@Rlr286 - YES!! I have imaging that shows bilateral IJV compression w/ the R looking worse than the L, however, it appears the R compression is caused by soft tissue whereas the L is styloid/C1. The results from my angio/venogram indicated that the L side is worse & that gave Dr. Hepworth the info he needed to recommend surgery for me. No date for me in his surgical schedule yet as I’m doing the same battle as everyone else trying to get someone to answer the phone or call me back. 
I’ve had this situation for 9 yrs & my symptoms aren’t nearly as bad as they are for most of our members w/ IJV compression so I’m pushing for a surgery date in a more relaxed way. 
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Sorry for the delayed reply but to answer your question about PT, I get 30 minutes with her and then 15 minutes ice/heat at the end 
And the reason most insurances will state is their reason for not covering is that there is no FDA approved treatment for TMJ, which is true because historically TMJ dysfunction is very under-researched (due to the fact majority of ppl affected are women… eye roll). It’s so common though, it’s terrible and makes many people w/ TMJD suffer more than they already are. Hopefully things will change soon
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oh wow! i’m glad the additional imagining was so helpful. had you already gotten a styloidectomy on one side with a different surgeon or am i misremembering? haha.
also i’m curious what your original imaging was showed your other side was worse
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I had my styloidectomies in 2014/15 & was diagnosed w/ bilateral IJV compression in 2022. I’ll send my images to you in a PM. Interestingly, my CTA showed the L IJV & my MRV showed the right one.
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@Isaiah_40_31 What seems to be compressing your IJVs now that the styloids are gone?
@Chrickychricky - My left styloid was not cut back as short as my right one & is still lying across my left IJV & squashing it against my C1 vertebra which I think scooted a little to the left when I had a cycling accident in 2015 & went over the handle bars & landed on the side of my face. It was after that accident that my vascular symptoms started. I had my second styloidectomy after that accident but it was done by a surgeon who doesn’t address vascular outflow obstruction.
My right styloid was cut much shorter so isn’t bothering my IJV but it’s compressed, too, presumably by soft tissues. Dr. Hepworth said he was willing to do exploratory surgery to fix the right, after he fixes my left IJV. I’m not thrilled about the thought of exploratory surgery going on in that part of my neck so will see what symptoms remain once the left IJV is liberated.
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Ugh @Isaiah_40_31 , I’m so sorry you are having to have more surgery. Do you have a date yet? As far as the right sided compression goes, if it is soft tissue, you might want to consider dry needling. There is a guy in San Francisco, Jonah Hershowitz. I didn’t see him but I have heard great things. And a woman in Berkeley, Jamie Hampton, who I did work with and she is great. She has great expertise working in the neck. She obviously could not fix the fact that my styloid and C1 are pinching my IJV but I got a lot of tissue release which really helped with some symptoms. Might be worth a try prior to exploratory surgery. But hopefully opening up the left will be just what you need.
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just wanting to throw it out there that i found accupuncture helped me more than dry needling. accupuncture leaves the needles in for much longer (45 mins or so), compared to 5 mins for dry needling. i found dry needling gave me headaches, while accupuncture didn’t. both of the providers were very experienced. i think it came down to my body being able to fully relax much more with accupuncture but im sure its different for everyone.
also does muscle count as soft tissue? what other things are considered soft tissue that you think dry needling helped with?
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It releases tight fascia
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Thank you for the names, @Chrickychricky. I have bookmarked them. Dealing w/ the right side is a ways off so no rush at the moment since the left is bad enough I can’t tell if the right is a problem or not. I’ve also gotten a referral to Dr. Waung (thx for her name!) at UCSF but am trying to decide if I should wait to see her until after my IJV decompression if symptoms persist. My surgery w/ Dr. Hep is scheduled on 10/30.
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I’ve had both dry needling & acupuncture but for shoulder issues & none related to my neck. In California, chiropractors are not allowed to do dry needling but apparently medical doctors can. @Rlr286 - I didn’t think about the fact that dry needling is a quicker process than acupuncture so thank you for that differentiation. Honestly, I think dry needling (I was out of state) helped my shoulders more, but it took about 24 hrs of post pain before the pain just disappeared. Initially, I questioned my sanity for trying dry needling but the end results seemed pretty miraculous.
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One of my friends is a physical therapist and the other day, I was talking to him about dry needling vs accupuncture and why one might work better than the other. He basically said it just comes down to individual preference, and “We know that when you believe something is going to help you, it’s more likely to actually help you.”
I think about the placebo effect often. People like to dismiss treatment modalities that stray outside of western medicine (which one could argue acupuncture does) and say it’s not actually effective, it’s just in your head, not enough research that validates efficacy, etc. etc. And my philosophy has always been - well, the placebo effect is still an effect! I’ll happily take what I can get 
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I AGREE!! My husband is constantly telling me things help me because of the placebo effect. I do believe that’s true sometimes but not always. 
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It’s an interesting one- we used homeopathic remedies for our boys when they were small, & they did work. My eldest is very sceptical about it and often says it was the placebo effect, but I tell him that at 2 years old especially I don’t think the placebo effect would have been an explanation for how his high temperature could’ve been lowered, he just can’t believe in it
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