Stobborn or Realistic

I am new here - 53 year old, female. Diagnosed with Achalasia almost 3 years ago. Have had 5/6 dilatations to date. Space in between usually about 2 months of ok eating, then 4 or 5 months gradual decline. Surgeon wants to another dilatation. I have said "no more". I am surviving on prescribed drinks from dietician/GP, tea and water. Consultant not keen to do Hellors myotomy because I have other medical conditions and anaethetic not good.....but am aneasthetised for dilatation. I think I can manage on prescribed drinks. Food has become a burden - not at all pleasurable. Am I being realistic - can I manage this way ? Or am I being totally unrealistic ?

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  • In normal circumstances it is not a good thing to have too many dilatations as the area can become fibrous and it reduces the chances of successful surgery if that should be needed and be a realistic prospect at a later date. But, having said that, some people do continue with periodic dilatations.

    All things being equal, your condition is not likely to improve on its own, but you may be able to manage it by being careful about the texture of the things you swallow, and avoiding stringy food, things with skins, stuff like bread that might congeal and so on. Eating little and often and the prescribed nutrition drinks. And trying some form of relaxation therapy to mitigate some of the effects.

    Ultimately, though, if you do not manage to take in nutrition and your oesophagus becomes unmanageably baggy you might run out of options and might face having to have surgery. This ultimately could be removal of the oesophagus, which is much more major surgery than the Heller's myotomy.

    So in the short term you will probably be OK, and hopefully your other conditions will improve in the mean time, but this is should really be the subject of discussion between you and the surgeon

  • Thank you so much AlanM. These are all things that I was thinking, but couldn't put together as clearly as you have. Unfortunately I am at the stage that anything less textured than the drinks I can swallow but have terrible chest pain which goes up my neck and along my jaw, lasting from 10 minutes or so, to several hours. Even if I rush the prescribed drinks or a mug of tea too quickly, they either sit there for a reasonable time before they pass through, or I regurgitate some or all of it. Unfortunately also my other conditions are unlikely to improve - but I still think I would rather have the Hellers Myotomy as apposed to my oesophagus removed....so it kind of makes sense to me that we don't go on repeating the dilatations, until scarring makes that an impossible option. The plan at the moment is that I go for a barium test on Tuesday, and the dilatation on the following Monday. If, however I still am of s mind to "postpone" the dilatation, I have to phone tomorrow and arrange another appointment with my surgeon instead. You have helped me see clearly that this is what I want to do. My slight concern is that this will lead to either NG feeding or PEG feeding, but still, I feel that even if it came to that, I would still be doing what is best for me at this moment in time where eating just seems like my biggest battle. Thank you so much once more for your time and the clear way you explained things.

  • The painful spasms can be improved sometimes by medication such as Buscopan. Some people find that eating a banana helps against the spasms. It is not going to be easy for you, but I send my best wishes

  • I am on a medicine called Adipine MR, and I think it helped a little. Since only having the prescribed drinks and tea or water, I must say that the number of times I get the pain has reduced significantly, and the "bouts" don't seem to last so long when I do get it. You will have seen my reply to the other person who was kind enough to respond and know what I've decided to do in the meantime. You have helped me a great deal, and I can't thank you both enough.

  • AlanM, I am so new to this that I don't k ow if you can read my responses. I would really value YOUR thoughts. I had my Barium test today and the first swallow of Barium went through the LOS okay, but the second and third just sat in a pool ..They waited a few minutes, but it didn't disperse. The doctor said that he would try and get my report to my surgeon today or tomorrow, and I was to phone his secretery in the next couple of days. I am presuming that the sphincter must be open since the first lot went through - so no need for another dilatation? But there must be a problem with the peristalsis pushing it through, and I thought there was nothing they could do for the lack of peristalsis - so where to now??? I feel really bagged up and bloated tonight and have felt sick since having the test though that's not so bad tonight, but I have an annoying nightly pain in my left side which I have never had before. I may have phoned NHS 24, but I am a minister and have a funeral in the morning, and I'm frightened of being whisked into hospital!!! If you have any thoughts, I would be happy to hear them.

  • This is complete unqualified speculation, but it might be that the first barium swallow went through OK because the LOS was fairly relaxed, but then it somehow caused a reaction / fatigue in the LOS and it reacted by tightening? But I do not really know. It might seem consistent with having to eat just small amounts at any one time though.

    It would also emphasise that if you try and eat a 'normal meal' the pressure in your oesophagus would increase until this could only be released by regurgitation upwards?

