I am wondering if anyone has ever had difficulty swallowing, especially meat. I know my swallowing is not good, and I have lost my gag reflex, which makes things worse. I am choking on meat, to the point of scaring myself. I am unsure when to see a doctor for this. I’m tired of seeing doctor and being told to live with it. I am beginning to get scared. Please help.
Hi Donihue,
I did have that problem before I was diagnosed w/ ES. I choked on meat badly enough that I had to have the Heimlich maneuver done on two different occasions, or I wouldn’t have made it. Both were horrible experiences. This has not happened again since I had both of my styloids & stylohyoid ligaments removed. It sounds like you’ve been living w/ ES but haven’t had surgery. Having your styloid(s) removed would likely make a big difference. Your gag reflex might even come back.
Have you checked out the latest doctors list? Have you tried to get a referral to any experienced doctors? Surgery is likely the only thing to help you, unfortunately…Big hugs to you, sounds pretty scary.
Hi Donihue, I haven’t yet been diagnosed with ES, but have a lot of the common symptoms, after having everything else ruled out, I’m convinced it is what I have. I quite often choke on my food, I find it helpful to take small bites; if you are really having trouble, I would suggest avoiding the common foods you choking on. I have at times choked on my own saliva, of course, I don’t know if this is related to ES or not. Best of luck to you.
Thank you for responding. I have been trying for 2 years to get a doctor to listen to me. No luck thus far. I am wondering if anyone has respiratory problem also. I have noticed an increase in shortness of breath with just every day ADL’s. I am hoping that my PCP will begin to help me. They just ordered an CT of chest for the SOB I’m having.
Did you try to get a referral to any of the doctors on the latest list? If you’ve been diagnosed, I would hope that one would help you? If not try a skull base surgeon/ Otolaryngologist if there’s any near you rather than an ENT.
Hi Donihue,
I also had the shortness of breath issue. In my case it was more often when I was exercising - I’d get winded & couldn’t catch my breath. Additionally, my blood pressure would drop rather than rising w/ exercise & I’d feel very light-headed. I chalked it up to an irritated vegus nerve which is one of the cranial nerves often affected by ES. The problem stopped after my right styloid was removed.
I would suggest, since you’ve been diagnosed w/ ES, that you get an opinion from one of the more experienced doctors listed in our US Doctors’ list. These include Dr. Cognetti & Dr. Newman both in PA, Dr. Milligan in AZ & Dr. Samji in CA. I think they will all do a phone consult for a fee of which your health insurance may pay a part or all. You would need to contact whichever office you choose to find out what info they need ahead of time & to make your appt. Regarding Dr. Samji, it’s most efficient to email is med assistant rather than calling & waiting for a call back. Her contact info is
lauren @ caminoent . com (w/o the spaces). I hope this info is helpful!
I had a swallow test done they said I was mostly fine came home ate dinner and choked on my food it often even goes down the wrong pipe or showed it .doing it on screen but would push its self back out before going all the way down wrong pipe plus it causes so much pain in the back of my head when I chew.
I feel for you.
Hi Donihue,
Choking like that can be scary. I started having difficulty swallowing ~10 years ago, barium swallow test was normal and modified barium test showed a delayed pharyngeal reflex but no one know what to do with it so i went on ignoring it. ~4 years ago I started to have SOB - just at rest in bed as well as throughout the day, again many many specialist and test later no one could find a problem and told me I was fine but I could not walk more than 700 feet without my legs giving out. Skipping ahead, turns out I had a skull base CSF leak resulting in brainstem compression (the part of our Brian that controles these things and others), swallowing and SOB is much improved when I am sealed. Now I have been diagnosed with ES and awaiting venogram for next week (styloid 49mm and 37mm with jugular compression on one side)
Point of my story is your swallowing problems could be coming from a few different places and a skull base Otolaryngologists is a great place to start as they should be knowledgeable with both of these problems. Don’t give up until you find an answer!! Hang in there, thinking of you 
2 Likes
Thank you so much for the response. I just saw my pcp and she is setting up a swallow study and an edg test. She told me if those come back normal, she would then contact a neurosurgeon to see about getting these calcified ligaments removed. Yay, finally someone is listening to me.
1 Like
YAHOOOOO Donihue! So glad you found someone who can listen, is willing to learn and act with your best interests in mind - massive success 
(funny what gets us excited) Don’t let the SOB get lost in the shuffle…Be well, good luck! n
Donihue -
If the neurosurgeon is unwilling to do your ES surgery, look for an otolaryngologist or head & neck surgeon w/ a skull base specialty. These are the specialties that more commonly work in the area of the neck where the styloids & styho-hyoid ligaments are.
Thank you Isaiah. I will consider this. My doc wants to do a swallow study. I’m just concerned because she mentioned if my swallow study was abnormal, I wouldn’t get the referral to the neuro surgeon. So I’m just praying that it comes back normal, I guess. Lol
I know, finally after almost 3 years, I might get this all taken care of. I am totally elated.
Hi Donihue,
I will pray for that for you as well - a normal swallow study. ES can affect swallowing so if your results are “off” it could be because of nerve impingement caused by your styloids or calcified ligaments (sorry I don’t remember what you have).