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
maya2452 DJ-RN
Posted
I'm new to this forum. Have had achalasia for 16 years and it has gotten progressively worse to the point where I'm planning to have a Heller Myotomy. I'm pretty desperate to eat food again. Right now I can only manage liquids and semi-solid, but surprisingly there are days when my system says okay, I'll behave. It's been hard to know what food will stay down as it varies. I don't have pain, thank goodness, but a lot of discomfort until I regurgitate the culprit. I don't know what stage of achalasia I have. No one has ever told me. I've had several dilations and one balloon procedure years ago. The balloon procedure helped for a few years and then I went bad again. The dilations haven't helped at all, nor one time with botox. It's the sphincter muscle that I think gives me the greatest problem as I don't feel the food getting stuck in the middle.
One more note of interest: My father developed achalasia in his 80s. I developed it at 50 and now my son, who is 42 has been having occasional problems. It's a horrible thing to live with. Food becomes your enemy.
DJ-RN maya2452
Posted
Ty for sharing. Just a suggestion. Please have a manometry before you have a Myotomy. You need to know, the surgeon needs to know what he's dealing with. And please get a second and third opinion. It doesn't sound right that they want to do a Myotomy on you without a manometry. You have to take charge of your health and beat down walls before you allow anyone to cut on you. I wish you well but I pray you will take my advice. You may end up with worse problems if you don't.
Robert13450 maya2452
Posted
Hello maya, he's right about you needing more tests and unfortunately doctors across America have discovered this disease , finally and many are trying to learn to do POEM procedures and as a result they are getting very quick to cut. I had it all, felt like food was stuck in my throats all the time and every meal had severe chest pains because the muscle wouldn't open to let food into the stomach until it had to and the would push very hard to open and I didn't know if I was having a heart attack or not. So they removed it last June and oh my god have I suffered with a rush of acid which has done tissue damage the entire length of my esophagus and into my vocal cords. Not even talking about the terrible burning that would last about 2 hrs and it would wake me up after only sleeping for an hour or so. Before you ask yes, I sleep almost sitting up and I've had 7 back surgeries for an injury 10 years ago and sleeping the way I do is putting a strain that will most likely cause another surgery. To get back on track , see more than one doctor , you owe it to yourself . I recently had a brand new procedure on my esophagus called a plication with a overstitch where during a Endoscopy they pull up your stomach wall and wrap it to your esophagus and then stitch it in place. To recreate the muscle they just removed. I've been on every medication before and still take 4 meds a day and at first I thought this procedure was a failure but after letting it heal a little I have only had an issue twice and nowhere near as bad as before. I was told I am only the second person to have this done and at first I was angry as I thought I should have been told before the procedure but I'm getting on in age and I figure if they can really improve someone's life using this method and you look around and young people are getting this serious disease I felt like I just wanted to help. Ask many questions about diet, time frames, besides the test mentioned they should also do a Bravo PH Test where they attach a small capsule to the wall of your esophagus and you wear a monitor for two days and push buttons but it tells them how much acid is getting past the point where they placed it and from the monitor and your notes can tell what foods and body positions it happens more frequently. Any questions just yell out. We are here all the time. Sometimes if you like you can state where you are from and maybe get a great referral. Good luck and hope you feel better very soon
DJ-RN Robert13450
Posted
1maya and Robert:
1maya242 Robert is right. I would indeed insist on a Ph test be done. I use the word "insist" because many Drs want do them or a manometry. But out of the two, you definitely need a manometry done. For some reason I feel that they don't have your best interest at heart. Or, either lacking in info about Alchalasia. Hun, you MUST get a second, even a third opinion before you allow anyone to cut on you. Surgery is not that clear cut. It can bring about another entire boat load of problems for you. Even if you have to fly to another city/state, do it. Make sure you see only the BEST! This is a life altering anatomical change they are doing on you and you must take control of your own health and educate yourself to ask important questions. If you think your PCP or anyone else is going to do a better job at it than you, you would be mistaken. This is a rare and rather peculiar disease that effects everyone differently. Whatever you read from others experiences don't think for a moment that yours will mirror theirs. Like I said, we all react differently to the same thing. I just can't stress enough the importance of getting second and third opinions from both GI specialists and surgeons a like.