    The pain might be referred pain that travels along the nerve system to somewhere else rather than the site of the problem.

    I am sure your job is full of tension, and can be an unstructured, lonely and responsible one in some respects, but having to be on public duty for an emotional occasion would create tension in most of us in some way or another, and this does not help in coping with the swallowing difficulties. Having time to fully unwind would also be helpful, but I an sure you know all that already!

  • You cannot sustain yourself long-term with your current regimen.

    The aenesthesia for dilation is comparatively light and so is not comparable to that required during an open myotomy.

    But a laparascopic procedure is less onerous. Is that latter what your surgeon is reluctant to proceed with?

    It is good that your surgeon is not gung-ho! Ask him how many open and how many laparascopic Heller he has carried out. If his answer is more than 50 Laps then his caution about you is well placed and you should be guided by that; but if it is fewer then his reluctance may be due simply to unfamiliarity when you should seek a more experienced practitioner.

    Here is the standard description for the modern operation:

    Heller myotomy is a surgical procedure in which the muscles of the cardia (lower oesophageal sphincter or LOS) are cut, allowing food and liquids to pass to the stomach. It is used to treat achalasia, a disorder in which the lower oesophageal sphincter fails to relax properly, making it difficult for food and liquids to reach the stomach.

    History and development

    It was first performed by Ernest Heller (1877–1964) in 1913. Then and until recently, this surgery was performed using an open procedure, either through the chest (thoracotomy) or through the abdomen (laparotomy). However, open procedures involve greater recovery times. Modern Heller myotomy is normally performed using minimally invasive laparoscopic techniques, which minimize risks and speeds recovery significantly.

    Procedure

    During the procedure, the patient is put under general anaesthesia. Five or six small incisions are made in the abdominal wall and laparoscopic instruments are inserted. The myotomy is a lengthwise cut along the oesophagus, starting above the LES and extending down onto the stomach a little way. The oesophagus is made of several layers, and the myotomy only cuts through the outside muscle layers which are squeezing it shut, leaving the inner mucosal layer intact. This procedure can also be performed robotically.

    Risks, complications, and outlook

    There is a small risk of perforation during the myotomy. A gastrografin swallow is performed after the surgery to check for leaks. If the surgeon accidentally cuts through the innermost layer of the esophagus, the perforation may need to be closed with a stitch.

    Food can easily pass downward after the myotomy has cut through the lower oesophageal sphincter, but stomach acids can also easily reflux upward. Therefore, this surgery is often combined with partial fundoplication to reduce the incidence of postoperative acid reflux. In Dor or anterior fundoplication, which is the most common method, part of the stomach (the fundus) is laid over the front of the oesophagus and stitched into place so that whenever the stomach contracts, it also closes off the oesophagus instead of squeezing stomach acids into it. In Toupet or posterior fundoplication, the fundus is passed around the back of the oesophagus instead. Nissen or complete fundoplication (wrapping the fundus all the way around the oesophagus) is generally not considered advisable because peristalsis is absent in achalasia patients.

    This is a somewhat challenging operation, and surgeons have reported improved outcomes after their first 50 patients.

    After laparoscopic surgery, most patients can take clear liquids later the same day, start a soft diet within 2–3 days, and return to a normal diet after one month. The typical hospital stay is 2–3 days, and many patients can return to work after two weeks. If the surgery is done open instead of laparoscopically, patients may need to take a month off work. Heavy lifting is typically restricted for six weeks or more.

    The Heller myotomy is a long-term treatment, and many patients do not require any further treatment. However, some will eventually need pneumatic dilation, repeat myotomy (usually performed as an open procedure the second time around), or oesophagectomy. It is important to monitor changes in the shape and function of the esophagus with an annual timed barium swallow. Regular endoscopy may also be useful to monitor changes in the tissue of the oesophagus, since reflux may damage the oesophagus over time, potentially causing the return of dysphagia, or a premalignant condition known as Barrett's esophagus.

    Though this surgery does not correct the underlying cause and does not completely eliminate achalasia symptoms, the vast majority of patients find that the surgery greatly improves their ability to eat and drink. It is considered the definitive treatment for achalasia.

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    Have you got good family/friends support?

  • Here are some comparative statistics:-

    The treatment options include botulinum, bougie dilation, and laparoscopic Heller myotomy.

