Type II Achalasia- Anyone self managing without surgery?

Posted , 12 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi all. Thank you for taking time to read my post. I’m newly diagnosed and trying to figure out the options. Must have caught this fairly early as my symptoms are manageable with smaller meals and not eating within a few hours of bedtime. I have nighttime or early morning spasms but they quickly go away with burping and\or gavascon.  Although doctor has recommended HM within six months, I’m struggling with surgery option after reading so many negative outcomes and wondering if it is prudent to wait and have tests regularly to monitor esophageal dilation (minimal at present). Thanks for your thoughts. I’m especially curious to know if anyone at my level of illness is self managing and for how long. I know everyone is different, but I appreciate your thoughts and feedback. Maybe I’m missing something. It’s also difficult to explain to family who don’t necessarily see me struggle with eating that I need surgery. Five years ago, I only had trouble eating fruit. It has progressed to other foods, but again, manageable. Thanks again. 

1 like, 31 replies

Report

31 Replies

Next
  • Posted

    Hello....I, too, suffered for a long time before finally having the surgery. I had symptoms in my early 20's, but just dealt with them. They finally got bad enough that I went to see a specialist who diagnosed me with Achalasia and suggested HM surgery with dor fundoplication. I had the surgery in 2012 at the age of 40 and though it helped some, I still have symptons and was diagnosed with Barretts Esophagus Disease last May. I think it's truly your choice as to whether or not you want the surgery. It depends on how bad your symptoms are and how advanced your achalasia is. Go with your gut! Best of luck!!

    Report
    • Posted

      Hi JoyAsh, 

      May I ask if the Barretts was due to acid reflux, or just irritation caused by foodstuff pre opp? Or of course unknown... Like you, I have put up with A for decades, and am always considering Surgery... 

      Hi Jdbax, 

      I have managed untreated A for a long time and I know others that have too. I learned to adopt a movement to aid swallowing, that involves breathing in, raising my arms or shoulders and gently forcing down with my diaphragm. I even saw it work during a Barium Swallow - confused the doc LOL... Plus I use Magnesium/VB and found that Calcium Channel Blockers (Tildeum brand) work well for me (prescription drugs of course). Meditation and acceptance are important to me too. None of these are a cure of course and need support from a GP at least. The risks of not having surgery are inflated Oesophagus (but that can happen quickly anyway)  and of course worsening of swallowing. Bizarrely my actual symptoms slightly improved over the years, but I know that could still change. My gut feeling tells me that wont be overnight so am happy for now to carefully proceed... Biggest caveat on this site is always to have medical support in your decisions, but most people on here do take multiple medical opinions..   

      Healthy Karma to all.. 

      Report
    • Posted

      Thanks for that helpful post.

      ?Barrett's oesophagus is invariably caused by the long term exposure of the oesophageal lining to reflux.   There are more details on the website Action Against Heartburn.

      ?If the lower oesophageal sphincter is tending to be closed, there is less likelihood of reflux;  but if the sphincter has been stretched, or there has been a myotomy (subject to how good the fundoplication is) / POEM, the chances of reflux are much higher, I believe.

       

      Report
    • Posted

      Hi again Alan,

      (We met at the last Achalasia large group meet-up) ... I have heard  medical advice (only from one source) re that lining damage from lingering food chemicals (for the untreated case) is a key risk; but I am yet to find anyone that has suffered that to any great degree; most seem to have suffered greater acid issues post op... Swallowing aside,  it is just a point of interest, and relevent to the original thread, and my question.... Personally I avoid citric acid, caffeine etc, and drink plenty of water; I also chew double action gaviscon tabs as apparently they will neutralise food acids too... Nothing is simple it seems..smile But grateful for the few positives and good days... smile 

      Best

      Neil  

      Report
    • Posted

      As Alan has already stated, Barretts is normally caused by long term acid reflux which is the case with me. 
      Report
    • Posted

      I have dropped an email to a Barrett's Oesophagus specialist and to our surgeon contact to gather what advice they may have on this point.   My unqualified reaction, for what it is worth, is that pills and medication can cause damage to the oesophageal lining if they stick there and do not get passed into the stomach in the normal course of events (which is why sometimes medication taken in liquid or other forms / routes eg under the tongue / suppositories might be beneficial);  and I imagine that some kinds of lingering food might cause irritation, or worse, also (eg very spicy food or something with a very strong chemical element.).    I am not sure that the damage of Barrett's Oesophagus is entirely acid, in that there are other stomach chemicals that contribute to reflux (eg bile, pepsin), but I do not know for sure, but anti stomach acid medication is the predominant methid of treating these type of problems.  

