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
1blindmice DJ-RN
Posted
I am glad that you mentioned alternative's beside the surgery. In October I, after a lot of research, had a pneumatic dilation or distillation. They told me the procedure itself is easy, the hard part is if you get a tear and start bleeding. They have a surgeon on stand by. So did procedure, after awake I drank barium, no "leaks" so all was good. I felt great, especially getting rid of the chest pains, but then recently I had to have some surgery and seems to have started everything back in motion. As I write I can "feel" my throat tightening and am in awful pain. I guess I get mad because I feel like doctors don't take how serious this effects/affects one's life. I am 46 yrs old., with a daughter a junior in college and a 7 year old. There is more to life than me wanting to sit in doctors offices and ers and walk in clinics. Beside achalasia I have a pocketful of other "sickness" and I just miss me. I want the magic pill that will transform me back to my 35 year old self.
DJ-RN 1blindmice
Posted
I can relate to you. It's a tough disease and isn't easy. It seems like no matter what anyone has done, there are major side effects. That's why I am NOT jumping into a Myotomy or a Fundoplication. But, I'm not a candidate for dilatation. I'll stick with Botox till I figure out what's best for me.
Robert13450 DJ-RN
Posted
DJ-RN Robert13450
Posted
Robert, thank you for the advice. Before I had it, knowing that Botox can indeed compromise some people's surgery down the road, mainly with scar tissue like you said and a greater chance of perforation, I met with the surgeon who I think will be the one to do my Myotomy and Fundoplication. I asked him if having the Botox would present problems for him when he does surgery and he told me not in my case. In fact, he advised me to get them to see how long they would give me relief. I appreciate your concern and comment very much. You're right. This is a horrible disease and one which effects everyone differently. I'm not a candidate for pneumatic dilatation. I may be for a POEM. I'm seeing aother GI specialist that took quiet awhile before I was able to even get an appointment with. In fact, I had to write him a letter explaining what was going on with me and how bad I needed to see him. My appointment wasn't until another 2 months. He wrote me back and was good enough to tell me I could come tomorrow at 4. He's really good and specializes in Alchalasia. I'm in the Alabama, USA and you may have heard of our teaching institution I was a cardiac RN at. UAB Hospital. It's world renown especially in cardiology. But, we haven't started doing POEMS as of yet. I may fly to the Cleveland Clinic or Johns Hopkins to have mine done.
I hope you are feeling better! How was your procedure?
Cowgirluc DJ-RN
Posted
I'm having and see doctor at Oregon Health Science University in Portland ,Oregon I have to travel 100miles to see this specialist. Took several month to get in the clinic. Then went for test Then I get call back saying I need to see a surgeon . So not sure exactly how NAD it is bit I yell UA it sure hurts bad ! Bad ! And I have rods in my back from a Quad accident that broke my back and 2 shoulder surgery and I could eat then bit this really sucks not getting yo rat. I am having the robotic fun do thing come this June 13 wish me luck . I can't take the pain and not sleeping or eating !
DJ-RN Cowgirluc
Posted
I am so sorry you are having it so tough. Bless your heart. I'm glad you got in to
see them. What's your biggest problem/symptom?
DJ-RN
Posted
Has anyone had problems with Botox not lasting but a few days? I had it two weeks ago and the first week was amazing. No aspiration at all. After the first week I began to aspirate in my sleep yet again. I knew it was only going to last a few months but I wasn't expecting this. Very discouraging.
DWJRN
Janeeyre DJ-RN
Posted
The "guide" in question seems to me to be of assistance in more than one way. It provides an overview of Achalasia and many helpful hints from sufferers. I never knew any of it. It also describes the diagnostic tests and procedures on offer. Those seen rather daunting, but that is not the fault of the authors. Nothing to do with the gastric system, upper or lower, is any fun to undergo and one is lucky to be unconscious at the time. As for the underlying cause of Achalasia, does any sufferer really lie awake wondering what that may be? Such things are for the experts to debate. I am not sure I have the disorder by any means but some of my symptoms certainly fit. So far, I have decided to try the "drink hot water while eating" trick and it worked for me already. Much of our social life includes eating and my morsels are so embarrassingly small that I don't like to eat with anyone. I don't accept invitations for dates any longer and don't even like to eat with the family. With the candor of a child, my little granddaughter has said, "Grannie, you nibble like a mouse." Ones mouse portions are best consumed at home and the shortness of breath that comes on despite them sometimes is best dealt with there, too. One can't exactly start pacing the restaurant hoping to get rid of that "lump". Whatever is going on with me is very limiting and my heart goes out to all of you who are experiencing anything like.
donna15310 Janeeyre
Posted
I have Achalasia type 1; my esophagus is paralyzed. I found the guide that Alan [OPA], to be a tremendous help for me along this journey, which I never planned to take. I have had Heller-Myotomy & Fundoplication surgeries, plus a balloon-dilation, both in the past 5 months. There is no 'known' cause for this wretched rare disorder, nor is there a 'cure,' but rather, procedures and 'management'. It certainly is living in a new way, and I too, eat very small portions of food [like a bird, I've been told]. There is no 'magic' pill for this. And I have been told there will be no miraculous improvement. I appreciate this Forum for the support and information and sharing of experiences, which I think really helps many of us.
