Need help to get diagnosis. Anyone from GA? Any doctors does provide consult for out of state patients?

[Newuserhere]

I have posted earlier about my pain and symptoms…no definite diagnosis and relief yet.

I didn’t have any diagnosis for eagles yet. I have pain and symptoms since May 2020. No relief yet. It’s been the same till now. Constant pain in the lower jaw under ear lobe and neck, throat and upper back. Have seen dentists, oral surgeons TMJ specialists physical therapists, Neuro doctor and no relief yet.

I have taken CT scan of neck with contrast and it’s not very evident about eagles. It says I have mild calcification of stylohyoid ligaments on this paining side and shorter styloids. I will paste my report and add the CT images.
I have sent my records to Dr Samji and he dismissed my case as my styloids are shorter. I didn’t see any other eagles specialist ENT yet.

I have seen a vascular neurologist in GA who listed in the group doctor list. He didn’t review my CT though. He referred me back to the ENT Dr Vick( whose name is listed on the group list) and ordered me CTA scan to see if any Vascular components involved. He said I need to check those to rule out vascular issues. I have an appointment with Dr Vick and would like to know if anyone seen him before.

Does CT scan of neck with contrast will show any vascular compression issues? Or we need to take CTA to see those?

Have any of you seen any out of state doctors for eagles and vascular eagles diagnosis ? Whom did you consult ?

My current symptoms are,
-constant pain in the lower jaw under the ear lobe and the neck since day 1 for 1.5 years now.

• Ear ringing and soreness
• clicking and grating sound in the jaw while opening the mouth. Jaw deviates to left while closing. TMJ MRI and cbct clear.
• Constant feel of something stuck in throat and feel like poking through.
• biting pressure sensitivity on tooth 30. Cbct clear. Had root canal.
• bite is not even and back molars not touching properly on this right side.(checked my occlusion and dentist said it might be because of muscle tightness)
• sore pain in the throat
• sore pain in the tooth 30 and gum area even when not touching and biting. It hurts for brushing and even when I press or push through fingers or tongue.
• constant burning and soreness in jaw line, jaw under ear lobe, behind the ear, upper neck ,base of head and throat. Only on right.

My CT report:
Addendum:

Right styloid process: Not elongated, measuring about 0.3 cm.
Right stylohyoid ligament: Calcified distal portion, which measures
about 0.8 cm. This is located about 2.1 cm from the tip of the right
styloid process.

Left styloid process/stylohyoid ligament: Borderline top normal size of
the left stylohyoid ligament, which is in continuation with the
elongated left styloid process, measuring about 2.4 cm combined. One
cannot differentiate between what is considered the left styloid process
and a calcified stylohyoid ligament in this case. In regards to Eagles
Syndrome, an elongated styloid process or a calcified stylohyoid
ligament can both result in pain. Eagles Syndrome is ultimately a
clinical diagnosis.

Two BB markers were place in the region of focal pain in the right face
and right neck. There is no focal abnormality underlying these BB
markers.

12/28/2020 3:43 PM PXRRR02R

Addendum: The left stylohyoid ligament is calcified and measures 2.4 cm,
which is borderline top normal. This is in continuation of the left
styloid process, which essentially can be considered elongated.

12/24/2020 4:26 PM RAADOCS006

Addendum: The right styloid process is not elongated. The calcified
distal portion of the right stylohyoid ligament measures 0.8 cm and is
located about 2.1 cm from the tip of the right styloid process.

12/24/2020 3:47 PM PXRRR14R

Addendum:
Additional clinical indication: Evaluation for Eagle’s syndrome.

The left stylohyoid ligament is calcified and measures 2.4 cm, which is
borderline top normal. The right stylohyoid ligament is mildly calcified
along the distal aspect on series 4, images 34-35.

Narrative
CT SOFT TISSUE NECK W CONTRAST

TECHNIQUE: CT images of the neck were obtained with intravenous
contrast. Isovue-370 was injected without complications. Dose reduction
techniques were utilized for this examination. DICOM format image data
is available to non-affiliated external healthcare facilities or
entities on a secure, media-free, reciprocally searchable basis with
patient authorization for at least a 12-month period after the study.

CLINICAL INDICATION: Lymphadenopathy, neck;Localized enlarged lymph
nodes;Cervicalgia.

COMPARISON: Neck ultrasound August 28, 2020.

FINDINGS:
Aerodigestive Structures: The nasal cavity, nasopharynx, oral cavity,
oropharynx, hypopharynx, larynx, and included trachea and esophagus
demonstrate no masses or abnormal enhancement.

Lymph Nodes: No pathologically enlarged, necrotic, or otherwise abnormal
lymph nodes.

Vasculature: Normal.

Salivary Glands: Normal parotid and submandibular glands.

Thyroid: Normal.

