My angiogram and CT scan showed that what I have is not really Eagle’s. The styloids are not compressing my IJV’s it’s the C1 and what’s nearby. I’m wondering if there are any doctors that just do a C1 shave or something along the lines that would be less invasive than cutting everything out.
@Johnny99 can you upload an image of C1 in the axial view? I want to see the compression. I know in your previous testing that you lost 100% of an IJV on head rotation. I’ve attached an image of my own C1 in the axial view to help you know what to look for.
That would be a question for Dr. C - @Johnny99. I believe we’ve had a member or two who didn’t need their styloids removed which Dr. C noted once he was doing their surgeries so he left them alone. However, just because your styloids don’t look like they’re causing trouble in the image you shared above, doesn’t mean they’re innocent as @TML inferred.
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The styloid removal is less invasive and easier than the C1 shave. They are almost always responsible for some symptoms. I think it would be very rare for a Dr to not remove them.
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I spent a lot of time reading people’s experiences after surgery and the nerve complications seem much worse than my symptoms. Since my styloids don’t poke into my throat I don’t have any pain or swallowing issues. My biggest issue is brain fog which comes and goes and is far from debilitating. I’m active and very high functioning. Plus, what really gives me pause is the neurologist that discovered the problem said she would not have the surgery based on my last angiogram where the highest pressure she measured in various positions was 16 and that was near normal. The surgeon wanted to proceed because of a papilladema, which my eye doctor caught after I returned from riding roller coasters at Universal. I want to get my optic nerve checked out again to see if the papiledema has gotten worse. It just seemed like I need to pause.
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Just because you lack the nerve symptoms (i.e., classic subtype ES), doesn’t mean that your styloids aren’t compressing your IJVs (i.e., vascular ES). Here is a paper by Dr. Cognetti and his team clearly outlining that ES can be caused by the proximity of a styloid to C1 (causing IJV compression) and that styloid length is sort of irrelevant so long as the styloid reaches C1. Styloids were as short as 2.4cm causing symptoms.
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If you get me that image of the axial view of your C1 I can help you see the styloid-ijv compression
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@Johnny99 - Have you read @Jules comprehensive post about the symptoms ES can cause? I’m not pushing for you to have surgery as you definitely should wait till you’re convinced it’s your best next step, but you may have some symptoms you don’t realize are being caused by your styloids. The brain fog is a clear indicator of IJV compression that’s severe enough it’s affecting your brain regardless of what your neurologist said. Some people become symptomatic w/ only slight compression where for others it’s pretty severe before symptoms become obvious. We are each so uniquely designed that our bodies do react differently even to the same health situations.
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I’ve read hundreds of testimonials over the past year, Post-op nerve issues happen, but honestly not that often with these top Drs and even severe ones, like mouth drooping, resolve with time and maybe physical therapy. You can of course request the Dr not remove them…but they might try to convince you based on past their past experience
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