I'm finally on the road to answers!

[Trisha]

I’m not sure how to feel, mad, sad, happy for a bright future. Ive been passed around for 4 years with tons of "normal MRI’s , x-rays and an MRV. I went to get an upright MRI out of state to get some answers. Here are my reports of Cranial Cervical Junction and brain attached. Seems like alot is going on. Pics included at the bottom were a “normal” MRV 6 months ago. I was told I had a very small Left transvers sinus but the blood would find its way around.

CRANIOCERVICAL JUNCTION REPORT.pdf
1c43823073660ee6fc6d7850aa37058028e05556.pdf (1.1 MB)

BRAIN REPORT (1).pdf
0dbcbfac8758539ba4238e873c24a9ef93a1ecbb.pdf (448.0 KB)

[Jules]

Can’t say I understand it all, but it’s very thorough! Good that IJV compression between the styloid & the C1 process is confirmed, that does align with some of your symptoms… and it seems as though you may have CCI?
It’s not great to find out all these things, but good to know that you were right to keep pushing for a diagnosis, and that the doctors who passed you around all those years were wrong!
So, what are your next steps, are you able to get a referral & travel to one of the doctors experienced with vascular ES, like Dr Nakaji in AZ? Or will you see what a local doctor says?

[Trisha]

Thank you Jules, I love that you took time to look at my reports. So crazy, I knew something was wrong and they made me think I had anxiety so I would believe if for a while. It’s actually pretty sad. It terrible that so many people have and are going through this. I have sent my scans to 3 different doctors one is that ES doc that doesn’t do surgeries. I think I mentioned his hame in our last convo. I can’t remember lol. Whoever calls first I’m going to request a CT with and without contrast. And a CTA, maybe I should just go straight for that? Not sure what’s best. Im ready to get this ball rollin. I’m willing to travel, I will hopefully be able to get it covered through insurance is the dr in AZ the best for VES?

[Trisha]

Does Hepworth in Denver work on VDS? My sister in law lives out there so I can recover for a few days. Do you mind me asking about recovery time? Thinking we should probably get a one way trip they fly back when I start feeling better.

[Jules]

Dr Nakaji in AZ is very experienced with vascular ES, yes, and Dr Hepworth is great too if that’s an easier place for you to recover in, he does have quite a wait though as so many people travel to see him…Some members have flown back a week after surgery, others leave it longer, it does very for us all. I think it makes sense to be around for a bit longer if you can though just in case there’s any problems…
A CT with contrast should show compressions, if you could get a dynamic one then the scan can be done with your head in different positions, often the compression alters with different head movements. But it might be worth contacting the doctors’ office who ever you want to see & asking, as some doctors like different testing & can be quite specific about how they want it done, just worth checking as you don’t want more testing/ radiation/ cost than you need ti if the doctor might want something different?

[Trisha]

Thank you for all the information! Since I spoke to you last I have mailed my cds to Dr Hepworth. I have a CTA of neck and head on the 18th and CT of head and neck on the 21st. Thanks for all the after surgery tips so I can kinda plan out a plan. My nerologist got the results and went over them with me. I finally have a diagnosis. Feels weird after all these years to actually know what’s wrong with me. The nerologist says let’s get these tests done then we’ll go from ther, the next step will probably be a styloidectomy. Crazy to hear these words. She said 0.16% of people with elongated styloids have these symptoms, most people never know they even have it. After being pushed around “especially neurosurgery” saying there are no more tests that we can do, reffer back to your nerologist over and over again as I was begging for help, has anyone taken action and filed a lawsuit for malpractice that was successful?

[Trisha]

(attachments)

[Isaiah_40_31]

I’m not aware of anyone filing a malpractice suit because of ES medical incompetence. That doesn’t mean it hasn’t happened. From my experience w/ people who have filed medical law suits, the process can be very long & drawn out & often the end result doesn’t justify the time, emotional energy & money spent. We have had members send their imaging & diagnostic reports to doctors who were dismissive, misdiagnosed them or told them is was a psychosomatic problem. I don’t know what the outcome of those actions have been but it did provide self-vindication for the patients themselves which is as it should be.