Visualized Intracranial Structures: Normal.

Included Orbits: Normal.

Paranasal Sinuses/Mastoids: Predominantly clear.

Included Lung Apices: Normal.

Bones/Soft Tissues: No aggressive osseous lesion. No acute soft tissue
abnormality.

Any thoughts anyone. Thanks for reading!!!

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[Jules]

Such a shame that Dr Samji can’t help you…
From the report & images, it does look as though the left styloid is only a little bit over average, but it is quite angled so it could possibly cause symptoms. There is only a very small calcification on the right side ligament, but if that’s pushing or rubbing on a nerve, then that too could potentially cause symptoms.
Obvs we’re no experts on here, & some of the images with contrast aren’t that clear, but in the 3rd image up from the bottom, it looks as though the C1 process could be causing compression. In that same image on the left side, it looks as though the left styloid can be seen there & could be longer than estimated, it’s got quite a point at the end too. You can’t see the blood vessels on that side though in the images…
Certainly your symptoms sound like ES! The CT with contrast usually shows vascular compression, although as it’s taken with your head in a neutral position, if you notice vascular symptoms when your head is in a particular position, the CT might not show it. CTA is the same- it’s a CT with contrast timed to look at when the contrast passes through the arteries, a CT venogram is timed to look at when the contrast is in the veins. According to the report though it’s all normal…
You can search the discussions to see if anyone has seen Dr Vick at all; doctors must’ve done a successful surgery to have been added to the list, but sometimes it could be a little while ago.

[Newuserhere]

Thanks for the response @Jules. Appreciate it.

I don’t have any pain on the left. Does a left side elongated styloids cause symptoms on the right?

And that C1 process could cause the compression, what does it actually mean? Does the C1 pressing on the styloids?

I did get my MRI of neck recently. Will that show C1 compression better?

I did search about Dr Vick. Two members had consult with him and not very good positive feedback. So I am skeptical to go with his visit. Recently one of the members saw him and he didn’t diagnose them with eagles and didn’t see the scan too. So not very positive to proceed with. I had a chat with the member who have seen him and it’s not very positive.

Do you think it’s still recommended to see a doctor when we know that they won’t be helpful and the visit will not be very helpful for the diagnosis??

So I am just posting here to see if someone else saw him and had good response.

[notyouravg]

Given the lack of overt Eagle’s on CT, please read my posts on hyoid bone syndrome. This is especially true given the clicking sound you experience - HBS is also termed “click throat” as described in one of the links here:

Diagnosed with hyoid bone syndrome

READING MATERIALS: I ended my last post on the topic of lack of literature around Hyoid Bone Syndrome. Here is my collection of what I was able to dig up when I was trying to figure this out; so many google searches and long nights on the internet spinning due to lack of material. I found these resources to be invaluable in learning about the condition and in helping me to realize surgery was the course of action I personally needed to take to solve my issue (and that I wasn’t loco or making …

Your symptoms and lack of Eagles sounds similar to what I experienced in figuring this out. Dr Dewan at Stanford medical is a specialist in HBS.

[notyouravg]

Here is my original post:

Diagnosed with hyoid bone syndrome

DO NOT GIVE UP DO NOT STOP SEARCHING As of last month, I struggled with a sore throat (on the left side only) for the past two years and I’ve been reading the stories here for about a year now. Everytime I spoke or ate the left side of my throat would just rage with pain. The pain would get progressively worse throughout the day such that, by the end of the day, it would be too painful to speak after a full day of work. Eventually I started to get pain behind my left ear. As I came to learn mo…

Very few doctors are aware of HBS and Dr. Samji doesn’t even believe it exists based on my meeting with him. Message me, I am here to help. Good luck and hang in there.

[Isaiah_40_31]

@notyouravg has made a good point. Perhaps your hyoid bone needs to be evaluated as well as your styloids & ligaments.

[Newuserhere]

Thanks for the response.
Is it need to be evaluated with new/different imaging or the same CT scan will be helpful for hyoid bone syndrome? Any thoughts.

I am not sure if we have any other group of doctors for this issue and diagnosis. Or eagles specialist ENT will evaluate this?

[Jules]

If the C1 process is long, it can compress the blood vessels & nerves between it & the styloid, pinching them. Usually having the styloid removed gives enough space to help with symptoms, but there have been a few members who’ve needed the C1 shaved down too. The MRI probably won’t show compression; they’re not usually good for showing the styloids always. You could have a look if you’ve got your MRI images.
If you don’t get any more feedback about Dr Vick, it might not be worth seeing him, given what you’ve heard…

[Isaiah_40_31]

If your hyoid bone is visible in your CT images (I couldn’t see enough of it to tell anything about it), then you would not need another scan. If it’s not completely visible then you may need another CT to look at it more clearly.