My story - Elongated styloids causing bilateral Jugular Vein Compression and endangering internal Carotid Arteries

Dear All,

First and foremost, I want to say how delighted I am to have found this forum and the wealth of valuable information shared by users worldwide, who, like me, suffer from Eagle Syndrome—a condition that is rarely recognized, diagnosed, or treated.

I came across this platform about five months ago (never got a chance to open an account) following my diagnosis after a car accident in February, where I was rear-ended at a red light. This whiplash injury worsened my lifelong nerve-related symptoms, and despite visiting numerous doctors in Florida, none could pinpoint the issue. After extensive research based on my symptoms, I made an appointment with Dr. Jeffrey Middleton in Fort Lauderdale, for which I will be forever grateful.

The 3-D CT angiography he ordered revealed elongated styloids—what I had been searching for decades most probably. The radiology report indicated severe stenosis (about 90%) of the dominant right jugular vein, trapped between the transverse process of C1 and the styloid process. This stenosis persisted with head rotation to the left. Additionally, the left jugular vein showed moderate stenosis (about 60%) in the neutral head position, which eased with head rotation. Both styloids are abnormally elongated, measuring over 4 cm, with the tips—especially on the right—fractured/ broken, and dangerously close to the cervical carotid arteries.

Thankfully Dr. Middleton, an Atlas Orthogonal specialist, spent an entire day with me, carefully adjusting my atlas bone using a special sound wave/percussion instrument to reduce compression until the surgery, which brought much relief, particularly after the recent trauma of the whiplash. However, he clearly informed me that I would need a true expert to remove the styloids due to the high risks involved in my particular case.

I was then referred to Dr. Hepworth, but his wait time for surgery was 6-8 months, which was disappointing. My family and friends insisted I seek a second opinion in Turkey (now known as Turkiye). Unfortunately, I had also injured my back in the accident and had to wait a month or two before I could fly.

Once I arrived, I consulted three ENT/Head & Neck specialists, each the head of their departments at different hospitals. However, I experienced medical gaslighting, and all of them refused to operate, citing more risks than potential benefits. It was clear that they lacked experience, especially with vascular Eagle Syndrome, and none had the special software (Radiant Viewer, I believe) necessary to properly assess my 3-D tomography. Despite having screenshots provided by Dr. Middleton, they barely looked at them. They performed an angiogram (without head rotation) and declared everything was fine, advising me to continue living my life as usual. This was extremely disappointing, as my symptoms are clearly related to vascular Eagle Syndrome.

To name a few of those symptoms: I’ve suffered from extreme neck tension, discomfort, and sometimes pain; visual disturbances like double or blurred vision; ear discomfort, including tinnitus-like ringing; intracranial pressure; and a foreign object-like feeling in my throat when swallowing, especially with my head down, along with severe lifelong anxiety, depression & bowel disturbances despite healthy eating and living style. I’ve also once experienced a transient ischemic attack after self-adjusting my neck due to major discomfort, where I fainted instantly, along with countless vasovagal syncopes (non-epileptic fainting episodes), which I believe are caused by the styloids compressing my vagus nerve, restricting blood flow to my brain, especially during stressful or traumatic events. As someone who has dealt with Complex PTSD (C-PTSD) most of my life, these past seven months have been particularly challenging.

On a side note, I had undergone a brutal tonsillectomy at age seven (about 42 years ago), performed while sitting on a chair in a doctor’s office using solely a numbing injection, much like at the dentist’s office. I believe my styloids started forming then, as I’ve read literature suggesting a correlation between tonsil removal (soft tissue damage) and styloid formation.

Last week, when I opened my account here, @Jules in the forum mentioned that @gramos had undergone a styloidectomy in Istanbul with Dr. Kamran Aghayev about a month ago. I’ve already contacted his assistant and have an appointment in a week. I’m hopeful that I will finally meet a specialist who listens and understands my symptoms and deem surgery necessary. I’m also scheduled to see another doctor in Istanbul, Prof. Gunter Hafiz, who is also known for performing styloidectomy, and was recommended by a family friend.

Attached are a few images from my CT scan that show the compression. I want to thank Jules, Gramos and everyone in this group for sharing their stories, from which I’ve learned so much in just the past week. I will keep you all updated on my progress after my doctor visits next week.
Be well until then. Much love to you all. Sending my best :v::green_heart::pray::sparkles:.





