@Jules From what I learned, it’s not the collaterals, although I am sure they become engorged too, but rather, the epidural venous plexus system. This could also make sense as a contributing factor in spiky-leaky syndrome where spinal csf leaks and tarlov cysts are involved in an over-pressurized venous system.
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We’ve had a few members with tarlov cysts too, that’s been mentioned before…amazing how we’re all still learning! (although my memory isn’t great, so I can’t always remember what I’ve learnt!)
I have them all throughout my spine… like a Christmas tree, lol.
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@Ladymaestro1 - YIKES! I know you’ve mentioned this before but 
. Has Dr. Hepworth indicated the cysts might go away once your IJVs are flowing properly?
I have not asked him. It’s an interesting question, though. Dr. Schievink, spinal CSF leak Neurosurgeon at Cedars-Sinaiin LA told me that they are common in up to 20% of the population. (Google says up to 13%, most common in women, lol!) I don’t know how they apply in my overal case, unless they are an indicator of long-term vascular compression/pressure forcing an increase in CSF production/pressure.
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Really interesting discoveries since I’ve begun my research into this and found many people reporting symptoms of head pressure worse when upright. An article by a Surgeon even talking about how it’s common for it to worsen when upright as the veins usually open when flat and flatten when upright as a method to prevent too much blood flowing from your brain
Rationale and Proposed Methods for the Diagnosis and Treatment of Patients with Jugular Venous
Outflow Impairment.
Written 12/30/2022
Kyle M. Fargen, MD, MPH, FAANS, FACS
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@Benwt - Thank you for suggesting another article we can add to our Research Papers list, however, I couldn’t find a link for it. Can you please tell me where you found it?
We’ve had some discussions on here about what you just mentioned. The design of our bodies so interesting & complex. That they can still thrive in the midst of somewhat catastrophic health circumstance is a testimony of how well we’re put together!
If you’d like to do more reading about IJV compression causes, symptoms, surgeries, etc., here’s a link to our Research Papers list:
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I will see if theres a way to upload it there or if I can upload it somewhere else and share a link. It was shared in the Jugular Venous Outflow Disorders facebook page - where a lot of people seem to have similar symptoms to myself
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I did manage to get my DICOM images and convert them to 3D (Although didn’t do a great job, I can see the styloid processes its strange though because theres a big gap between where it starts then its empty then the styloid appears again on both sides. But assuming they are joining up in between they are pretty long buggers.
@Benwt - You did a fantastic job w/ your 3D conversion! Very nice & clear images.
What it looks like to me is that your styloids are pretty short but the left one in particular is very thick. The space would be where your stylohyoid ligaments are not calcified then further down, where you see what looks like more of the styloid, are calcified sections of stylohyoid ligament. It’s not impossible that the styloids & calcified ligaments are continuous and the center sections just aren’t showing up for some reason.
Now that I can see your cervical spine, it looks to me like it’s got a slight reverse curve vs the normal lordotic curve. As I mentioned before, that alone will bring your styloids into closer contact w/ vascular & nerve tissues in your neck. It’s possible to restore the lordotic curve w/ gentle cervical extension exercises but it can take quite a few months & great diligence to do that.
I’ve annotated a couple of images so you can see what I see:
The angle of the image of your right styloid/calcified s-h ligament makes it look like there’s very little space between your ligament calcification & the transverse process of C1 so that could explain your IJV compression symptoms.
Here are images of proper cervical lordotic curve & reversed curve:
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Your hyoid bone processes look pretty long too, do you have any symptoms from them, like clicking when you swallow, pain when swallowing?
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@Isaiah_40_31 I’m the one that posted it on the JVO group on FB. Is there a way for me to attach the file here? If not, I’ll send it to you for uploading.