I’ve annotated your right styloid image w/ a red line showing you have good space between your right styloid & the transverse process of C1 which indicates there is less of a chance of IJV compression on that side. Your right styloid is oddly shaped toward the tip. The top aqua arrow points at what looks like the end of your styloid & the lower one to what could be your stylohyoid ligament which has calcified beyond the end of the styloid.

Your left styloid is more normally shaped, but the space between styloid & TP of C1 is very small (red line). This could be due to the angle of the image, but if it is accurate, there is a greater chance that you have IJV compression on the left side.

[Jules]

So pleased that you have a diagnosis, and that you can get the images sent to Dr Hepworth… I know it’s frustrating that you’ve been fobbed off for so long! I agree with what @Isaiah_40_31 has said about your images.

[Trisha]

It seems like a dream really, to finally have answers you guys helped me know what was going on with me, I appreciate you all so much for helping me, I will forever be grateful

[Trisha]

It feels like a dream to finally have a diagnosis. Thank you so much for all of your help through this, you are wonderful people to take the time to help me. I will forever be grateful to this forum

[Trisha]

Just wanted to share my “normal” CTA. I don’t understand why it’s so damn hard to get help with this syndrome. I went directly to radiology to get a CD, I went home and converted it to 3D I’ll attach images. This is nuts!

EXAM: CTA neck with IV contrast.

INDICATION: Migraine, evaluate for Eagle syndrome.

TECHNIQUE: Contrast-enhanced CT angiogram of the neck was performed with 1 mm axial images, coronal and sagittal reformats, and 3D maximum intensity projections. Carotid stenosis measurements were made using NASCET criteria.

COMPARISON: Cervical spine radiographs dated 6/20/2024; MRI cervical spine dated 1/28/2025.

FINDINGS:

Vasculature:

There is a conventional three-vessel anatomic configuration of the aortic arch. There is no atherosclerotic plaque at the bilateral carotid bifurcations with without stenosis by NASCET criteria. There is no plaque ulceration or intraluminal thrombus.

The bilateral vertebral arteries appear normal without significant stenosis. Incidental note is made of proximal origin of the right PICA from the right V3-V4 junction.

There is no evidence of dissection.

No evidence of venous thrombosis.

Nonvascular findings:

Lung apices: There is mosaic attenuation of the lung apices, potentially the consequence of expiratory phase of imaging. No focal consolidation or mass is present.

Aerodigestive tract: Normal.

Lymph nodes: Scattered cervical chain lymph nodes are present without concerning imaging features.

Glands: The thyroid gland, submandibular and parotid glands are within normal limits.

Orbits and globes: Within normal limits.

Paranasal sinuses and mastoid air cells: There is sequela of bilateral uncinectomies/maxillary antrostomies. The paranasal sinuses are well-developed and well-aerated. The middle ears and mastoid air cells are well-aerated. Incidental note is made of pneumatization of the petrous apices.

Dentition: No dental caries or periapical lucencies. There is torus mandibularis interna. There are scattered dental amalgams and changes of prior root canals.

Skeleton: No elongation of the styloid processes or ossification of the stylohyoid ligaments. There is mild reversal of the normal cervical lordosis, which may be positional. No lytic or blastic skeletal lesions. No significant spinal canal or neuroforaminal narrowing.

IMPRESSION:

No acute abnormality great arteries of the neck. Specifically, no elongation of the styloid processes or ossification of stylohyoid ligaments to suggest imaging evidence for Eagle syndrome.

(attachments)

[Isaiah_40_31]

Your styloids are definitely longer than average (2.45-3 cm). Even at 3 cm some of members have ES symptoms but that may be due to other physical attributes of the styloids vs actual length. I agree w/ you that the radiologist who read your imaging must be misinformed or ignorant about what length & physical features of a styloid would define ES in a symptomatic individual. I had a similar experience w/ an MRV & CTA saying I had no vascular compression when I had obvious bilateral IJV compression. It is frustrating.

Your vascular images look ok to me, but since you’re having symptoms of ICA compression, I’m obviously missing something. It could also be that with your head in neutral position during the scan, your styloid(s) weren’t causing any trouble w/ your ICA(s) so it’s not visible in the scan images.

