How long did it take before you were diagnosed?

[Alan_M]

This is something of a plug for the first poll in our new community.

At support meetings we often find a great disparity and range in how soon people got diagnosed with achalasia. Sometimes this is because people were wrongly thought to have some form of eating disorder, for instance. Sometimes it can be months and years before people are finally told what condition they are suffering from.

It is a bit unlikely that anyone would even have heard of achalasia until they were diagnosed, or it was suspected by a doctor and it is a very unusual / rare condition.

So please look to the right hand side of our Achalasia Action homepage

healthunlocked.com/achalasi...

Look for Latest Poll - How long before you were diagnosed.... and click on the Vote button.

One of the advantages of this HealthUnlocked community is that the polls can give us some interesting insights into the problems faced by those living with achalasia, and we will no doubt have more polls in the future.

[Steve-C]

Hi Alan

I’ve held off replying as it’s rather complicated and needs words to explain. But here goes...I had a couple of instances of choking, on a mince pie and, later, a baguette. This was about 3-4 years ago. After seeing a GP for the second time I got referred to ENT. The ENT man said nasopharyngeal examination was ok but he wanted a barium swallow. I actually aspirated some barium and the test showed a large osteophyte complex at C3/C4 level. This is in effect part of the vertebrae sticking out just above the entrance to the food pipe. An ENT registrar said there was nothing to be done but I wrote to the consultant who referred me to spinal surgery. NHS waiting lists are enormous here so I went private and was told it could be operated on but it involved cutting into the neck, near nerves and the carotid artery. I decided to see how things went and for a couple of years was fine, though gradually swallowing got a bit more difficult and effortfull.

On April 1st 2018 I had fairly severe central chest pain after a meal. This occurred a number of times and I went to see a GP who said it was gastritis and gave me Lansoprazole. This did not help and I was worried and so saw a different GP and asked for a private referral to a gastroenterologist (because of waiting times again). When I saw him a week or so later I said I was worried as years ago I had had h pylori diagnosed and was given medication but not followed up. He said he felt sure the treatment would have worked as I had had a stool test on 1st April which showed no h pylori. He said he’d do gastroscopy but couldn’t get safely past the osteophyte so arranged a videofloroscopy which showed a slow opening los. By now I was absorbed as an urgent in the NHS. The endoscopy was repeated, this time successfully, by a specialist registrar using a smaller nasopharyngeal endoscope. The report said ‘suspicious for Achalsia’. I then had a CT scan to check for pseudoachalsia. And finally onto manometry which indicated atypical achalasia. All these things were weeks apart and it was late June 2018 when the gastroenterologist finally diagnosed ‘probable early achalasia’

So I don’t know if the initial choking 4 years ago was actually just the osteophyte or partly very early achalasia. But from initial chest pain to diagnosis was three months.

I did say it was complicated; and so I now have issues at top and bottom of the oesophagus.

Exactly what to do about the Achalasia is another tale....

[Alan_M Partner in reply to Steve-C]

Sorry for the delay in relying, and I hope that things improve for you.

This is rare, and I do not know enough to be able to comment very helpfully, but I imagine that the bony projection could have an effect on the muscles (and/or nerve endings controlling the muscles) performing the peristalsis function of the swallowing. I can also imagine that the surgeons would indeed be wary about risks of a surgical solution, but they would be best to reassure you about that as they must be coping with those risks all the time with vertebrae.

The issue of h pylori can be solved with medication so that sounds relatively straightforward. Then there is the risk of undigested food creating problems within your oesophagus so the aim should be to try and avoid any food that tends to stick and congeal (like rice, white bread), or with a texture that makes it difficult to swallow (eg tomato skins, stringy runner beans, some types of meat). I wonder what the precise cause of your swallowing difficulty was with the mince pie and baguette? I wonder if tension in the system might cause the lower oesophageal sphincter to close?

Try and avoid getting your oesophagus inflamed through any effects of acid reflux. Sometimes Gaviscon can help. There is a proportion of people who do not respond to PPI medication like lansoprazole or Esomeprazole.

I do not know whether this is possible or not, but it might be feasible that a dilatation of your lower oesophageal sphincter might be achieved with the smaller endoscope - I just do not know.

So by and large the aim would be to try and manage your problem without resorting to difficult procedures, but I can see that this is easier said than done.