    Of these, the laparoscopic Heller myotomy offers 77-100% resolution of symptoms at 5 years, and 75% at 15 years. It carries a 6.3% risk of complications and 0.1% risk of mortality.

    Botulism toxin injection is effective to 85% initially, but 30% at one year.

    Endoscopic dilation is 15-58% effective at 10 years, but may require multiple dilations. The effect is 13% after the first treatment, and carries a 1-5.6% risk of perforation.

    Source: Society of American Gastrointestinal and Endoscopic Surgeons

  • Wow !!! That's a lot of information!!! That must have taken you a lot of time and effort to reply, and I appreciate it very much. I decided this morning - as per instruction - to phone my surgeons secretery and have decided to go ahead and have the barium test tomorrow, then I have asked that they postpone the dilatation and make an appointment for me to go and speak with the surgeon instead - with all my information and questions to hand!! One thing I did want to ask you though is, that my dietician had told me so long as I could drink 4 or 5 prescribed drinks each day, that would have all the nutrition I would need, and went on to say that would be the cased for months and months! I have to say my GP was a wee bit more sceptical about that!! That's where I picked up my concern about NG tubes and PEGs!! Thank you so much or giving me much to think about. Hopefully the discussion with my surgeon goes well. I do have a very supportive family also - but their anxiety sometimes clouds their thinking. I know it's just because they care and it can't be nice for my two daughters (17 and 18) hearing me wretching and watching me try to swallow some mushed up whatever or in pain for most of the past three years, but with their unstinting love and care and being more informed, hopefully I will see the correct path to take. Once again, many thanks.

  • It was very smart of you to go ahead with the Barium swallow - this should give a good picture of the size and shape of your oesophagus. You have a right to a digital copy of the pics on disc.

    With this info your surgeon will be able to make a much better evaluation.

    Re malnutrition....sure it says on the packet that technically you are getting everything needed theoretically to stay alive but I would be concerned about compensating for losses due to your D and V. I had in mind particularly the psychological aspect of being unable to enjoy food and share that bonding with your nearest and dearest.

    All the best and please let us know how you get on.

    PS: I prepared a set of diagrams and pictures of the LHM, but found I couldn't post them on this site , owing to resolution limitations- if you would like me to email these in PDF format let me know (via the private channel?).

  • When you see your surgeon you should also ask him about his views regarding fundoplication.

    This is an additional procedure carried out after completion of the Heller.It entails attaching a portion of the top of the stomach around the lower eosophagus where it acts as a sling support for the now cut (Heller) Lower Oesophageal Sphincter. The purpose is to minimize reflux which could otherwise lead to oesophagitis progressing to Barretts and thence a malignancy.

    If he is an advocate of this extra step does he favour the Dor (Anterior) or Toupet (Posterior) method. This could make a big difference to your quality of life post-op.

    All of the foregoing depend upon what is the current condition of your oesophagus.

  • Had my barium this morning. Doctor said that the first swallow of barium went through the LES fine, but the second and third swallow just made a pool and sat there. They waited. Bit to see if it moved, but it didn't. Doctor said he would get the report to my surgeon later today or tomorrow, and encouraged me to phone his secretery in a couple of days time. He advised me that warm drinks were probably better that cold ones and to sip at them slowly.

    What does this mean? If the first bit went through the sphincter can't be blocked, therefore would a dilatation make any difference? Does it not sound more like the problem is the lack of peristalsis - and I think I am correct in saying that nothing can be done for that? Please help me understand before I need to go and discuss this with my surgeon!!

  • Well, your knowledge is certainly advancing but if I could answer your question definitively I would be rich and famous, quite possibly Sir Gutless.

    Why? The workings of our gut and all it's interactive components are astonishingly complex. So much so that I doubt it will ever be completely understood. There are just so many dynamic permutations cross-linking continuously with multiple feedback loops.

    Did you know that the GI Tract has it's own brain, busy doing it's own thing but closely wired into the main brain in our heads. This gut brain is about the size of a cat's brain and, as we all know, cats ain't stupid.

    This is an interesting and important subject, deserving of a post in it's own right. I will try to produce this in the coming day or two. Watch this space.

  • Hello I have had Achalasia for more than 35 years: my specialist advised me not to have more than 2 dialations. The spincter muscles get flabby and must then be operated on.He advised me to skip any acidic drinks (only drink good wines) and foods including orange juice. Drink water with your meals and take a tablet of Omeprazole 10mg every morning before eating. Sleep with your head at 30 degree position.Hope you feel better after this.

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