@Benwt I just wanted to say thank you for bringing the ‘better flat’ head pressure/pain scenario to the forefront this week. I had a rough week with mine (being upright) and was really second guessing myself again. I’ve already been through all the invasive spinal leak testing (none found at this point).You helped return my hope in my upcoming second side styloidectomy and IJV decompression surgery (in August). Thank you!
Jugular_Vein_Stenosis_Rationale_Fargen_Handout.pdf (286.6 KB)
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Will it not upload? I’m rubbish with technology, so can’t offer any advice if it won’t 
@Ladymaestro1 - The link works! Thank you for posting it. Looks like interesting reading. I’ll let @Jules add it to the Research Papers area since I’m inept at that. 
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Yeah I do occasionally get that although not my major symptoms
Yeah I as advised they are likely calcified the whole way it’s just not presenting that way. I measured my right styloid and it was 4.7cm. Waiting for my surgeon to come back but he said surgery is likely going to be on the right side as this is my dominant side and still had 30% blood flow through it, removal of styloid, shaving of C1 transverse process. In my recent notes he also mentions the digastric muscle is involved in the compression. I can upload X-rays of my neck curvature to give you a better view of it but I know there’s loss of lordosis but hadn’t had reverse mentioned to me. Surprisingly my scans from when this first started showed a relatively ok curve which was got worse in recent scans, I’m assuming due to the difficulty with having my head up is linking into this as I usually have my head in an awkward position.
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That’s interesting that it sounds as if the neck pain & IJV compression have contributed to your lordosis rather than the lordosis affecting VES…
Sounds like a plan to get your dominant JV side operated on first. We’ve had a few members who have had the digastric muscle resected to resolve compression too.
Thanks to you for mentioning the research paper, & @Ladymaestro1 for posting it, I’ve put it in the Research papers category.
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@Benwt - There is a doctor in the US who routinely removes the posterior digastric muscle during styloidectomies where IJV compression is involved. He feels it gives a better long term outcome with the decompression. It sounds like you may have something similar done during your surgery.
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Good evening- not sure what is so good about it if I’m honest- I am now on Mr Shenouda’s urgent list for posterior fusion of c1/2 with bone grafts and metalwork. The pain is brutal now, I have no choice!
I paid to see a gp privately and she thought u have EDS so now will see a rheumatologist prior to surgery to this to be confirmed or discounted.
ES is on the back burner for now and in wonder where the styloid sits in this type of surgery? Is it seen? Moved? Trimmed? Worked around? Have any members had posterior fusion? My right styloid is the longer, straighter one. The left is angled inward more.
I still don’t understand how such severe damage at c1/2 could be missed on ct and mri? How the styloids were missed/ignored? How this radiologist insisted he could “see no reason for this woman’s symptoms “. I’m angry and also wonder if the original ct for ? # c2 was missed, leading to 4 yrs of increasing pain and other terrible symptoms.
I need to get someone to rule out a csf leak, I have many signs of this, maybe it’s just the whole head now inflamed?
Xx🙏
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Oh @Mcwelly! I’m so sorry for the way your health journey is going. I’m glad you’ve finally had the need for C1/2 fusion addressed. We have members who have had that done, but it was usually after styloidectomies, & it was helpful in reducing symptoms remaining after the styloids were dealt with.
I’m a little afraid for you that the fusion surgery could put your styloids into closer contact w/ nerves & vascular tissues in your neck because it will cause your cervical spine to straighten out some. I wonder if Mr. Shenouda could do the styloidectomy while he’s in there doing the fusion since fusions are done through the front of the neck, too. It seems like it should be possible then you’d be done w/ both troubling problems. Once the pressure gets off of your IJVs, your potential CSF leak could heal up on its own.
I am very frustrated for you for all you’ve been through & the seeming medical malpractice that has gone on in your case. It’s just unbelievable. You have been so strong to persevere through it all & to continue to seek answers & help. You’re a great example of being a self-advocate even though it’s been grueling.
I’ll pray for the best possible outcome from your fusion surgery. Please let us know when you have a date. 
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