r/dysphagia

An unexpected complication and update

I posted a couple weeks ago about my current issues with dysphagia and trying to find if anyone else could offer advice. Tldr of my last post , I was experiencing nasal aspiration, tender throat and vocal cords, egd wasn’t not retested for EOE and I couldn’t swallow solids anymore combined with chronic nausea that made trying to even force myself to eat with the dysphagia nearly impossible along with other things, the original is on my profile.

All of my original symptoms started end of July beginning of August and when I last left off I was waiting for a new GI and a modified barium swallow. I saw a new gi and she had reordered the egd for November and put out new orders for the manometry and mbss.

The new update is I’m in the hospital and I’m 4 weeks pregnant and this has SEVERELY complicated things. I’m in such severe pain along with being unable to eat my weight dropped again from 100-102 which I was somewhat able to maintain at home with yogurt and alot of blended soups , to 95 ibs and the pain is so severe that they’re not even sure how to help me with everything going on and I don’t even know when I can go home. They gave an SLP, my old and new gi plus one from the hospital, my digestive specialist and a nutritionist all on my case to try and figure this out quicker now that I’m pregnant (go figure) and I’ve been here for multiple days with no answers.

I feel so incredibly hopeless and the feelings are only getting worse as time goes on. This pregnancy was not planned and not expected but I’m terrified that bc I’m having such a severe issue swallowing and keeping on weight I’m going to lose the baby because of it and there’s complications on that end of things too. I’ve been on liquid only since I got here and that’s if I can even drink some of the days. They’re gonna repull my labs in the morning but an MRI didn’t show anything and I feel like all my gis are arguing with each other instead of actually helping me bc they all have conflicting feelings about what’s more important to worry about and I don’t even know what to do.

If there’s any words of encouragement at all they’d be greatly appreciated. I’m waiting to be taken for the swallow test and manometry hopefully tomorrow and they’re trying to find out when an egd would be safe to do but right now it’s looking like it’s gonna not be until my health is somewhat stabilized. I’m scared. And dealing with a pregnancy while have dysphagia is not what I thought was going to happen to me and I don’t know how I can keep doing this. I just want to cry all the time and my family is no help bc they haven’t been through anything like this.

Also edit to add I’m only 4 weeks so I can’t even finally have an answer for the dysphagia like if the pregnancy had caused it bc it all started before I got pregnant so there’s that.

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u/No_Cry6915 — 11 days ago

Could my long-term swallowing problems make anesthesia or intubation dangerous for hernia surgery?

I’m 18 and I have a hernia that may require surgery. I’m worried about whether my long-term swallowing/throat problems could make general anesthesia or intubation dangerous. I’ve had swallowing/throat problems for about 10 years.
It feels like something is stuck or clogged on the right side of my throat, around the Adam’s apple area. Food and air seem to go down the left side easier than the right. Sometimes water on the right side makes me cough or choke.
I frequently clear my throat and swallow saliva.
Sometimes my voice sounds wet/gurgly, and the right side can feel raspy. ENT exams and a recent endoscopy were reportedly normal. I’m scheduled for a barium/swallow study. Could these symptoms make anesthesia or being intubated for hernia surgery dangerous? Should I tell the surgeon and anesthesiologist about this? Im just in severe debilitating pain because of this hernia and im scared I will die during surgery.

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u/Previous-Concern39 — 11 days ago

Help me please, oropharyngeal dysphagia since 2020 that gets better after sleep, worse as the day goes on, and changes with neck position. I also have a persistent neck lymph node and a history of toxoplasmosis. Has anyone experienced anything similar?

Hi everyone. I’m a 31-year-old man, and I’ve been dealing with swallowing problems since March 2020.

It started pretty suddenly.

Ever since then, the problem has felt mostly oropharyngeal. It doesn’t usually feel like food gets stuck lower down in my chest. It’s more like the swallowing motion itself sometimes doesn’t happen normally, almost like my throat or larynx isn’t completing the movement properly.

The strangest part is how much it changes throughout the day.

When I wake up in the morning, my swallowing is usually much better. Breakfast is almost always the easiest meal.

As the day goes on, swallowing gradually gets harder. Lunch can be more difficult, and dinner is usually the worst.

But here’s the really weird part:

If I take a nap before eating, my swallowing often gets noticeably better again after I wake up.

Sometimes even 30–60 minutes of sleep or rest makes a real difference.

It almost feels like sleep somehow “resets” my swallowing for a while.

Neck position also makes a big difference.

When I bend my neck forward and bring my chin toward my chest, I feel much more pressure under my jaw and around my throat.

