ENT Complications and Management - Professor Martin Birchall | English (EN)

[@isocarboxazid]

While I was in the process of being diagnosed with EDS, I had arytenoid cartilage swelling and collapse. I went to the ER because I felt like I was choking when I was lying flat (and sometimes upright as well) and got an urgent referral to an ENT. It was scary as hell. At first, the ENT didn't believe anything I was saying and literally rolled his eyes at me. Scope in hand, he asked me, "Are you making that noise on purpose? Well, let's get this over with." Then he scoped me, pulled the scope out, and said, "My first thought is to take you to the OR first thing tomorrow for a tracheostomy. I haven't seen anything like this since residency. This is not in your head, maybe you do have EDS." My airway looks exactly like the ones in this video. Thank you so much for this info, Dr. Birchall.

[@mysticbeing2938]

I think I have the same thing. I often takes pictures of my collapsed throat to show evolution. It's now hard to see my uvula.

[@bethylou8293]

I have hEDS (pending diagnosis) and confirmed EOE with a traumatic injury to my throat. I have dysphagia and esophageal spasms. I would love to see the medical field do more research on these things and if they are connected in any way. (obviously without the injury). I would be 100% willing to be a guinea pig for any studies or research.

[@jobell7356]

my hand is going up with you!!

[@elenaglass8283]

Wow Dr Birchall 👏 🙌 Thank you for the important work you do! I have had barium swallows, scans and examinations to see why I have this chocking sensation, with doctors hinting that I am making things up or am being anxious and relating it to psychology. I have Hypermobility and it is causing issues in other areas of my body, that has never been connected. I hope more professionals and people know about this feature… very enlightening!

[@themovingdance2744]

I get choking and breathing problems at night. Now I get it. Over production of mucous. Problems with swallowing so I have to drink water whilst drinking

[@dropdeadfred73]

I have EDS and I have started getting a bubbling sensation in my throat when swallowing. My snoring is really bad and I lose my voice completely when I get a cold. I've been given reflux medication but it's made no difference. I feel like something is stuck in my throat all the time. My voice is quite gravelly.

[@DeadlyCyanide1]

Thank you!!! I keep getting told it feels like something is there but it isn't and being told I'd be choking if food wasn't going down all the way but if I eat too much at once it gets stuck and can take awhile to go down after feeling a rush of the cold water FINALLY going down. It's the most insane experience.

[@jobell7356]

and horrible! I can empathise, I get that and have to be so careful. Social situations are the worst; I either eat or I drink, I cannot take part in conversation, it has to wait otherwise I end up choking on something or other.

[@DeadlyCyanide1]

@@jobell7356 that is terrible. I'm so sorry. Yeah this really sucks so bad. A friend of mine told me that it's part of gastroparesis which honestly I've been putting off for a long time because I'm not sure if I even want to know if I have that issue or not. I know I've had IBS since I was five but that's about it

[@AndreaCatlett]

I have this weird thing that happens in my throat, which I always describe as my chords twist. After watching this video, it makes sense as other joints in my body displace or twist out of place. Why wouldn’t the ones in my throat? So amazing. Thank you!

[@ashleym1565]

I have EDS and am currently working on figuring out what’s next. I’m in the USA but think we are on the right track. I think it would be interesting to connect you to my doctor since he is a GI who is doing EDS research as well. EDS is so new to me since I was just diagnosed August 5th but it just shows that it is not known enough and it really need to be! This video was great. Thanks for the information!

[@ashleym1565]

I should have added that my motility test showed 10 failed swallows but both my opening of the les and the other one pressures were normal.

[@andethidialbubabibub3261]

At least you have a diagnosis

[@jacobessex4241]

Where is your GI that is doing research with EDS

[@hypnopompicstate9910]

Very edifying, thank you.

[@musicprof08]

This is so informative, thank you! I wish I'd known this (and had my diagnosis) when I was studying for a decade to be a singer!

[@Angelia811]

Thank you. My daughter has been on an extremely limited liquid diet for 4 years now. She's had swallowing tests and they find nothing. No doctor that she has seen can find why she can't swallow.

[@sunflowerilla6]

I was diagnosed with HSD recently, and I also just began testosterone. Some combination of the two is causing me to experience this weird clicking in my larynx. I see and ENT soon, and I appreciate this as a resource I can give them. Thank you for your work.

[@nicolemoschini3817]

Helpful. Thank you professor! Any advice for constant post nasal drip? Ruining my throat my coughing up and swallowing down over and over.

[@marissabrakefield9271]

I would look into seeing an allergist. I finally decided to see one who did several tests and the diagnosis was eosinophilic esophagitis which she said is more prevalent in EDS than in the typical population. Of course, there are any number of things it could be, but I think it’d be worth seeing an allergist. Hope this helps!

[@nicolemoschini3817]

@@marissabrakefield9271 thank you!!! I have MCAS so with allergies it could be almost anything, even a shower can trigger my skin. But I'm going to look into what you said! Xo

[@bethylou8293]

@@marissabrakefield9271 You and me both! It seems that EOE with EDS is not well known yet in the general medical field. I am so glad Professor Berchall is doing this and sharing the info here!

[@DeadlyCyanide1]

If you aren't on a mcas protocol you gotta try and find a Knowlage allergist it immunologist who can get you on one. Ever since I started taking my meds I am almost 💯 good without issues

[@andethidialbubabibub3261]

The "double whammy" is not often talked about, thank you.. When you have heds + something else, you feel like Hiob without religion

[@staceybsbs]

like dysautonomia's, AE/PANS, MCAS

[@leslietascoff9784]

Fantastic!

[@andethidialbubabibub3261]

Ty 4 the upload

[@angelsark952]

I have EDS and I've had my throat stretched 4 times. I choke on food and medicine. Is EDS the reason I can't talk loud or yell loud? My son and I talk really low and when we try to be louder it strains and hurts.

[@sherryobar5750]

Wow, good question.

[@noahlundberg3288]

Hm my vocal cords keep getting really swollen and irritated asif harmed and the docs are clueless, keep putting me on omeoprazol but it doesn't settle, kEDS. Laryngoscopy done obviously.

[@jobell7356]

OK so my comment is, how to get a referral. As we come out of covid-19 lock-downs, I want to get on with my life and choking is a major part I'd like to leave behind.

[@MRAIDANGWALSH]

Professor Martin Birchall, have you looked at Porphyria types in these patients' urine, blood, stool, Genetics? I am Negative thus far on VP Variegate & CP Coproporphyria, not tested yet for other types. I have seen a lot with this in all types of EDS...My urine darkens in the Sun. I had clear urine when doing the sample & hydrated. Worse in color darkened when I have bad abdominal pains. HSD, I have not been tested for any crossovers in EDS no panel was done. I even show possible Eagle Syndrome as well. I suspect I have AIP or EPP Porphyria type. I do not believe Porphyria is rare as they say I feel it is rarely looked at & numbers will be higher mush higher in numerous illnesses...