(Relatively) New achalasia diagnosis

[theswallow]

Hi, I was diagnosed with achalasia just before the lockdown-I have Type 2 achalasia. My symptoms seemed to rapidly worsen since diagnosis and as surgery is not an option currently with the coronavirus situation, I had balloon dilation under radiological guidance. The procedure was fine and I don't have any pain/discomfort from it. But two days post-procedure and I don't feel much benefit in terms of food intake. Still struggling with solids and some liquids. Has anyone had this done? Does the swallowing improve with time? How long should I wait before I contact the surgeon? Thanks for reading.

[neil-acac Administrator]

Hi, I think cases vary after dilation , so its hard to say. Most do report improvements straight after the procedure though.. I wouldn't hesitate to follow up with your consultant asap!... Keeping your calorie intake is key if you are struggling to intake.. Do contact [e-mail] if you would like to chat to the charity direct....

Warmest,

Neil

[theswallow in reply to neil-acac]

Thank you!

[Alan_M Partner]

I love the name 'The Swallow'!

There are great backlogs for endoscopic procedures at the moment, and perhaps for the foreseeable future because it involves medical staff and a patient's airways, representing a risk of aerosol-borne COVID19 infections. Having said that, they are trying to get back to seeing as many people as possible, and a limited number of surgical operations are now starting. So the short answer is to go straight back to the consultant and report the lack of benefit from the dilatation.

Dilatation is a commonly done procedure. It is not unusual for the benefits to be temporary, but the 'relapse', if that is the right word, normally comes sometimes weeks or months later. So the fact that it has come much sooner for you may indicate that it would be better to have surgery sooner rather than later, depending on what your surgeon says. The fact that you have already seen the surgeon does work in your favour I think.

Some people get by over a number of years with dilatations every so often, but the more dilatations you have, the less easy it is for the surgeons to carry out a future operation like a Heller's myotomy / fundoplication. This is because the affected part becomes a bit fibrous. So there is a good argument for going right away for a procedure that represents the best long term solution.

Achalasia is all about how the muscles work in your oesophagus, and it is not the muscles themselves but the nerve endings that are the real issue. So tension, anxiety and stress can often tend to make the situation worse. This is likely to be the case indefinitely, regardless of what procedure you have done. So as well as contacting the surgeon, try finding whether some form of relaxation therapy might suit you.

It would also be worth reverting to liquid, slushy food for a while just in case there is swelling around the lower oesophageal sphincter or some temporary reaction to the dilatation that is making things worse. It will give your system a chance to settle down perhaps. Worth a try, just in case.

And try to avoid food that is stringy, or has difficult to digest skins (like tomato), or congeals like white bread, rice and so on.

[theswallow in reply to Alan_M]

Thank you Alan_M, for some helpful tips and your advice. I now have a date for surgery next week. Hopefully, it will improve things for me. Meanwhile, I am back to liquids only.

[Daybydayinfl]

I had the dilation in March and saw Dr today and he feels it needs to be dilated more on 4/28. Seems close together to me but what do I know. They have been doing this for years and years. So I just wanted to assure you it helps but I find it doesn't last very long. Chin up im praying for you. Susie

[theswallow in reply to Daybydayinfl]

Thank you Susie. That's very kind of you. I hope you do get some relief after your dilatation. I am beginning to believe more and more that dilatation isn't going to work well for me. I have had the Heller's myotomy (in July 2020), and after a few initial hiccups postoperatively, I was doing okay. I still couldn't eat high-fibre foods like bread, roti (I'm Indian) or even pasta/noodles, but I didn't mind that too much. I'd occasionally get some chest pain or burning, and then I'd restart omeprazole 20 mg twice daily for about a week and then it would be okay. In the last few weeks, however, I feel like things are deteriorating. I can feel the saliva and sometimes food regurgitating, particularly when I bend down. The chest pain and burning is back and as bad as it was pre-op. So it's back to only drink supplements in the evening, regular omeprazole and sleeping upright all night. I have my next follow-up appointment in two week so I'll see what they say. I'd like to avoid any more procedures for a little longer-I've set my own personal target of at least one year post-op (!) - only another 3 months to go!

[Breezo]

Hi, i didn't get any benefit from dilatation at all. I had POEM procedure at the end of December and had excellent results, can now eat most things. Not perfect but it never will be, but far better than I expected.

[theswallow in reply to Breezo]

Thank you Breezo, that sounds promising. I hope all stays the way it is, for the longest possible time.

At the moment I'm experiencing what I think is deterioration in my relatively good post-operative symptoms. I'll just have to make the most of the way my swallowing is before it gets even worse!

[Daybydayinfl]

I've been getting dilation for 15 years every 3 or months. Now with the aculacia I was put in hospital the first and stretched and three days later had the POEM PROCEDURE. Does feel like I'm better but they said have to a major surgery after that camera up my nose. Then my dr got dr Jin bang from the Tampa swallow institute to build a team to do the esphofagus something surgery in Orlando Florida and he says she is the best in the world as she had a hand in perfecting this procedure ill be having in June. All is happening so fast and can anyone tell me if they had the esphofagus procedure how was the recooporation time like? I am scared as I live alone and would love some feed back. My diet when they finally let me go home on mothers day. Thank you all for your support and feedback.