Robert I'm so sorry you are having all these problems. I know acid reflux is horrible. As an RN I also know that the gastric acid within our stomach can burn a hole through carpet. So I can only imagine what it's done to your soft tissue within the esophagus and your trachea and vocal
Cords. I'm so fortunate not to have any of this. I can eat all I want. I've gained 15 pounds because when I eat I keep eating because the food goes into a second stomach created by all the dilatations I've had to my esophagus. So, my stomach doesn't signal the brain telling it that it's full. So I keep on eating. My esophagus can hold three large meals if not more. And it takes up to 48 hours to squeeze through the LES into the stomach. I can take a pain pill and not feel it for hours. Sometimes many will collect in the esophagus and go down at the same time making me high as hell. Which I don't mind. Lol.
I pray that the overstitch works for you. Give it more time and eat things non acidic causing. I think sodas would be good for you because of the acid base balance. But I could be wrong. I was trying to remember all the science I had to take but forgot it all. I would suggest gaviscon though. And I'm sure you're own PPI's at large doses. But, you have to be careful with them because they do cause renal problems after prolong use. Or can I may add. Research Gatric Acid and Ph Balance in The Stomach. You may find some info there to help tolerate or lessen the acid, or to balance it out. I'm glad you are sleeping sitting up. I have to or I will aspirate big time. And my aspiration is severe and it feels like I'm going to die when it happens. When your airway is 100% occluded the only thing on your mind is clearing it however you can and taking that one breath. I've had to do self heimlick menuever on me by falling forward on the floor to dislodge food and fluid. I'm honestly scared I'm going to choke to death one night when I can't clear it. I have severe chest pain. Last night I had to take nitro tablets for it. It's a crushing pressure pain that radiates to my jaw and teeth. Often it's hard to tell if it's esophageal spasams or heart anomalies. When in serious doubt I go to the ER immediately. Many have died assuming it was their stomach/esophagus. Please don't chance yours if your symptoms deviate from the norm you've come to know. I can't stress the importance of that. We don't want anything to happen to you.
DWJRN
maya2452 DJ-RN
Posted
I'm sorry if I didn't mention that they recently did an endoscopy, manometry, and barium swallow to make sure about my diagnosis which was originally given to me 16 years ago so the surgeon will have all the pictures and information. I do not have any peristalsis in my esophagus. They said that my esophagus is dilated and my LES is somewhat open, but I suspect that it spasms at times, and that's why nothing, not even liquid will go in. I suppose I could get a second opinion but I don't think it will be different. At first I was hesitant about the surgery, but now I really want it. I will, however, ask about the balloon procedure again.
Thank you both for your suggestions.
DJ-RN maya2452
Posted
Maya, I'm glad that they did all of those tests. You can see why I would have been worried and didn't think you were getting the best care. A pneumatic dilatation may be an option if you're a candidate for it. I'm not because I have stage three spastic Alchalasia. I did have the botox but it only worked for 6 days then I was back at aspirating in my sleep. I know that you trust your surgeon, I do as well. But, I still got 3 opinions. Not everyone was in agreement. I would still highly suggest you at least see another surgeon before you allow them to do your Myotomy. It may be that you need a partial Fundoplication as well or either would benefit best with a POEM. I'm having a POEM and not the Dor Fundoplication the surgeon wanted to do. It just makes more sense for me. Just know that just because your surgeon excels at and known to do one particular Fundoplication, that doesn't mean that it's best for you. A surgeon is going to push what he does best. That's why I would get three opinions from three different GI specialists and see what they propose. I personally think that they know more about which procedure or fundo you need moreso than the surgeon. I saw three GI docs and two different surgeons. Be safe and not sorry. I would sit down with another GI doc and ask him if he were you, what type of surgery would you want your daughter to have. But, that's all up to you. A less invasive procedure may last 6 months to two years. You may not have to have a Myotomy right off. That way Drs will know more about the treatment when or if you need surgery.