Janeeyre donna15310
Posted
Well, sweetie, it seems you've been through a lot and I hope your courage never fails you. I'm new here but I can see where one would derive much benefit from this group. I had never heard of Achalasia but Googled my symptoms and was directed to a post by "Little Pea" [who has some of the same] right here. There was also an ironic discovery but that doesn't matter. I have been feeling very poorly lately but have never been very comfortable talking with people about my physical ailments. As it happens, though, I have been cursed with various GI ailments and have seen a number of specialists over the years. I have the bad habit of diverting the conversation if the doctor seems like an interesting person or is from an exotic place. I start querying them, which I know is not very productive. While I was living in Los Angeles, I had an elderly GP from Persia with whom I struck up such a rapport that I forgot to be sick when I was in his office and we would lose track of time until his disgruntled nurse came in reminding that others were waiting. So I'm not a good patient. Quite a long time ago I was diagnosed with a hiatal hernia which, truthfully, never gave me much trouble but I have tended to attribute a lot of symptoms to it. I have had my esophagus stretched a couple of terms with very temporary results. But now that I'm reading here, I'm not so sure that I can blame some innocent hernia for my inability to eat normally now.
DJ-RN donna15310
Posted
I'm glad you have yours under control. It's an ongoing balance. I'm also happy that you posted on my site. I just want to help as many people as I can from the words of others. I had appt with new GI doc today. I've decided to just get by with the Botox I had a couple of weeks ago and just take a break from all of this. He told me I would benefit from a POEM. I'm in Alabama and will have to fly to Chicago or to Johns Hopkins. I'm tired of dealing with it. The only real symptoms I have is aspiration and chest pain. My esophagus has been stretched 6 times and now just acts as a second stomach. It may take 24 to 48 hours for all the food to clear the LES. At least I don't have the horrible symptoms and problems with swallowing etc. But aspirating in your sleep is bad enough. So I just sleep propped up.
DJ-RN Janeeyre
Posted
I truly hope you get to feeling better and I'm glad you posted here. Please keep us updated how your doing and hang around awhile. Many things you may say may be music to other's ears. Ty hun.
DJ-RN Janeeyre
Posted
Ty for posting. I hope you find the answers to all your questions and know that we are all here to help each other. 😊
Robert13450 donna15310
Posted
I believe that as time goes on and more people join in the conversation we will learn more . I believe that the paper you're talking about is helpful for information but nothing beats first hand information from people who have had these procedures done and the surgeries and taken the medications. People with this disease might as well where a number around their neck as doctors really haven't got a handle on this yet. Everything they tell us to do is a crap shoot. I just had a brand new procedure done which for now they are just calling a "plication via an overstitch " I am #2 in the country to have it done. I'm in my 60's so I figure maybe it can young people down the line.At first I was really p*ssed off but if I can improve one persons life then maybe I can look back without anger. While I was in the hospital there was a 18 year old man sitting waiting to have a POEM done and I just looked at him and felt so bad for him to have to live his entire adult life dealing with this bs. I keep a day to day journal about what I eat and meds I take and procedures . Everyone should do the same. Feel better people
donna15310 DJ-RN
Posted
As for being under 'control,' not quite yet. I am in the learning how to 'manage' this stage of this disorder, apart from possible balloon dilations being done in the future, there is nothing more that can be done, and there will be no miracles. So, one learns to live with their new friend 'Achalasia,' and to 'manage' as best as one can. Like Robert, I too, am in my 60s.
DJ-RN donna15310
Posted
I'm 58. I hear ya. I'm very fortunate I don't have it as bad as many. My worse problem is aspirating in my sleep. Thinking I'm going to die from choking. It's a horrible feeling. I've had to do self Heimlick on me or I would have on many ocasdions. I eat what I want. Sometimes slow going down. But mine doesn't go to stomach. It stays in a second stomach caused by six diliatations and stretching. It may take 48 hours tilll the food makes it to the stomach. My LES is extremely hypertensive and stays shut. I've lived with it for 15 years so I may not even have surgery. It depends on if damage has been done to my lungs from all the aspirating.
DJ-RN Robert13450
Posted
My GI Doc told me yesterday that if he were I, he would go to Northwestern in Chicago or to Johns Hopkins for a POEM. I'm not even sure I'm going to do it yet. I may just continue to sleep sitting up.
AlanJM DJ-RN
Posted
I spoke recently with one young woman whose doctor partner heard her aspirating in the night and packed her off to the hospital where she had her oesophagus removed. She came to the meeting to tell us about her experience about ten days later.
DJ-RN AlanJM
Posted
Ty for the post Alan. They are working on scheduling me for a bronchoscope soon. I fear the reason there were deviations in my pulmonary function test is due to scar tissue or other pulmonary anomalies that's occurred over the years having aspirated. I've been hospitalized sev. times with aspiration pneumonia. Right now Im just taking a breather from all of this for a while. I'm sick of Dr's appointments and tests. Still very discouraged in that the Botox only helped me for 6 days. I knew it was going to be a short term deal, but I was at least hoping for 6 months or so. When I met with my new GI doc yesterday for a third opinion, he suggests a POEM. So, I'm trying to get some Dr's names at Northwestern in Chicago. I live in Alabama/USA.
Thank you for the post!