Can someone give a list of symptoms. I know there is one here thats broke down to nerves, but i would like a simple one so i can try and explain easier to a new doctor. Thank you all in advance.
A member did a survey quite a few years ago asking about common symptoms- it was quite a small number who replied, but here’s a quick list of the symptoms reported which might help you:
Neck pain 90% - 18
Ear pain 95% - 19
Jaw pain 75% - 15
Eye pain 60% - 12
Throat pain 85% - 17
Swallowing difficulty/ pain 65% - 12
Choking sensation 40% - 8
Foreign body sensation in throat 85% - 17
Visual disturbances 50% - 10
Tinnitus 60% - 12
Pulsatile tinnitus 20% - 4
Hearing problems/ underwater sensation 45% - 9
Ears popping 50% - 10
Arm numbness 50% - 10
Shoulder pain 65% - 13
Limited neck movement 70% - 14
Limited movement in shoulder(s) 30% - 6
Heart palpitations 40% - 8
Neck pressure/ bulging sensation 35% - 7
Hypotension 20% - 4
Orthostatic Hypotension 20% - 4
Hypertension 15% - 3
Cranial Hypertension 20% - 4
Pressure in the back of your head 50% - 10
Twitching 35% - 7
Pain with yawning 60% - 12
Excessive yawning 35% - 7
Headache 75% - 15
Answer Choice: Responses:
Change in voice 55% - 11
Hypersalivation 35% - 7
Paplpable mass in neck 35 % - 7
Suspicion of Thoracic Outlet Syndrome 15% - 3
Episodes of feeling very unwell 60% - 12
Worsening of symptoms in cold weather 40% - 8
GI problems 30% - 6
Exercise intolerance 45% - 9
Numbness/ tingling in head or face 45% - 9
Muscle spasms in neck 40% - 8
Speech difficulty 10% - 2
Tongue deviation to the side 15 % - 3
Suspected TIA’s 15% - 3
Circulation problems 30% - 6
Difficulty sleeping 65% - 13
Positional symptoms while sleeping 65% - 13
Symptoms worsening at elevation 20% - 4
Symptoms worsening when raising arms above head
The original discussion/ results can’t be accessed any more, but luckily I’d saved it! Here’s a link to the whole report in the Newbies Guide Section:
Survey Results - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Thank you so much! I trued to open that one earlier but it didnt work! I appreciate this so much!
By foreign body sensation in throat,it could feel like a number of things correct? Maybe sharp or swelling and mucus? Thats how mine feels other than something sharp.
Some people describe it as a feeling like there’s a bone stuck in their throat while others have the feeling of mucous or that their throat is swelling closed (but never does). That particular symptom seems to vary quite a bit. Many people don’t have that one at all nor do they have a sore throat.
It’s generally caused by an irritated nerve giving that sensation, rather than actually something poking in the throat, so as Isaiah says, the sensation varies!
Mostly mine feels swollen or mucusy…once in a while it will feel like somethinf sharp poking but thats a little further down. Seems like maybe by the hyoid bone. Sometimes the location varies. Its strange.
That’s what my lump in the throat feels like- swollen, like post nasal drip that you can’t swallow. The location varies some too. Sometimes it’s higher like where my throat meets the back of my nose, sometimes a bit lower. I don’t have an Eagle’s diagnosis yet, just a high suspicion while I wait for a ct.
I dont have one either, i have to wait to see a new ent in june! Ive been dealing with this for 3 yrs. My family doc had one fone 3 yrs ago but they never checked styloids. So ill have to get them from the hospital and see if someine can check them.
I have a dental xray that I’m pretty sure shows elongated styloids, but getting a doc to consider eagles and order a ct is hard! I had one ent say, “no you don’t have that. I’ve only had one patient in my career with it.” That may be true if he doesn’t ever order a ct to look for it! On to another ent. I hope you get clarity soon!
I also have a dentist appt here soon so maybe i can get them to look as well
That’s terrible, but it seems to be the norm w/ ENTs in your state. Even those on our list are inconsistent in diagnosing & being willing to help ES patients who end up going to other states & having surgery for their ES which gets diagnosed by out of state docs as well.
I hope your appt is helpful & not another dud!
Me too fingers crossed. Living every day with not knowing what is wrong is terrible!
You can request that your dentist do a panoramic x-ray so (s)he can look at your styloids & give you input. They will be visible in a pano x-ray if they’re elongated. That would be a good starting point. If your dentist doesn’t know about ES, you can post your pano on here & we’ll be happy to give you an opinion.
Thats a fantastic idea. I will definently ask!
@Sara did you get any clarity from your ent?
Like “post nasal drip you can’t swallow”. Yes. That’s exactly how I describe my own situation.
Re: The dental panalypse. My story
I went to my ENT for a sore throat that persisted and without any infection. (I am a nurse…and I get this 6th sense when there’s something amiss in my body. ) I knew the doc as I had seen him for something else many months ago. After he listened to me and examined me ( real well ) he asked me if I had heard of ES? Nope I had not. Because of the history and his exam he seemed to have zeroed in on it. Ok so he orders an ultra sound and neck xrays. I go home and start reading medical articles and learning in a crash course situation all about ES. I had come to learn the DENTAL PANALYPSE xray often is revealing. I had my own on my computer taken months ago. Linear calcification was clearly evident on that runway from styloid to the hyoid. ( I am an xray tech and an RN) I made an immediate repeat visit to the ENT. We looked at that PANALYPSE . He ordered CAT scan with contrast. Attn: cone and 3-D the styloid. He specified the particular radiologist to read the CAT in that she had a good eye and was in the know on ES. So from "sore throat to pretty much on the good path to ES dx " all in 2 weeks I fell blessed. …I owe to this group and what is know available on line. Many here in the forum have had to suffer through too many months and too many doctors without a diagnosis. I appreciate all of you.