If I extend my neck, I usually feel like there’s more room and swallowing can feel easier.

When I flex my neck a lot, the tissue under my jaw bunches up quite a bit, almost like a double chin, even though I’m not obese. I have no idea whether that actually matters internally, but it’s one of the reasons I’ve started wondering more about structural causes and the soft tissues of the neck.

I also have some breathing-related symptoms.

When I lie down or start falling asleep, I sometimes feel like my throat is narrowing or like I can’t get enough air. Sometimes I wake up suddenly feeling like I’m choking or gasping.

I’ve also been diagnosed with obstructive sleep apnea.

That makes me wonder whether the breathing problems and swallowing problems could somehow be connected through the upper airway, although nobody has actually proven that in my case.

There’s another part of the story that has always bothered me.

Since around the time all of this started, I’ve had a small palpable lymph node/lump in my neck, and it’s still there.

I also have a history of toxoplasmosis and cervical lymphadenopathy.

I’m not saying toxoplasmosis is causing my dysphagia. It could be completely unrelated. But I still think it’s worth mentioning because the lymph node appeared around the same general time and never completely went away.

While searching the medical literature, I found a case report that really caught my attention.

It involved a 66-year-old immunocompetent woman who developed a foreign-body sensation and difficulty swallowing solids along with a persistent left cervical lymph node. Her barium swallow didn’t show any structural abnormality, and flexible laryngoscopy was also normal.

The lymph node was around 1.4 cm and stayed there for months. It was eventually biopsied, and the findings were compatible with Toxoplasma gondii lymphadenitis.

Obviously, that doesn’t mean I have the same thing. I just found it interesting because it involved dysphagia, a persistent cervical lymph node, and toxoplasmosis, with some of the initial tests also being normal.

I also have a pretty long uvula, and depending on my position it can get very close to or touch my tongue.

Other symptoms I’ve had include:

  • pressure/fullness under my jaw and in the submental area
  • a constant foreign-body sensation in my throat
  • thick saliva or mucus
  • frequent throat clearing
  • a feeling that my larynx or hyoid doesn’t move upward normally when I swallow
  • swallowing getting worse later in the day
  • breathing discomfort that changes depending on position and sleep
  • frequent burping, sometimes even after just a small sip of water

The burping has actually become much more noticeable lately.

Sometimes I can take just one small sip of water and immediately need to burp, even if I haven’t eaten much and haven’t had anything carbonated.

What’s strange is that lately, when the burping starts, I also begin to feel worse in my neck. I get that same pressure/fullness under my jaw and in the submandibular area, almost like something is tightening or building up there.

I don’t know if the burping is actually causing the neck/throat sensation or if they’re both being triggered by the same underlying problem, but I’ve noticed the connection enough times that it seems worth mentioning.

I’ve wondered about reflux, air swallowing, supragastric belching, or some kind of upper esophageal/throat issue, but none of that has been specifically confirmed.

Over the years I’ve had several tests and evaluations, including:

  • flexible laryngoscopy
  • upper endoscopy
  • videofluoroscopic swallow study / modified barium swallow
  • neck imaging
  • ENT evaluations
  • speech/swallow evaluations

My endoscopy also showed a small hiatal hernia and gastritis, and LPR/silent reflux has been considered as a possible explanation.

One problem is that some of these tests were done when I was feeling relatively okay.

For example, my swallowing can be much better in the morning than it is later in the afternoon or at night, so I keep wondering whether a test done in the morning might miss what happens when my symptoms are actually bad.

I’m attaching part of my swallow study video too.

I also have a neck MRI scheduled soon.

One of the things I want them to look at is the deeper soft-tissue anatomy, including the base of the tongue, floor of the mouth, sublingual and submandibular areas, parapharyngeal spaces, oropharynx, hypopharynx, and the area around the hyoid and larynx.

Recently I’ve been reading papers about fat inside the tongue and around the pharynx.

There are studies showing that fat accumulation inside the tongue can be associated with a larger tongue, changes in hyoid position, and abnormal upper-airway anatomy.

I’m definitely not saying this is what I have, but I’m curious about it because my symptoms are so dependent on neck position and I also have sleep apnea.

After more than six years, these are still the things I can’t explain:

  1. Why can I swallow so much better after sleeping?
  2. Why does my swallowing gradually get worse as the day goes on?
  3. Why can a nap sometimes improve it again?
  4. Why does bending my neck forward make the pressure and swallowing feel worse, while extending it seems to help?
  5. Could my sleep-related breathing problems and dysphagia somehow be connected?
  6. Could the persistent cervical lymph node be completely unrelated, or has anyone here had swallowing problems connected to cervical lymph nodes or inflammation?
  7. Has anyone had frequent burping or air coming back up together with throat or submandibular pressure?