      If food is fermenting in the oesophagus and is thereby creating a strong chemical reaction, then it would be logical that it could cause irritation and soreness / oesophagitis.

      ?You are quite right that the reflux problems are predominantly post surgery after the lower oesophageal sphincter has been loosened.   I would think that having Barrett's oesophagus at the same time as achalasia is rare but that is an assumption on my part.

      ?It would be possible to test the food residue for acid content, but I suspect that a doctor would probably say that it is best to concentrate on getting the oesophagus to clear properly regardless of the chemical content of the food residue (I know this is easier said than done).   It might be interesting to try to test your saliva or regurgitated food yourself.  There are devices like Qimius test strips for pH testing that can be obtained fairly easily and inexpensively from Amazon or perhaps from pharmacists.   You would need to be careful about conclusions and readings though.   

      ?If I hear back from somebody with a proper qualified opinion I will update this post.

      Report
    • Posted

      Thanks Alan, very kind, 

      All makes logical sense to me; a very useful reply... 

      Report
    • Posted

      Alan,

      Thanks for the information. Risk of Barrett’s and subsequent cancer risk is the reason given me for getting the surgery for Achalasia early to protect the esophagus (the “health prize” to which  you or someone here referred?). The confusing part is that the surgery comes with risk of reflux and Barrett’s or lifelong PPI use. I don’t yet know that risk, although I do know some people are on PPI for life without Achalasia. I think likely the long-term  PPI risk is less than the serious risk of damage to the esophagus and potential esophagectomy. Sort of rambling here (and I probably know the answer), but I wonder if it is possible to be so conscientious and careful of food chewing that it doesn’t get stuck. Or, to always eat several hours before laying down to ensure esophagus is cleared. This might be possible with Type II Achalasia where there is still some lower esophageal pressurization. 

      JBax

      Report
    • Posted

      Yes... The whole situation can feel like something of a paradox. Obviously physical treatment or surgery becomes essential if one cannot eat at all; so those risks are fully justified - a no brainer I guess... 

      Just thinking out loud now: If however one can eat (albeit not perfectly), doesn't feel relux or aspiration, but has a risk of food irritation, then to me the risks/benefits of treatment/surgery seem to cancel each other out somewhat as acid then enters the equation (or a life on PPis if they work). Sorry, answering my own question now smile - I think a Dr would say every case is different depending on state/shape of the Oesophagus and one should have regular surveys. That I am sure is right, but just out of scientific interest I am yet to find an answer to the basic question re if retained food chemicals alone can cause Barretts or other issues. As Alan suggested an acid test may be the only way to tell, but I just wondered if there was any experience or data already out there to help this thread...Still thinking aloud smile I have heard of Alcoholics that get similar issues without acid reflux so I guess it depends on what one might put in their mouth. Probably only a Bio chemist would know what foods can cause the most toxic mixes, so maybe that is what is required.. 

      Obviously ones own damage can be concluded by an Endoscopy/other tests, so it is maybe a pointless question; but I find it interesting, possibly for advising patients early on - pre treatment...  See if Alan gets anything new from the experts...   

      Warmest all, 

      Report
    • Posted

      I'll let you know any medically qualified responses I receive.

      ?As far as the health of the oesophagus is concerned, the priority is to be able to take in nutrition and to eat as well as you can for the sake of the rest of your body and, as far as possible, a quality of life.   Then, in the longer term, trying to ensure that the condition does not deteriorate to the point where a) the better options for surgery start to close down because it has been left too late or there have been too many dilatations; or b) you have to have your oesophagus removed surgically, which is the ultimate surgical option that will not be relevant except to a minority. 

