Oesophageal Dysmotility

Elliexoxo70

I’m new on here, I thought I’d try to see if I could connect with anyone going through something similar.
For about 5 years I have struggled with swallowing foods and drinks. I have been for an endoscopy a PH and Manometry test and a CT scan. The endoscopy came back normal also the CT scan. The manometry test came back that I have weak peristaltic waves and slow reacting sphincters. The specialist refuses to give me a definite diagnosis because he doesn’t know exactly what is it or why it has happened. He is sending me back again to have another manometry test and to have a barium swallow. I struggle with foods of all textures including water. I suffer with severe regurgitation and throat spasms with no medication or advice to help ease my symptoms. I am just wondering if anyone has been through anything similar and has any advice? I’ve tried to do my own research and I have tried so many different things as well as telling myself that it’s all in my head to try and make food go down!

JessieJ

Hello @Elliexoxo70 & welcome to the forum.

I don't have any advice, but I do know how you feel. As, I was diagnosed about 18 months ago, with dysphagia & oesophageal dysmotility, with tightening at the cricopharynx, weak & confused peristaltic waves with GERD/lower sphincter dysfuntion. It is not in your head!

I am under ENT & gastro to sort it all out. From the ENT side, I was sent to SALT/speech & language therapy, to see if they could help with my voice & relax the upper part. Given water phonation exercises that have not worked, I still lose my voice or go hoarse every day & they haven't stopped the choking either. Only meds I've been given is Gaviscon Advance 4xday & they upped the dose of Omeprazole that I was taking anyway.

Neither side can say why or what has caused it, which is frustrating, as you well know. I'm in line for botox injections, dilatation or a cricopharyngeal myotomy. Below that level, it will be more of the tests & endoscopies then decide if at least the sphincter can be helped.

Only advice I was given, was take small bites of food with sauce or gravy for lubrication & drink with a meal too. You've probably been given that same advice & as we can choke on just water, it..er..doesn't really help that much.

At least it's not as frightening as when it first started happening, we now know & are wary, just got to soldier on until they come up with an idea of why & a fix. Hang in there!

Elliexoxo70

https://forum.scope.org.uk/discussion/comment/891734#Comment_891734

Thank you for replying! I’m so sorry that you have somewhat similar experiences with this! I honestly wouldn’t wish it on my worst enemy!

Like you I was also referred to an ENT but they just told me that because the problem was further down my throat that they were unable to help me! I want to be referred to the SALT team too, just to see if they can help me with more of my day to day struggles whilst the ‘specialist’ investigates. I used quotations because the specialist I’m under is not that good in my opinion. He has sworn at me over the phone. Prescribed me medications that have ultimately made me worse!

I have tried omeprazole and gaviscon but due to the fact that the PH test showed no abnormal acid reflux they said it was pointless. The specialist won’t offer me surgical treatment or Botox due to ‘not having a specific diagnosis’

true it is easier to deal with that it was when it first started but sometimes I do find myself in a hole, crying ‘why me’ occasionally 😂

do you know how long your waiting time is for your next procedure?

JessieJ

Hi Ellie

I agree, I wouldn't wish it on anybody, it's not the most pleasant thing to suffer with.

I'm sorry that your ENT Dr was unpleasant & not so helpful. It seems there is not always an obvious cause & a shame that no meds can actually help your situation. I wonder if your GP would refer you to SALT for an assessment, as I don't think they work on a self referral basis. Maybe worth an ask? As I can imagine your frustration at being left in limbo. Hopefully they will come up with the cause & a solution to help soon, then you can move forward. BTW, apparently, Botox has to be repeated on a regular basis, which sounds like a pain in more ways than one. Think I'd rather have my throat cut…with a myotomy than that. 😉

As I have the upper oesophageal problems as well, that's probably why they referred me on to SALT so they could further assess me. As I said above, I was given phonation exercises which I've been doing for about 6 months now, but they haven't helped. She had already referred me back to ENT from her assessment & she'll be at my appt with them in September to discuss the next steps. I do have another appt with her the week after next though.

