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Eagle Syndrome - Online Support Group

Sitting Craniocervical MRI results

After 4 years of trying, I finally got my sitting MRI to show what’s going on in my neck when gravity is pulling on it. Still waiting for styloid measurements. Here’s the report if anyone has feedback before my follow up wuth Dr. H on 5/5:

"Exam: MRI CRANIO-CERVICAL JUNTION FLEX/EXT WO CLINICAL HISTORY: Fifth and sixth cranial nerve impingement with carotid and jugular impingement. Evaluate for instability. History of Eagle’s syndrome.
TECHNIQUE: Sagittal T1, sagittal T2, axial proton density, coronal proton density, and flexion and extension sagittal T2 weighted images were obtained in the neutral sitting position for a craniocervical junction MRI.
COMPARISON: None.
FINDINGS: On flexion and extension imaging, there is posterolisthesis of C3 on C4 by 3.5 mm on extension positioning consistent with ligamentous instability/laxity. No marrow or soft tissue edema lesions or cord lesions. The cerebellar tonsils are within normal limits and position with no evidence of Chiari malformation.
The Grabb-Oakes measurement was performed. On neutral position images, it is 7 mm. This increases to 9.5 mm on flexion position images which is abnormal. There is direct impingement upon the ventral cord on flexion positioning in the region of C1-C2. On extension, the Grabb-Oakes measurement is 4.2 mm. These findings are consistent with instability. There is no signal abnormality of the brainstem on T2 weighted images.
The clivo-axial angle is 138 degrees on flexion, 136.7 degrees on neutral, and 128.2 degrees on extension position images. The atlantodental interval shows asymmetry of the periodontoid space with a transverse dimension on the right measuring 6 mm and on the left measuring 3.8 mm.

No os odontoideum or bone erosion of the odontoid.
IMPRESSION: 1. 2. 3. 4. 5. 6. 7. Straightening of the normal cervical lordotic curvature which can be seen with muscle spasm due to ligamentous sprain and/or disc injury. Posterolisthesis of C3 on C4 on extension positioning, significant in degree. In the setting of trauma/injury, malalignment to this degree can be seen with Alteration of Motion Segment Integrity/Loss of Motion Segment Integrity due to acute/subacute ligamentous sprain and laxity of the ligamentous structures. Impingement upon the cord at C1-C2 by the odontoid on flexion position images.
The GrabbOakes measurement is 7 mm on neutral positioning, increasing to 9.5 mm on flexion positioning, and decreasing to 4.2 mm on extension positioning. On neutral, flexion, and extension positioning, the clivo-axial angle is 136.7, 138, and 128.2 degrees respectively.
No Chiari malformation. No brainstem lesions. Asymmetry of the periodontoid space/atlantodental interval. This may indicate ligamentous injury to the alar ligaments."

Hi AmbyNYC,

I’m glad you persevered & got the test you needed to look at what’s going on in your neck (which sounds like an unhappy place in your body). The findings in the MRI are beyond the scope of what ES would cause. Impingement of cranial nerve (CN) 5 is not unusual in ES, but I have never heard of CN 6 being affected by it. I just watched the Two Minute Neuroscience video for the abducens nerve (CN 6). It is closely associated w/ the facial nerve (CN 7) which can be affected by ES. There is a very remote possibility that if the facial nerve is being irritated by ES, it is somehow affecting the abducens. This is a “wild, out there” speculation though.

Remember that measuring the styloids is best done from a CT scan not an MRI & is also not a “fine science”. Two different radiologists reading the same scan may come up w/ very different numbers when it comes to styloid lengths. This is one reason some doctors prefer to read the scans themselves.

You’re in great hands w/ Dr. Hepworth. I’m sure he’ll be able to recommend the best next steps to help you. Please keep us posted as far as your ES & neck issues go. We are here to support you all along your journey.

:hibiscus:

Thanks for the info! I did watch the 2 minute neuroscience videos when I first joined here. I had symptoms of 5 out of 6 of the cranial nerves that run near the carotid and internal jugular vein being impacted, though some symptoms could be EDS related as there’s some overlap.

