It’s been a while since I’ve posted anything. I was waiting to meet with an ENT locally my PCP referred me too.
In order for this ENT to see me for Eagles he wanted a regular CT of the neck. CT results showed “elongation of styloid process and anterior halves of stylohyiod ligaments pacified bilaterally, which may result in Eagle’s Syndrome”.
After waiting 10+ weeks to get into the ENT, who has never seen anyone with Eagles, he states, “most ENT’s don’t even believe in Eagle’s Syndrome”. That was a little discouraging. He had excuses for most of my symptoms. Lump in throat was GERD, jaw and neck shift along with all other symptoms due to my TMJ prosthetic surgery that was over 12 years ago. He felt like the radiologist exaggerated the elongation of the stylus process. So he was really no help and I’m left with finding someone else to diagnose. He did at least give a referral to cardiovascular surgeon to run appropriate tests for possible carotid compression since I was recently diagnosed with syncope which is triggered by different positions of my head.
It’s quite frustrating because I have other surgeries I’m waiting to have done but feel the Eagles will need to happen first. Like my hooded eyes with major droop on the left which is the side that everything is displaced too.
It’s crazy that even when you have a CT report stating that you have elongated styloids & calcified ligaments, that your ENT was still in denial about it. We do suggest that if possible members see one of the doctors on our list as at least they do believe in ES…are you able to get a referral to someone in your area? There are quite a few in Florida; Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
You can search the site for mentions of the different doctors …I hope that you’re able to see someone soon, frustrating for you when you have other surgeries you need to get done, sending you a hug
@aholtswarth - I’m sorry you had such a disappointing appt after a very long wait! At the risk of sounding overly optimistic, your hooded eye issue may improve after you have ES surgery. We’re finding more odd symptoms caused by the nerve irritation/damage that ES causes turns around to at least some degree once the affected nerves heal. Granted I don’t know the history of your eye, so I expect there’s more to your situation than I can guess about.
If you’d like a non-professional opinion, you’re welcome to post your scans on the forum. At the very least, @Jules & I can give our opinions. We do best w/ 3D images. RadiAnt Viewer https://www.radiantviewer.com works best for PCs & the Bee Dicom Viewer App works best for Macs if you want to convert your CT scan yourself. That will also enable you to see what’s going on in your neck more easily.
Many of our members have had to travel a distance to see an experienced ES surgeon so I hope you find someone in your state to help so you don’t have to travel too far.
I do believe the left eye is caused by the Eagles. I have a significant droop on that side compared to the hooded on the other. My left side is where my ear and jaw have shifted and the skin is saggy. It’s also the left ear that is muffled. I do have significant tissue swelling and tenderness on my right styloid process you can palpate on the outside of my neck.
I’m not sure how I would get a copy of the CT other than driving there and getting a disc. Then to download them and all is more than I can mess with right now. I’m comfortable with what the radiologist read.
I’m glad you feel confident w/ the radiologist’s reading. I recall you’re in the medical profession so you do have “a clue” about these things. I hope a different doctor who is more experienced w/ ES will be a lot more helpful for you.
In the future when you get a scan of any type, request a copy of the scan on CD before you leave the radiology clinic. It’s alway important for you to have your own copy as many doctors still don’t rely on soft copies but want a disc w/ the imaging on it. You may be able to get the lab that did your CT scan to send you a CD though there may be a fee for that.