[Trisha]

Oh wow, an MRV and CTA said no vascular compression? That is exactly what happend to me, I had both tests. What test do you suggest I do next? I have sent all my CDs of my scans, in the mail to Hepworth, his office said that would be best. Hopefully I’ll hear from him soon. Im just trying to get everything in order so It can move as fast as possible. Thank you, I love hearing your thoughts on this. It really helps me on my journey

[Isaiah_40_31]

I really like Dr. Hepworth as a person & as a surgeon but need to tell you his office is “scatter-brained”. There isn’t good follow-through. If it’s been a week or so since you mailed your scans to his office, you’ll need to call next week to confirm they got them & to set up an appointment (don’t hang up w/o doing both of these things). DO NOT wait for them to call you as the call will most likely never come.

You don’t need any more imaging at this time as any additional required imaging will be ordered when you go for your consult (make sure it is ordered before you leave the office). Your first appointment will be w/ one of his NPs either Sarah Reynolds or Alison Love who will order an ultrasound through Health Images in Denver, a company that has techs who know Dr. Hepworth’s desired vascular US protocols. Two days later you’ll have a follow-up w/ Dr. Hepworth, & he’ll discuss your symptoms & scan results then & will mention any other scans he wants you to get. The initial consults are usually Tuesday w/ the US being on Tues or Wed, & the follow-up w/ Dr. Hepworth on Thursday.

Don’t expect a reminder call about your appointment though it’s smart for you to call a week prior to confirm it’s still on the books as sometimes appointments get changed/cancelled w/o patient knowledge or confirmation.

I know this sounds like a lot of effort, but it’s worth it in the end.

[Trisha]

Sorry for the late response. Things have been busy around here and we’ve caught a battery cold that makes my head pressure 10 times worse. I have called Dr Hepworths office a couple times last week, leaving one message and haven’t heard back, I’ll call again on Monday. I also contacted Dr Osborne’s office and am debating just filling out my info on line and paying the 250 for a consultation. I just feel like denver would be the best because my husband’s sister lives close by there so that I can recover there. I really appreciate all you’re doing to help me. I feel like that would be hard for someone that has recovered from this , I’d imagine you’d just want to move on. So I just want to say thank you from the bottom of my heart.

[Isaiah_40_31]

The times I’ve found best to reach someone in the office & not get VM are just before lunch (which they take from 11:30 -1 pm) or shortly prior to closing (4 pm). You can also try at other random times. If you get VM on your first attempt, call back several times in succession as sometimes that provides success. I hope you can get through on Monday if not, it may be less busy on Tues.

Dr. Osborne doesn’t do vascular decompressions per se, but consulting with him would probably give you some good information.

I’m happy I’m able to help you. I’ve been on the forum for going on 11 years but have only been moderating since 2017. It’s been my pleasure to help support others as I was supported during my time of need.

[Goose]

Hi. I went to Dr. NAKAJI… But it was for a review of a spinal MRI.
I had a spinal epidural lipomatosis on my thoracic spine and my doctors at Barrow Neurological… Doctors meaning the neurologist and the headache department… They told me it was nothing but I wanted to know exactly how long this SEL went… I also have all of the symptoms of eagle syndrome But I was told that my right styloid wasn’t a problem… Even though it is longer than the one on the left by about 25%.
I still suffer all of my same symptoms… They sound identical to all of the eagle syndrome stories… I have different insurance now, so maybe it will be easier to see Dr.Nakaji. I wasn’t aware he was a specialist in eagle syndrome. He used to be at Barrow Neurological…
I have so many images… Probably too many… Too much radiation too many CT scans… But I really have no life…
I wonder sometimes, if Eagle syndrome can cause spinal pain… I have always felt that I have a blockage in my brain… Not necessarily a spinal fluid leak, but a blockage that creates pressure and when it gets bad, the pulsatile tinnitus gets very bad bilaterally…
Almost 2 years ago I had a phone consultation with Dr. Patsalides, from the imaging, I sent him he could not give me a possible explanation for my symptoms, but he did validate that my symptoms were real and a theory that he had was that maybe I have something blocking the pressure in the neck or the brain and then it creates pressure in the spine… I have not been on this forum in a long time… I get so tired of being gaslit that I moved out of state now I go back-and-forth to another state… I go between Arizona and Utah… It’s amazing how connected my medical team is in Utah compared to that in Arizona. Like any specialist I have, has all of the information and they all communicate very well… In Arizona, it’s all discombobulated…
I ruled a lot of possibilities for symptoms out, but they are still there…
Thanks for sharing your information. It helps so many.