For the lower portion, I'm under gastro & I saw my consultant last Tuesday, thankfully & luckily, he is a really super guy, takes his time & goes through everything. He said the next lot of tests with him will be in a couple of months. Funnily enough, I was called in for that appointment last minute as they had a cancellation, it was originally for September, now means less of a wait for this next round of tests. There is a bit of a wait unless you're lucky enough to get the call.

I think it's totally normal to have a bit of a pity party, need a release as sometimes life gets too much. I would love to be able to go up onto a cliff & just scream, as I don't think my neighbours would be too pleased if I did it here. 😆

Elliexoxo70

https://forum.scope.org.uk/discussion/comment/891759#Comment_891759

Hi Jessie

Sorry for the late reply i was working all day yesterday!

I'm not sure what happened but i definitely did just write a reply to you and it didn't post! it took me ages too! haha so if youre reading the same thing twice i really apologise!

The Gastroenterologist that I have is not very good at all! i waited 9 months for my appointment which was only a phone call that lasted 3 minutes and the next appointment that he has booked for me is another phone call in May 2025! I have never been given the opportunity to see him in person to discuss results or see the diagrams of my scans etc. Which i find very annoying because he sends me the letters with the results on them but i dont understand anything on them haha !!

I have heard that most of the treatments they offer for these conditions are temporary so committing to procedures i think would be hard for me due to going through all of that stress and having the unknown that it may not help at all, but i guess thats with everything.

I have thought about contacting my GP to get a referral to the SALT team however every time i have asked my GP about anything to do with my throat they have told me that they cant help me because it is beyond their expertise. It's so frustrating because i wait months to hear from my specialist and then i cant get any help inbetween from my GP.

The Gastroenterologist has referred me back to London to re-do the PH and Manometry testing, which i also find frustrating because i did it once before and then the specialist didn't call me for a year and then he said i had to do it again because the results could have changed. I said to him that would be because you have waited so long to call me to discuss them.

I'm so glad that things are moving faster for you though and you may have some answers pretty soon! I feel like its so difficult to find people that are going through similar things and i never thought to sign onto one of these forums but im glad that i did because now i have someone to talk to about it. I just feel like no one understands and i also feel that people get fed up hearing about me choking everyday.

What kind of tests have you undergone so far and how long have you been experiencing problems with your throat?

Oh definitely, a pity party is necessary! my neighbours definitely wouldnt appreciate it either, luckily i live close to some cliffs so i think i might take a hike up there to scream! haha :D

Elliexoxo70

Hi Jessie

The Gastroenterologist that I have isn't very helpful either. I waited 9 months for my appointment, the call lasted 3 minutes. I have never been given the opportunity to see my gastoenterologist in person. He has sent me another letter stating that my next appointment with him isn't until May 2025. I can understand that there are many people waiting to be treated but an entire year without being able to talk to a specialist about my current situation seems like a joke. I have been referred back to London hospital to re-do the PH and Manometry test that i have already done because he said he 'wants to see if there are any changes' i said to him that its a bit unsettling that he has to send me back to do the same test because he left it over a year to call me back. I don't think there is any way of getting another Gastoenterologist, i just think that would prolong my diagnosis.

I would call my GP and ask for a referral to the SALT team, however, every time i have called them in regards to my throat they just tell me that they cant help me because it is beyond their expertise. Sometimes i do feel like these professionals dont care because its not them personally that experience it. I guess that is just the truth of the situation though…

Yeah i do believe that all of the procedures with this condition are only temporary fixes, which is so unfortunate and gut wrenching. I think the problem with me is that 5 years ago i was absolutely fine. I had no signs of struggling with foods or anything when i was younger and then one day it was just there! I think committing to a surgery to fix it is so scary though because you don't know whether it will work and then you endure all of that. it's so scary and i just feel like there isnt alot of support regarding our struggles and most importantly not alot of research regarding it!

I'm so glad that you have really nice specialist and people that are helping you to get through this! it can be so lonely. I have felt so alone in this because i have never found anyone going through something even slightly similar. I have never thought of coming onto a forum like this to seek out people to connect with on this matter but im glad i did. Its just upsetting that i don't have people in my day to day life that i can coversate to about this.

Oh 100% normal to have a pity party! sometimes it is the only venting we have! My neighbours would not be impressed either haha!

