Reading through the details of @NRuflove s journey (hoping you find relief!) and review of her scans by @KoolDude …
If anyone has had discussions, knowledge, or experience of C1 rotation alone causing the nerve issues would love some feedback. It’s clear it can cause the vascular issues but I’m not seeing anyone discuss it w/ re to nerve issues and want to check that box if possible.
From @NRuflove s post … comment from @KoolDude ”The picture below is not perfect but serves to show you that your C1 has indeed rotated and could be the culprit here since there are muscles, vessels and nerves in that narrow area”.
This is me as well. Seems there’s no doubt that ‘something’ moved to cause my acute situation. I’ve asked the doctors if C1 rotation can cause the nerve symptoms and I consistently get back no prob with C1 rotation (???).
However, with gentle upward pressure on my right transverse process of C1 (while laying on my back) I can get some space there, ever so slightly…and like with atlas orthogonal chiropractic, it will not stay consistently away.
Struggling with the logic and anatomy here… Seems to make sense that if I get any tiny bit of movement of C1 away from the Styloid, I open up space and lessen symptoms. So am I benefiting from C1 rotating backwards or C1 rotating away from the Styloids? Of course it could be both.
Perhaps the easiest “test“ is to remove the styloid and see what shakes out. Met with Dr. Hackman, and as others have said, this is what he does, a fairly simple, (relatively) surgery to just get it out.
With the more aggressive measure being C1 shave, I believe Dr. Costantino thinks it is still in the mix. He’s asked for another consult after reviewing my MRV. Hoping the CTA/CTV will provide a definitive answer on this option and anxious to hear his comments on the MRV. The Vascular Neurologist who ordered the MRV said no compression… so is confusing.
I’ll keep digging for clarity. Thanks always for any info ))).
I’m in the car, so it’s not letting me edit above… To clarify I don’t doubt that C1 rotation can cause problems… I hadn’t thought specifically about it until yesterdays discussion.
Could be that this falls out… again because the styloid removal makes the necessary space and removes the obstruction (?).
Well, I do see that your C1 is rotated to the left (offset laterally to the left) relative to skull. So it can potentially cause pain but to what extent I do not know. I also see that your smaller left IJV is compressed by C1 mainly. However, I think your syncope symptoms when lying down is not related to this rotation (Occipital Pain - potentially yes). I suspect your Vertebral narrowing is getting worse when you lie down potentially causing light headedness/presyncope/syncope (As explained below previously - see below images). You need dynamic Angiogram on your vertebral arteries to rule out potential dynamic compression on them when lying down. That is the only way we can know for sure.
Thank you !! as always for your analysis. No need to reply ))… but included details below for others, who might be having similar symptoms.
My syncope symptoms have ‘mostly’ resolved for which I don’t know what the cause of that is. I still feel some compression type symptoms but those have also gotten better. I have an upcoming appt with a vascular surgeon* to evaluate for thoracic outlet and I am suspicious of that compression being in the mix (brought up to me by Kjetil Larsen).
But very interesting about my vertebral narrowing. I had a scheduled appointment with the vascular neurologist this week to go over your notes, (thank you very much) and it fell at the same time that I was able to catch a waitlist appointment with Dr. Hackman. So I will be discussing these items shortly.
I am working on occipital and cervical pain. Have an appointment mid September to go over occipital and upper cervical nerve blocks with my prior physiatrist (from 20 years ago). It is hard for me to tell what is occipital pain versus skull base pain versus compression, so trying to work through those.
My primary symptoms ‘I think’ are more nerve related now. Facial pain, jaw, temporalis pain, skull base/occipital pain, shoulder, and what I suspect is, maybe Vagus irritation when I look down… As I feel a bit of an adrenaline rush, shaky, jittery… But still, I have a question about whether that (looking down) is cutting off some blood flow or just irritates the nerves.
I definitely feel I’m getting closer to understanding which way to go. After meeting with Dr. Hackman yesterday, it certainly is attractive to have surgery in four weeks and have this removed and see how I do. But as you and everyone else knows, this is a huge decision that we have to make as lay people.
*(At this point, I am looking at thoracic outlet as secondary to this, and if there is something there, I believe I’ll deal with it after the styloid as some folks have recommended).
Good plan @Leah, to deal w/ TOS after ES surgery as some of our members who had TOS symptoms recovered from them after their styloidectomies so no further treatment was necessary.
It is so hard to know what’s causing what, so sometimes easiest to just bite the bullet & go with the ‘easiest’ option- not that ES surgery is a walk in the park but maybe better than having a C1 shave? I don’t know how beneficial a C1 shave would be if there’s still rotation? Praying that you make the right decision & surgery helps!
