Maybe I have Ernest syndrome ? It’s similar to Es but the stylomandibular ligament is damaged or weakened. Opinions appreciated ?
The stylomandibular ligament can also calcify. It’s less common than with the stylohyoid ligament. If yours is calcified, it may show up in your CT scan. The ligaments are invisible on a CT scan w/o contrast unless they’re calcified.
It’s worth it to explore every possibility. Again, Dr. Meds may be able to give you an opinion on that topic if/when you see him.
Hey Tim, right now, as I understand it, is that I have Ernest on the right and eagle on the left. it’s kind of a tomato/tomahto situation. Dr. Hepworth told me that basically when they operate, they go in and see what’s going on, and take whatever ligament is causing the problem. Injection into the ligament is also an option for earnest. Although I had the injection, and it maybe helped for a while but was definitely not a permanent fix.
That is good to know Hepworth will address the ligament.
I was told by ENT I have slightly elongated styloid (3cm) and calcite ligament.
From researching FB post, it seemed very few doctors are willing to take out the ligaments (dr Samji being the main one).
I have appt with Hepworth in august for initial consult. Symptoms are so severe I’m barely hanging on.
I’m sorry your symptoms are so bad. Have you tried sleeping w/ your head elevated to see if that helps? Another option is requesting a blood thinner from your PCP as that has helped some of members w/ IJV compression.
Yes I can’t tolerate even the slightest recline so wedge pillow or even being in recliner doesn’t help much.
I’ve been sleeping with bed raised 6 inches for about 2 years now so it’s slightly better than being all the way flat but still 9/10 average pain.
The only way I can sleep is because ambien will take pain away and give me 5 hours of sleep. I wake up with neck feeling swollen. Definitely feels like blockage.
I asked my PCP for blood thinner as I said I actually got some relief when I got plavix in hospital for covid. He wouldn’t go for it.
I kind of recall having this conversation with you previously. I’m sorry I forgot. It’s really sad that your doctor wouldn’t at least Rx a low dose blood thinner to try to help your symptoms. I expect they haven’t helped everyone who’s tried them but the fact that they have helped some people makes that type of medication worth mentioning.
I know you have a bit of a wait for your appointment but at least your on Dr. Hepworth’s schedule. That’s a BIG step in the right direction. In the meantime, please feel free to come here for support & understanding.
Hi, Tim! I was wondering if I could possibly have the same thing. I’m thinking it’s possible to have both Eagle and Ernest. My styloid was def elongated and calcified. I’m now having trouble on both sides. Still the ear pressure, pain, facial pain, knots in my cheeks, pain in my temples, eye pain and twitching. I’m going to a pain clinic on Monday to see about getting injections that are supposed to help Ernest Syndrome. I am hoping they help.
Even if you were only diagnosed w/ unilateral styloid elongation, the other styloid can still cause trouble at a more normal length if it’s very thick, angled, or pointed. The symptoms you have in your face sound like they’re from trigeminal nerve irritation which is quite common with ES. Was anything said about your other styloid (non-surgical side) regarding any of those things, or if you have a 3D image where you can see it, what do you think about its appearance?
Some of our members have had both calcified stylohyoid ligaments & stylomandibular ligaments which needed to be removed during ES surgery. If your stylomandibular ligament is calcified, it should have shown up in your ES CT scan as well as the elongated styloid/stylohyoid ligament. Some of the same nerves can be affected by SM ligament calcificiation.
Please let us know if the injections are helpful in calming your symptoms. I hope they are.