[Isaiah_40_31]

Welcome back, @Goose. I’m sorry two years have passed since you joined us here & you still have no answers. From what you said, it sounds like you may have internal jugular vein compression being caused by your styloid(s) & C1 vertebra which may have shifted position when you received your whiplash injury. I’m really surprised no one has caught it, if that’s the problem.

IJV compression causes intracranial hypertension (high blood pressure in the brain) because a constricted IJV prevents the blood from flowing out of the brain at the necessary rate to keep up w/ the inflow from the internal carotid arteries. The result is terrible migraines, visual changes, pulsatile tinnitus, de-realization (feeling taller or shorter than you are, ground is further or closer than it really is, etc.), & dizziness, among other symptoms. When the pressure stays too high in the brain over an extended period, the body relieves it by causing a CSF leak. Once pressure normalizes a bit, CSF leaks sometimes heal themselves which then causes pressure to build again then a new leak occurs. This has been termed Spiky-Leaky Syndrome. Constriction of the internal jugular vein(s) is referred to as Vascular Outflow Obstruction.

As you may know, Dr. Nakaji has left Barrow & is in private practice in Scottsdale now. His private practice is in the early stages so there may be some insurance companies for which he isn’t yet an established provider. It would be good to check on that regarding your insurance. It does sound like it would be a good idea for you to see him to discuss the things I’ve just mentioned. Besides Dr. Nakaji, you could also contact Dr. Hepworth as he is an excellent diagnostician. His office is a bit disorganized & communication can be slow/frustrating, but the doctor himself is very good.

@Goose

I was told that my right styloid wasn’t a problem… Even though it is longer than the one on the left by about 25%.

If your styloids are at all elongated, & you have symptoms, the sort of dismissal you received is just wrong & demonstrates the doctor(s) you saw don’t have adequate knowledge of ES. It’s well known on our forum (& should be among the medical community familiar w/ ES) that it’s not just styloid length that determines whether a styloid can be causing symptoms. Other physical features can be even more detrimental than length: thickness & how curved, twisted or angled the styloid is can play into the symptoms it/they are causing even if not elongated. We’ve had a couple of members who had normal length styloids which had “barbs” growing off of them. Those barbs were causing symptoms, thus physical features of a styloid are critical to assess, too.

@Goose

I wonder sometimes, if Eagle syndrome can cause spinal pain

Possibly if you’re getting CSF leaks in your spinal cord. Another thing that can cause spinal pain that’s somewhat related to ES is loss of the lordotic curve in your neck. This in turn puts more pressure on the thoracic & lumbar parts of the spine as they’re having to assume some functions that the neck is no longer managing efficiently. Many of our members have what’s called “military neck” meaning the cervical spine has straightened out. This brings the styloid into closer contact w/ nerves & vascular tissues in the neck which can cause ES symptoms. The cervical lordotic curve can be restored via gentle PT exercises but it’s slow process & requires persistence.

[Goose]

Thank you for such great information.

What you sent me is spot on to my symptoms and what I have thought deep down what is going on.

Two years ago, I consulted with a doctor in New York, and though he couldn’t see anything on the images they had, he did say the symptoms were real, and mirrored the symptoms of intermittent spinal fluid leak - idiopathic intracranial hypertension.
this is so much affecting my brain function… Extreme fog and what it feels like intermittent memory loss. It’s so hard to explain… Hard to explain to doctors who don’t understand and don’t really care to.
I have one doctor in Utah, A cardiologist who suspects I have Lyme disease… The testing the CDC approves for Lyme disease and the testing that is out there by Lyme literate, doctors and pathologists, are completely different.
My tests did come back somewhat positive, but my doctors insist I don’t have Lyme disease, but my naturopathic doctor say I do.
if you have known anyone or you yourself has gone down that Lyme diagnosis, rabbit hole… You’ll know what I’m talking about… Millions of people are dismissed with this disease until it goes chronic where they can’t function.
Do you know of any doctors that treat ES in Utah?

thanks again for responding so quickly and with such great info. I really appreciate it.