Can i get help interpreting my CTV results please. Any comments are greatly appreciated.
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Well, you have a fair bit going on there! I can’t label your images as I’m not that tech savvy, but on your right side your styloid process is very elongated and you have another section of calcified stylo-hyoid ligament further down. Your IJV is being compressed between the styloid and the C1 process.
Your left side styloid process is shorter, but very thick and angled, it looks like with both they’re probably elongated with calcified stylo-hyoid ligament which has fused onto the end of the styloid… Your left side IJV is also compressed; I can’t tell for sure, but your C1 process seems to be doing most of the compression, it looks like there could be a fairly decnt gap between the IJV & the styloid so it might not be involved in the compression, can’t tell 100% with the angle.
Your Hyoid bone processes look quite long, these can cause symptoms too like choking sensations, carotid compression symptoms like fainting, throat pain, I don’t know if that’s something you might have? Also your thyroid cartilage is really chunky, it is often calcified with men especially but if it’s pretty enlarged it can cause symptoms too…
So I would suggest that you try to get a consultation with one of the Vascular ES docs, like Dr Nakaji in AZ, Dr Hepworth in CO, Dr Costantino in NY, Dr Cognetti in PA, and Dr Lui in NJ, as I think you may well need a C1 shave as well as a styloidectomy to resolve the IJV compression…
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@dbeck177 Looks like your right IJV is dominant and being stenosed between your styloid and C1. In this head position it isn’t completely stenosed and I wonder what it would look like with head flexion or rotation. I’m not sure, from these images, what is happening on the left side. Certainly looks like an elongated and thick styloid.
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Thanks for the response i have a couple questions.
What symptoms can you get from the hyoid bone being elongated?
Can calcified thyroid cause hypo symptoms and why would it be calcified?
Most of my symptoms seem to be from the vagus nerve. Things like anxiety, panic, digestive issues, fatigue, pain, cramping, tight muscles, low hormones.
I do have vision issues and tight neck muscles and used to get migraines.
Can the compression cause vagal compression also with IJVC?
Is it still eagles if C1 is involved and there is ijvc? It seems Eagles is more about the styloid?
I have a consult with Dr Constantino and Dr Liu in September but live on the West Coast. Are there better options closer to me? I’ve read most the others don’t take insurance and are not as aggressive with shaving C1?
Really appreciate your help.
DB
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@dbeck177 - I agree w/ what both @Jules & @Chrickychricky have pointed out though I think the greater horns of your hyoid may not be long enough to cause a problem, the magnitude of the calcification of your thyroid cartilage is very significant & could more likely be a problem as it may be rubbing on &/or displacing your hyoid bone in some head positions. Please remember we’re not doctors so are giving non-medical opinions which you can take to any doctor with whom you consult to discuss.
Hyoid greater horn elongation can cause clicking & pain when swallowing, compression of the internal, external &/or common carotid artery which can cause pain along the length of the carotid, heart pain, eye pain, visual changes, headaches, TIAs, passing out…
Calcified thyroid ligament can cause “Clicking Larynx Syndrome”. Painful clicking sound/sensation when swallowing is the dominant symptom but there are others you can research if you have the clicking problem. Very calcified thyroid cartilage may be a symptom of hypothyroidism but I don’t believe it causes it. That would be a question for an endocrinology specialist.
Absolutely the vagus nerve can become compressed along w/ the IJV. They “live” right next to each other within the carotid sheath & as they pass between the styloid & C1 together, if one is squashed so is the other. Your symptoms, as you noted, are likely related to vagus nerve irritation or compression.
Any symptoms that are related to styloid elongation would give an ES diagnosis. We have many members who have elongated styloids & IJV compression where the IJV compression is predominantly being caused by C1 &/or soft tissues, but the styloid is causing compression of nerves that are contributing to the symptoms.
This is good news! Did you ask to be put on a cancellation list for either doctor? I recall Dr. Costantino’s office doesn’t keep one, but you can call weekly to check for a cancellation if you want to consult with him sooner.
Dr. Nakaji is closer to you. He’s in Scottsdale, AZ - https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
I don’t know where you’ve read that most others don’t take insurance. Most do. The only doctor we know of who doesn’t is Dr. Osborne in Los Angele, but many of our members have gotten out of network coverage from their insurance companies to help pay for part of their surgery bills from him.
The only doctor whom you may have heard doesn’t shave C1 as aggressively is Dr. Hepworth, but I think he’s recently changed that, as I know of a couple of people who’ve had a significant amount of C1 shaved off by him recently.
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Thank you so much for your comments i have a couple follow up questions.
- my left thyroid was removed is this the calcification your seeing?
- How does the hyoid bone play into Eagles?
- My report mentioned up to 85-90 % compression on the right side is this significant?
- What are your thoughts on styloid removal vs styloid and C1 shave? I know some Dr will only do Styloids.
- Does the hyoid bone affect vagus nerve and jugular vein?