DJRN
Janeeyre maya2452
Posted
Hello, Maya--so sorry that this disorder is making life so difficult for you. I am not swallowing the way I should, either, lately and so I have at least some idea of your discomfort. Ever since I read this post by you a few days ago [and simultaneously became aware of achalasia] I have been reading papers on the disorder in medical journals. One can do that online. I am quite involved in DNA studies and so the last paragraph of your message especially intrigued me. The papers dated back to 2010. On the one hand, it is said that achalasia is "rarely inherited" and is idiopathic, meaning it arises spontaneously, but those papers I viewed seemed to me to be gradually creeping toward a genetic component. Now, we are all genetically susceptible to some disorders, some of us to multiple ones. After all, we have the genes of two parents contributing. I have described my family's obvious weakness when it comes to GI problems in the IBS forum, but that doesn't necessarily show up in a genetic profile that one receives when one has a DNA test. However, mine indicated I am definitely genetically susceptible to Crohn's disease and my sister has suffered from that since her early teens. So far I have escaped, they say, but what has been diagnosed as IBS for me may be the start of something else,.
?The latest paper that I read is from 2016. While, again, it repeats "rarely inherited", it rather confusingly discusses "genetically susceptible" and I would really have to wonder just what distinction is being made there. I quote: "The likely etiology includes neuronal degeneration, viral infection, genetic inheritance, and autoimmune disease. Current evidence suggests that the initial insult to the esophagus, most likely a viral infection or other environmental factor, causes inflammation in the myenteric plexus and leads to an autoimmune response in genetically susceptible individuals, with subsequent chronic destruction of inhibitory myenteric ganglion cells resulting in the clinical syndrome of idiopathic achalasia."
??Here is the paper:
https://www.nature.com/articles/srep31549
?Some of it is clear enough and the rest leads to instant brain freeze, although I am used to such papers. This is the circle it goes goes around in: It is still a rare disorder because the genes that make one susceptible are not often found in the population to pass on--like Crohn's disease. Crohn's is the result of an autoimmune response and likewise achalasia. But the paper indicates no great belief in the "spontanaity" of achalasia, suggesting something must trigger it. That's contained in my above quote. I realize all this is less than cold comfort, meaning none at all. I am merely pointing out the road the scientific community seems to me to be taking in attempting to understand achalasia. As far as the genetic inheritance component is concerned--I doubt that can be wrong. Everything that we are is programmed in our genes.
Janeeyre
Posted
Just to be clear, "idiopathic" does not include achalasia where opioids are suspected as a contributing factor.
DJ-RN Janeeyre
Posted
This is true. But, they don't know for certain they are a direct link to the cause of Alchalasia. Only blind studies to suggest there is a correlation between the two. Which I think there is.
DJ-RN
Posted
BTW, when I make a comment about what I think someone should or should not do, this is just my personal opinion. Even though I work in the medical field by no means does that make me right and someone else wrong. Most of my replies are based off of both experience, knowledge and my personal opinion. I don't claim, nor is it my intention to act as though I have all the answers because I don't. The only reason I started my group/thread is to try and help as many as I possibly can. By both my words and those of all of yours.
Thanks,
DJRN
DJ-RN
Posted
DJ-RN
Posted
Recently while responding to one's post, I used the term "palliative measures." As an RN, I really didn't think twice about using it as it is part of my everyday vocabulary. I'm sure that I probably use it seers times a day. However, I've had a few people prvt msg me and were very complimentary with my posts and how much I do indeed try to help others in anyway that I can. They thought it necessary though to bring to my attention how others may be taken back by my use of the word palliative. Having thought about it I can see how this could happen and misconstrue my true intentions. First and foremost I was not trying to come across as negative nor was it my intention to hurt, mislead or confuse anyone. We all know the definition of the word simply means treating one's symptoms, and making them as comfortable as possible because there is no known cure for what they are dealing with. And that's all that I meant when I said that the surgeries and procedures to treat Alchalasia were just palliative measures. Theoretically the way that I used the word was correct, but another word that wasn't so grim and bleak should have been used. I believe that when one here's that word, they associate it with those who are terminally il, with hospice and have other severe medical anomalies that are hopeless. So I want to apologize to those who may have taken it the wrong way. Again, the last thing I wanted to do was hurt or confuse anyone who like myself is battling this disease. I'm sorry for any confusion and will watch how I word things in the future. We have to all share our stories and count on one another for support because this is a very rare disease and it can be tough going it alone.
