Hello Everyone. I was diagnosed with Eagle’s syndrome last year. I know that its rare but there are risks associated with this condition. I wonder if getting a medical ID bracelet is a good idea. Tell me what you think…
That’s a good question. For most people, the symptoms caused by ES would not require a medical ID bracelet. There are a very few cases where vascular compression by the styloid(s) occurs causing TIAs or other stroke-like symptoms. Other symptoms from vascular compression can be fainting, vertigo & migraines. In these cases, once the patients are diagnosed w/ ES, they usually have surgery as soon as possible to remove the styloid(s) & reverse the symptoms of the compression. That would be the only type of situation that might call for a med ID bracelet but even then it would be very short term.
What type of symptoms are you having from ES? Are they concerning enough that you think you should wear some type of medical alert?
Ben’s Friends have partnered with Backpack to store medical info, I don’t know if this would be of any interest to you:
Since I was 17 I have had “migraines” But they only diagnosed me with them for lack of a better diagnosis after ruling out all else after a spinal tap, MRIs, cat scans, EEGs. I don’t typically get any pain with the migraine (although when
there is pain it’s only after the stroke like episode). My problems started when I was 17 (I’m 50 now) after I couldn’t talk, was seeing half of everything, would lose thought immediately after I got it. Couldn’t count from 3 backwards. I have gotten these
over the years since maybe twice a years. Sometimes 4 or 5 years would go by without an episode. The last time I got it I was trying to brush out what I thought was a tonsil stone in my tonsil. I think that’s what prompted it. Another time I was eating a hamburger
and it went down my esophagus so slowly it prompted an episode. Now I wonder if all along this was a result of the Eagles syndrome and not migraines at all. I wondering if the elongated styloid is close to an artery causing these symptoms. When I was diagnosed
last year I had gone the ENT because I have had chronic problems with tonsil stones that cause bad breath. He said that behind my tonsil was a hard mass. That prompted a cat scan which identified Eagles but he said that I had it on both sides and the styloid
is bigger on the other side. I typically feel like something in always in my throat on the left side. But apparently my problem is more on my right side according to the cat scan. I am terrified of surgery. I don’t suffer from chronic pain from the Eagle’s
so I’m wondering if Surgery is worth it at this stage as it has not impacted my quality of life. But I am afraid one day it may take my life in what may appear to look like a stroke. If in fact what I thought were migraines has turned out to be vascular compression
all this time.
You can request to have a CT scan w/ contrast as this will show if there is vascular compression being caused by your styloid(s). The internal carotid artery &/or jugular vein are what typically are affected by ES. If you get that type of scan done, your head needs to be in the provocative position during the scan i.e. the position that brings on symptoms. Having your head in a neutral position will not show compression. Usually the provocative position is w/ your head turned to the left, right, tipped back, forward or tilted left or right. You may need to experiment to see which position(s) seem to cause you problems.
It’s entirely possible you’ve had ES for many years & your symptoms have only been migraines & the feeling of something in your throat. These are both common with ES. Even in the absence of other symptoms, your life would be more pleasant w/o the migraines. There are risks with surgery though. You’ll need to decide whether to have the CT w/ contrast. If you do, & vascular compression is seen, then you’ll have to choose what seems the best next step for you.
I agree with Isaiah that it might be a good idea to get a CT with contrast & see if there’s any vascular involvement, then weigh up the pros & cons of surgery in light of that. I managed the pain with ES for a while without surgery as I was worried about the risks. Then I started getting vascular symptoms, & they were scary enough to make my mind up to have surgery- it went very well & I feel so much better!