Eagle and CCI Appointments

[Jess14]

Hi All,

I’m new to this site and learning about Eagle Syndrome and CCI. I have a complicated history, and many of us do. I’m looking to learn more about my situation so I can ask the right questions while trying to get the right diagnoses.

A bit about my history, I started getting chronic migraines at 17 and went to multiple neurologist specifically to figure out what was wrong with my neck. I was convinced my neck was the root of my daily migraines, with intense neck pain and stiffness (like metal rods), migraines that started at my skull base and didn’t respond to migraine meds, severe brain fog, nausea, light sensitivity, and more. I was told they’re just migraines over and over.

I have since been diagnosed with Sjogrens, a systemic autoimmune disease, and tentatively myasthenia gravis. I have many symptoms that fall into one bucket or the other including dysautonomia, muscle weakness, facial drooping, slurred speech, ataxia, clumsiness, difficulty focusing my eyes, hearing loss with whooshing and tinnitus, muscle twitching… I could go on. A dentist recently found elongated styloid process which I’ve had a CT of, but said it’s not interfering with anything. I found this site which mentioned CCI and the symptoms are so exactly on point for me, I need to look into it further.

I’m waiting to get a copy of my CT and would like to learn more about it. I’ve since gotten X-rays as a starting point to look at CCI (I know it’s not the best diagnostic tool, initial radiologist review was normal findings). Would this group mind giving me some ammo to help with follow up appointments?

Attached are some X-rays with red arrows pointing to elongated styloid. I’m curious about the extended lateral view C1 position (blue arrow) and if there’s anything there that would suggest instability.

[Isaiah_40_31]

@Jess14 - Welcome to our forum! I’m sorry for the symptoms & potential diagnoses you have. Your right styloid is somewhat thick & angled inwards & your left one, though thin is angled in even more. The fact both can be seen in your pano xray/CBCT scan indicates that both are longer than normal. I’d love to see some of your CT images once you have them available. Was it done with contrast? I’m asking because some of your symptoms sound like you may have vascular compression which won’t be visible in a non-contrast CT scan.

Length is only one feature of the styloids that can cause symptoms. We have a few members whose styloids weren’t elongated, but were extra thick, curved, twisted, pointed, angled, had little “barbs” growing off them which were the physical features apart from length that caused their symptoms.

Because your symptoms are all among those we’ve seen being caused by ES, it’s possible that the majority are being caused by your styloids. I’m not being dismissive of your Sjögren’s or Myasthenia Gravis diagnoses, but even some of the symptoms of those two syndromes are among the problems the styloids can cause by irritating nerves & sometimes producing vascular compression of either the internal jugular vein(s) &/or internal carotid artery(ies).

I don’t know enough about CCI to comment on the images you posted w/ your neck in flexion, though I can say from the last image that you have completely lost the natural lordotic curve in your cervical spine. This creates what’s called military neck. When the curve is lost, the styloids naturally move closer to nerves, veins & arteries in the neck thus increasing the risk of irritation or compression. The curve can be corrected by doing gentle PT exercises, but it takes much patience & is a slow process. Here’s a link to a post with a lot of good information about that:

List of my favourite resources on YouTube to learn anatomy

I’ll update this list if I remember/find more. These people are academics/practitioners/physiotherapists and so on, none of the “I tried this magnetic bracelet and it did miracles!” personae. Sam Webster https://www.youtube.com/channel/UCMRHZcgwdSE_9wbwcP8aRJw The Noted Anatomist The Noted Anatomist - YouTube Bob and Brad Physiotherapists https://www.youtube.com/user/physicaltherapyvideo Brian Abelson https://www.youtube.com/c/kinetichealthonline The Visible Body (not the person i…

I hope we can help unravel what’s causing your symptoms. It does sound like your styloids could be contributors.

[Jules]

Your right styloid especially looks pretty chunky, and potentially very close to your C1 process, so IJV compression could be a possibility, and your symptoms sound possibly like that too as @Isaiah_40_31 says…

One of our members, @PatientD suggested a test at home for CCI: 'On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’

So might be worth doing that to see? There is an overlap with these symptoms, also with dysautonomia and IJV compression/ vagus nerve compression symptoms, so it can be pretty difficult to tell them all apart!

We used to have a Bens Friends Sjogrens site, but that went really quiet…I have the dry eyes & mouth symptoms of that, but it’s not been confirmed, and interestingly it started when my ES ones ramped up, whether it’s inflammation from the ES I don’t know…

As you could have IJV compression, you could try to get an appointment with Dr Nakaji in AZ or Dr Damrose in Ca, although I think Dr Nakaji sometimes seems to get put off by people with complicated medical conditions. Dr Osborne in CA has been very helpful to get a diagnosis too, he doesn’t do C1 shaves if it does look like that’s causing IJV compression as well, but does remove the styloids close enough to the skull base to help with the compression. He doesn’t take insurance though. There are other vascular surgeons further away, some do online consults like Dr Cognetti in PA, not sure about Dr Costantino in NY and Dr Lui in NJ …

If you’ve not had a CT with contrast , that would be your next best step- to have it cover your head and down to the hyoid bone, and timed to show the arteries but especially the veins.

Hope this helps!

[Jess14]

Thank you both! This is all very useful information. I have had a CT with contrast and will post them once I get them. I’ll also definitely check out the PT for military neck and self assessment for instability.

