My story with vascular eagles syndrome

@elijah - There is a doctor in Arizona who does an alternative to shaving the transverse processes off of C-1. He has a video YouTube of hime removing a styloid then carving a channel in the TP of C-1 for the IJV to sit in. That took the pressure off the IJV & allowed it to open more fully.

My concern w/ shaving the TPs off C-1 are that it’s the atlas. It holds/supports the head at the top of the neck. If you remove its "wings/side flanks (TPs) it would seem to me that CCI would be the immediate result. There would still be muscles to help stabilize the head on the neck but those bony side supports on C-1 would be gone or dramatically reduced in size. I know many people have had C-1 modified due to vascular compression, but I’ve never heard what the long term outcome of that is.

I share the same concerns. I do not know if I have CCI and I’m not sure there’s anything obviously wrong with my cervical spine judging from my scans, so I’m really hoping that I’ll get lucky and removing the styloids will be enough.

My big struggle is whether I’m missing something obvious here and going to Dr Hackman for double styloidectomy was never the smartest next move, even though I know my styloids need to go.

It seems that unless I do more testing i.e. another angiogram there’s really no way to know. And even then, it’s not 100% clear.

But maybe someone here will see my images and have some bombshell insight to drop :slight_smile:

The other issue I have is that I’ve been out of work for too long and my company has no benefits and I got screwed over by the state and don’t qualify for anything from them. So basically I’m on zero income and I’m not sure I can afford to wait 6+ months just to see someone like Dr Hepworth.

Hi Elijah,
I was happy to see your having improvement!
I am still undiagnosed and am waiting on a neurology referral.
Do you still experience vertigo? I find that the dizziness is the hardest part of doing many daily tasks. I have not felt comfortable driving…
What did you do to help the vertigo?
Thank you and I wish you more improvement even total resolution of your symptoms…
DeeM87

Hi Deem87,

So I only had really bad vertigo in the very beginning. Tbh, rest, some vertigo exercises and Dramamine helped me get over it. It lasted about a week.

Now I have just general dizziness brought on by certain activities, such as eating, any physical labor, and fast head movements. It’s not my worst symptom so I just sit down and relax anytime it comes up.

I know that for vertigo there are some Rx you can take but I never did so I don’t know much more about it. Sorry I don’t have more to say but I guess I’m lucky that dizziness isn’t my biggest symptom.

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Thank you Elijah…

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One of our members mentioned vestibular rehab exercises which he did for dizziness- you can look them up online. Here’s a link to his discussion:
Chronological Symptoms and Events of My Eagles Syndrome - General - Living with Eagle
Maybe it might be worth a try?

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Jules,
You’re fast. The ENT Dr that I saw Monday April 11, 2022 sent a referral for vestibular therapy so I will be looking at excercises. I did test positive for BPPV and he said Eagles is over-diagnosed. Since it is rare I choose to take that with a grain of salt. My pain mgmt Dr who is awesome still believes it to be Eagles but he cannot diagnose me. I’ll let you know what neurologist comes up with.
Thank you for catching the dizziness and an idea to help with it. I’m very grateful.
DeeM87
I remembered not to use my name…:blush:

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One of the first docs I saw when my symptoms began was an ENT and I was originally diagnosed with vestibular neuritis even though nothing came up on any tests. Obviously we now know that wasn’t why I was have my vertigo.

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DeeM87,

Many doctors who seem like they should be familiar w/ ES haven’t heard of it, & often, those who have limit the symptoms they think it can cause. Because of that, ES patients are actually under diagnosed because their symptoms don’t align w/ the doctor’s impression of what they should be. It’s a very frustrating situation. If you have a CT scan that shows elongated styloids &/or calcified stylohyoid ligaments + symptoms (which you definitely have), then you have ES.

Please be prepared for the neurologist to know nothing about ES but pleasantly surprised if (s)he is familiar w/ it.

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I hope that the exercises help you a bit at least…

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Oh yes. My first ENT surgeon who said he does eagles surgery said my styloids we’re not elongated or calcified, which you can clearly see in my scans that they are. Like you said, even if a Dr is aware of eagles sometimes they have very specific symptoms and requirements in their minds that negate many others.

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Very frustrating, isn’t it, @elijah!!

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Jules,
I’m having trouble finding link for vestibular therapy… please help…
Thank you

I tried a few of these back when it was a problem for me.

If the steps aren’t clear just type the exercise name into YouTube search and it should show you how to do it.

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I’m sorry the link I posted before doesn’t seem to be available now, but there are lots of exercises online as @elijah says. Here’s one I found which seems quite informative:
Home-based Exercise - VeDA (vestibular.org)
Hope this helps!

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Thank you your so kind…

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Thank you. Between you and Elijah I’m learning so much about ES. Now I just need to get the right Dr to evaluate and make a diagnosis. I’m seeing my pain management Dr this Friday and will see what he can do to help with a referral. I did look online but in these times one has to be so careful with what you find. I have faith in what I receive from you and Elijah.
I will let you know how it goes Friday…

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Hello, new member here and I’m aware this is a very old post… Just wondering if anyone has a link for the video mentioned above:

I searched YouTube but couldn’t find it. I’m not aware of any surgeon that currently shaves a channel into C1 rather than shaving down the transverse process, but I would be extremely interested to hear if there was.

Thanks!

I think this is the one which @Isaiah_40_31 mentioned:
WARNING - GRAPHIC VISUAL INFORMATION: IJV Compression - Another Point of View - General - Living with Eagle
There’ve also been quite alot of discussions about the digastric muscle compressing the IJV you might find interesting!

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I have seen that one and found it mighty interesting, however I was hoping the video referred to by @Isaiah_40_31 was a different one. In the video you link to, the surgeon appears to remove all of the transverse process (and presumably therefore also the muscle attachments to it) rather than carving a channel and preserving the transverse process tip.

(I also assumed the original comment was from April 2013, so was looking for an older video… but now realise it was actually April 13th :laughing: so I suspect you are right this was the intended video)