That all sounds very unpleasant and very much like Eagle syndrome. You can be a broken record here. This is a place with lots of concerned ears…uh…eyes
Take a copy of the article from the link earlier in this thread to your next appointment incase there is further debate on the subject.
I also received this link from redbird733. It’s a fantastic article written by a doctor on our US ES Doctors’ List - https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/716191
You could print it &take it w/ you as well.
How was your appointment this week? Thinking of you.
After going to the Vanderbilt Vocal Center they concluded I have partial paralysis of my vocal fold. I go for a ct scan w/contrast on the 6th to rule out if there is a mass (or anything else) pressing on my laryngeal nerve. They had heard of eagles but said they couldn’t really tell from the pano xray from my dentist. Seemed pretty put off about the idea of it because it is “SO RARE” so I guess the ct scan will speak for itself. More neck pain than usual today and of course my unreliable voice. If the ct proves that its nothing than I will have to go for possible a collagen injection and if over time it doesn’t heal itself we talk surgery. So that’s where I’m at as of right now. At least I have somewhat of an answer.
Hi amanda81 ~
Sadly, some of the biggest teaching hospitals are the ones least informed about ES (& probably other rare syndromes & diseases). You’d think they’d be on top of the “unusual” because they get great research grants & funding.
You need to make sure your styloid processes are measured & that they check your stylohyoid ligaments for calcification. These things can be overlooked by a radiologist who isn’t certain about ES. If they deny you have ES based on your CT scan, I recommend you send your scans & the written report to one of the ES doctors on this forum’s ES Doctors’ List who has significant experience w/ ES to get a second opinion before dismissing the diagnosis completely. Dr. Cognetti in Philadelphia, PA, or Dr. Samji in San Jose, CA, would be good 2nd opinion options. They both do phone consults (for a fee).
I’m only being a bit pushy because your symptoms conform significantly to those of ES & even if it is “SO RARE”, it still exists & should be accurately diagnosed especially by an institution w/ the resources to do so.
I agree with Isaiah, we don’t want you on here five years from now still chasing answers. Well, rephrase that - we will welcome you but we would never want you to suffer for years without a diagnosis that possibly could have been made now. A trained eye looking at the test you’ll have is your best bet. Try to see the order before you have the scan. It should say “CT of neck”. I know for me both with and without contrast would have fallen under the same office visit copay but I went with no contrast since that’s what Emory wanted. Keep us posted!
My order says, " Please scan from skull base to aortic arch to rule out a mass along the recurrent laryngeal nerve in patient with unilateral vocal cord paralysis" Can I request for my styloid processes to be measured and the calcification to be checked?
You say, ‘RARE’ Including myself I have come across 7 people with ES in approximately a 24 mile radius from where I live!!!
amanda81 - ABSOLUTELY!! Don’t let the doctor dismiss your request. It’s your body & your money/insurance paying the bill. These people are working for you. You can “call the shots” in some respects. The styloids/s-h ligaments will be visible in a CT scan of that magnitude. If you don’t request it, the radiologist will most likely only look at what your doctor is requesting even if the styloids are abnormal &/or ligaments calcified. Head position is important though when checking styloids so letting them know well ahead you expect them to check styloids & ligaments should allow them to make sure they get your head in the correct position(s) to be able to see & measure them.
cjeagle - It’s thought there are many more people w/ ES than are diagnosed. We are the lucky ones for two reasons - we’ve found this forum & are informed, & many of us have found great, supportive doctors & surgeons who have helped us culminate our ES journeys & get back to more normal lives.
My dr said, “RARE”. Not me. It seems to be more common than I thought. I think a lot of it has to do with doctors not knowing enough about it. I think they dismiss it because they may not know about a syndrome I happen to know a lot about after reading countless testimonies and studies. The couple of times I’ve mentioned it I’ve been made to feel like I’m crazy for even thinking it’s possible.
The response you’re getting is typical of the uninformed part of the medical world. RARE doesn’t mean non-existent & that’s how they treat it - as non-existent. They should leave no stone unturned when investigating the diagnosis for something such as vocal loss.
I definitely agree that it’s not that rare, just mis-diagnosed! It would be interesting to get Dr Samji & Dr Cognetti’s views on how rare it is given the amount of patients they see…
How soon can the test be scheduled? I remember having to wait about a week for an appt but I chose a diagnostic center that billed as “office setting” versus our local hospital where I’m sure I could have done a walk-in but the billing would have been totally different. I had to find a balance between my urgency and frugality. I had already handed over cash for acupuncture, chiropractic care and a TMJ mouthguard. Anyway I hope you can get the test soon. I walked away with a cd in hand but had to go back 2-3 days later for the paper report. I was very upfront with the lady at the desk the day I had the test that there was suspicion for Eagle syndrome so we put that down as the reason for the test. I cried with joy in my car when I got the paper report and the radiologist typed “calcified s-h ligaments” under findings. It was because he was looking for it that he found it. I think that’s crucial to remember. Let us know when they can get you in.
Afterthought: something I didn’t request at the time of the test was actual measurements of my calcification. Numbers (in centimeters) of the length of your syloids and any calcification that may or may not be present seems like a reasonable request to make of a radiologist.
My apt is on the 6th. I’m going to call today and see what I need to be able for them to check for eagles. I’m afraid they will have to have the doctor add that to the original order. I just don’t know how it all works. Ugggg…
My order only said “Ct of neck” and my intake peprwork at the scan place was very detailed! Call where you are going before your appt. Just over the phone I made it all the way back to a tech who asked the radiologist sitting next to her if he knew about ES. He said yes he could screen for that diagnosis so she made a note in my registration to assign my reading to that particular guy. Work it, girl.
Do not be discouraged. When I checked in for my CT the tech asked me why I was getting a CT. I specifically said Eagles Syndrome and requested the Radiologist measure the S-H ligaments. When I got the report - all it said was patient thinks has Eagles Syndrome. No mention of anything else in report. My ligaments were both over 55mm and thick. Bottom line - stick with it and don’t give up. Get an extra CD of your CT and report and send it to Ohio State University (reasonably close to you). They assessed my case over the phone and did a consult with me. They were easy to get into and cared. I ultimately did not have my surgery there - too far away from home. But close for you.
Such helpful information, sjlash! War stories from the front line!