Been thinking Hepworth might have me redo the Head CT at the imaging place that does thin enough slicing. The one I had last year was not clear enough.

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It does sound as if you have an awful lot going on there as well as ES, a bit beyong our experience I’m afraid…I don’t know, we’re not doctors, but it’s worth looking into whether some of the instability is causing shifts in your neck & this is bringing the styloid/s into contact with the blood vessels & nerves more? Sorry I can’t be more helpful, but Dr Hepworth seems to be a good doctor, hopefully he’ll be able to explain all the results.
As Isaiah says, MRIs aren’t the best for showing SPs, so this may not give an accurate reading.
Let us know how you get on, thinking of you…

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So because of the jugular ultrasound in Jan, and result that IJV is only allowing 25% of blood flow through on the right side, the plan right now is to schedule surgery with Dr. Hepworth this summer. He plans to open the right side of the neck along the IJV from carotid bulb to SCM to see what is doing the impingement, and expects it to be the styloid, will remove if confirmed. He will do a venogram before and after stylood removal to make sure normal blood flow is restored to the IJV. After 2-3 mo, we will see how I am healing, and what symptoms have improved or remained the same. At that point I should be working my way through neurosurgeons wait lists to get more advice about neck instability.

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It sounds like you have a good plan in place, AmbyNYC. Dr. Hepworth is very experienced & will definitely do what he thinks will provide the best results for you. I’m sorry, but I don’t remember if you have bilateral ES. If so, there is a good possibility some of your ES symptoms will not go away after your first styloid is removed. In bilateral cases, both styloids can contribute to some symptoms while others are caused unilaterally. It has been our experience that after one styloid is removed, the symptoms caused by the remaining styloid can begin to ramp up. I’m telling you this so when you & Dr. Hepworth evaluate how you’re doing 2-3 mos post op, if you still have pain/ES symptoms, the remaining styloid is likely the reason.
I do hope that over time, your neck instability & cervical issues will be properly treated so you are more comfortable. :hugs:

Sounds good! Hope that you don’t have to wait too long, & that you get good results!

Hi NYC,

Since they mentioned Chiari and neck instability, the Ehlers Danlos Syndrome (EDS) is like a double whammy with ES. I also have TMJD. Ct Scan just does slices and interpolates (estimates in between) for length of styloids and ligament calcifications. It is better to have the specialist read the scan as often the radiologists have limited expertise. My surgeon didnt agree with radiologist report and even found after surgery it was longer that what he even thought.

I have EDS and have had decades of neck instability although I didnt know until around 2012. I did have a whiplash in my late teens that probably didnt help. Ive gone thru years of physical therapy, occupational therapy, massage, acupuncture, cranial sacral work, osteopathic work and a variety of injections. In my 30’s docs gave me injections of proliferon (prolo) therapy that is supposed to tighten up the loose ligaments. I just had my ES surgery and need to do other side. I will return to my OT who has given me very mild strengthening exercises for my neck. If you have neck laxity, there is a PT who has developed a protocol (can get book online) for EDS as it requires a PT/OT that knows what they are doing. Hypermobility and loose ligaments are another animal and needs to be approached differently than standard pt approach as you probably already know. Ive considered getting a cervical collar to help with my neck instability…especially to wear at night as often I end up with my neck is positions that trigger massive pain and cause my neck to go out of alignment. So far my neck has not bothered me much since my surgery however my massage person says the left side (shoulder / neck/skull) still very tight. I’m hoping with regular massage (weekly) I can get this all to relax and retrain after years of the body tensing up from ES on that side. Good luck with your surgery.

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This is great to hear - can you point me to any documentation/studies that talk about this? TN2 is one of the biggest symptoms in my household!

Here is a link to an extensive post Jules wrote in 2016. It includes links to several different research articles including one for TN related to ES. I hope this is helpful for you.