I mean just for an update and apologies for the TMI but on Sunday i spent time up at the hospital for an infectection in my Salivary gland due to food always getting stuck in my throat and it making me throw up. Im now on antibiotics hoping for it to go down because it has swollen. Unfortunately he said that it probably won't be the only time i experience this without having treatment for my throat.

JessieJ

Hiya Ellie

No probs on not replying straightaway, we have real life to live away from forums. 😉 And you did get a repeat, also not a problem, it seems there are odd things happening, a joy of forums! 😆

It's amazing the differences between our various NHS services. Yours is so far removed from how my particular journey is going with this. It's worrying really. Not actually seeing your gastro is bizarre. Were you ever referred to ENT?

I'm not sure when it started, but my voice was becoming annoying & that had been over a few years every now & then. Then it was every day from about two years ago. About 18 months ago I had the first frightening unable to swallow episode & then that started happening more frequently, so a call to the doc was in order.

I am extremely fortunate in being with an excellent surgery & GP, appointment was in a couple of days & she then put me on the two week urgent referral pathway with the ENT dept. I was in the following week & had an endoscopy via the nose & there were a few odd/abnormal things showing up, thankfully nothing that could be cancerous. They decided to refer me to SALT & to Gastro for investigations as well. So full endoscopy & a barium swallow followed, they picked up on my weird waves & lax LOS. You're ahead of me with the manometry & PH, they're coming up. With another nasal endo with ENT to look forward to, as I said, a fun September coming up. I am very lucky though, when I read your medical experiences over a longer time with this. 🙁

So sorry that you now have that infection, hope the ABs get shot of it quickly. Not such a good prognosis from the ER doc though, you don't need that as a regular problem to add to it. If you haven't been seen by the ENT dept, then it sounds like you need to try & get your GP to do that referral.

It's a pain that you have to go through the two tests again, but it will be interesting to see how the results match up. At least you haven't been left with no follow up, albeit a repeat.

BTW, my neighbours scream & shout anyway, that's probably why I'd rather let it all out in a cliff top sea breeze. 😆

Elliexoxo70

Hey Jessie

Ahhh i just noticed that it was repeated, must have been my wifi. How embarrassing!

It is very strange how it works, you must be in a much better area of the country to get everything moving so fast! Yeah, my first symptom was in February 2020, i was struggling to eat a little and i couldn't burp anymore haha. I contacted the doctor and they thought that it was acid reflux. I tried gaviscon and Omeprazole, nothing worked and the difficulty in swallowing got worse so they referred me to an ENT they used the camera and looked and they couldn't see anything, they sent me back to the doctors who then sent me for an Endoscopy, i had biopsies and lucky nothing was there and they have ruled out Cancer. Which is always great news. But that meant further investigations. I was then referred to the Gastroenterologist and he sent me for the PH and Manometry testing and a CT Scan. I am still waiting for my barium swallow nearly 5 years on from having problems.

Were you struggling with a hoarse voice etc i have heard that that is a quite common symptom with esophageal dysmotilities? are you avoiding certain foods? is there anything that makes it worse?

In my experience the worst symptom i have above everything is the throat spasms. I'm not sure if you have ever had that, i'm not even sure why it happens but i randomly get this horrible pain that starts in my throat and radiates all over my body. they say it's a similar pain to a heart attack. Again they haven't provided me with any strategies or medications to relieve these symptoms.

What was your experience with the Barium Swallow, i'm quite nervous! My experience with my first PH and Manometry testing wasn't too bad tbh. It wasn't comfortable obviously having a tube put down into your stomach never is. But it was fairly quick the tube goes up your nose and down your throat into your stomach and then they make you eat bread and drink water. They pull the tube out, FAST for unknown reasons which was a really strange feeling! Then they put in another tube attached to a device that i had to wear and return 24 hours later.

I find it interesting to hear about your problems with your throat to compare and contrast because every ones experience is different. not that it's a good thing that you're going through something similar of course. Do you still have working Peristaltic waves in your oesophagus then? i have weak peristaltic waves in my mid oesophagus and slow reacting sphincters, so they open and close slower than they should. I basically rely on gravity to push my food down and then it layers up in my throat waiting for my sphincter to open and let it in haha

I mean I just deal with it all as it comes now it has been nearly 5 years so every time something new comes along i'm just like 'okay this is happening' haha luckily i'm not experiencing any pain with my infection now it just feels as though my face is huge, it isn't though haha!

