I was diagnosed by Dr Osborne with eagle syndrome via imaging (CT no contrast).
I would like some help to determine whether I have the classical eagle syndrome or vascular eagle syndrome. Would styloidectomy be sufficient or do I also need a c1 shave?
Symptoms for the past 2years:
Chocking cough sensation; pressure throat when I sit and look down too long.
Daily bilateral ache in ears (feels better when I stick a qtips in them)
Headaches when I sit too long or when I lay too long
High heart rate 140 bpm
Palpitations
Exercise intolerance
Visual snow
Pulsatile tinnitus when I lay on the side against pillow
Some Upright intolerance, but I suspect it is due to high heart rate and throat pressure sensation
Symptoms are better when I look up or lay prone on my stomach with head in donut pillow
Symptoms worse when I lay on my side or look down in sitting (paperwork)
I don’t have dizziness, fainting
I seem to have a larger styloid on the left side and Dr Osborne seems to think the left is the problem. But from ctvenogram, it almost seems that the right IJ is more compressed?
Some questions I do have:
Are my symptoms typical eagle syndrome?
Are my symptoms more nerve involvement or vascular involvement?
Could the apparent venous compression on the ctvenogram be asymptotic?
(I’m not as keen on the c1 shave)
The combination of those symptoms pretty much reduces me to a bed bound invalid at 36yo. I can’t even sit and type this reply on a computer.
Obviously we’re not doctors, so can only give you a bit of an idea about your styloids…
Neither side are that long, but are both quite thick at the top, and looking at the images with contrast there isn’t much room in between the styloid and the C1 process…it does look as though the C1 is compressing the jugular vein as well, but whether if the styloid was removed it would make enough room for the IJV to open up without C1 shaving isn’t really something we could say for certain; usually in surgery the doctors will see if the IJV opens up & if not will look for other compressions.
Laying on your side & looking down (like a chin tuck) can often make IJV compression worse, so not surprising that you feel worse then. Upright intolerance is less likely with IJV compression, usually laying down makes symptoms worse, so you could be right that it’s more heart rate related- the vagus nerve can get compressed with ES & can affect heart rate, blood pressure & can be worse with exercise. You can’t see if the carotid artery is affected at all from your scans- if the styloids irritate that then that can cause heart rate issues too, but usually dizziness or fainting which you don’t get.
My guess would be both nerve and vascular involvement- did Dr Osborne suggest surgery? Have you been able to travel to see him for the scans, or have them in Canada & get him to review them?
@Jules Doctor Osborne reccomended the styloidectomy however does not reccomend c1 shave. He said that some people get c1 shaves bc their c1 processes are deformed, while mine aren’t.
But he made those recommendations base on the CT without contrast. CTvenogram wasn’t available at the app. He order the CTv at my request.
He said that CTv are usually not diagnosistic because people can be totally asymptomatic with 100% occlusions. I’m not sure how much does he believe in vascular ES.
Here is my CTv report
FINDINGS: There is normal antegrade flow within the bilateral internal and external jugular veins. There are no venous thromboses, stenoses, or occlusions. There is normal venous flow into the bilateral innominate veins, and ultimately into the superior vena cava. IMPRESSION: Negative CTV of the neck.
Which is super confusing, bc the request clearly said to rule out vascular eagles and the images show an IJ that’s pretty flattened.
Questions:
Do surgeons usually decompressed the IJ during a routine styloidectomy.
What is actually done to decompresse the IJ?
I agree that your report is confusing when you IJVs both look compressed. I had a similar situation & had to wonder to what degree the IJV(s) need to be flattened for a radiologist to comment on it especially when that’s what they’re supposed to be looking for. A dynamic ultrasound which documents blood flow rates at various points in the IJVs between skull base & collar bones can also be helpful in diagnosing compression. I ended up w/ an angio/venogram which ultimately confirmed it but that is a very invasive procedure. My main symptom is chronic loud tinnitus & hearing loss.
No surgeons do not decompress the IJV during a routine styloidectomy UNLESS the surgeon is one of the vascular ES surgeons on our Doctors List.
Styloidectomy is the first effort at IJV decompression. If cutting the styloid back so it’s not resting on the IJV doesn’t work, an experienced vES doctor will look for other causes of compression such as C1 or scar/nerve/muscle/vascular tissues which are wrapped around or pressing on the IJV. If other tissues are noted to be causing compression, those are moved off the vein. If the problem is exclusively C1 then sometimes the IJV can be moved slightly away from C1 so it can expand but if that’s not possible, the last thing tried will be shaving C1. The least amount possible is removed from the transverse process of C1.
Interesting, I’m not sure I’d agree with him about that! Apparently the veins can collapse to a point when laying flat, so maybe they were considering that?
I had heart rate (rapid) & blood pressure (low) symptoms when I exercised that were scary. They mostly went away after my right styloidectomy, but if I push myself too hard aerobically, I’ll get a little bit of those symptoms back, but nothing like I had before my right side surgery. I’m pretty sure they were caused by my vagus nerve being irritated by my right styloid.
This is an excellent question, & I truly don’t know the answer. On here, we tend to blame the styloids for the nerve symptoms our members experience because at least half the cranial nerves exit the skull near the base of the styloids &/or they “live” in the neck near the styloids. As styloids elongate there’s greater opportunity for them to come in contact w/ those nerves & cause problems. I can speculate that if C-1 is very mis-aligned or the transverse processes are very large, then it could also irritate nerves where they exit the skull since the skull base essentially sits on C1.
It would be possible to be more functional w/ just a styloidectomy or styloidectomies if both sides need to be done. Some vES doctors Rx a blood thinner for their patients to take as they await surgery, & in many cases, those patients get from a little to significant relief of their vascular symptoms while on the blood thinner. If your vascular symptoms are still problematic after your styloid(s) are shortened, a blood thinner might be helpful in reducing them.