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I’m so sorry that nobody has helped you, I hope that you’re able to get seen & treatment from someone while you’re in Turkey…I would just say about the potential fractured styloids, that sometimes they do appear jointed like that on imaging, they can grow like that, and there is sometimes a gap between the styloid and the stylo-hyoid ligament if it calcifies…either way it doesn’t matter too much, it’s getting it all removed which is important.
Your styloids are definitely long, but your C1 processes look quite long too; it might be worth asking one of the doctors you see about that. In the first 2 images you’ve posted, it looks as if the IJVs could may be compressed between the styloids & the C1 vertebrae- have you got any of the symptoms of that, like headaches, head pressure, off-balance feeling, dizziness?
Good luck while you’re in Turkey!

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Thank you, Jules! When my doctor reviewed my 3D CT scan, the first thing he pointed out was the unusually large size of my atlas, which didn’t surprise me, as I’ve always had larger-than-average bones growing up. I mentioned to him that I’ve never met anyone with bigger hands than mine, and I wear a size 14 (US) shoe. For a while now, I’ve suspected I might have acromegaly, a condition linked to excess growth hormone production, often caused by a pituitary tumor, as noted in medical literature. Despite being 5’11" and not particularly tall, I’ll also definitely bring this up at my next appointment.

To answer your question, I don’t experience ongoing headaches (only very occasionally, which I consider normal). I do feel head pressure, but I haven’t had regular dizziness—just one day of it after my accident. As a dancer, I practice whirling, and am familiar with going past the dizziness (see: whirling dervishes) as part of my daily meditation. Unfortunately, I had to stop once I learned about my Eagle Syndrome and the associated compression issues. I’m looking forward to getting back to it after my surgery and a full recovery, God willing!

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@stylocarotid - Welcome to our forum. I’m sorry to hear all you’ve been through & especially for the lack of help you received when you went to Turkiye for consultations there.

Thank you for posting your CT images. I can see in the top 2 pictures where the smaller piece (which is closer to your hyoid bone) of calcification appears to be resting on or poking your internal carotid artery in addition to the compression of the IJVs your styloids/tps of C1 are causing as they squash the IJV especially on the left side.

Your extra large C1 vertebra is interesting, & you’ve also suggested acromegaly which definitely bears checking out though I thought extra height also goes w/ that diagnosis, however, there are exceptions to every rule. :wink:

I expect your appointment w/ Dr. Aghayev will go very well as he has gained a good reputation on our forum because of the good outcomes the few of our members who’ve seen him have experienced.

I hope you’re able to have the surgery you need so you can get back to dancing ASAP! Please keep us updated as you see the next two doctors in Turkiye.

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Thank you for your insightful reply Isaiah, I will certainly keep the forum updated on my progress. Be well until next time!

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Hi. Have you looked into the other VES surgeons in the US? Hepworth does have a long wait list; but, I’m talking with Constantino (NY) and Nakaji (AZ) ,separately, and hoping to have surgery with one of them in October or November? There is Fargen in NC, Lawton in AZ, and Coniglio (sp?) in NY.

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Sure! Here’s a refined version of your message:


Hi Andy,

I recognize those names, though I haven’t had the chance to reach out to them yet. So far, I’ve only contacted Dr. Hepworth, whom I was referred to after my diagnosis, before arriving here.

My hope is to undergo the procedure safely here in Türkiye, where I can have the support of my family and friends. Additionally, it seems it will be significantly more affordable than in the US. Thank you for your message and the support :pray:

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It’s very important to have family/friend support close by after any surgery so you’re making a good call to have surgery where your family is located, @stylocarotid. You will want to take it very easy the first couple of weeks after surgery & let your family take care of you so your body can heal as quickly as possible. It may take a couple of months for your energy to come back after surgery & symptoms will come & go for quite awhile as your nerves heal.

Sleeping very upright (30º head/shoulders elevation) after surgery will help reduce post op swelling and if you take a narcotic/opioid pain medication, also take a stool softener & laxative starting as soon as you get home from surgery so the pain meds don’t cause constipation. Icing your neck throughout the day - 15-20 min on & at least 45 min off using a gel ice pack w/ a thin cloth between neck & ice pack will also help reduce pain. A sore throat & sore jaw joints are also common after surgery so starting with soft foods may be more comfortable when eating for the first few days post op. Sucking on ice chips or popsicles can help your throat, too, if it’s very sore.

Please let us know when you have a surgery date.

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I truly appreciate all of your helpful recommendations and will do my best to follow them if I’m able to proceed with the surgery. I feel incredibly grateful for the guidance I’ve received here and can’t thank you all enough! I’ll definitely keep you updated on my progress. Wishing you all the best until then :pray:

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