My story with vascular eagles syndrome

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)

@IJVCompression - Actually, that is the video where he carves the channel & doesn’t remove the TP of C-1. You can see a routing tool being used to do that at about minute 3:30 & going forward in the video. The problem we’ve had w/ Dr. Lawton is he is very inconsistent w/ whom he’ll take on as a patient. We have members who’ve gone to see him who clearly had ES w/ IJV compression & he claimed either that they didn’t or that their situation wasn’t one he was willing to deal with. I know of only one member who was successful in being accepted for surgery by Dr. Lawton.

Your better choice would be Dr. Hepworth in Denver. Even though the wait is long, he will remove your styloid & decompress your IJV w/o bothering your C-1. From what I understand, he has a method where he moves the IJV slightly away from C-1 & tacks it in place there so it no longer suffers compression. Often just removing the styloid is enough to allow the IJV to open though so C-1 doesn’t need to be bothered with after all.

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Thanks for this useful info :slightly_smiling_face:

The video is a little confusing as he does refer to it as a “trough” but at 7.20 he shows an image which suggests the whole transverse process has been removed.

In any case, thanks for the response and information. Do you happen to have any resources for further details on Dr Hepworth’s procedure to tack the jugular away from C1? I’ve not heard of that before.

I’m actually based in the UK so am waiting and hoping that Dr Higgins will be seeing patients again soon, he’s been held up the last couple of years. I am also a US citizen so do have the option of travelling over there to see someone.

Dr Higgins thought probably my C1 is relatively involved but I’m wondering whether a styloidectomy alone would be worth a try, with the possibility of going back in to shave the C1 if necessary. Not sure if it’s possible to do two surgeries on the same site though?

Hi @IJVCompression,

Recently I’ve had surgery with Dr. Hepworth on my Styloid and IJVS. Now I’m recovering from the procedure and traveling. The IJVS is already feeling improved. He dissected strangulating scar tissue from my IJV and removed the styloid remnant and they did a ballon angioplasty.
I asked Dr. H also about STENTing and shaving down TP C1. He mentioned that he did that in the past but then figured out that this isn’t necessary in the major part of cases. For me this lesser invasive approach was much more appealing.

See also:

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Hmmmm… I see what you mean about the TP of C-1 being missing or substantially shaved down. Good eye!! I missed that completely. Perhaps in creating the channel for the IJV, he was also reducing the size of the TP. That would make sense. I agree w/ you though about that approach not being ideal as it leaves C-1 in an unbalanced state. Perhaps muscular support takes over when that piece of bone goes missing?

I wasn’t aware that Dr. Higgins has been MIA from his practice. I hope he gets back to practicing again soon for your sake & others!

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Interesting to hear what Dr Hepworth said about not needing to do c1 shave in majority of cases. In your imaging did you find that your c1 was compressing your IJV the most or was it clear that the styloid was the major source of compression?

As I’ve been thinking despite the fact that from my imaging it seems abundantly clear that my c1 is by far the main source of compression of my IJV, perhaps resecting the styloid and removing any scar tissue or any connective tissue strangulating the IJV, might be all I need to do…

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@jimjammer123 From my point of view the styloids and/or calcified ligaments are big interference factors messing the whole bodies tension patterns up. Leading to a lot of tension especially in head and neck area. Since surgery my shoulders are significantly sitting deeper. You can really see that. IMO that pathological tension pattern pulls the cervical spine into military neck and also might pull C1 forward. Once the styloids are removed, that are stretching inside the neck like masts on sailingboat, the tension pattern can normalize and maybe solves the compression from C1, too. Here I’m adding someone images from my right jugular situation before surgery. Haven’t done a post op imaging yet.

Images





Here is the left side before and after styloid removal in CA last year (still severely compressed). The two small bony pieces are titanium clips on an artery from that surgery:

Before


After




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Images can be deceiving. Unless dynamic angiogram is taken in different positions, there’s really no way to know for certain what’s causing the main compression.

There’s also the unknown of how much pressure is causing your symptoms. Most people have a certain level of compression and are completely fine. The question is what is your bodies threshold, and how much does the vein need to be opened to get below it.

Even if the compression is primarily from the c1, say 60/40 split, opening it up 40% may be enough for you.

There’s really no way to know and at a certain point it’s going to be up to you what you think gives you the best return on investment.

I was debating c1 shave and styloidectomy on my right side or bilateral styloidectomy without c1. From my images you can make the argument either way for what’s causing the primary compression. I opted for just bilateral styloidectomy and my vES has resolved since.

I haven’t done follow up imaging because my Drs said that if I’m feeling better it’s unnecessary.

My styloids were causing more issues than just vES, such as neck pain and nerve irritation. I still have nerve problems that I’m dealing / healing from but so far I am extremely happy with my decision to leave the c1 alone…for now.

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Good explanation/ theory, I do agree… :+1:

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You make good points @elijah. Thank you for sharing your thoughts. So glad your surgery has helped you in the vascular arena. Now for the nerves to heal!!

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@TheDude - I’m so glad you’re continuing to notice significant changes in your body since you had your revision surgeries. I hope you’ll be “good as new” as time passes!

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I agree that the imaging can definitely be deceiving. Mine showed that mine were growing semi down but straight yet when he went in, it was hooked up like a fishhook wrapped around my facial nerve when I had the right side done. It was nuts. seems like the only way we can truly know is when they go inside to do surgery. Who did your surgery and when did you get it done if you don’t mind me asking? I’m so glad your symptoms are better and you’re on your way to healing. I think the nerve pain for me got better after about four months! Well it was pretty good after two months but I think after four months I didn’t really feel much of anything anymore.

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