I was just wondering if anyone went down the CCI path to try and find out why their neck doesn’t like lifting their head. My latest MRI of neck didn’t show anything besides straightening of the curve of neck. My head wants to lean backwards generally and muscles to tilt it back to level are very weak. I think my body has learned that chin tucks are bad news for the compressive structures in my neck. The chin tuck position supposedly is protective of your spine. I am trying to find imaging of my neck from old MRI, but this is the best I can find from recent CT:
@jobby99 - If you can travel, the Centeno-Schultz Clinic in Denver specializes in CCI diagnosis & treatment. It would be a place to start if you want to look into that.
I don’t know if it’s of any help at all, but one of our members, @PatientD posted info about looking for signs of CCI yourself, I’ve copied it into this discussion:
Newly diagnosed vascular eagles syndrome - General - Living with Eagle
Please forgive me if you’ve already had testing or imaging, I don’t know much about CCI myself, you probably know more!
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I saw his youtube video and he believes if you have a lot of throat symptoms like dysphagia, then it is likely ES. I have a metric ton of throat symptoms, so I guess that settle one argument. So, I don’t think he intended this, but a lot of people on this forum are going to take that as a sign to continue treating ES as planned. Ironically, you will lose some strength when your styloids are removed, making CCI worse possibly. I think that makes sense, but it doesn’t seem like a good reason not to treat it. He argues treating the CCI first is safer course of treatment. It is cheaper and easier to treat the ES, which I think is the secondary concern of many patients. If there are less than a handful of providers for a given condition, then insurance generally believes it is experimental. Sadly, from experience, I kinda regret going the non-insurance route with a surgeon in 2019 for piriformis syndrome (piriformis removed), when a handful of people now take insurance and likely do the same exact procedure (based on who they trained under). My IRA took a big hit and has not recovered.
CCI/AAI are both somewhat new on the spectrum of health problems being acknowledged as serious compared to something like ES which was recognized prior to 1937 but was finally given a name in 1937 when Dr. Watt Eagle more definitively identified it. I expect w/ time, as you noted regarding your piriformis surgery) the treatments & surgeries being tested out now will lead to more successful modes of dealing with & helping to heal the symptoms of CCI & medical insurance will eventually get in the game & start helping cover patient therapy costs.
When I was diagnosed w/ ES in 2014, many medical insurance companies didn’t recognize Eagle Syndrome as a viable diagnosis so wouldn’t pay for styloidectomy surgeries. My surgeon billed mine as a craniectomy. One of our members posted that within the last couple of years, an ICD-10 billing code for Eagle Syndrome came into existence so doctors no longer have to be as creative in finding surgical codes that their patients’ medical insurance companies will pay for.
It is possible that getting your styloids resected & IJVs decompressed will reduce your symptoms significantly, but with the presence of CCI, sometimes the outcome isn’t what it is for those who don’t have it.
Here’s a link to an article I found online about CCI which may be helpful for you:
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