      Only, say, 10% of those with persistent heartburn / reflux develop Barrett's.   And then, if one does develop Barrett's Oesophagus it is normally a very slow moving thing.  Most people die with it rather than from it.   The risk of developing oesophageal cancer from it are low.   It is about 0.3% in any one year, and cumulatively, if somebody aged 30 years develops Barrett's there may be an 11-25% risk of developing cancer by the time they reach 80 years of age.   It all depends on whether dysplasia develops or not.   But being diagnosed with Barrett's and then being monitored, more or less indicates that any cancer is detected at an early stage when the outcomes are good.   Barrett's can be treated with radio frequency ablation nowadays, so the prospect of automatically having the oesophagus removed when high grade dysplasia is found, no longer applies.   There is an issue of uncertainty about which patients progress to cancer or not, and there is a certain amount of help from genetic analysis that accounts for some of the risk.   PPI medication does, I believe reduce the risk of progression to cancer.

      ?So thinking through all that, and all other things being equal, I do not think that one should worry overmuch about developing Barrett's.   It is quite easily seen with an endoscopy, and can be addressed if and when it happens.   

      ?The worries about PPI medication are probably overblown.   There are a lot of people on them that should not be.   They do tend to reduce the absorption of calcium, so one might need to take countermeasures if one is worried about osteoporosis long term, an they can change the balance of bacteria in the gut, so there may be some issues around that, but if one takes them without immediate side effects, and has them reviewed every so often, it should be OK, and the benefits in reducing reflux should outweigh any disadvantages.  This is the kind of risk that prescribing doctors should do with us.

      ?So my instinct, with apologies for the long post, would be to concentrate on reducing the symptoms from achalasia as far as possible as the threat to health and well being is greater from that direction.

       

       

      Report
    • Posted

      Thanks as always Alan..Good info for everyone! 

      I will digest (no pun intendedsmile and see if any further thoughts arise..

      Warmest,

      Neil 

      Report
    • Posted

      It seems there is a delicate balance between a) waiting until symptoms are bad enough for surgical intervention and b) getting the surgical intervention while the esophagus is "healthy" enough for the best surgical outcome.

      Thank you so much for all the responses in this thread as it will be helpful to have things semi sorted when discussing further with my physician.

      Best,

      Jeannie

       

      Report
    • Posted

      I'll tell you what gives me the worst kind of heartburn.  Frosty types who can't imagine that not all peoples share their national lack of warmth and mistrust.  The same types who must construe friendly interest as "surely wanting something" and respond with the deep-freeze of "ignore".  Those who exchanged one organization for another and now can't start the day without a liberal dash of horrid illness in their morning cuppa. :-(

      Report
    • Posted

      Neil,

      Thanks for the reply. So you have had no dilations or botox? Do you have an endoscopy annually to monitor for Barretts and mega esophagus? Do you wake in the night choking from aspiration? I have done that a handful of times and is pretty scary. I have noticed it less with not eating before bedtime. Sometimes that's hard to do though. If you don't mind sharing, how long have you been diagnosed?

      Thanks in advance!

      Jdbax

      Report
    • Posted

      Hi again,

      Happy to share...My history with ref to your questions: I was 'diagnosed' (I struggle with that term a bit really - for conditions nobody understands) about 15 years ago after about a year of suffering the classic symptoms inc aspiration at night and regurgitation after food - I could barely eat for a year... At the time PPIs were not quite on the streets so acid was a big problem for those that had surgery. At that time the forums were a pretty negative place. Not so much the case now due to PPI acid control- to add to your dilemma (but I guess that can only be good)... So with the hand of my GP we decided I could try alternative treatments for 6months and then divert later if required.. I tried a therapy called Bowen that had some good results- and led me to be able to swallow with assistance of a manoeuvre - where I raise my arm or shoulders and gently push down.. It was (and still is) enough to get by.. I ended up just soldiering on with basic advice from my gp to avoid acidy stuffs. I also recently started to use calcium channel blockers (lowest dose) which seem to really help...I have days occasionally now that feel normal... I never suffer from acid and very rarely coughing, but yes, stretching of the Oesophagus is a worry... I will never know for sure as I never had regular bariums but I think my O was stretched pretty early on, and is still over sized. I had an Endoscopy, and Barium earlier this year.. My O is 'large and inflamed' and Dr recommended the usual A treatments - botox, dilation, surgery etc which I am still considering (although maybe in denialsmile... Problem is that is more or less what they said 15 years ago, so a tough one for me since I have got here without it... I know others that are untreated; I guess the main symptom driving our decision not to have treatment is our ability to swallow; if food wasn't going down somehow, I am sure we would have all had treatment by now! .. Personally, I feel my main concern is lack of drainage. I know for sure food is always there. I try to mitigate risks of irritation by trying to keep to ph7 ish foods, and keep plenty of fresh water going through..I also chew Gaviscon tabs, as they apparently neutralise chemicals that may form in there... As per my earlier Questions, I am yet to find a detailed professional account on risks from food irritation Vs acid irritation - seems a very grey area (my gp was happy to support it under her advice but...)..Most of my account however is mainly speculation and I would never wholly recommend my way is the way to go- as I honestly have no idea- I remain in the balance re surgery myself..I will have another Endoscopy next year- but not looking fwd to that..smile ... I guess you could try alt therapy or CCBs in the short term, but if you do, it would feel much better having at least your GPs support... If I was to have treatment I am pretty sure I would go straight to surgery now, but everyone is different as you know.... 