Thank you for taking the time to read this.
DJRN
DJ-RN
Posted
One Surgeon's Expertise Doesn't Mean It's Right for You!
I can't stress enough the importance of getting a second, even a third opinion from both GI specialists and surgeons alike. A GI Dr. who specializes in Alchalasia is probably best at telling you what type of Alchalasia you have and which surgery will benefit you most. One, they read manometry results all day long and know them backwards and forwards. They deal with Alchalasia patients in a clinical setting and have a much clearer picture of what they are going through than does a surgeon. A surgeon sees them briefly before surgery, during surgery and a couple of times with followup appointments. The GI specialist is with you the entire way. Through communication of a patient's test results and symptoms presented with, and the GI docs Impression,
the surgeon then does his magic.
I saw three GI Docs who each specialized in Alchalasia. All three were on the same page and each suggested the same type Fundoplication I needed. Hence, giving me the option of less invasive procedures first such as Nitrates, calcium channel blockers, Botox injections and pneumatic dilatation.
I also saw three surgeons. Only 2 recommended the same type of surgery I needed, one told me I wasn't a candidate for a POEM, and the third suggested something entirely different. One might ask why? It's really quiet easy to understand. A surgeon's reputation is based off of what he/she excels in and is known for. And when it comes to surgery they are going to stick by that no matter what. What I'm trying to say is just because a surgeon is good at one particular procedure, doesn't mean by any stretch of the imagination that what they do best and have perfected is the right surgery for you. And make no mistake about it, when it comes to Fundoplications, the type that you have can affect you the rest of your life.
Don't be afraid to ask questions and don't ever think that a particular question is dumb. There are no dumb questions if you don't know the answer to it. You take charge of your own health. Don't ever be intimidated by any medical personnel. If one has poor bedside manners stand your ground. If they see that you are going to be persistent with something, believe me, they will back off. No one in the health field is beyond common courtesy. And no one is beyond answering any and all questions you may have. I use to tell all of my patients to write their questions down before the doctors would make their rounds. If they didn't they could almost guarantee themselves that they would forget the one they wanted to ask the most.
Alchalasia is a very tough disease to treat. Sometimes it's hard to get a proper and accurate diagnosis. I saw one GI doc and his surgeon when I was first diagnosed with Alchalasia and they wanted to schedule me for a Myotomy and a Dor Fundoplication within five days. When I asked when they were going to do my manometry test, they both said that it wasn't needed. You can imagine how fast I left their clinic. I was happy. I had educated myself enough to know that a manometry tells you much more than if you have Alchalasia. It can help diagnose what type you have. And from that information the correct surgery can then be discussed. Never settle anyone. Get your second opinion, know this disease, ask questions. You owe it to yourself.
DJRN
AlanJM DJ-RN
Posted
Over the past generation the GI surgery has migrated to a very much smaller number of centres, and there is quite a lot of pressure to reduce further so that a higher level of expertise is maintained.
​The issue of the manometry showing details of the condition is absolutely right.
DJ-RN AlanJM
Posted
Regards,
DJRN
Robert13450 DJ-RN
Posted
Good Morning, I had my appointment yesterday with my gastro and I received multiple items of bad news.
Let me ask you, when I did my 4th Bravo test for him he told me my acid levels were the highest he had ever seen or heard of. I was told a normal reading for a person with reflux is between 30-40. They then showed me mine, which were 116+ . I was told I had multiple pockets of severe scar tissue from acid and that there is no movement anywhere along my esophagus. I was told I could get Barrett's but that would be from the acid and possible because it's more common in white men middle aged. Also was told by the looks of things and because I have already had squamous cell cancer in another body part he thinks my Achalasia is so severe that it almost certain. I was told today that the plication with an overstitch is not a permanent fix and needs to be done like once every year or two, which I was never told. I was right I am the 2nd person he's done this procedure on with Achalasia and there's a doctor in California that has done 7. So, there's 9 of us walking talking lab rats. Now they want me to do another Nravo ph test which I feel is bs cause it will only benefit him, as per if my acid numbers went down just a little viva success. They also want a Barium swallow study , I already know it's all gravity and lastly the want me to eat a radio active breakfast to track it. I really thought they were going to call security cause at one point I told him he was a very lucky man that I was behind a walker. Lol shitty day ! Hope you feel better
AlanJM Robert13450
Posted
Barrett's Oeophagus (BO) is also called columnar lined oesophagus and should normally be visible on an endoscopy because the cells in the lining of the oesophagus are a darker red colour. It is heavily associated with prolonged, severe reflux. The chances of developing adenocarcinoma from uncomplicated BO are low, but they do increase if there is dysplasia, particulalrly high grade dysplasia, which carries a 50% risk of adenocarcinoma in the following 1-8 years. There are some variations in how BO is defined between the UK and the US so one needs to be a bit careful, and these figures relate to the UK.
