Weird Way to be Diagnosed

Some of you have been following my diagnostic journey, which started with a neck CT at Mayo Clinic (MN) that showed a calcified stylohyoid ligament. The rheumatologist there wrote me and recommended I see a local ENT (TX) for evaluation of possible Eagle's syndrome--and for surgical treatment if the diagnosis was determined.

I saw my regular ENT (Austin, TX) and he never did diagnose Eagle's for sure. Didn't even look at my CT scan while I was there. But he did tell me the surgery wouldn't be a good option so he would only do it if we both felt it was the only choice. He wanted me to have other work-ups first.

I called after the appointment to ask the nurse if the doctor had a chance to look at the CT scan and if he diagnosed Eagle's. She said he did look at it, and would need other diagnostic tests before diagnosing Eagle's. She said the next step was the videostroboscopy. (I couldn't figure that one out, the scope sees inside the larynx, not outside that structure.)

I went to his associate for a videostroboscopy to rule out/in vocal cord dysfunction. This was another differential diagnosis (not for the ligament problem, but for some of my symptoms). The ENT who did the scope said I do NOT have vocal cord dysfunction. I asked her how the scope was supposed to determine if I have Eagle's since the nurse said the scope was part of the diagnostic process for Eagle's. She said that was ridiculous. Of course the scope couldn't see the calcified ligament to diagnose Eagle's. We did have a good talk about some other issues to conserve my voice. (I have serious dryness issues from the Sjogren's syndrome and also thick mucous.)

This ENT did talk to me about the possible Eagle's syndrome. She told me to put up with it as long as possible and THEN ask for more evaluation because the surgical treatment for it is not a great option. And she said prior to surgery they sometimes do steroids (which I'm already on) or injections. She didn't think the injection would help my symptoms.

So, when I got home I looked at the receipt, and it said, "Neck mass/swelling." WHAT? So I called the ENT's nurse to ask what this meant. She said it was what they marked for patients who have Eagle's syndrome because that's too rare to have it's own diagnostic code.

What a way to find out I have Eagle's syndrome! Finally a diagnosis! But I wouldn't have known for sure if I hadn't have read my own receipt. CRAZY! For now I'm going to wait it out. I might send my CT scan and medical history to an "expert" doc to see if he has any other recommendations. Have any of you done that before to save a trip?

One other question: Is there a way to tell if the calcified stylohyoid ligament is causing a risk to any nearby structures? The ENT told me the treatment is only to control the pain--and I can put up with a lot more pain before I take on the risk of another surgery. But if there's a risk it could endanger something else, then of course, I don't want to put off getting this evaluated further. Your thoughts?

Thanks, as always!

Kathy (aka WillisWay)

. Since you have Sjorgens and other issues, you are dealing with a lot and you want to be very careful. You say you can deal with a lot more pain before taking on the risk of another surgery. Unless your Eagles is causing you to have low blood pressure, dizziness, fainting etc, which would indicate that it is encroaching on an artery, then it is not considered dangerous. However, some of our members, also feel that surgery at an earlier date might have prevented nerve damage. That is an opinion. This is a very irritating dilemma for us.

Surgery is a personal choice, not to be made on a whim. You are right to think about it, you will know if and when you want or need surgery, but in the meantime, you can study and make an informed decision.

The problem most of us have found is that you cannot control the pain very well unless you take nasty drugs and even then it is no solution. That might be the clue for you if you need or want surgery for yourself.

So, getting further evaluation with a doctor known to understand Eagles, would put you in a position of being able to know who to use if you should choose surgery and possibly give you more information on whether it is a danger to you specifically. Most of us are in so much pain, we just have surgery and then find out if the doctor was capable or not. Not a good idea when you have so much information on this website available to you.

Perhaps just knowing that you have Eagles and knowing what you can do if it becomes overwhelming is enough for you now. Bless you.

I think others have sent their information to expert doctors to avoid a trip. Hope someone comments on this for you.