It’s been awhile since the last time I had made a post on here and if you have sometime I’d greatly appreciate if you could read it as it covers all the symptoms and struggles I’m going through to get a better understanding.
Quick run down of symptoms for those who don’t want to read the whole post
Constant gagging sensation right side of throat (tightness)- Symptoms gets worse with stress or anxiety/any emotion or even just talking for to long.
Symptoms worsen with heavy physical activity (working out / sports / lifting things / etc)
Lack of sleep or being tired makes it 10x worse / However good sleep makes it 10x better
Everyday fluctuates, there is no consistency in this thing
Caffeine makes it worse (but not all the time, some days it doesn’t even affect me)
Talking for long periods of time without chewing on a mint or drinking something is impossible (because if I don’t ill gag)
Throat clicks on the right side where this globus is felt when I dry swallow or turn my head to the right- When eating / drinking / chewing the sensation is relieved (especially mints or gum)
When I swallow food its a struggle on the right side (same where there is clicking)
Globus sensation / tightness where the “clicking” is happening (sometimes the click is painful like a sharp feeling)
Sometimes if I yawn to hard it feels like the hyoid snaps out of place and hurts so bad I have snap it back in by putting my chin down to my chest
The clicking only happens when I turn to the right or dry swallow, I can also make it click just by simply placing my fingers on my throat and moving it back n forth.
Xanax Helps It (this is the ONLY medication that has helped. I’ve tried every medicine you can think of and this is the only one that supplies a bit of relief)
about 15-20 min after eating any food it gets worse + throat feels heavy and full.
Strong alcohol helps
Sensation is there all the time , it’s just more “tamed” when emotions aren’t involved. Emotions like excitement, anxiety, happiness, sad, etc. all affect it.
Note: I’m not even sure if the clicking is related to the constant gagging sensation / gagging
but I felt the need to post today because I am feeling at an all time low and mentally struggling with these symptoms and doctors never being able to find anything. I had a lot of hope when reaching out to Dr. Cognetti who was recommended by these forums and they at first though maybe they saw something but then when I got the CT scan with contrast that they recommended, they said everything looks normal. They want me to come into feel the “clicking” sensation and where it’s coming from to maybe get a better understanding and maybe give me botox injections or nerve blockers but I’m just so tired of there being no resolution and no one finding anything. I’ve lived with this for 20 years and have done every test and potential resolve to my knowledge to try and figure this out with 0 success. How can something like this just go undetected in every way shape or form with such obvious REAL symptoms. I’ve talked to so many people going through similar symptoms as me and never have been able to find ANYONE who has been able to fix this , its truly insane.
These symptoms put me and those who go through it in the worst possible mental loop humanly possible. You become anxious over the symptoms (physical sensation) which makes it worse but the symptom is what causes the anxiety and its all you can think about to the point where it controls your life and holds you back from being able to do things, even basic things. A loop that can never be broken until the physical reaction is able to be stopped which is what I can’t seem to figure out on how to do.
I’m hoping by making this post there can be some people on here who can share success stories that have suffered similar symptoms as I have or have found there resolve so I can just have some hope or something to hold onto cause I don’t want to give up on this but sometimes it feels hopeless. I truly think I have clicking larynx syndrome or HBS that is causing these spasms but my “scans” apparently show differently. I’m happy to share my scans as well but Dr. Cognetti and his team already reviewed them coming back normal.
The constant sensation of gagging / choking is the worst part, I could deal with the clicking if the globus wasn’t there but it prevents me from going out in public and doing the things I want to in life and has caused massive anxiety / depression. The ONLY thing that has given me some relief is Xanax / Valium and Alcohol (it relieves the globus but not the clicking) but we all know that isn’t a smart path to fixing it lol.
I would just love if some of yall could maybe drop some success stories or ways to cope with this. I really need some positive vibes and hope to hold on to here, to know there is a light at the end of the tunnel, to know that some of you have went through what I”m going through and found a way to being cured. Thank you so much for reading my long post and wishing you all the best.
@Rfoxed - I’m very sorry that your consult w/ Dr. Cognetti more or less ended with a dead end as far as a diagnosis. Another doctor to consider is Dr. Dewan in Louisiana, but she doesn’t do virtual consults. You’d need to travel to see her. Your story sounds very much like our member @a_catindisguise who was diagnosed w/ clicking larynx syndrome by Dr. Dewan who ultimately did her surgery. Here are links to a couple of her discussions:
It is my firm belief that symptoms can reveal more than imaging does i.e. we’ve had a few members w/ terrible ES type nerve pain but not elongated styloids yet the symptoms ended up being caused by the styloids due to some irregularity in their physical form or features i.e. thickness, how curved, angled, pointed, twisted, lump, etc. they were. Doctors normally won’t consider the physical features of the styloids beyond their length when diagnosing ES. Thus, I believe the greater horns of the hyoid bone might not necessarily need to be super long to be causing problems. They can also exhibit physical characteristics of being very thick, curved, twisted, pointed, etc. Thyroid cartilage itself can also be excessive or calcified which can contribute to clicking larynx syndrome. Dr. Cognetti may not have considered these things when looking at your scans even though he’s very experienced.