      Wishing you healthy karma, and hopefully a fairly issue free Xmas breaksmile 

      Report
    • Posted

      Hello, I have Achalasia and recently after another EDG endoscopy I was diagnosed with Barrett’s. Speaking from my experience with Achalasia and Barretts, I’ve never had heartburn or acid reflux (that I felt and needed anti acids) My esophagus just gradually got worse and stopped allowing anything through without great discomfort, total closing off or ending up throwing up. 

      I’m waiting for my surgery, during the wait it’s gotten so much worse and I think what Alan mentioned, medications that are in pill form, just sit there at the bottom slowly dissolving. I now have liquid medication. Food that would hang out there before I either threw it up or it eventually dissolved caused a lot of irritation. 

      This past year has been agonizing dealing with this, I look forward to getting the POEM. 

      I know one surgeon was sure I had a lot of acid reflux and heartburn based on just he consult but after all the EDG’s, EUS, esophageal manometry, etc. saw that my esophagus has really deteriorated and I’ll have to watch for acid reflux I guess after the surgery. I don’t know, I get different opinions from the team. But everyone agrees that the Barretts diagnosis is from all the irritations, whether medicine, liquids or when I used to be able to have solid food. All just laying in there irritating my esophagus. 

      I’m fortunate the Achalasia diagnosis was seen quick and I wasn’t mis diagnosed anything. I have Lupus as well, that doesn’t help matters. 

      I feel pretty optimistic though. Barretts caught early and will soon be getting the surgery. I understand it’s not going to cure all, and I will have issues with reflux, etc. but to answer your question from my experience, I don’t have heartburn, but medications and liquids or light foods or soups can hang up down there and cause bad irritation. For the last 8 months I’ve been exclusively on protein smoothies, water, Boost Breeze juice. 

      Keep healing and I hope it continues to get better for you. Susie 

      Report
    • Posted

      It is unusual, I think, to have Barrett's and achalasia together, but what you say about the irritation is logical.

      ?Barrett's is a lesion that is only really important because of the cancer risk, but that can be a very long term thing.   There is more information on the website Action Against Heartburn..   Statistically the risk is 0.3% per patient year from Barrett's that is not complicated by having dysplasia.   Somebody aged 30 years with newly-developed Barrett's may have a 12-25% chance of developing Barrett's by the time they are aged 80, but the critical thing is whether high grade or low grade dysplasia has developed.   

      ?So the best thing is probably to find out whether biopsies have indicated whether there is any dysplasia or not, and then concentrate on the root cause of your oesophagus not working as it should because of the achalasia.   All other things being equal (which sometimes they are not) there ought to be plenty of time to monitor and manage the Barrett's issues after your main problem has been addressed.

      ?There is the prospect of radio frequency ablation for removing dysplastic Barrett's oesophagus cells, but I would not be surprised if this is not a realistic prospect until the other aspects have been cleared up.   There might, in any event, be technical issues about whether the ablation would cause damage to the nerve endings  and make the achalasia worse.

      Report
    • Posted

      Hi Alan, what are the percentages for a person to have Barretts and achalasia together? I, too, have both and was just curious since you said it was unusual. 
      Report
    • Posted

      I honestly do not know.   I have always thought that the tightening of the lower oesophageal sphincter would tend to reduce acid reflux and therefore the chances of Barrett's Oesophagus developing.   But I will ask around and let you know if I hear anything helpful.

      Report

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up