My story with vascular eagles syndrome

Hello All,

I would like to share my story of vascular ES in hopes to help anyone I can as well as hear all your amazing feedback and ideas. I’ll keep it as brief as I can.

After a night of painting my walls I woke up with terrible vertigo. Vertigo lasted about a week and then started to experience tinnitus, eye pressure / bouncing with my pulse / double vision, terrible head and sinus pressure, GI issues, weight loss, irritability, brain fog (not severe, but hard for me to focus on things), neck stiffness.

Like so many of you, prior to this I was a healthy, pain free human. After countless Drs, blood tests, MRIS and CT scans I finally found an interventional neurologist in NY named Dr Arcot. On our very first appointment he asked me if I ever heard of venous stenosis or IIH and it was the first time in 2 years a Dr mentioned something at an appointment that I did not think of in advance.

We did an MRV / MRA and then attempted balloon angioplasty only discover that my left IJV is completely occluded at the C1 / Styloid process level, and my right side - which is the dominant side - is severely stenosed. He said it was working at a max of 20%, and that’s when I was laying down. I also have clotting on the left side above the occlusion, but Dr Arcot said it’s fibrotic and and balloon can open it when we remove the compression. We Hope.

Now for some reason, Dr Arcot did not have me do a pressure gradient test. He said he has his reasons for it but it’s a long conversation to explain and we never got around to it yet. So one day I need him to explain that to me.

What we did know is we finally found an issue and surgical intervention was needed.

We decided to do the left side first. Dr Arcots logic was that it’s already closed and not working. My right side is my only working (barely) IJV, so let’s first see if we can open the left side, see if I feel any improvements and then we can decide on the right. Why risk touching my only working IJV.

I had an appointment with Dr Patsalides who said he would not touch the left and only focus on the right, but I decided I like Dr Arcots more conservative approach. I don’t think there is any right or wrong answer here, however, I do not like the idea of having an occlusion, being that there’s already some clotting and some reasons to think that it can lead to clotting further up.

I had left styloidectomy done at NYU on March 15. Surgery wise, it went great. I had very little pain and while I am by no means better, I have seen a marked improvement vs prior to surgery.

Unfortunately, as so many of us are familiar with, because the surgeons were not acutely familiar with the vascular side of this issue, they did not shave enough of my styloid down. There’s still an occlusion at the very top of the left C1 / styloid process.

Long story short, I need another surgery. Because of the complexity and novelty of vascular ES there are no solid answers on what to do next.

If I have to get my C1 resected I would only do it through Dr P and the surgeon he works with, Dr Lo. However, he only does one side at a time and would require me to do another angiogram (more radiation). I know both my styloids are calcified and I want to remove both of them.

My other option is to do the next highest reward / lowest risk procedure, which is bilateral styloidectomy to the bone and hope that’s enough without the need and risk of resecting the C1 lateral mass.

I met @Msdstc (amazing dude) on reddit and have had lengthy discussions with him. We have very similar situations, albeit he has been suffering for so much longer and has had to go through many more Drs and surgeries.

Like him, I am pretty set on doing a double styloidectomy, and from everything I gathered, Dr Hackman seems to be one of the best to do this. I know he’s no Dr Hepworth and wont touch the C1, but I cannot afford to wait and see Dr H and if I am only going with the styloids for now, Dr Hackman seems like my best shot. I fully aware that the styloidectomy alone might not be enough, but I am rolling the dice here. Im hoping that the fact that I saw a marked improvement from removing even just a little of the styloid on the left side, suggests I will see the same by removing both styloids.

So there you have it. Please feel free to ask any questions and share any advice.

Thank you!

I will post images below of my scans. All of them are POST-OP for the left styloidectomy.

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Hi & welcome to the site!
It sounds like a tricky situation you’re in- good that you’ve seen some improvements after surgery, but obviously not as much as you’d have liked…As you say Dr Hepworth is excellent, especially with the vascular issues, but we’ve heard he’s had to close his books for now anyway…We do usually advise that it’s worth waiting for surgery if necessary in order to get it done right, as sometimes getting surgery done again can be tricky…Would Dr A who you’ve seen be able to remove the styloid process as close to the skull base as possible? With removing the styloid that far up & ballooning may well be enough, if he can, but just shortening the styloid a bit again & not up to C1 would be pointless. I do agree that it seems sensible to focus on the worst side for now & see how much that helps. I’m not sure but I don’t think that Dr Hackman does ballooning if needed? If he doesn’t, then you could find the IJV doesn’t open up enough after surgery to make much difference, quite a few members have needed that procedure doing.
Just a few thoughts, sorry I can’t give you a clear answer!

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Dr Arcot does not do surgery. We don’t expect the vein to fully open and stay open without a balloon angioplasty. That’s another reason why I am trying to hold off on having Dr P do another angiogram before my next surgery. For now I think removing my styloids is our best shot and I know Dr Hackman does it to the bone and correctly. Once that’s done we will see if I need to have the balloon angioplasty to open the veins.

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Right, sorry, I misunderstood…If you’re prepared to need the ballooning doing later that’s good…Dr Hackman has done lots of successful surgeries recently, as I’m sure you’ve read!
Who did the first styloidectomy? Such a shame they couldn’t have taken it a little higher…
Have you been prescribed any blood thinners to help with the clotting?

Dr Babak Givi (ENT) and Dr Rutledge (Neurosurgeon) from NYU did my first. Don’t get me wrong, they are great surgeons, very humble, very nice people and they did a great job for what they thought they needed to do. I take most of the blame for going to surgeons who are not familiar at all with vascular ES and expecting them to know what to do. They thought they removed enough and didn’t want to risk going higher if they didn’t think it was necessary, so I understand where they were coming from but that is why I need to do it right and Dr H seems like he knows what to do when it comes to fully removing the styloids.

Dr Arcot did mention to me that I could have my next surgery done at NYU by a Dr. Persky and then Dr Arcot will be in the room while it’s happening and be able to do the balloon while i’m on the table. It’s very intriguing, but I have not heard much about Dr. Persky doing full bilateral styloidectomies, so I fear it may be a similar case where he won’t do the full job. I also only want someone with tremendous experience shaving it down to the bone due to the risks of nerve damage up there.

And yes, I am on blood thinners.

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@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