I guess that is the only good thing about redoing the test to see if there is any change. i'm just hoping its not worse. Unfortunately i feel like it will be worse because i can see from over the years how it has progressed in my daily life.

Oh i'm in the same boat! My neighbours are always screaming and shouting at each other, but god forbid i walk down the hallway and then they are screaming at me! i don't get some people haha. Yes! screaming into the open is so much better in my opinion get it all out into the open and it feels as though you're letting it all go!

I'll wait for this one to pot and i won't post another repeat haha :D

Albus_Scope

Heya @Elliexoxo70 and it's a big welcome from me too. 😊

I don't want to but in too much here as you seem to be having a great chat, I just wanted to stop in and say a quick hi. 😁

JessieJ

Hi @Albus_Scope, butt in as much as you like! 😊

Hello Ellie

I'm glad that you were referred to ENT & cancer was ruled out too. It does sound like they need to get you back in, as it's ongoing. I was on Omep already as I take Naproxen, but they upped that & added Gav Ad as I have silent reflux. So silent, I didn't know I had it. I've only ever suffer one episode in the middle of the night which really was an unpleasant experience. With taking those meds though, my voice through every day can be hoarse, crackly, a whisper or no voice at all. There aren't any foods that worsen it, that I've noticed, but I do always drink water when eating & cut my food into small bits.

I haven't had any pain in my throat, thank goodness, doesn't sound pleasant at all. I'm amazed you're still waiting for the barium. I didn't find it too bad. You stand on a machine, drink the barium & you get given the choice of a biscuit or cake to eat whilst they film it going through. I'm thankful that my throat blocked off whilst doing it, so they could see & then it showed up the bit you don't know about, the P waves. Mine are weak & out of sync with a weak lower sphincter, hence the reflux. When I went to a SALT appointment, she showed me the film, pretty cool really & it did mean I could see exactly what was going on.

Must admit, none of the tests have really bothered me, wasn't keen with the gagging having the endo, only because it didn't do my back much good. I actually enjoyed watching it on the screen. I've noticed one change in the last few months, I have lost my gag reflex, which is most weird, but it does mean my next endo should be a breeze. 😆

Really, yes, we just have to live with & manage it with the help of various Drs. I presume the tests will continue every now & then, it is good to be rechecked though, so onwards we go. Pleased for you that the infection isn't causing any pain, it should soon clear up. The swelling will go too, just don't look in a mirror for a coupla days! 🙃

My neighbour screamed at a toddler belonging to another neighbour, he fell into their door, it was an accident & luckily babe was okay, but my goodness, what a nasty guy. Need that cliff visit & soon! 😉

Elliexoxo70

https://forum.scope.org.uk/discussion/comment/892622#Comment_892622

No Problem, you're not butting in. Hey!

Elliexoxo70

Hey Jessie,

Yeah I feel like they just aren't interested in helping me, at least that's what it feels like. Every time i speak to anyone about it they all seem to fob it off. I understand it isn't a well researched condition but i would prefer to be told by the professionals that if they don't know what it is that they would just tell me haha

I'm sorry that you suffer with acid reflux. It must be horrible! i know that they told me i don't but as of recently i do find it hard to believe as my throat is almost always burning. What is even harder is the fact that they told me to drink fizz when i eat and that makes everything worse because of the gas in the drink. i can't burp so i cant release the gas which makes my stomach so painful!

I'm so glad you don't have the Esophageal Spasms, they are horrendous! i still remember the first time it happened, i genuinely thought i was having a heart attack. My entire chest went all tight and it felt like i couldn't breathe! the only thing that sometimes works is having anything peppermint. They say that Peppermint relaxes your nerves in your throat and aids digestion. However i wouldn't advise peppermint tea for you as it isn't good for people that suffer with acid reflux.

Yeah I don't understand why a barium swallow wasn't booked within the first year of investigations, before they did the PH and Manometry testing because it would show a clear film of whats happening. I'm glad that you got to look at your graphs and films from your barium procedure, i wish they would show me mine and walk me through it! i think seeing it and having someone explain it would give me a little more transparency on what is happening when i am swallowing food and drink.

