Oy, sorry to hear. Yes this navigation is super challenging and frustrating. I’m glad you’re following your gut and doing what feels right. I had to do same. Sometimes it’s hard listening to others stories as well, esp if they think their story applies to all. We really need to recognize that everyone’s path needs to be just as individualized as their case is.
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In following with the earlier (hyoid) conversion, I’m going to paraphrase what Dr Annino had said to me (and what a patient, Connor C, expounded upon in the FB group). It’s likely true in my case.
Sometimes styloids prevent the chin tuck required for a normal head posture. Styloids can give a severe forward head posture because they can press into the carotid sheath when one brings their head down to look forward. So instead, the person has to keep their head tilted up. To look forward is to be forced to drop the neck into the typical forward head posture. All of the random muscle spasms throughout their neck and jaw might cause movement dysfunction across the TMJ.
This might cause C1 to be malrotated to the right which is likely what is causing compression of the 8th cranial nerve.
Below paragraphs I’ll share what my functional MD has has sent me before my surgery. She’s been with me 17years on this journey:
Yeah I think you are very close to a full resolution with these surgeries. My new theory is that the ES over time causes “congestion" in the brain, heavier brain, tends to “sink” into brainstem, and the ES surgery may take the C1 problem and render it moot.
The C1 notch is the third side of a triangle, holding together the jugular, carotid and vagus nerves- as well as some CN nerves (traveling thru or nearby). So in a way, to the extent the C1 adjustments created space and decompressed the brain, they were somewhat lifesaving for you. Chronic high pressure will lead to demyelination, eventually possibly dementia. So I think the C1 work obviously was not curative but represented very good palliative approach, though we didn’t know it or understand it fully.
I wonder whether the CCI (instability) comes first, and the pressures on the styloid due to malpositioned C1 (which is ultimately due to ligament sprain/damage from trauma and/or chronic inflammation) CAUSE the styloid to thicken, calcify etc; that it is the body’s way of trying to stabilize holding up the head. Which would explain why it might regrow as in the young boys case.
The brain has no direct pain or pressure sensors, but indirectly if there is higher pressure it will push on the eye orbits, skull, 8th nerve and ear apparatus, and cause jugular pressure…so i can believe, yes, that when you sat up, there was some relief of ICH/high jugular pressures that you felt. Also, your behind the eye pressure causing you to shut one eye after waking or laying, is relevant.