?Reflux is very much associated with adenocarcinoma and not squamous cell carcinoma, which does not make your doctor's judgement wrong of course, but the logical progression would be to have biopsies taken and to test for dysplasia and indeed possible cancer. Talking about cancer at this stage is at best premature, unless they can actually see a tumour there.
?So I think, taking things in priority order, you have to get some tests / biopsies done to check whether you do indeed have cancer. Then you need an assessment of whether your oesophageal scars will heal. You need some method of reducing the reflux, which may involve some surgery and this needs to take into account your lack of motility.
?I would say that with prolonged and severe reflux suffered for many years, there is a good chance that you have BO. There is a procedure called radio frequency ablation that can remove dysplastic BO and thereby give you a reasonable chance of avoiding progression to cancer.
?On the other hand, if your oesophagus is in a very poor condition and there is a high risk of oesophageal cancer developing, you might be better to have it removed. This is major surgery, and involves pulling up the stomach and joining it up to your throat, but I know a lot of people who have had this done and it is perfeclty possible to enjoy a good quality of life afterwards. But you do need to be in the hands of an experienced Upper GI surgeon at a specialist centre.
?I mentioned the overstitch method to an experienced Upper GI surgeon in the UK and he raised a sceptical eyebrow but of course doid not know the details of your case, and it was only a very brief conversation. Another UK surgeon said 'it didn't work'.
I can quite understand them wanting to double check the acid readings, but those numbers do not correspond to the pH scale that I am familiar with, and it may be that I am just unfamiliar with the Bravo methodology.
DJ-RN Robert13450
Posted
Robert, I really hate that you're having to go through all of this. Damned if you do damned if you don't. The plication overstitch has been done before, but your Dr. has probably, along with another has probably altered it in some way making you one in nine patients to ever have it. It doesn't sound like the usual via overstitch. He should have told you that you had to have tune ups or re-dos every year or so. I would have been very angry.
I wish there was something that I could mention that might help you. Stomach acid will destroy you. It's literally acidic enough that it will burn a hole in a thick piece of carpet. You can imagine what it's doing to delicate, high vascularized sensitive flesh and mucous membranes. They have to find a way to correct it. It will more likely than not do permanent damage to tissue. I just don't know what it is unless they do a full wrap with another Fundoplication. Many people think that these surgical procedures are permanent. Most aren't. Most can be reversed. It may be they reverse what they've done to you thus far and start over again. I'm wondering if a total wrap would stop the acid reflux. Keep us posted. It's always good hearing from you.
DJRN
Cowgirluc Robert13450
Posted
Robert13450 AlanJM
Posted
Thank you again Alan, All I can say say is that I was told there's nothing left to do except to try and reduce the acid . I don't know if I have a overreacting stomach , I've tried to change my diet , the times I eat and my body position when I sleep. I think it's sad that I lost almost 7 years which is when it started getting bad and instead of doctors giving up and trying to find me help , maybe if I had done something earlier things might look better at this point. You are a stranger to me and yet you have helped more than some of the doctors I have seen. Thank you very much. I know sometimes I disagree with you but it's all good. Have a great summertime day
Robert13450 DJ-RN
Posted
He did mention that a full wrap would be the only thing at this point left to try but he also warned me that in my condition and stated anyone with Achalasia it's very difficult for a surgeon to get it perfect. If it's too tight or to lose your still in trouble and it's not reversible. I'm not angry at my results that's in gods hands but I'm very angry that I wasn't told a lot of facts before jumping into this. I told him that I was angry and he laughed and said so what's the big deal I didn't do anything that can't be undone? I said at 65 I don't like going under general anesthesia for no reason or for that matter giving up my meds for a week prior to or having to stick to a very Strickly diet before and after the procedure. They think it's nothing to put the body through these things but you know better.