Does the barium drink taste bad? i have heard that it has made some people vomit haha! If you have to stand still when they do it that will make it very difficult for me because when food gets stuck in my throat i always start panicking and fidgeting around haha you'd think after 5 years i would know what to expect but every time it is horrific!

Oh yeah the endoscopy has got to have been the worst test i have done throughout my life, honestly! i went alone and i was so scared! I started crying throughout it! Once it was done i vowed to never do it again!

Yeah lets hope! its my fourth day on the antibiotics and i only have them for one more day, no decrease in swelling through so if it doesn't go by Thursday i am going to go back again just in case it isn't what they initially thought it was.

If you don't mind me asking, what area of the UK are you from as you seem to have quicker healthcare wherever you are haha If you don't want to say i absolutely understand!

Oh dear! that's horrible! our neighbours are like that! Since living where we are now we have had 3 different neighbours and they have all been basically the same, screaming at eachother, screaming at their children, banging around so much so that they slammed a door and my TV fell off of it's unit and broke :/ Just going to get a boat and scream from the middle of the ocean at this rate haha! :D

JessieJ

Hiya Ellie

I can imagine how frustrated you are, if none of your medics have sat down to explain everything, even if they aren't sure the cause & haven't done the one test that can answer some questions.

My acid reflux is silent, called LPR, as opposed to GERD & GORD, why I was surprised when they said I had it. Only once have I actually had an episode, it was awful, but it was maybe a year before other weirdness started. Have you tried taking Gaviscon, to see if it helps your throat & gives you the answer they haven't? You could have one of the 3 types. For the burping, when you were a kid, did you do 'burps to order'? 🙃 Maybe you could try that to help bring the wind up. 😄

Sorry you have the spasms & glad I don't…soz! I'm not sure about the peppermint, but maybe sucking a sweet, peppermint or any, to give your tube something to do. Most antacids come in peppermint flavour, so maybe I should try some tea, even though I'm not a fan of tea. 😆

It's crazy that you've yet to have the swallow, but once done, as it's your body, you could ask to see the results & definitely the film. Then you can also ask the questions you need to. The swallow was okay, a weak tasting (they asked if I wanted choc or strawberry), chalky gloop. You stand on a platform, there are handles, as I couldn't stand with my crutches & you just take a mouthful when they ask. You're also given a choice of biscuit or cake, so they can see the reaction with food. It takes 15/20mins & you're all done.

Funny how we're all different, I always go to medical appointments solo too & none of them have bothered me that much. I'm of the mind, if it's needed, get it done. I worry more about any added pain in my back more than anything else.

Well, it's Thursday, so hope your swelling has lessemed & the ABs have done their job.

I live in Hampshire & it seems the health system here is good, at least where I have to go. Main hospital is a university one, maybe that has something to do with it & my Drs surgery is just run very well.

Not good about your neighbours, to actually manage to break your tv!! Mine are quite new, about 3 months, so they're settling in & showing exactly what they're like now. 🙄 If you get that boat, don't forget to take a fishing rod, just as well catch dinner whilst you're out getting rid of your frustrations & fishing is calming. 😉

Elliexoxo70

Hey Jessie!

Yeah it's so strange that they haven't i would have thought that that was procedure. im definitely going to start insisting that they show me my results.

That's so interesting i think i have only ever heard of GERD. I can't even begin to imagine your struggles with it. It must be horrible. Yeah i have tried gaviscon but not the peppermint one, i might have to give that a go and see if i get any relief from that. Well when i was younger i used to generally burp alot haha :D I have tried to force a burp before but nothing happens. It's strange because i can feel the burp rising and the pop in ,y throat ready to let it out and then i can feel it roll back down my throat? It's so strange. The only time i have managed to burp as of recent is when i have had a Cider haha :D

I'm glad you don't have them and hopefully never have to experience them! haha yeah maybe i just need to constantly be eating something peppermint. I tried to use peppermint gum but that gives me the worst acid reflux! Definitely do NOT recommend! Do you not like tea at all? Any tea? sometimes i enjoy a tea haha, not really a fan of fruity tea or iced tea though.