I’d especially like to hear from anyone whose dysphagia:

  • changes a lot depending on the time of day
  • improves after sleeping or resting
  • gets worse with neck flexion
  • comes with breathing problems during sleep
  • started around the same time as a neck lump or lymph node

If you’ve had anything remotely similar, what did you eventually get diagnosed with?

And what test finally found the problem?

MRI? FEES? Modified barium swallow? High-resolution pharyngeal manometry? DISE? Neurological testing?

Most importantly, what actually helped you?

I’m not expecting Reddit to diagnose me. I’ve just been dealing with this for years, and I’m trying to find people with a similar pattern or ideas about things that might be worth discussing with my doctors.

Sorry for the long post. I just hope sharing my case can help other people who are also living with dysphagia and trying to figure out what’s going on.

u/AdAggressive485 — 14 days ago

My aunt passed away. Not sure what exactly happened

She was 80 years old, almost bedridden. A few days ago she was drooling saliva and said that she was having difficulty speaking. She was also sometimes breathing from mouth and noisily. She had a history of gerd so we thought it was that and consulted the doctor on saliva and reflux issues.

Today morning she drank water and began choking on it. In the hour that followed she did cough some of it out but she continued struggling to breathe. She alsk had bent sine due to osteoporosis so it was difficult to make her cough. We took her to the hospital, she had a very faint breath and was pronounced dead. The day before this she was eating fine, walked a bit, and was conscious until the end. I feel that we misinterpreted her symptoms and she aspirated/ choked on liquid which is not consoling at all as we miss her so much and feel responsible for it!

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u/dewdrop_1920 — 12 days ago
▲ 4 r/dysphagia+1 crossposts

Atypical LPR, if that's what it is, going on for months now.

I'm writing on behalf of my wife who's had a problem for almost a year now, but most intensely in the past 3 months or so. My wife has lost 45 pounds since this all started and has regular problems eating most foods. She was drinking heavily for about four months because of an unrelated pain issue and started spitting as she ate. She could eat most foods then but as soon as she quit drinking, the conditions quickly worsened so that most foods triggered immediate accumulation of phlegm - ice cream, yogurt and tapioca being exceptions for the most part. Her symptoms get worse as the day goes on but she has no problem once she lies down, slightly elevated, and sleeps all night. She doesn't get any heartburn.

She's had an endoscopy and barium swallow test, neither of which showed any problems. She's had medications for nasal issues, nervous issues and for reflux. Gaviscon works off and on but sort of pointless because you can't take it before eating. She's trying to get into seeing an ENT but that isn't easy here in London, Ontario. Could be months away.
A very frustrating part in all of this is that no doctor she's seen so far has a clue. All we got from our gastroenterologist was the suggestion to double her PPIs. the family doctor has tried various things including nasal sprays and antihistamines, but no effect.

It seems like the drinking may have been the cause for her problems so it may be that she just has to wait until any throat damage done by drinking heals. She also had trouble accepting a hearing aid in one ear, the right side which may be rubbing on the vagus nerve which also is often cited as a related issue for lpr also since this nerve passes by the throat.

Any suggestions for what to do next?

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u/peterm56 — 11 days ago
▲ 5 r/dysphagia+2 crossposts

I gag when my mouth becomes tasteless

I’m 20 years old, 174 cm tall, and weigh 54 kg. I’m male.
The medication I currently take is olanzapine. I don’t smoke.
I had a gastric ulcer in the past. I’m currently seeing a psychiatrist and have been diagnosed with somatic symptom disorder related to my current symptoms.
My symptoms started about four years ago. During a sports competition, I became very nervous and started gagging. Since then, whenever my mouth becomes completely tasteless, I start gagging.
Because of this, I constantly keep juice or candy with me. Plain water or other things without much taste don’t work for me.
I have had several medical examinations, including an upper endoscopy and a brain CT scan, but nothing abnormal was found. I’m currently receiving treatment from a psychiatrist, but it hasn’t helped very much so far.
However, I noticed something interesting. During dental treatment, I was given IV sedation and put to sleep. After waking up from the sedation, I didn’t gag at all for about 5–6 hours. This happened all three times I received IV sedation for dental treatment.
Could the fact that I didn’t gag after IV sedation be a clue about what is causing my symptoms?
Has anyone experienced something similar, or does anyone know of a condition that could cause this? I would especially appreciate any input from doctors or people who have experienced similar symptoms.

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u/Actual-Fudge-8549 — 14 days ago