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
DJ-RN
Posted
I was hoping that the information I wrote would bring forth people so we can all discuss this together. People seem to be all over the place and it's very difficult following them here and there.
donna15310 DJ-RN
Posted
This has been an excellent Forum to share and discuss Achalasia. I was diagnosed in June 2016; 100% diagnosis, of Achalasia type 1. My esophagus is paralyzed, finished. No movement at all. Had a Heller Myotomy & Fundoplication surgery done on Nov. 3rd. Had an endoscopy and ballon dilation done on March 1st. There is nothing that can be done for the esophagus, and so the focus is on the esophageal sphincter muscle. There is some concern, that even after the surgery and the dilation, that there is 'delaying' of food, etc., going down, as I can feel food/liquids 'sitting' in the esophagus. For the past week I have had pressure/pain in the center of the chest [area of the esoph. muscle], which has radiated out to the left in the chest, and around the left shoulder blade. This is not pleasant. As well, a week ago 'acid' has started coming up from the stomach, and it is 'burning.' This week I will have a Barium Swallow test to determine how food is or is not moving down through the muscle into the stomach. A Manometry has also been ordered, so that the surgeon can have the pre-surgery and post-surgery results. My surgeon is the only one who specializes in Achalasia, in the Canadian Province that I live in. I have placed my trust in him; having done some research. And like just about everyone else, I have lost a lot of weight, and eating enough nutrition and calories is a challenge. Its one step forward, one step back, some days. And 'grazing' all day is actually quite hard to do at times, as the 'choices' of what to put in the mouth are limited. I think you will find, that others 'will' share on this post that you have started. I've found the advice and information that 'Alan' from OPA posts, has been very helpful. I too, look forward to reading posts from others. thank you for starting 'this' one.
donna15310
Posted
Sorry, I noticed a typo - that is 'balloon' dilation
donna15310
Posted
DJ-RN donna15310
Posted
Donna, I'm so sorry you have been dealing with all that you have. I feel for you. Yes, Alan is super. He's helped me a lot. I aspirate almost every other night with several episodes of aspiration pneumonia. I haven't had my Dor Fundo or Myotomy yet. I'm not certain if that's what I need. Everyone seems to have their own opinions and treatments. I don't know what to do. I can't keep aspirating. My esophagus acts as a second stomach. I had Botox last week and aspirated 6 days later. Very discouraged. I thought I'd get at least a few months relief. Like I said, I know I need a fundo but to hear so many negative things about all of them I'm stuck. I wish you well my friend. Sounds like you're on top of things. Please keep in touch.
DWJRN
DJ-RN donna15310
Posted
donna15310 DJ-RN
Posted
My surgeon, pre-surgery, referred to the bottom of my esophagus as being a 'second stomach.' I knew that after surgery and fundoplication, that some 'tweaking' might necessary, ie the balloon dilation. I guess it takes time and treatment to give us some relief from the Achalasia - relief, and maybe a better quality of eating, but not a cure. I do not harbour 'negative' feelings, because prior to surgery, I was on a pureed diet, and then for a month, my system would only handle liquids. The small improvement is that I can eat some solids. Its only been 5 months since surgery. Guess, I 'live in hope.'
DJ-RN donna15310
Posted
Hun, I live in hope and prayer for you as well. Thankfully I've never had problems eating. Sometimes food would feel like it was stuck going down, but actually I've gained weight if anything. I can eat anything I like. Why I've gained weight and not lost is because all along I thought that food was going to my stomach. However, over the past 15 years I've had 6 esophageal dilatations (not to the LES) and all it did was create a large reservoir for food to collect in. For 15 years they misdiagnosed me. The Dr. never picked up on my hypertensive LES. They were treating me for GERD. I don't even have GERD. They have stretched my esophagus all out of shape. And I've been angry over it. 15 years of suffering with aspiration and aspiration pneumonia one case after the other. I've seen two surgeons at different hospitals and they both said that I need a Heller Myotomy with a Dor (anterior) Fundoplication. I may be a candidate for a POEM. But hearing all the negative things about it, I don't know if that would be best for me. I don't even know at this point which Fundoplication is best for me! I don't want to have one because that's the type they specialize in and excel in. I want the one that will benefit me most. And surgeons have a tendency to push what they do the most of. Not what is necessary best for you. How do I find out what is best for me? How do I know the specific Fundoplication is the best one for me. I'm about ready to scream!