Yeah i thought that was so strange i had my telephone with the Gastroenterologist at the beginning of June so im still waiting to be contacted about the Barium Swallow. I will request to see the results but i doubt they will let me. They never do. It's like they try to keep my own health from me haha! I will most probably choose the cake so they can get a proper result. If i am being tested for something i want them to see what is happening when it is at its worst.

I hate going alone to procedures and things because i like the moral support but when push comes to shove and it needs to be done it will do it alone. i'm 24 and i guess that means i have to adult i dont like that haha. I also had to give myself a pep talk before doing the endoscopy! haha :D Oh no whats wrong with your back? Are you okay?

I can update you that its still not completely down and slightly painful. i have finished my course of AB's so ill give it until Monday and if its still causing me issues i think ill go back and have it looked at again.

Oh right, up near Bournemouth sort of haha i live down in Dover haha Awful place! My Gastroenterologist is in Margate though. I'm glad you have a well run Doctors Surgery mine on the other hand is horribly run! They insist they do appointments on the phone and i just don't see how that can be thorough enough, say like if you had a rash or something. How are they going to prescribe anything for something they have never seen! Insane!

I feel like my Block is cursed, honestly. Everyone that moves in here is domestically challenged they are always fighting with eachother, it's like they dont want to live a happy simple life! :D Oh everyone shows their true colours after 3 months, that the known rule isn't it hhaha Oh gosh imagine me in a boat in a boat fishing and screaming! haha I'm not good at fishing my dad took me when i was younger and lets just say 10 fish didnt make it out very well. My dad banned me from going again. I guess i wasn't made for the fishing life :D

JessieJ

Hello Ellie

Yes, you definitely need to ask, your body, your results & you need a face to face for that, no more telephone calls. As you should get a date for your barium soon, hopefully you will actually see your gastro then. 🤞

I had only heard of GERD too, you learn something new every day. Now I know & I've had all the weirdness for sometime, it's not so bad, just got to accept it & hope something will help or cure it, probably the former.

Defo try the peppermint Gaviscon, it may help & it's worth a try. I keep being given the aniseed one as the pharmacy can't get the other quite often. It's not bad & if it is actually helping to keep things in check, then good. It is odd your forced burps don't make it all the way, your peristaltic waves must grab it! 😉As apple cider vinegar is supposed to good for us, cider is a close relative, so the odd time you feel bloated, have a small glass, sorted & tastes better than any meds. 😁 Nah, I don't drink tea at all, I have had fruit teas/tisanes but find them insipid. I love coffee, but only have one or two cups a day.

I'm diabetic, diet controlled, so I thought the biscuit would be better for me than the cake. 😆 Enjoy it when you actually have your BS. I can't remember what sort of cake it was, so can't say whether the chocolate or strawberry barium will go with it. 😉

We're all very different & I've had a good few years more than you to go it alone, you're just a babe, so some moral support would be good. Hope you have someone lined up for the BS. My back, I had an accident that wrecked my lumber spine, had a spinal fusion, it collapsed, eventually had another op to clear the mess & to try & stabilise it, then another fusion. The result was pretty ****, well worse than **** & still is, soooo….. BTW, you can't burp, but because of my back etc…I can't fart!! 🤣 And I've just put that on an open forum!! 😆

Not so good that you still have pain after finishing the ABs, looks like you have plans on Monday!

Bournemouth isn't far away & used to be in Hampshire, so you're close..ish. 😉 Back to fishing, Dover, at least you could hook some lovely sole…or your dad could, whilst you scream!! 😁 It is a shame that healthcare is a postcode lottery & Covid hasn't helped with that by putting the NHS under more pressure & then having to play catch up. It's funny, I don't mind the phone triage system. At least, at my surgery, it saves my GP time, but of course, if it's something that she needs to see, an F2F is booked. Also they run on a list system, so you always see or speak to your own GP, unless it's an emergency. Seems yours doesn't work the same way & that is insane!

Poor you! I didn't know there was a three month rule, but I'm lucky with most of my neighbours, well I can't hear their shouting quite so much! 😉My neighbour there before was a lovely old lady, sadly she went downhill with dementia & ended up in a home. I do miss her, even though she used to call me all the time & our conversations were on a loop. Bless her…