Giant lump at the very top of my throat. Help or advice?

Posted by brcc @brcc, Sep 21 8:29am

I’ll try to make this as brief as possible. I have RA and several other autoimmune diseases. I have chronic sinus issues and have been seeing an ENT for years (3 sinus surgeries since 2020). In the last 12 months I’ve suffered terribly with thick saliva, constant throat clearing and hawking, coughing, shortness of breath, burping, hiccups, pretty severe nausea (i’ve lost 15 pounds), and complete loss of taste and smell. I think the acid is traveling all the way up to my sinuses. I feel like i have a giant lump at the very top of my throat. Has anyone else had symptoms similiar to this? I’m desperate to find out what’s going on. I no longer enjoy cooking or eating and i feel like it’s affecting my mental health as well. I don’t drink coffee, tea, soda or milk, only water. i can’t say my diet is bad because i simply don’t eat. I’m desperate for answers. I had a brain MRI that showed nothing irregular. Any help or advice would be much appreciated. Thanks!

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Profile picture for bruizersmom @bruizersmom

Janell @jlharsh, no one has looked at the second lesion yet and it looks like the hospital's surgeon will be the first to do so. Option (1) Remove and biopsy, result, negative. (2) Get oral paste and oral lidocaine gel to cover the site and lessen pain. Result: things continued to get worse so oral surgeon (OS) sent me to dentist for number three. (3) Have a mouth guard made by my dentist which will cover the area and better allow for healing. Result: Only able to tolerate for 2 hours on day one, and the time dropped to minutes quickly. Now it"s impossible to use because of my gag reflex and panic. (4) "If that doesn't work, we'll have to consider more surgery, this time in a hospital so you can get the site sutured and we'll do another biopsy in case we need to do anything else"
And now I'm waiting to hear from Scheduling at the hospital. The 2 docs in OS called this a non-healing lesion, and explained the slow healing (no healing) was because of my age (77) but when I went back twice for pain and worsening results, I was only given a visual exam .. .. I should have told them to touch it, because twice I was told that it looks 'just the same as before'.
Atthis point I really don't expect the surgery planned, primarily because I'm now looking at 2 areas to be sutured which will be a HUGE problem for them - and for me. I think when the hospital gets a peek, they might just send me elsewhere, but no clue where.

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@bruizersmom, thank you for explaining all of that. You really have worked through a series of options—removal and biopsy, medication for the pain, the mouth guard to protect the area—and now you’re waiting to see what the hospital surgeon thinks about both the non-healing area and the second lesion.

I’m glad you shared the coughing and choking sensations you have in common with @brcc, because it shows how similar symptoms can sometimes have very different causes. In your case, you know there is an actual lesion, while @brcc originally described the sensation of a lump while trying to understand what was causing it. @brcc had reached the point of seeing ENT and was heading to GI when we last heard from her.

You mentioned that you’re not sure the surgery they’ve discussed will even be possible once they see both areas. Has anyone talked with you about what the next step might be if another surgery isn’t recommended?

I also noticed on your profile that you live with Parkinson’s. With the coughing and choking you’ve described, has anyone on your care team evaluated your swallowing or talked with you about whether that could be contributing?

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Has your ENT prescribed medication for gastric reflux? The “lump” could be related to acid. Your feeling is real and you need relief so as not to lose more weight. Blending your food and drinking might be helpful. There are also high calorie and high protein drinks you might try.

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Profile picture for Janell, Volunteer Mentor @jlharsh

@bruizersmom, thank you for explaining all of that. You really have worked through a series of options—removal and biopsy, medication for the pain, the mouth guard to protect the area—and now you’re waiting to see what the hospital surgeon thinks about both the non-healing area and the second lesion.

I’m glad you shared the coughing and choking sensations you have in common with @brcc, because it shows how similar symptoms can sometimes have very different causes. In your case, you know there is an actual lesion, while @brcc originally described the sensation of a lump while trying to understand what was causing it. @brcc had reached the point of seeing ENT and was heading to GI when we last heard from her.