I know you haven't been doing well either so thank you for reaching out again . Gotta go doorbell
Robert13450 Cowgirluc
Posted
Cowgirluc Robert13450
Posted
I'm not sure how many years but he is the professor and teaches also do I'm sure he's good all I can do is try cause the
Cowgirluc DJ-RN
Posted
Have you looked inti you phyloic spincher I got a link tabout it cause I asked. Well it talks about bile acid which could be why the stomach acid pills aren't working. My husband has acid told him Barrets and he take prilsic and it didn't work for him Good luck!
Robert13450 Cowgirluc
Posted
I understand the thought process ,I do. I'm just trying to tell you that they lie like rugs. My last surgery with a doctor who has done almost 500 POEM procedures did not tell me he had never done the procedure he did on me on a patient with Achalasia. Instead he boasted about traveling all over the world to teach other doctors how to do this procedure. Gods honest truth. I only tell you this so you will be careful don't use any doctor just because he's close by, they can ruin your life and not give it a second thought. I know you're in terrible pain I was and still am after 2 surgeries. Use to think I was having a heart attack after meals. I know first hand all about it. I will pray that whoever does your procedure will have great skills in his hands that day for you. Be careful and hope you feel better soon
Cowgirluc Robert13450
Posted
I have yo travel 100 miles to see doc cause the ones where I live dont know sh*t only lime to stick tubes up your #$$ . selfnvestgated my self after being told I have neoaphty of my esphogus. Thats why I choose them . They teach at that hospital. I'm in gods hands at this point
DJ-RN Robert13450
Posted
DJ-RN Cowgirluc
Posted
I have a little narrowing of my pyloric sphincter and an ulcer. But not bad enough to cause me symptoms. I only have trouble aspirating for the most and developing bouts of aspiration pneumonia. If I sleep propped up I'm good. I'm looking for a new bed. One that's adjustable and where I can sleep at about 65 degrees. If that works I will not have a Dor Fundoplication or a POEM. IM praying that it prevents it.
DJ-RN Robert13450
Posted
Robert, I would shop around for the best surgeon you can find even if you have to make a long road trip or fly. I think if you find one who's done at least a 100 of them you will be goid.
DJ
Robert13450 DJ-RN
Posted
Wow, I was told 2 days ago just the opposite. I'm getting to a point where I don't believe anything a doctor says to me.
Robert13450 Cowgirluc
Posted
Let me understand, you were told your husband has Barrett's esophagus? All they give him to take is Prilosec? Wow, he must have some serious pain and burning . What dosecand how many a day?
I take 60mg of Dexilant twice a day and it's a once a day drug
Plus I take Pepcid 40mg twice a day. They won't give any more meds as this is past the limit but give no answers. I hope your husband has a good doctor. Good luck
AlanJM Robert13450
Posted
Proton pump inhibitors (PPI) medication can be very helpful for Barrett's Oesophagus patients because they reduce the stomach acid that damages the oesophageal lining and may help with the heartburn pain.
With Barrett's you should have regular monitoring and if dysplasia develops you should consider radio frequency ablation.
Some people do not respond to PPI medication and may need specialist help and possibly anti reflux surgery. With pain, it would depend on the cause of the pain, but for most people any pain from Barrett's would be heartburn-related.
Cowgirluc DJ-RN
Posted
Man I wished my would go away by propping my head up I do at time get 2pillows. I tried to sneak in a Reese's peanut butter cup and NO it didnt get NY 😕 started spazing real bad. I hate I can't eat chocolate!
Cowgirluc Robert13450
Posted
Robert I dont know how much pain he's in cause he dont do anything to Make it feel better. He dont take his pills he eats bad things as in real hot spicy food and DRINKS alcohol a lot of beer. I know there are a lot of beer drinkers out there bit why drink a fermatining drink and wonder why you gut hurts. Drives me crazy along with my issue of not eating at all till my body has to have it. Even my vidin goes haywire hope to eat soon again. I got real bad spaztic hut!