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There’s info in the Newbies Guide Section- Common symptoms & what might cause them; here’s some info for you:
‘Symptoms are divided into two groups. The first group of symptoms, are characterized by pain located in the areas where the fifth, seventh, eighth, ninth and tenth cranial nerves are distributed and occurs in most of the cases after tonsillectomy which may have been performed many years earlier.’ (Dolan, Mullen, Papyoanou).

‘Pain following tonsillectomy is presumably created by stretching or compressing the nerve or nerve endings of cranial nerves V, VII, VIII, IX, or X in the tonsillar fossa either during healing (scar tissue) or shortly thereafter.’ (Langlais RP, Miles DA, Van Dis ML. Elongated and mineralized stylohyoid ligament complex: A proposed classification and report of a case of Eagle’s syndrome, 1986).’
And: ‘Trigeminal Nerve branches (CN V) are also in this region- Eagles Syndrome is listed as a possible cause of Trigeminal Neuralgia (TN)/ Non-Neuropathic Facial Pain . TN causes two types of symptoms- Type1 is sudden intense, electric- shock like, stabbing, or burning pains which can also cause muscle spasms , and Type 2 is a constant aching, boring or burning pain .’

‘The Trigeminal Nerve has 3 branches, which carry sensations of pain and touch. The branches go along the lower jaw, into the lower teeth and the temple region; the upper jaw, teeth, cheek, part of the nose and just below the eye; and across the scalp, forehead, and the eye. The motor branches of the Trigeminal Nerve also innervate muscles for chewing, and sensory branches go to the mucous membranes of the eyes and nose, and symptoms of damage can be dry eyes and mouth. (http://calder.med.miami.edu/pointis/tbiprov/MEDICINE/sense1.html1 ).’

‘I have seen research showing that it is the lower branch (Mandibular) of the Trigeminal Nerve which is most commonly affected by Eagle’s Syndrome. In one documented case, the TN pain the patient was suffering was eased by a partial removal of the styloid, but then returned. The patient later had a full styloidectomy, and again the pain eased, before returning years later, and with more severe TN. The researchers state ‘This suggests that trigeminal neuralgia often exists in a prodromal state characterized by dull constant jaw pain, particularly if there is a distal structural defect to exacerbate the pain. The underlying abnormality that eventually causes classical trigeminal neuralgia may be present in an early form. This early form might not be capable of causing facial pain on its own, but might sensitize distal trigeminal nerve branches to local compression or stretching. It might sensitize the alveolar nerves to pain in the jaw from dental problems. (or in our case from an elongated styloid process and scar tissue.) Eagle syndrome… may also be associated with pain in a trigeminal V3 distribution.’

Here’s a link to the whole piece:

Hope this helps!

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It does! Thank you both for replying so quickly. My family member has Type 2 TGN on the CNV2 branch (maxillary, one side worse than the other). They have been diagnosed with both Eagles and Chiari, neither of which neatly fits with the location of the pain. We’re trying to figure out which is least “unlikely” - we can definitely get either surgery as there’s pathology in both locations. Ugh.

Not something to look forward too…hope that the right decisions are made. Best wishes.

Your husband’s situation is challenging. Hopefully having consults w/ the appropriate specialists will give you clarity as to which direction to go for his treatment. I will pray for that. :blush:

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Thank you both. Have either of you seen any other postings about facial pain and headache based in the maxillary branch of the Trigeminal Nerve?

Jules is much more well-versed in what research papers are available than I am. I’m sorry to say, I don’t know of any that specifically deal w/ that branch of the TN. If I become aware of any, I will forward links to you.

You might find this article interesting:


And these discussions might be helpful:


There are a lot about TN, not necessarily just the maxillary branch. You can have a search of more if you need more info using the magnifying glass icon…I get the aching, constant pain, but in all 3 branches. It’s improved a lot since surgery, but not gone completely. Also Ben’s Friends have Chiari & Facial Pain groups if you want specific info on those, here’s the links if you’ve not seen these groups:


https://www.bing.com/videos/search?q=bens+friends+chiari+malformation+group&docid=608048265157806659&mid=5D0C85A7D826322B00A95D0C85A7D826322B00A9&view=detail&FORM=VIRE
Hope this helps!
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