Hi, I was diagnosed with Eagle Syndrome last week by Dr Bolognese at Mt Sinai. I originally sent him my scans because my doctor at Mayo thought I have CCI (which it appears I do, along with tethered cord and IIH).
A bit of my story: I contracted COVID-19 in Dec 2020 and subsequently developed a very disabling case of long COVID. Prior to this I was very healthy, fit, and had a great career as a research professor. I was 44 when I became I’ll and am now 49. Now I have multiple dx’s including POTS, ME/CFS, MCAS, SFN cSVD, etc. I began developing chronic pain in my neck, jaw, and face about two years in. Also trouble swallowing, tinnitus (both garden variety and pulsatile), and feeling like something is in my throat.I actually thought it was TMJ from the stress (teeth grinding at night).
So fast forward through over 100 Drs for myriad symptoms from long covid, and I finally got around to getting checked for CCI. Dr Bolognese will review your scans and detailed health info and write up what he finds for a fee, so I went that route. As mentioned, he found evidence of CCI, IIH, and tethered cord, but the Eagle Syndrome was a surprise (mostly bc I had never heard of it). Now that I see the massive styloid processes, I see how they could be causing several of my symptoms. So, I am thinking a styloidectomy is in my future. I am aware of the controversy surrounding Dr B w surgery and am unsure what my next steps will be. Advice appreciated on next steps. I know most surgeons who do this type of surgery have a long wait-list.
Including a CT of my museum-worthy styloid processes. I’m quite worried about the right one poking into what I think is an artery).
Wow, they are certainly long styloids! We have had members who have IIH, caused with the styloids compressing the Internal Jugular Veins. Did anything on the report say about vascular compressions by the styloids? Usually if the carotid artery is compressed, the common symptoms are fainting, dizziness, stroke like/ TIA episodes, eye pain, sometimes pain in the neck & down to the chest; do you have any of those, even when your head is just in certain positions? It could be the angle of the CT, although it does look like the styloid is very close to the blood vessel…
Here’s a link to the Doctors list: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Dr B isn’t on our list because of the controversy around his surgeries, as you’ve said. The other doctors who are experienced with vascular ES are Dr Costantino in NY, Dr Hepworth in CO , I think possible Dr Fagen in NC (he is very knowledgeable about vascular issues, but not sure how many ES surgeries he’s done, I think he’s worked with Dr Hepworth in the past), and Dr Nakaji in AZ, although that’s obviously a bit far from you! Dr Hepworth does have a long waiting time, I think Dr Costantino is less of a wait.
Some of the doctors do like more testing to be done, and sometimes have very specific methods/ doctors who do the testing for them, so I wouldn’t suggest looking into having any more scans for now- next step would be to contact any of those doctors (you can search the past discussions for posts about surgeries they’ve done for members), send your scans and reports to them & see who will help you.
Hope this helps!
I have tentatively been diagnosed with IIH based on my symptoms, but Dr B wants to do further testing for that and CCI. Covid messed my body up so much that it is hard to tell what symptoms are due to which syndrome, honestly. But now that I know I have Eagle Syndrome, I can definitely tell some of the symptoms are related to that. The really serious neck and jaw pain started a couple of years ago. I wasn’t told anything in my report about venous or arterial compression, but it seems likely looking at the scan and coupled with the fact that I have had a transcranial Doppler showing reduced bloodflow to my brain.
@Jules Do you mean Fargen? Instead of Fagen. He is talked about a lot, like multiple times a week, in the FB groups ‘Jugular Venous Outflow Disorders’ and ‘Eagle Syndrome Group’. Seems like he is getting really good results and is capable of doing stents if needed.
Yes, @Andy89316 , that was a mis-type, I did mean Dr Fargen , thanks for that info, if I remember right not many members have had surgery with him on here, I think one of our members was the first to have it… @Pamela ES can cause some weird & wacky symptoms, the vagus nerve can be irritated which can cause heart arrythmias, anxiety, breathless feelings, one of our members caught covid a little while after surgery (@BrooklynGirl I think), and felt pretty rough with the combination of long covid & vagus nerve issues… I’m not an expert at all, but I did thing your C1 & C2 vertebrae look a little off kilter, so it’s certainly worth looking into CCI as well, there have been a few discussions about testing for that on here as it does seem to be quite common to have both, unfortunately…
@Pamela - The internal carotid arteries (ICAs) take freshly oxygenated blood from heart to brain, & the internal jugular veins (IJVs) drain the deoxygenated blood from the brain & are part of the channel that takes it back to the heart for re-oxygenation. When the ICA(s) get pinched, it obviously limits the blood flow into the brain whereas when it’s the IJV(s) that are compressed, the blood backs up in the brain causing intracranial hypertension (IH). In a few cases we’ve had members who had both ICA & IJV compression/irritation by the styloids. IJV compression is often caused by the styloid & transverse process(es) C1 being too close together. Because your picture is straight on from the front & the TPs of C1 aren’t visible it’s hard to tell if you have that problem.
Your right IJV looks very distended even up at the level of the skull base which I haven’t seen before, & both IJVs look like your styloids are resting on them. I also agree that it looks like the tips of your styloids are possibly touching your ICAs though it’s hard to tell for sure due to the angle of the picture.