Pasha333 Robert13450
Posted
I have to question DJ-RN, or rather his Surgeon. I am sorry. Your surgeon clearly feels it is reversible. We were told also that a Fundoplication is not reversible. However, the Heller's Myotomy can require repeating if the muscle grows/overgrows again and CAN be repeated as such and a Fundoplication can be ‘redone’ in that it can be tightened.
We are fortunate to have one of the British authorities on this subject as my husband’s surgeon. He has performed many of these and this information above is from him.
AlanJM Pasha333
Posted
I agree with Carol.
?Sometimes the fundoplication can give problems requiring it to be re-done, and I know somebody who has had this repeated, but I imagine that after a period of time, the fundoplication would adhere to the oesophagus and it would take a very brave surgeon to try and prise it away. So the idea of the fundoplication being reversible, as distinct from being re-done after loosening through natural means, or tightened, is not one that anybody should rely on.
?It does sound logical that the length of the affected muscles that are cut in order to achieve the myotomy could later be extended, or repeated, depending on the surgeon being able to achieve access.
?I am unqualified in medical matters and these issues really are best dealt with by referring to surgeons experienced in the field who know the patient's particular circumstances. There are a whole range of variations within an overall condition and it is perfectly understandable that a treatment that suits one person may not be appropriate for another, notwithstanding some differences in schools of thought amongst the surgeons.
DJ-RN Pasha333
Posted
Well I don't know what to say other than two different surgeons have told me a Fundoplication can indeed be reversed. To the degree I don't know. And, a GI specialist also told me it can be reversed.
DJ
DJ-RN AlanJM
Posted
Alan, I'm only telling you what two prominent surgeons have told me. I don't know anything about the time period they were talking. So as far as prying it away that may be after a point where it couldn't be. I don't make up information as I go. I was merely stating what was told me.
Robert13450 DJ-RN
Posted
Maybe for a reflux patient but not a Achalasia patient? Maybe a difference? I don't know trying to figure this out as I go and really not doing a good job of it. How are you feeling?
DJ-RN AlanJM
Posted
They can also be very damaging to the kidneys. One wouldn't want to be on them unless the benefits outweighed the risks. And with Alchalasia they do. I'm on 40 mg of Prilosec a day. But I do know the potential risk they pose to my kidneys.
DJ
DJ-RN Robert13450
Posted
I'm doing quiet well now that I'm sleeping sitting up. I went yesterday and bought a new bed where the feet and head can be raised and lowered. I'm also on the books to have another Botox injection.
DJ
Hope you're feeling better.
DJ-RN Robert13450
Posted
I feel the same way Robert. I think they often tell you what you want to hear. I was just repeating what both surgeons told me when they said a Fudo could be reversed. I don't know if it can be or not and don't really need to know. 👍
Pasha333 DJ-RN
Posted
No wonder that you are cautious of what you are told/what surgery is being suggested to you if both surgeons have told you it is reversible. As an RN, you yourself would realise that this would be problematic to reverse.
We all have individual experiences with individual surgeons and this is why it is crucial to share information so that we can cherry pick facts to enable us to make the best decision based on our set of circumstances.Â
DJ-RN Pasha333
Posted
I agree. But again, I was just repeating what a GI specialist and two surgeons told me. There are many variables to look at. Theoretically speaking I believe that it is a reversible procedure only after a short amount of time. I understand fine, delicate tissue adhering to the other and how problematic it would be, if not impossible to reverse. But again, I didn't go into it with them about the specifics/time period and all other variables that would play a role in that statement alone. Personally, as a sufferer with this horrific disease and as a nurse, I wouldn't think that much time could pass if they were to try to reverse it, or if it could be reversed at all. I just don't know that much about it. I'm learning like all of you are. Just because I am a Cardio/Thoracic RN by no means makes me anymore knowledgeable on this disease as the next person. I appreciate your comment. It's exactly what came to my mind as well. How long are we talking in order for this to be done? I just wish everyone well and hope that each of us makes the best decisions we possibly can. I'm about to have my second Botox injection and just pray I get as long of relief as possible. You guys are great to talk to and I respect all of your opinions. Again, we've come together as one and have helped each other out tremendously. :-)
DJRN