You mentioned that you’re not sure the surgery they’ve discussed will even be possible once they see both areas. Has anyone talked with you about what the next step might be if another surgery isn’t recommended?

I also noticed on your profile that you live with Parkinson’s. With the coughing and choking you’ve described, has anyone on your care team evaluated your swallowing or talked with you about whether that could be contributing?

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@jlharsh, yes, I've been to an ENT, yes I've been sent by one of my neurologists for an endoscopy plus I've worked with a therapist on my 'swallowing' problem.
I do have a problem sometimes, mostly when taking my meds. Bear in mind, when having thqt therapy I was unaware of the lesion which sometimes catch pills, so I accepted that this was a minor problem, shown by a recorded barium swallow test. Everyone thought this was what they saw from test pictures, but now I'm guessing that they couldn't see the lesion if it was there.
Now it's more than swallowing - it's pain, instant response (autonamic?) of gagging, instant urge to vomit, which I actually do on occasion, and yes, I've had my smallest pills lodge atop the post-removal site.
Also, @brcc and I have the same sensation. When I swallow anything, even lukewarm water, it feels like a lump in my throat, but when I palpitate the area, it's actually a swollen area (lump, if you will) not in my throat, but actually a swollen area at the gag-line of the soft palate. Even before the removal of the 'unhealing wound' as the surgeon called it I had the lump-in-the-throat feeling... .. it's just now bigger, larger, touchably swollen, more pronounced, and painful.
I am taking meds for acid reflux, am under the care of a motility-specialized GI who is familiar with Parkinson's. My neurologist handling my Parkinson's is a Movement Disorders Specialist and refers me to others for any PD symptoms other than balance, walking, etc.
At this point I eat very little since everything is so painful - my mouth, my neck, my teeth, my ears all react to swallowing! Cold is bad. Hot is bad. Lukewarm? yes, bad. Everthing is a mind over matter thing.
@brcc and I share the weight loss, nausea, 'lump', and pretty importantly I was drawn to the 'thick mucus' and 'hawking'. I've been taking guafinesin for over 20 years, yet I still was 'hawking', that deep noisy sound that a guy would call 'hawking a loogy'. There's no feeling of it coming from the lungs but rather from deep in the esophagus, and I also spit out little squishy but solid yellow-green things which smell of rot if they're crushed. Someone on my PD forum called this tonsil stones and later I took a look and ther it was a sone on my tonsils. Of course there was nothing stuck there when I saw either of the two ENTs.
This morning I finally got the phone call and I'm scheduled for a pre-lim visit with a surgeon on 10/09/26 at the Yale-New Haven Smilow Cancer Hospital in New Haven, CT.

REPLY
Profile picture for Janell, Volunteer Mentor @jlharsh

@bruizersmom, thank you for explaining all of that. You really have worked through a series of options—removal and biopsy, medication for the pain, the mouth guard to protect the area—and now you’re waiting to see what the hospital surgeon thinks about both the non-healing area and the second lesion.

I’m glad you shared the coughing and choking sensations you have in common with @brcc, because it shows how similar symptoms can sometimes have very different causes. In your case, you know there is an actual lesion, while @brcc originally described the sensation of a lump while trying to understand what was causing it. @brcc had reached the point of seeing ENT and was heading to GI when we last heard from her.

You mentioned that you’re not sure the surgery they’ve discussed will even be possible once they see both areas. Has anyone talked with you about what the next step might be if another surgery isn’t recommended?

I also noticed on your profile that you live with Parkinson’s. With the coughing and choking you’ve described, has anyone on your care team evaluated your swallowing or talked with you about whether that could be contributing?

