Dysphagia not improving

[Mummatotwo1922]

Hello. I wondered if anyone has experienced anything similar? I started with dysphagia at the start of December and got referred for endoscopy under the 2 week wait for suspected cancer. Had endoscopy and it was clear for cancer but I have a 3cm hiatus hernia and got put on PPI (lansoprazole). I’ve also seen ENT for a nasendoscopy which was clear for any abnormality. I’ve been taking lansopraazole for about 3 weeks now and still struggling to swallow food. Has anyone experienced similar and ever found out what is causing it? I’m not convinced that a hiatus hernia can cause me to struggle swallowing, but just following the advice of the endoscopist for now!

thank you

Have you been referred for a barium swallow? That can give a more detailed picture of which parts of your oesophagus/upper gastric area are not working properly. I am on a similar pathway and still trying to get to the root of it, but the barium swallow showed the dysphagia was not down to the hiatus hernia, but to muscles lower down.

That’s interesting thank you. When I saw the ENT consultant he said he wasn’t going to refer me as he didn’t think it would show anything. He’s put me down for follow up in 6 months but said to contact his secretary if it doesn’t improve after a few weeks of meds (he switched me from esomeprazole to lansoprazole about 1 week ago). So I’m going to give the lansoprazole a few weeks and if no improvement contact his secretary and hopefully refer for barium swallow. What does your dysphagia feel like? Mine is almost like I’ve forgotten how to swallow - I can’t seem to coordinate moving the food to the back of my mouth and swallowing it

I've had it for 20+ years and never been offered testing! It's really common

Have you seen speech and language therapy? Had a barium swallow? I would be pushing for these and looking for answers. I do see a lot of people with sometimes total dysphagia which spontaneously resolved so I would keep on with the PPI (what dose?)

could it be neurological in origin?

Yes, that's exactly what mine is like - 'forgotten how to swallow'. I also get frequent hiccups when I am trying to eat, and then it feels as though the food is stuck and not going down. When I had my endoscopy, I hadn't eaten anything for about 15 hours as it was mid-morning and I hadn't had breakfast, but I immediately started vomiting up food remains, so it clearly isn't going down as it should because I'd only been told I needed to fast for 5 hours, it was just the timings meant my last meal had been the previous evening.

That's what they're now looking into with mine.

I'm.a SALT working with adults. I obviously can't give specific advice but I hope you're somewhat reassured by the investigations you've had. Crap to have to still live with it though. I hope the PPI course improves things. Are you managing to maintain your weight?

I'm afraid dysphagia really can be functional or psychological. But that shouldn't be the end of the conversation, but the start of a different one.

I haven’t seen SLT but my good friend is a SLT so I have been chatting to her and she doesn’t think it sounds neurological in nature. As mentioned above the ENT consultant didn’t refer for barium swallow but is happy for me to contact his secretary and ask for one if things don’t improve on PPI. I’m taking 30mg lansoprazole. Had tried esomperazole 15mg before this

Thank you. Yes I am somewhat reassured but I’m just afraid to be putting all my eggs in one basket and relying on it being this hernia and waiting for PPI to work/not work, incase something else is going on that we haven’t investigated. The ENT consultant done nasendoscopy and said everything looked perfectly healthy and he didn’t see the point in referring for barium swallow at this time, but would you suggest I push for this?

It’s reassuring to hear that someone else is experiencing it the same way as me - although I know that doesn’t help either of us! I always struggle to describe the feeling and feel like people look at me when I’m mad when I say I’ve forgotten how to swallow. What neurological investigations are you having if you don’t mind me asking? Do you have any other symptoms at all?

It is hard to describe to people who haven't had it but I knew just what you meant as soon as you described it! I've just had a manometry test (which was worse than the endoscopy as they can't give sedation for it) and I'm waiting for the results of that, which I am hoping will give my consultant some direction on where to go next. I don't have any non-gastric symptoms. My consultant had mentioned the possibility of a Nissen's fundoplication, but he's not sure whether that would actually improve anything - he said there's a danger of it making things worse depending on where the problem lies.

'The ENT consultant done nasendoscopy and said everything looked perfectly'

Nasoscopes only go so far though. Imo you need more investigations, at least a tracheoscope (you'll need a GA and a be admitted as a daycase) to get past the vocal cords and see if there's any anatomy issues past the larynx. Or a CT.

I would push for more. Dysphagia can of course be caused by many things but I think they really need fo be proactive and rule more things out rather than watching and waiting.

