That’s a misunderstanding, I think. Removing the styloid to improve problematic jugular function would IMPROVE autonomic functioning.
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@Violin I hear you. I think it is good idea to proceed with Styloidectomy with Cognetti. He has perfected the procedure over the years and does minimally invasive styloidectomy which heals quickly.
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Yes, in fact I’m closer to Hepworth and having surgery in Denver this month. You saw Cognetti, I remember, and then would see an interventional radiologist in Canada if needed? I’ve searched for any recent posts by you but haven’t found any. How are you?
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Yeah…I have been busy lately but in short, my symptoms have not changed. I am currently looking into C1 shaving as it appears to be doing compression of my left IJV.
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Hey there,
Following all the interesting dialogue. I seem to remember you have had styloid surgery and if so I"m so sorry that you now have a potential issue with C1. Was C1 not seen as a problem prior?
Many thanks,
Leah
Very sorry to learn your symptoms have not improved yet. You have done soo much research and helped many on this forum. I’m told it’s a process, and I should not expect too much (but of course I can’t help hoping). Did you have the venoplasty yet? If you’re busy, that’s OK, no need to reply. Just know that you have friends here cheering you on.
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I hope you’re able to find someone in your country to do that for you, @KoolDude. If not, I expect you’ve seen the recent discussions about Drs. Lo in NYC who does C-1 shaving. He might be a resource for you if all else fails.
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@Leah It is always hard to discern which one (Styloid vs C1) is doing most of the compression. In most cases, it is just trail and error thing. Since Styloid removal is less riskier and easy to do, most of the doctors do that. Then if no improvement and further testing indicates C1 is the main culprit, then C1 shaving is done. Endovascular procedures (Ballooning or stenting) have little chance of working if C1 compression is the main culprit and can only be entertained once the C1 is shaved. I will try to post a detailed article on this when I have cycles to do it.
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@Violin Thanks for thinking of me. I agree with you, it is a process. I find out something new about Jugular compression and its myriad symptoms everyday. I hope to contribute my findings more in here so that people can benefit from but lately been busy with kids and work and babysitting IJVS 
I wish you luck with the upcoming surgery. Hepworth is capable doctor and I hope things go smoothly for you.
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@kooldude Thank you so much. Makes sense… oh and I think I had a release of compression in my scalenes last night. New to all this and learning, but remembered your paper or discussion on the backup if scalenes are compressing. Well I moved in an odd way last night and felt the pressure go … and this morning the scalenes (on my left where my sty is) were softer. Haven’t had upright pressure all day. Still get some when laying down but 1000% better!
And ironically, was scheduled to have trigger point injections in the scalenes this week to be followed with botox down the line… but DR went out on a medical emergency … SO I got my release anyway )). While I, like most have suffered for years, I am completely fascinated by all of this. So thank you for your efforts in helping us understand. ))
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This is the case with me, the findings of my CT with contrast shows I have mild jugular compression. Because of this the surgeon isn’t going to take me on as a patient. My question is how they can come to this conclusion when it was a supine without movement? When I turn my head I feel like I could black out, when I correct my position I feel dizzy lightheaded and still moving them finally stops. Like the blood is flowing again. I have so many symptoms including drastic blood pressure fluctuations, I stop breathing and have to tell myself to breath among a long list of others.
@lilwider the symptoms you are having when you turn your head are similar to intermittent Carotid Artery/Vagus nerve irritation or compression symptoms. In my opinion, Jugular compression should be the last of your worry. So you need to investigate if either of the Styloid and/or Hyoid bone is near the Carotid or Carotid sinus/body at bifurcation (Separation of the Carotid artery into External and Internal Carotid Artery)
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Where are you based?
@lilwider - Based on what @KoolDude noted, it’s pretty urgent that you see someone who can help you sooner than later. Have you consulted w/ Dr. Costantino? He does vascular ES surgery. We’ve heard more about him doing IJV decompression, but I’m pretty confident he would also do ICA decompression. Dr. Lo would also be a good option for an opinion. Please try contacting one or the other tomorrow to get an appt. ASAP.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
Dr. Larry Lo, 850 Northern Bl, Floor 1, Great Neck, NY, (516) 773-7737, https://www.northwell.edu/find-care/find-a-doctor/neurosurgery/dr-sheng-fu-larry-lo-md-11511781
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Yes I have seen Dr Lo and he thinks my ijv isn’t compressed enough on what Dr patsilades says. I am in contact with Dr Constantino but he is out of network so I’m trying to get an exemption. He was my first choice but since Dr Lo worked with him and see Lo took my insurance I got in with him first. I’m trying to keep positive and keeping my fingers crossed I can get covered for Dr Constantino.
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I was deflating to hear that they weren’t concerned or though things weren’t bad. I do understand they have their specialties and ways of testing. But I know I don’t feel right especially turning my head, laying down. Just like everyone here, looking for answers and help. It’s all confusing when supine radiology comes back nothing is wrong when other upright reports mentions CSF CCI c1c2 issues. Very frustrated. I just want my life back.
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Long Island
I’m surprised that Dr. Lo wouldn’t more carefully consider the information gained from the upright scans. Did he discuss possible ICA compression at all. It seems we focus so much on IJV symptoms & issues that sometimes the ICA is also to blame or is where the real problem is. It sounds like he may not be as well informed about CCI/CSF leak problems.
I’m sorry to ask you to repeat this again, but were you able to get an appt. w/ Dr. Hepworth (I recall he takes your insurance) or are you on the waitlist for when he’s seeing new patients again? I think, based on your symptoms, he would be your best bet at this point since he recognizes CCI/C-1/C-2 issues & does CSF leak patching, etc.
I did question him about the upright MRI and he said he didn’t see any evidence leading to CCI of reduced CSF or Tonsillar ectopia. I even tried to make myself heard about turning my head and feeling like I could black out if I stayed in that position to long. When he repeated that he replies on Dr Patsilades opinion, that’s is when I told him that I had inquired to Dr Constantino also, and he suggested that it would be a very good idea to try and get in to see him. I have not yet tried to get in with Dr Hepworth. I am trying to stay somewhat local if I can. Lol I’ve never been in a plane before. I am not sure how I’d do especially on top of the ES -trying out my first plane ride, that’s a little scary for me too.
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