Going to see Dr. Dewan may be your best chance at getting a diagnosis since her specialty is hyoid bone/clicking larynx syndromes.
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050 Karuna Dewan, MD | Ochsner LSU Health
I’m sorry that you’re feeling so low with this, & that it’s affecting your life so much…To keep not getting answers it’s incredibly frustrating & disheartening, I would hang on to the hope that Dr Cognetti’s are willing to try & help you, if you can summon the strength maybe try this or see Dr Dewan as @Isaiah_40_31 has suggested.
Thinking of you, & praying that you do get some answers
Thanks Jules greatly appreciated! I am going to try and reach out to her as my last hope if this last appointment doesnt go right with Cognetti. Will keep everyone posted
@Rfoxed I can take a look at your hyoid bone greater horns. The best is the axial view. Do you have your CT on hand?
My left greater horn is in direct contact with my carotids, while my right greater horn is very close to my vertebrae and gets stuck when I swallow or yawn sometimes. Thinking one or both of these might be happening to you.
Our member @churchyardyew also had surgery with Dr. Dewan with a good outcome. Here’s a good post op post that she made -
When you see Dr. Cognetti discuss what symptoms might reveal that your scan images haven’t to see if he’s willing to think outside of his “surgical experience” box. There are always outliers who don’t fit the typical mold for a given illness or syndrome & you may be one of those in this case.
@Rfoxed Looks like a hyoid issue to me. I am happy to look at your scans in more depth but I am about to have a different surgery on Friday (not neck related) and we leave tomorrow. So won’t be back at the computer for a while. But I REEEALLY suggest you contact Dr. Karuna Dewan at Ochsner LSU in Shreveport, LA and go ahead and get on her schedule. Your PCP can write you a referral. Sending hugs.
@churchyardyew - Wishing you well & the best possible results from your surgery tomorrow. Safe travels & hopefully an easy recovery. I’ll pray for you on Friday especially.
Hard to tell if your hyoid is an issue because your 3D model appears to lack the carotids and IJVs. If you can get your hands on the original CT imaging, I can help. Axial view is best! @Rfoxed
I checked the images they put under results and I don’t see any “axial views” can you show me what the axial view looks like? I pulled some more do these help?
So a couple posts above you posted the sagittal view where it shows the side of your head and vertebrae. The axial view slices the individual from top to bottom instead of from the side.
I’ve attached what the axial view of C1 looks like.
@Rfoxed - In your video images, I can see that your styloids are pretty normal length but are chunky. The left one has a “finger” of calcification at its tip & the right one may too. These features of thickness & irregular shape could predispose them to be causing some of your symptoms. The transverse processes of your C1 may be more rotated posteriorly than normal but that is likely an incidental finding that is of no significance.
Your hyoid bone looks ok to me, but as @TML said, w/o being able to see the local veins & arteries, it’s impossible to tell if it may be contributing to your symptoms.
Other things of note are that you have an excess bony growth on the left side of C1 as well as an atypical shape to the spinous process of C2. I don’t know if either of these could be contributing to your symptoms. I just wanted to point them out.
Your cervical spine has mostly lost its lordotic curve which brings your styloid & hyoid bone into closer contact w/ nerves, veins & arteries in your neck. That can be corrected with gentle exercises. (see this discussion: List of my favourite resources on YouTube to learn anatomy)
I suspect my findings aren’t going to be instrumental in you getting a proper diagnosis but they are points of interest perhaps for a discussion w/ Dr. Cognetti.
I appreciate the breakdown very much. I have a feeling that all of this started because of the way I sat as a kid / teenager gaming. I leaned forward and had probably the worst posture humanly possible and potentially screwed something up doing it.
I will give fixing my posture a try to see if that does anything and try those videos you sent me.
I agree I am going to visit cognettis office and go from there but what I will say is this. I’ve talked to people who are going through the same choking sensations I am , constant gagging, etc. and don’t have the clicking so it worries me that the “clicking” isn’t the underlying cause of the gagging / choking sensation if that makes sense. I’m afraid to get the surgery (if it even comes to that since they havn’t seen anything visual yet apparently) and only the clicking goes away and not the globus.
All though to me it seems to “coincidental” that the same side the globus is happening is the same side I feel the click. Idk this whole thing causes such a mental loop as I’m sure you know that drives people like myself insane. Never being able to know exactly whats causing it
