry and two milkshakes and still be hungry. It takes 24 to 48 hours for food to finally squeeze through the LES. So, I'm continuously being fed 24/7. My weight went from 165 to 185 now. After I eat, since food doesn't go to the stomach until days later my stomach doesn't signal the brain or vice versa telling me that I'm full. My attorney is awaiting me to have a Bronchoscope to see if damage has been done to my lungs. The doc who did all of my dilatations and EUG's never noticed my huge hypertensive LES. Nor when he scoped me for dilatations did he pay any attention to the resistance he had to have felt going down. My surgeon said he couldn't believe a trained eye missed my Alchalasia diagnosis after all of these years. I'll let you know what comes out of this. Most likely it will be settled out of court.
DJRN
Robert13450 Pasha333
Posted
Hello Carol, he actually did a plication via an overstitch. Using a newly invented contraption during a endoscopic procedure but under general he did basically a partial wrap where he stretched my stomach wall up and sutures ere used to connect it to my esophagus. I have explained only two doctors do this in the US my doctor and one in California who has done only 5. They both may have done more procedures but not inpatients with Achalasia. I feel like I took part in a FDA trial but without my consent or knowledge. Retry damn sneaky if you ask me. I know what you're saying Carol but I'm not letting him get off free and to do this again . It's just not right. I already have an appointment with another gastro that did my POEM . If he tells me i will end up with cancer and everything else I have been told I'll believe him. He didn't have enough procedures so i picked the wrong guy. My old dr has integrity. If Achalasia as my only issue here it wouldn't be so bad but I'm fighting, Emphysema, RSD, 7 spine surgeries with rods holding my spine together, i spinal cord stim that now doesn't work after this last nightmare.
When a doctor stands there and brags about having to fly all over America and Europe ending up in China teaching other doctors how to perform this procedure and tells you how good he is and it's like second nature to him, would you not think he had done so many he could do it in his sleep?? No he was a virgin !! I was the lab rat.
Janeeyre DJ-RN
Posted
I am okay. The esophagus was stretched again. Now I must wait and see what will become of me--and for how long. I had you in mind in mentioning the G-POEM. Maybe you're a candidate. The procedure has been seen to have worked well for patients with nausea and vomiting that has seriously affected their lives. I don't know about aspiration--but it's a possibility.
Janeeyre
Posted
DJ-RN Janeeyre
Posted
😊
Cowgirluc DJ-RN
Posted
Sorry but wow 3bih macs and Fies you should have a real sore but ,esphogus ext. I can't even eat that Mich I pick at my food so I font over stretch my esphogus more than it is . I hope you really dont eat that much with achalasia ,cause you should probably not. I was ones 188lbs and I am now 120 and working my best to keep this weight
DJ-RN Cowgirluc
Posted
You're right. I'm really watching what I eat and stick to about 1800 Cal's a day now. I should weight about 165 to 170 but in the 180's. I don't want to get heavy so I'm backing off. Ty hun!
DJRN
Cowgirluc DJ-RN
Posted
I just know when I try to eat that certain food well it dont always agree with with me I spaz out . Why I wonder how you can eat so much at a time 😊