Thanks @Isaiah_40_31. I think VDM has a lot of valid questions which I even ask myself all the time. No treatment option for IJVS is risk free but one can only decide based on best judgement.
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Hi @vdm ! Iāve been reading and searching through the Eagle Syndrome Group on Facebook, but unfortunately, I havenāt been able to find the information about the negative effects of C1 resections that you mentioned. Iām genuinely interested in learning about the potential risks associated with this procedure. Is there any chance that you could link or share any of this information that youāve found?
Is this from patient reports that youāve read on the groups as well? I would be very interested if you have links or could share any relevant information that you have on this.
Thanks a bunch!
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Iāll send you a pm @Buzz
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@Buzz if you find something interesting in that pile of mess which is really hard to rake through, please share it with us too! 
Just the findings, not the names or posts!
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Absolutely I will!
Thanks again for sharing those links with me.
For everyone else who hasnāt delved into the Facebook groups in detail - my advice is to stick with it!
I had tried visiting a few times before, but hadnāt found a lot of useful information.
Because I wasnāt familiar with how facebook works, I had missed a lot of stuff. But once I realised that you have to click many times to fully expand all the comment threads (I even found a bookmarklet that does it for you), and have to make liberal use of the search function to find useful information, I realised just how much useful information is buried in those groups.
There is a lot of stories about patient experiences and doctors that might prove to be invaluable.
I can tell that I have a huge amount of reading to do now before I proceed with the surgery.
Thanks again!
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Did see this butskiy, just info for others. He said heād do the surgery and has done it on others. Typically only people who feel sharp pain when he presses on their styloid find relief from surgery. Does external , looking at 3.5āā scar (i roughly eyeballed from dr hand gesture) with likely permanent numbness around scar. Takes boney structure out completely all way to skull and scraps away from where attaches in throat. Wait time for surgery is closer to 2 years.
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@will, which doctor did you see? I presume it was in Canada since there are no 2 yr wait times in the US that I know of.
Are you on his surgery wait list or do you plan to try seeing Dr. Cognetti or someone else in the US?
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3.5 inch incision? What type, pure neck, or including in front of the ear, or behind the ear? Because 3.5 inch is HUGE. Incision means not only the skin, but also underlying musculature (platysma muscle etc). Large incisions may cause various problems later, like large deep scars (at muscle level, not only skin scars).
Also, the larger incision, the more risk to accidentally damage accessory nerve IMHO
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I was just surfing through @KoolDudeās posts as I read re upcoming C1ā¦ and saw this post.
In addition to Vascular Eagles (or IJVS) I also have nTOS. Aparrently there is a connection in patient population that have those two things to a few other compression issues, including Nutcrackerā¦ I donāt have an article on it, but itās something that Dr Hepworth shared with me when I talked about my left flank pain and some abdomen stuff in my very first appointment with him. So at the very least, surgeons that are seeing patients are seeing a connectionā¦
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Oh wow!!! Iām just trying to catch up on your story and seeing the CTV pic that you posted, showing he digastric muscle that your jugular is being smashed into (thank you C1) is so clearly showing why styloidectomy may not be enough when C1 is also involved. I am so sorry that your journey is so long and that your symptoms all persisted. ps. Me. In answer to your question posed when you joined in 2021, I too have hearing loss (permanent SSNHL - surprise surprise - Left ear :-)). I wonāt reply on your post from earlier today so that you donāt have to read so many messages from me today, but I want to say Iām really glad for you that youāve figured out a surgeon that you trust to do the C1 shave. That will be quite the trip for you. I hope youāve got lots of points and can upgrade yourself for the trip homeā¦
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@akc You might want to watch todayās Conor Harrisās episode on ribcage compression.
To me, it makes a lot of sense that both anterior and posterior ribcage compression may contribute to TOS and in general various vascular compressions:
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@vdm Thank you SO much for sharing this! There is an Australian physio that I often youtube that has really good clips as well and with a bit focus on the feet being so crucial. So from him Iāve been working on feet for the last year or so, but the way that it is explained in this video is really really good and actually showed me I wasnāt doing it right (ādonāt let your toes curlā)ā¦ I will start practicing all of these. I do indeed have more compression and while I have had a strong focus on stretch and relax since I got so bad I had to stop working, my spine is still a rod with its muscles guarding. So again, thank you so very much.
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Butskyi is in Burnaby, BC. I havenāt heard much of him, but one lady on FB mentioned he said he would do her surgery under LOCAL anesthesia. I honestly hope it was just a misunderstanding or a genuine mistake in words made by the surgeon. According to some other patient, he told he would do the job all the way up to the skull-base.
So is mine, though I dare to say over the last two years I made quite a progress. I am more flexible than in the last four years, but still far from what Iād consider sufficiently flexible. Also, it feels that if I donāt do stretches every single day, the spine starts stiffening rather quickly again. Perhaps, as some physiotherapists say, itās a life-long condition as the body isnāt āgrowingā anymore like decades ago.
Yes!!! Iāve been at the stretching since early 2020. morning and evening and as needed (often for my spine) throughout the day. It seems that Iāll get all nice and limber (for me!!!) and then 30 minutes later itās back to what it was. Butā¦ I could barely get my hands past my knees when hinging forward and had almost no āhingabilityā A Dr told me I had the flexibility he expects to see in an 80-something year oldā¦ and I was 50 
. Now though I can hinge really easily and touch the floor after a minute of easing into it. But it all comes from the pelvis; my back, even if I try to then relax it and let it āhangā remains quite straight through the bottom 2/3rdsā¦ Yes, a lifelong endeavor to remain as mobile as possibleā¦
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About the lower back stiffness and impact on rotator cuffsā¦
That āprotract your shoulders without dropping your sternum too muchā is one of the things I was unable to do with my left scapula for years too, though slowly getting back to shape.
What helped me a bit was hanging from a pull-up bar. Just hanging, with everything relaxed. Itās been challenging by itself as I have significant labral tear and various rotator cuff impingements at least in one shoulder, so muscles always try to engage and prevent me from doing it, but with a support under the feet I can choose just the right height to give the brain fake sense of safety and security.
Upd: it seems the video has been removed since I posted it here. What it was about, was the PT sitting in the chair, slightly leaning with elbows on the table, and moving his scapulae forward (āprotractionā).
Upd: Conor Harris just re-uploaded slightly modified video, so I updated the link
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Oh wow - that is funny. Hanging from a bar has been one of my absolute favorite things to doā¦ Until that is my Thoracic outlet syndrome got so bad that anything where I had to use forearms/hands (pecs, traps - though negligible here) created pain and (worse) worsened my condition. Iām not as severe right now that I canāt do it at all though and whenever I walk in the park Iāll stop by the pullup bars and just hang for a little while. I also use them to hold onto, keep my feet stable on the ground and then lean my hips as far as I can in one direction. Itās a wonderful āflankā stretch.
Unfortunately the video has been removed and when I searched in youtube on the title it did not pop up (at least not in the first page). Any chance you can try again and/or give me the name of who posted it so that I can search a little better?
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It was Conor Harrisās video, a short one where he sat on the chair, with elbows on the table, protruding the scapulae forward. I will try to find something similar on YT to that video.
Something similar to
And
Just while sitting and using elbows on the desk instead of the rubbed band to cause the resistance.
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Thank you so much for this. Funny. The serratus is a muscle that I exercise every day per my PT but in a complete tiny little baby version.
Upright Health is one of my absolute favorite youtube channels for exercises. So clear and explained in such great detail so that youāre able to do the exercises correctly knowing what to focus on and what to watch out forā¦
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The video has been re-uploaded with slight modifications
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