Jules, there’s another great Sjogrens support community so it may be why that one went quiet. A lot is being learned about the disease and a common question is if neurological issues or dryness issues come first, with those very familiar with it arguing that neurological comes first and causes dryness. Both Sjogrens and Myasthenia are beasts of diseases to deal with, but I agree with you Isaiah that Eagle’s and/or CCI could actually be causing most of my symptoms. It’s a more complete picture than Sjogrens+Myasthenia although I’m positive they all play off each other (compression => inflammation => autoimmune flare => inflammation => compression).

[MGORNEAU]

@Jess14 you have an interesting set of symptoms, many that are similar to mine that did not resolve after styloidectomy alone. Have you had a CTA/CTV head through neck?

[Jess14]

I’d be interested to hear your story. Specifically what surgery helped with and what symptoms you still struggle with. I have had a CTA with contrast but haven’t gotten access to it yet. Will post when I have it.

[Jules]

@Jess14

I’m positive they all play off each other (compression => inflammation => autoimmune flare => inflammation => compression).

Definitely, that sums it up really well!

[MGORNEAU]

@Jess14 Sorry this is so long…I have had years of skull-base pain, right-sided headaches (extreme pressure on the back of my head into my eye) and facial nerve pain, brain fog, tinnitus, hearing changes, intermittent muffled hearing on the right, balance issues—I could not consistently perform tandem gait, and positional lightheadedness. I also had significant swelling of my face and neck, much more noticeable on the right, which has always been my most painful side. There are times, my speech becomes jumbled or mildly slurred.

The bilateral skull-base styloidectomies helped a number of symptoms. The facial swelling improved almost immediately, although I still have residual swelling on the right. The lightheadedness improved, the brain fog cleared, and my intermittent swallowing issues resolved. The persistent right-sided ear fullness and muffled hearing resolved at around four months after surgery, but unfortunately began returning at approximately seven months. The clicking tinnitus also resolved initially but later returned and is now a constant buzzing.

One of the more interesting improvements was my balance. Before surgery, I could not consistently perform tandem gait, and now I can.

Three days after my right styloidectomy, the pressure in the back of the right side of my head and behind my right eye was completely gone. Unfortunately, that lasted only about a day before returning.

The symptoms that have persisted are severe right-sided occipital and upper cervical pain and pressure, with nerve pain that radiates from the back of my head through my jaw, along the right side of my tongue, through the area of my second-to-last molar, and into my face and eye. At times, the right side of my mouth becomes numb.

I still have swelling of the right side of my face and neck, particularly in the morning, along with prominent jugular vein distention. My right scapular pain improved but has not completely resolved, and I continue to have visible vascular congestion in my arms and legs while stationary. At times, the muscles in my thighs feel as though they are disintegrating.

Many of the symptoms that improved are consistent with relieving compression or irritation of the surrounding neurovascular structures, which is the goal of styloidectomy. However, Stanford also identified a soft-tissue lesion at C1, thought most likely to represent a fascial band related to the elongated styloids. I also have a complete right arcuate foramen, or ponticulus posticus, and my vertebral artery follows a less-than-optimal course through that region.

For me, there has never been any doubt that the styloids needed to come out, they were clearly part of the problem. At the same time, they may have caused changes that removing them could not reverse, or the underlying process that led to their abnormal calcification may also be affecting other structures or both. I hope to have answers to these questions soon.

I hope you’re able to post your images soon so the group can offer their input.

[Jess14]

Hi there, I received my CT. I’m not sure which images are the most useful. It looks like both sides are not actively squishing anything, but they’re pretty close to things.

[Isaiah_40_31]

Though you’re right that in the images, your styloids & transverse processes of C1 don’t appear to be causing IJV compression, you have pretty significant collateral veins bilaterally. Those are convincing evidence of IJV compression as they usually only develop to assist the IJV drainage when the IJVs aren’t doing their job as they should.

[Jules]

There are smaller blood vessels across the IJVs, especially on the right, so that could potentially cause compression, although it’s not obvious on the images you’ve posted- sometimes compression can show clearer on axial images.

[Isaiah_40_31]

@Jess14 - Here is an annotated image showing the vessels @Jules mentioned.

[Jess14]

Thank you both very much, this helps me understand it much better. A couple axial images if you like looking at those. I’m not positive what’s what or if this says anything different than the 3D images.

[Chrickychricky]

@Jess14 There is some flattening of the IJV between the styloid and C1 process on the right hand side of the second image. If you scroll through more of that sequence you might see that it flattens even more.

[Jess14]

It’s such a complicated game. I’m glad you got some relief from some symptoms with the surgery. It’s too bad there’s not a magic wand for the rest of the symptoms! Hope it at least helps you manage it better. Thank you for sharing your experience.

[Jules]

There is a small amount of compression as @Chrickychricky says, but not that much, the slices showing where the other blood vessels cross the IJVs would be further down…

[MGORNEAU]

@Jess14 Yes, I’ve always thought of it like playing chess.

I have surgery with Dr. Liu on Tuesday. He’s going to address my C1 and remove my C2 ganglion/nerve root to eliminate the pain being generated by that nerve that radiates into my head, eye, face, and tongue. Trading nerve pain for numbness in the back of my head after 10 years seems like a pretty sweet deal to me.

He is fabulous, he and his team really takes things to the next level.

[Jules]

I hope that the surgery goes well @MGORNEAU , he sounds a skilled surgeon so you should be in good hands…will pray all goes well for you

[MGORNEAU]

@Jules I appreciate all the prayers I can get! The last insurance approval came through yesterday, and I didn’t want to say anything until everything was completely in order. Didn’t want to jinx anything.

[Jules]

I didn’t think you’d put anything on here, cutting it fine with the insurance, that must’ve been stressful!