Thank you, I’ve also had a full upper endoscopy so oesophagus, stomach and duodenum. All ok apart from the hiatus hernia! I’ll get back in touch with the consultant and see what other tests I can get

Thank you. It’s interesting that your consultant is doing more and mine has just basically said take PPI and see. But I think that’s because I have this hiatus hernia which can cause dysphagia, although I don’t think it’s overly related myself

Assume not EOE? Eosinophilic oesophagitis? Usually endoscopy tells them that though.

Yeah endoscopy would diagnose this and it wasn’t in my report, just the hiatus hernia. Thank you though

OP- Did it start suddenly/overnight or was the dysphagia gradual? If sudden, I'd be concerned it might be a small stroke which has affected your swallow reflex. Did they do a CT brain scan?
If gradual, were you ill with viral symptoms?

I wouldn’t say overnight as within the 2 weeks leading up to it I definitely had a few moments of ‘that was difficult to swallow’ but then overnight it did start affecting me more permanently. I’ve had good and bad days since where I feel like I’m improving and then days where I feel like it’s back to square one. I hadn’t been ill recently but was at the start of a cold on the day I went to see the GP (a few days after it started happening) and the GP done a full blood count. CRP normal but a few of liver function enzymes are high so I’m undergoing further tests for this too. The autoimmune conditions that were tested for were negative and my abdominal ultrasound was clear too.

My sympathies OP - unexplained / unresolved dysphagia here too

Started after I had a Covid in the first wave and now a fair bit less bad but still not great. had barium swallow which suggested oesophageal dysmotility. Then endoscopy which found a hiatus hernia but EE swab came back negative. Then the ph / impedance test (horrendous for the main bit and the 24 hours) which found nothing. Omeprazole and gaviscon advance didn’t help. So despite the abnormal first test we basically didn’t reach a conclusion as to cause or treatment

for me it’s like the back of my throat doesn’t “close” properly to push stuff down and sometimes it’s like I do half the swallow then the muscle brings it back into my mouth. I can feel every sip of liquid going down and sometimes stuff gets stuck and I have to tap my sternum.

Sounds very similar here. The food gets to the back of my mouth but then the next part doesn’t seem instantaneous and I have to force another swallow at that point to get the food down. Sometimes I can feel the food sat at the back and then start to panic as it feels like it’s blocking my airway even though it’s just sat at the back of my mouth. I’m so sorry you have been through it all too. And also interesting that it started after you had covid, like a post viral response of some form.

Yes although for years before that I had a slight tendency for things to get stuck or to “choke” easily. The consultant said he was seeing quite a lot of it in patients who had had Covid. That was in 2021 so not sure if the pattern has continued

Did you ever get to the bottom of this? I'm going through similar. I'm worse with food I can't control very well and thinner fluid like water.
Had ENT scope with nothing untoward.
Had TN Endoscopy but couldn't tolerate it as my anxiety was so bad.
Had Barium Swallow 3 weeks ago. Still awaiting results.
Self referred to SALT who phoned me today and said something was found but couldn't tell me, except it's nothing serious. Then gave me advice about Hiatus Hernia and Globus Pharyngeus over the phone.
I also contacted a private specialist SALT who I spoke with yesterday after sending detailed information. She strongly suspects I have Functional Neurological Disorder, pending my results and has suggested a referral to Neurology.
I'm at my wits end with all of this.
I've had the swallow thing a long time but it got worse after I'd had multiple antibiotics for severe Diverticulitis.
Because I have anxiety, I've basically been gaslit for over a year now about this.

Just a quick response but I have suffered from this. Actually started in childhood to some degree (when I thought back) and then flared up a bit during menopause.

Had all the investigations as mentioned above but also hiatus hernia etc. Also recall I had some pockets that food got stuck in more easily.

I noted that things got worse if I stood up eating (e.g. canapes), hard meat e.g. steak difficult and also carrots. Of course if you're drinking and socialising, it is quite easy to try to rush things as you're eating quickly in order to be able to respond to things.

Also found that when I cut back on carbs (gluten) a bit, things improved.

But I do wonder now whether some of the 'peaks' were around some hormonal event, at least in my case.

@1sttimeforeverything2 thanks for replying. I have had this for a long time too but definitely worse the past few years and interestingly, I am nearly 18 months postmenopause. I think it has absolutely had a factor in all of this.
I phoned the consultant's secretary earlier and sue was going to chase things up for me. I'm honestly so peed off with all of this,x