Robert13450 DJ-RN
Posted
Hello again my friend. I'm sure you already know that if you do POEM than they can not do a fondo at the same time . I found that out the hard way. Remember I had the plication with an overstitch done. As far as I was told second person in country to have it done. At first I thought it was a failure but after 2 weeks of healing I seem to be getting better but I'm still taking high doses of acid meds. Now, I was told I would be able to either get off them completely or just take one daily pill . I sure could live with that. If you want my doctors info just let me know and I'll post my email address. I wish everyone the best. I see some tempers starting and this is no place for that. That's all I have to say. Feel well everyone
Robert13450 DJ-RN
Posted
Hello again, just thought I would let you know that after having a plication via a overstitch which is a brand new procedure with a new device. Where the pull up your stomach wall and stitch it to your esophagus during a Endoscopy. Well, I am 6 days out and already woke up this morning with terrible acid burning my throat. My only hope is some doctor can fix me before the esophagus is damaged beyond repair . I couldn't live on a feeding tube
DJ-RN Robert13450
Posted
Oh man I'm sorry to hear this. Perhaps when things start to heal, the acid reflux will subside. Hopefully they have you on a PPI. I take 40mg of Prilosec at night. I seldom have GERD. I hate that you went through all of that and still hurting. I have a feeling that after a bit of time has passed, those symptoms will subside. Was this in place of a Myotomy or a repair of one that you previously had? I've never heard of the stitching.
DWJRN
Robert13450 DJ-RN
Posted
This stitching is a brand new procedure. I was told I am the 2nd person in the US to have it done. Kind of limits my follow up care to this group of doctors. Like always they promised I would get off all meds. I still take 60mg dexilant twice a day and 40mg Pepcid twice a day. I sure hope you are right that it calms down after it heals. So far I've done 3 Bravo tests and they want to do another soon.
DJ-RN Robert13450
Posted
Robert I'm not familiar with the term "Bravo" what procedure is that? I've got to have a Fundoplication with a Myotomy. But I honestly don't know which will be the best for me. Have you had a Fundo? If so how was it. Which have you heard is best, Dor, Nissen, Toupet', etc ? They are wanting to do a Robotic Dor on me. But that just happens to be what this surgeon specializes in. It doesn't mean it's the right one.
DJ-RN
Posted
I'm glad that more of you are telling your stories. We all learn by them and you never know. Something you say may prove to be music to other's ears. Thanks to all of you for taking the time to share. We will continue to stand as one and try to help each other out. Sometimes it's good to just "vent!" But you never know how your words may effect someone in a positive way. We WILL beat this disease.
DWJRN
jacarr1 DJ-RN
Posted
Thanks for posting this,
I've followed this forum for many years now, however I've not posted for a long time mainly because the general theme seems to be surgery above other options.
A little about myself, I first started to suffer the symtoms 14 years or so ago, not knowing what as going on like most people panick set in....for a long time no one ( doctors ) could put a finger on what was going on and all the time it was getting worse and worse and then I had a Manometry and the the specialist said straight away Alchalasia, and it's very rare, again panick...but by this time the symtoms were getting so bad I could barely keep water down, so they put me in for a balloon dialitation which was a disaster, I think they blew up my esophagus and missed the muscle and I came away with even worse symtoms, I actually thought I was going to die for weeks after and there was no improvement.
Then came the surgery option and my surgeon was quite clear when he said to me and I quote, the surgery may last six months or it may last 10 years I really can't say, I depends on how fast you heal, that meaning the faster you heal the less likely a good result because of scar tissue forming quickly, end quote.so we proposed another balloon dialitation only this time using a method I'd never heard of, Dialitation with Fluoroscopy and it became clear to me that this method was far more accurate than a camera down the throat, because it guides the balloon by x-ray and I have to say the results were outstanding, for the first time in years food just went down without any effort, that first proceedure was around six years ago and I've had two since then, now don't get me wrong food is still tight going down but I haven't brought food up for a very long time and I have mimimal reflex, for which I've found good quality soft licorice fixes almost immediately (try different brands there not all the same) and ask your surgeon about "Dialitation with Fluoroscopy" before surgery, if they haven't heard of it start talking to someone who has.
Regards,
Jim
DJ-RN jacarr1
Posted
Good for you Jim. Yes. You are right. There are other options available and surgery doesn't have to be the only one. I'm not a candidate for pneumatic dilatation as I have stage three spastic Alchalasia. I had Botox two weeks ago and for the first six days it was great. I've since aspirated in my sleep three times. I sleep sitting up. I've had five esophageal dilatations over 15 years unecessariy and all it's done was create a large esophageal redorvoire for food to collect in and me to aspirate. I'm not having a Myotomy or a Fundoplication at this point in time. I'm hoping a tune up with Botox will help for a while. Everyone responds differently to surgery. But if you read, most have acquired new problems after surgery and I'm Just not willing to buy a lifetime of more problems. I'll just sleep sitting up. I can eat and drink anything. It just takes days for all of it to go into the stomach because of myhypertensive LES. Like I said, I haven't met a surgeon that I trust enough as of yet. Everyone, get a second, third and fourth opinion if you have to. If your questions aren't being answered and you don't feel totally comfortable with who's going to be cutting on you. Don't have it done by them. I can't stress the need for different opinions and options for this.