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@jlharsh I've gone thru the swallowing tests and associated therapy. The lump-in-the-throat feeling isn't related to either Parkinson's or to a swallowing disorder; this is exactly what @brcc mentioned, a clogging in the throat, down by the adam's apple which feels like it's choking me and the automatic response is a deep, gutteral, loud forceful cough (Imagine your uncle or dad doing what we called Hocking a loogie. Absolutely gross, and followed by spitting out a wad of goo) I was just telling her that she may get an ENT response she doesn't want: there's nothing wrong. Exactly what I got. While the surgery at Yale's cancer face-and-throat center giving me another biopsy which was cancer-negative, I now had a bigger open wound. It was this cough I just described which cannot be stopped with a cough-suppressant that set back my healing! Just days after going home with instructions to forget the oral paste, miracle mouthwash and topical lidocaine and switch to saltwater rinse I coughed. Just ONCE. This was enough to undo all the healing I'd done.
So far no ENT or GI or PCP had been able to say what that choking feeling is all about, and is not in eachs field of expertise. If @brcc gets an answer, I'm all ears!

REPLY
Profile picture for bruizersmom @bruizersmom

@jlharsh I've gone thru the swallowing tests and associated therapy. The lump-in-the-throat feeling isn't related to either Parkinson's or to a swallowing disorder; this is exactly what @brcc mentioned, a clogging in the throat, down by the adam's apple which feels like it's choking me and the automatic response is a deep, gutteral, loud forceful cough (Imagine your uncle or dad doing what we called Hocking a loogie. Absolutely gross, and followed by spitting out a wad of goo) I was just telling her that she may get an ENT response she doesn't want: there's nothing wrong. Exactly what I got. While the surgery at Yale's cancer face-and-throat center giving me another biopsy which was cancer-negative, I now had a bigger open wound. It was this cough I just described which cannot be stopped with a cough-suppressant that set back my healing! Just days after going home with instructions to forget the oral paste, miracle mouthwash and topical lidocaine and switch to saltwater rinse I coughed. Just ONCE. This was enough to undo all the healing I'd done.
So far no ENT or GI or PCP had been able to say what that choking feeling is all about, and is not in eachs field of expertise. If @brcc gets an answer, I'm all ears!

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@bruizersmom
ENT at Mayo tells me its a "globus sensation" after neck surgery. Its been 15 mos since surgery; they said if it doesn't resolve sooner rather than later, it may never resolve. I have palpable lumps on BOTH sides of my neck which they say are irritated or dormant salivary glands. I have 8 or more nodules all over my thyroid, none of them yet at that magical 1cm mark where they do something about them. I can feel those nodules w my fingers as well. They are NOT my imagination. Occasionally the coughing, choking and gagging causes a sore throat. I know, its crazy.

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Profile picture for gangcarotid1 @gangcarotid1

@bruizersmom
ENT at Mayo tells me its a "globus sensation" after neck surgery. Its been 15 mos since surgery; they said if it doesn't resolve sooner rather than later, it may never resolve. I have palpable lumps on BOTH sides of my neck which they say are irritated or dormant salivary glands. I have 8 or more nodules all over my thyroid, none of them yet at that magical 1cm mark where they do something about them. I can feel those nodules w my fingers as well. They are NOT my imagination. Occasionally the coughing, choking and gagging causes a sore throat. I know, its crazy.

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@gangcarotid1 Hmmm. I've got swollen areas on the neck right below the ear. Does the cough produce anything? Biggest problem is trying not to cough because yes it irritates the throat. but also damages any healing of my soft pallet surgery. Drinking something kind of thick staves off the cough for hours..Boost or Breakfast Essentials will do it for me. Cough suppressant does nothing to this deep-in-the-throat irritation. Yep, crazy.

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Profile picture for bruizersmom @bruizersmom

@gangcarotid1 Hmmm. I've got swollen areas on the neck right below the ear. Does the cough produce anything? Biggest problem is trying not to cough because yes it irritates the throat. but also damages any healing of my soft pallet surgery. Drinking something kind of thick staves off the cough for hours..Boost or Breakfast Essentials will do it for me. Cough suppressant does nothing to this deep-in-the-throat irritation. Yep, crazy.

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Cough doesn't produce anything. Is just an annoying irritation.

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