[Steve-C in reply to Alan_M]

Thanks for your reply Alan. Unfortunately things have been getting worse. I now realise I was probably lucky compared with most Achalasia patients in that provided food was chopped up a lot and eaten slowly I could get by. But swallowing has got worse and I’ve had some chest pains more intense than in the past, including some awful night pain, combined with a feeling of food blockage. I had to go to A and E feeling that the oesophagus was inflamed. The gastro registrar said as long as I wasn’t vomiting, and could still get food and drink down it was probably ‘just ‘ a bit of inflammation and to drink plenty of water.

In any case I’m due for another barium swallow next week as it’s been 15 months since diagnosis and the surgical registrar wanted,as I did, to see how things are now.

The A and E registrar did suggest thinking about getting the osteophytes sorted first but all other opinion including the spinal surgeon was to get the los sorted first. The NHS spinal surgeon said he had done 10 ops of which 8 were ‘successful’. ‘You do realise that this operation could make your swallowing worse’ he also said.

So really it seems to be down to just managing, or myotomy. (Not being able to get a tube down past the osteophytes is limiting possibilities so I see the A and E doc’s point).

I think the way things are going I’ll be choosing myotomy.

[Babz7019 in reply to Steve-C]

it is so difficult this condition Achalasia I have had 2 ops HM with rap

N partial oesophagus removed November 2022

This has made it worse as they took away the oes so acid just keeps pumping up ! Have tried to get in touch with the surgeon but he rarely gets back to me .

Have spent 5 days now pumping up acid which means I have no social life

[Alan_M Partner in reply to Babz7019]

I am interpreting what you write as you have had two operations equivalent to Hellers Myotomy with fundoplication / wrap, and then a partial oesophagectomy. I am assuming that it would be the lower part of the oesophagus that has been removed? And that you now have a serious problem with reflux. If the lower oesophageal sphincter has been removed you are indeed very likely to have a significant reflux problem, and the most likely approach would be for a prescription for Omeprazole, or another PPI (proton pump inhibitor) medication that will reduce the amount of acid produced by your stomach. There are a number of PPIs available, but also some other approaches. Try taking Gaviscon Advance , for instance, which you can get over the counter from a pharmacy; this may well work for a few hours.

[Babz7019 in reply to Alan_M]

Thank you I am on Esomeprazole 40mg twice daily + Gaviscon Advance

After meals ...but the acid keeps pumping up .as the OES was removed .

[Alan_M Partner in reply to Babz7019]

Are you sure that it is acid rather than bile reflux (alkali)? You can ask for a test for this. There are some people who have oesophagectomies who get troubled by bile reflux. The PPIs will not counteract it, but the Gaviscon Advance should give temporary relief. Either way you need to see somebody who will sort this out.

[Daybydayinfl]

I have MS and they have been dilating my throat every 3 to 6 months for years and years and once in dec and again in feb causing a tear superficial yes but my throat is yucky tasting and I sound like an obscene phone caller when I speak. I had expressed my concern before he began but the gastro tube would not even pass so he dilated me again. I have lost the usual brief relief I use to get a long time ago and I'm to continue liquids since before December. I'm 68 and now have gotten a diagnosis following a six minute swallow test. Did Noone ever think of that through all these years and also have a motility issue and this sat. Have to go have a camera inserted up my nose for more information. I also was put on blood thinners for life and have in dec. Developed blood clots in my lungs and behind my eyes. Is this a condition that people are deemed disabled and how long have I had it? I think I was answering a question but ended up venting a bit. Chime in anyone as I feel like a yoyo and when at 68 to discharge me in fifteen mins. After diagnosis with no plan or booklet which I guess there aren't any or few. I also am on 2 oxygen indefinitely. Penny for your thoughts...God bless us all. Susie

[Alan_M Partner]

Unfortunately conditions like MS can create swallowing problems as a completely separate cause from achalasia, and your voice can get affected by reflux around (or some form of damage to) the vocal cords. They tend to give an endoscopy as a first port of call to see whether there are any physical obstructions, but it is true that in some cases a barium swallow test would give a good or better picture of what is happening. Unfortunately some people like yourself have a number of conditions that makes things complicated for working out what best to do for treatment. Sometimes the doctors have to take things in stages and try to get the optimum result for one condition at a time. Having a tear from an endoscopy can be a very nasty business indeed and hopefully it is indeed superficial and will heal itself, but it might take time. Meanwhile it might be prudent to check on whether you have a problem with acid reflux; trying Gaviscon Advance might help, but you will need to be careful and keep consulting your doctor. You might have to sleep propped up in bed to make sure that reflux does not creep up into your airway/lungs when you are horizontal in bed. I hope that things get better for you soon.