Thanks
DB
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Interesting that you’ve had half your thyroid removed. It is possible, based on a research article I found, for calcification of the thyroid to occur after a partial thyroidectomy, but it’s rare. So is ES. Thsu,that’s not to say that calcium hasn’t replaced your thyroid, but again, the opinion of an endocrinology expert would be required to diagnose that. Symptomatic calcification of a thyroid lobe and surrounding tissue after radioactive iodine treatment to ablate the lobe - PubMed
The styloids & hyoid bone are connected via the stylohyoid ligaments (one extends from the tip of each styloid & extends to the lesser horns of the hyoid on the left/right). When the styloids are normal length & s-h ligaments aren’t calcified, the hyoid bone is able to move freely (though minutely) when you talk, sing, cough, sneeze, breathe, burp, hiccup, etc. When the styloids elongate along the s-h ligaments, the hardened ligaments affect the hyoid bone’s ability to move normally in essence, the calcified ligaments “tether” the hyoid bone which contributes to pain w/ swallowing, talking, & in the neck. If the greater horns of the hyoid also elongate, they can run into the cervical spine & carotid arteries which causes other awful symptoms. When the thyroid cartilage calcifies to the extent yours has, then Clicking Larynx Syndrome can occur. These are all things you can Google for more basic information about them. We’ve had several members who’ve been diagnosed & had surgery for Clicking Larynx Syndrome. Here’s a link to a research article that discusses it - Clicking Larynx Syndrome
85-90% IJV compression is quite serious. We’ve had members w/ terrible symptoms with only 50% compression. You need to get that taken care of as it’s depriving your brain of the ability to get rid of deoxygenated blood & toxins & is restricting CSF flow. The blood coming into your brain through your internal carotid artery is able to flow in at a normal rate, but due to your compressed IJVs, the deoxygenated blood, etc, can’t flow out at the same rate, so intracranial hypertension (IH) has developed which causes symptoms such as migraine headaches, visual changes, brain fog, tinnitus/pulsatile tinnitus, & potentially other problems.
Typically the hyoid bone does not affect the vagus nerve or jugular vein but the styloids, calcified stylohyoid ligaments & C1 can all affect the jugular & vagus nerve as can surrounding soft tissues in your neck.
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Really good info i really appreciate it, can i post my results that show the blockage to get a little further comments on the compressions as i had a CTV that was dynamic with my head turned to the left and right.
Is there any Dr you know about that will look at or inspect the vagas nerve, so many of my symptoms are vagal symptoms and not may people talk about that its mainly about the jugular vein.
Again thank you so much for all your help you are a great answer to prayers.
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You’re welcome to post your results just take your name & any other personal info off/cover it up before you post your report.
As far as the vagus nerve goes, the only way to see it is by getting a FIESTA or CISS MRI. They’re sometimes hard to come by & can be very expensive. We’ve found it’s really not necessary since the symptoms are often the best guide & knowing what can cause vagus nerve irritation & seeing that you have those circumstances is enough evidence to conclude your vagus is distressed. Most likely, getting your IJV decompressed & styloids removed as close to skull base as possible will also provide significant relief for your vagus nerve.
The doctors we’ve suggest already are the best ones we know of for taking care of the things we know you have going on. Dr. Nakaji & Dr. Liu are both neurosurgeons so either one could potentially focus a bit more on the vagus symptoms, but I believe they’d connect them to your IJV compression.
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Dr Aghayev stated that the vagus nerve can’t be seen on scans, so not sure if it would show with a Fiesta MRI or not - if this was something you wanted to see then best to check up on that if you were going to try & have this scan … The vagus nerve is alongside the IJV in the carotid sheath as @Isaiah_40_31 said, so it’s quite likely as you have significant IJV compression that your vagus nerve is being irritated too.
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Just to chime in that I also have hormone issues, and in my virtual consult with Dr. Brianna Cardenas, she showed me that my pituitary gland is completely squashed due to the pressure in my head, which causes my hormonal issues. She says once the pressure is released, the pituitary gland may grow back and help regulate the hormones better. May be worth you also doing a virtual consult if you want her to check on your pituitary gland!
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Thanks for the reply have not heard this Drs name before do you mind telling me what she does? Is she a neurosurgeon and has she helped with your diagnosis?
Thanks
DB
Interesting about your pituitary gland. When I was a teen I went on a diet & lost about 20 lbs. My menstrual cycle stopped. My doctor had my pituitary gland x-rayed to make sure it wasn’t the cause (it wasn’t). That was when I learned the pituitary has a relationship to our hormones. It turned out my body fat was too low so the simple solutions was to put back on some of the weight I’d lost, which, sadly, was much easier than losing it. 
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She specializes in reviewing images, and was trained by Dr. Hepworth!! She is available as a second opinion - Brianna Cardenas - The Ehlers Danlos Society . Her consult fee is very reasonable too, just make sure to share all your imaging with her that you have had done
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@azapppp - I added Dr. Cardenas to our Doctors List under Dr. Hepworth’s name. 
Interesting that he trained her. I hope she has his skill in seeing things other doctors miss or dismiss.
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