Hi, I’m GeorgiaKay and I’m fairly new here, just having found out in October of this year that I have Eagle’s Syndrome, among a host of other symptoms. I’ve been following posts on Living with Eagle for a time now…
Headaches have been a chief complaint as well, though I had a neurologist inform my husband & I in August that there is no such thing as a ‘headache’ – “they’re MIGRAINES,” he said. In fact, before he concluded the visit, he paused at the door and said, “If you don’t believe me, go home and use ChatGPT to research headaches and migraines.” We were floored he basically washed his hands of us, getting nowhere in a helpful diagnosis and went so far as to tell us to use AI to find answers to our questions!
Well, we did more research after that visit, convinced not all stones were turned yet. In our research, we learned about Dr. Jeffrey Middleton in Fort Lauderdale, FL, who specializes in using 4 phase, 3D CT scan imaging to diagnose his patients. Within 2 weeks of learning about him and watching a few of his videos as he went over his 3D CT scans, we wondered if he could help us too, and so reached out to him. By the first week of Sept., we were in FL, getting his specialty CT scan done.
That scan revealed a lot more than either my husband or I imagined it would, but “seeing is believing” they say. Dr. Middleton, in a nutshell, told me I have a connective tissue disorder going on and that there’s hypermobility as well. “Likely EDS,” he said, though which kind we didn’t test for yet… A few of the findings, before I attach some imaging, is a totally compressed jugular on the left side (which he confirmed with ultrasound, after a doctor in Germany first discovering it in May of this year); the first ribs dropped from the normal facet; atlas hypermobility, with rotational instability; Eagle’s Syndrome - which he mentioned a couple weeks ago as being an added diagnosis; significant compression of the brachiocephalic vein, measuring barely 2 mm; bone spur growing on C2, where the bony bridge is incomplete – he’s concerned it could impinge (or rupture from head/neck trauma) the vertebral artery…; a calcification on the TOL? - on top of the dens of C2, which really puzzled him and he wondered if it has anything to do with my daily headaches – on right head rotation the calcification would slide up and around the dens; venous drainage down through the spinal column causing congestion bilaterally and occupying space – he thought it might collapse once the IJV are opened up. He thought I likely have a congested lymphatic system as well because of the venous drainage. C1 moves off C2 plenty; CSF leak is likely; left head rotation causes the odontoid to go off center quite a bit, but right head rotation makes the odontoids pretty much straighten up as they should be in neutral position; “both vertebral arteries are not tracking like you’d expect” in his words – what does that mean?? C2 is asymmetrical, possibly causing it to pull sideways. He said the headaches could also be from orthostatic venous pooling, though it seems like a package of numerous issues causing the symptoms.
In May of 2025, Pr. Scholbach in Leipzig, Germany diagnosed me as having May Thurner and Nutcracker compressions, and he found the left totally compressed jugular as well.
Now, symptoms and diagnoses aside, I wanted to comment a bit on the numerous meds mentioned here that folks have tried for migraines/headaches. My doctor had me try all sorts of Triptans, Agovy injections, numerous triptalenes, etc. The neurologist in August had me try Nurtec, because he was sure that was the answer. I might as well eat smarties for how well any of those worked for me – they DIDN’T work. Hydrocodone has been my crutch and it cuts that awful head pain. The headaches are back once it wears off, but at least it gives some bits of relief.
I had 4 PICL stem cell treatments with Dr. Centeno in CO, including PRP treatments in the same procedure as well as a hydrodissection to hopefully reduce nerve pain. I have not gotten relief from the headaches, though the PICL’s likely resolved the previous upper cervical instability …
We are waiting to hear from Dr. Hui in Hawaii and Dr. Hepworth in CO whether they can decompress the brachiocephalic compression or not. If it’s a no-go with them, then we are considering Pr. Sandmann in Dusseldorf, Germany to decompress it along with also doing the May Thurner and Nutcracker decompressions as well. He specializes in external vein decompressions, using a PTFE shield on the outside of the vein instead of stenting inside the vein.
Some screenshots yet from Dr. Middleton’s 3D CT scan:
This first one is of the brachiocephalic compression
Perhaps I should have started a new post instead of replying here. Feel free to move it if need be. I’d be interested in hearing your opinions on the imaging too!
). Since Dr. Hepworth decompressed my left IJV last year, I’ve had no more vertigo issues & my hearing loss has stopped progressing. I still have hyperacusis but even that seems less severe than it once did.
