Videostroboscopy?

General
1

When I went to Mayo Clinic they performed a CT of my neck. The radiologist report says:

Conclusion: Left stylohyoid ligament calcification is a potential etiology for the patient's pain, as in the setting of Eagle's syndrome.

Findings: Negative for abnormal soft tissue mass. No cervical lymphadenopathy that meets measurement criteria for pathologic enlargement or shows evidence of nodal necrosis. Suprahyoid and infrahyoid fat planes of neck preserved. Thyroid gland heterogenous attenuation compatible with ultrasound findings of nodules. Calcification along the left stylohyoid ligament.

The rheumatologist who ordered it wrote this in her report after looking at the CT:

In workup of that, she had a CT of her neck done. Interestingly she had a left stylohyoid ligament calcification. This could be the potential cause for the neck pain as in the setting of "Eagle syndrome." She may need a referral to her local ENT to see if that is something that needs to be surgically treated.

Also at Mayo, the pulmonologist wanted my local ENT to perform a videostroboscopy to evaluate for vocal cord dysfunction.

I went to my ENT, who said he could evaluate and treat for Eagle's. I gave a report of that visit in a different post here. When I left there, I felt confused, so I called the nurse to ask what the doctor thought once he looked at my medical history and the CT scan. Did he definitely diagnose Eagle's?

(Keep in mind he ordered videostroboscopy to evaluate for vocal cord dysfunction)

The nurse just called. She says he is not going to diagnose Eagle's based on the exam, the CT scan and the medical history. He said there is more to do in the work-up before he concludes it is Eagle's. He said the next step is the videostroboscopy. I asked the nurse if she was telling me the videostroboscopy is necessary to diagnose Eagle's and she said it was ONE step in diagnosing it. I explained that I thought he ordered it to evaluate for vocal cord dysfunction. She said it will do both.

My question for the group here: Have any of you heard of using videostroboscopy to evaluate for Eagle's? Isn't it normally to visualize INSIDE the trachea, especially the vocal cords?

Does it seem to you that I'm getting the run around?

Thanks!
Kathy (aka WillisWay)

2

Hi Kathy,

I had the same test done by an ENT (Dr. Morzaria) who is very familiar with Eagle's and who just performed the external surgery on RB. He also palpated the back of my mouth around the tonsils, but I didn't really ask if he felt anything. I was just happy to be examined by a specialist, besides he had my previous scan which said I had 4.5 cm elongated styloids and then he ordered the new scan anyway.

I don't really know if it is absolutely necessary to diagnose Eagle Syndrome, but is perhaps another standard test that should be performed to rule other things out. The CT scan with contrast will probably be his most effective diagnostic tool.

Hope this helps.

Red Pill

3

Red Pill (and all),

I've already had the CT scan with contrast, so I guess that's why I was surprised the nurse said the doctor planned on using the videostroboscopy to evaluate for Eagle's. And I had the exam where they poke inside the mouth near where the tonsil used to be. And he has my list of symptoms and previous diagnoses.

When I was in with the doctor at my exam, he had ordered the videostroboscopy for the OTHER reason I was in to see him, to be evaluated for vocal cord dysfunction. And it makes a lot more sense to do the scope for the VCD, since that scope visualizes the vocal cords and the trachea. It does not visualize the exterior of the trachea, where the calcified stylohyoid ligament would be. I can't help but wonder if they picked up on the fact that I was thinking of cancelling the scope for now, and going elsewhere to be further evaluated for Eagle's, and they want to keep me on the hook so they are now saying they are using that scope to evaluate for the Eagle's syndrome too. Hmm...

Does anyone know if videostroboscopy is used to diagnose Eagle's or is it simply used to rule in or out OTHER conditions as they look over their differential list of diagnoses?

Trying to decide about going back or not, since I'm certain I won't be using this doctor for Eagle's surgery. Do I even go back to have the videostroboscopy? Would another doc want to retest with it later if I switch doctors? Is it good to go and at least rule out the vocal cord dysfunction so we can get that out of the way? So much to consider!

Thanks for your input, everyone! (I look forward to the day when I know more enough about Eagle's to help new folks on this loop like I do on other illness sites for my other long-term health issues.)

Kathy (aka WillisWay)

Red Pill said:

Hi Kathy,

I had the same test done by an ENT (Dr. Morzaria) who is very familiar with Eagle's and who just performed the external surgery on RB. He also palpated the back of my mouth around the tonsils, but I didn't really ask if he felt anything. I was just happy to be examined by a specialist, besides he had my previous scan which said I had 4.5 cm elongated styloids and then he ordered the new scan anyway.

I don't really know if it is absolutely necessary to diagnose Eagle Syndrome, but is perhaps another standard test that should be performed to rule other things out. The CT scan with contrast will probably be his most effective diagnostic tool.

Hope this helps.

Red Pill

4

I've never heard of that. The four doctors I've been to that diagnosed Eagles all used the CT scan with contrast.

5

Willisway,

I feel you are getting the run around. No doctor ever had that ordered for me. All 3 ENT's (one with Mayo) I have seen diagnosed ES from CT scan's, symptoms, and physical exam and one of the ENT's could not even feel the styloid but he still said ES.

I think your doctor is stalling. He wants to find something he is comfortable fixing and blame it on that and he eventually will tell you your styloids are not that remarkable and he can't or wont do it.

Have you lost your voice? I have no idea how that test will confirm ES. He really is not familiar with ES or comfortable with it. That is just my opinion. I would not waste any more $ or your time with this doctor.

6

I agree that this doctor is giving you the runaround. He wants to find something he is knowledgable about and treat that and ignore the eagle. I had several doctors try that with me. It’s a waste of time.

Eagles made me lose my voice entirely every time I spoke a few sentences in a row. Even my excellent eagle surgeon doubted that the voice was related to es. He wanted to send me to speech therapy. Of course, it resolved completely after surgery.

7

I agree completely with Bigsbug, eagleheart, and heidemt, I have never heard of that test being used for diagnosing Eagles. I would not waste time or money on that especially if they can't see from your CT Scans and agree that it is suggestive of Eagles Syndrome. "The forest from the trees" doctor syndrome. It is right there but they don't want to see it or deal with it. Believe me, I know what it is to be given the run around with doctors and specialists (including the Mayo Clinic). Dump that doctor and find someone who is familiar with Eagles and not waste your time anymore with fancy, expensive tests that have nothing to do with your condition. Listen to your inner voice and become your own medical advocate and ask the hard questions especially the "why this?" If they don't want to listen to what you have to say, give them the boot and move on. My experience, my opinion. Wishing you the best in finding a competent, kind, understanding physician. Take care,

With kind regards,

Viperbone