Newbie... This seems to be me as well. Would love input on my x-rays

[Leah]

@GCD once again, I can’t begin to express how helpful you have been. Regarding my twins, they are 26 and living the life in Nash Vegas! As everyone says it goes extremely fast, but I loved all the ages, especially the young ones, And looks like soon you’ll be on the other side of surgery and on the road to recovery and be able to enjoy your life and children to the fullest.

Thank you for the information regarding alternative drains… Did not know and it’s quite helpful. We do not know why I was passing out, my internist suggested it was a vasovagal response to the pain… But with more I’m learning perhaps it was a compression of the vagus nerve that took me out and woke me back up. I have very specifically not put my head in that position since, so at least I am trying to protect the nerves from all this irritation.

So another little interesting piece, which I am only thinking might’ve been the catalyst for this acute reaction I’ve had, is that we were going out of town to a function and I was in a lot of pain so I used my tens unit for too long and too high. I had not used it in several years but have used it with this intensity in the past without a problem. Trying to connect dots, because I have no other reason why this happened… But is plausible to me that I irritated quite a few things with the tens unit, it was not on my neck, but it was on my shoulders. (Saw one post where someone mentioned they couldn’t handle vibrations. And that made total sense is if my everything was inflamed, and the styloid was in there, just bumping around like a pinball machine, it’s set off a reaction all over the place). And of course, this is my speculation, because no one else has any better understanding, as we have all seem to find out.

I knew the next morning that my muscles were unhappy, (the top at C1 and one is at the bottom C7). I layed down for a nap, my trapezius muscle went into a ridiculous spasm, which pulled my left shoulder up towards my left C1, and then I blacked out. The same thing happened a week later in the same position.

So while I’ve been chasing this (one sided) cervical pain for years (with no one understanding why I have no issues on my right side), this put me into a whole other level, and I’ve been in a very acute phase since that event six weeks ago.

I have been aware of my C1 and its proximity to the arteries and always concerned about compression… But never heard of a styloid until a week plus ago. Want to friend who’s an oral surgeon for Botox in my TMJ and temporalis muscle, and he did that panoramic x-ray that you were mentioning, which is where this was identified.

More than you ever wanted to know…. quite interesting that everyone has had to figure this out for the most part by themselves.

[Isaiah_40_31]

@Leah - I’ve been on this forum for almost 9 years & have to say I continue to learn new things. I had an AHA moment when I read your response above to @GCD. I’ve mentioned that one week prior to my second ES surgery I had a cycling accident. How it happened is a complete mystery to me. The only thing I can guess is that I blacked out while going down a hill & crashed near the bottom. I was in max ES symptoms mode that day, & the right kind of exercise helped me push my symptoms out of my mind w/o exacerbating them further. I have speculated that the position my head was in while cycling cut off circulation to my brain (via styloid) & that’s why I may have blacked out. However, after reading your comments in several posts about your passing out being possibly related to pain/vasovagal response, I’m wondering if that’s what caused my problem. It makes more sense than a vascular issue since I really didn’t have vascular symptoms. I did have plenty of nerves that were irritated & crazy side effects from those.

[Leah]

Ahhh very interesting. Sounds painful. So sorry! My dear internist was adamant that it was a vasovagal reaction to the pain, as I said, but as I’ve learned more about it, and even told him the other day, I’m thinking more likely (?) my vagus nerve was infringed upon by my “stalactite”! Well that certainly seems plausible for your black out.

[Jules]

Thanks for the info about the doctors, glad that they can help you, and hope that your surgery goes well in May!

[GCD]

Thanks for the encouragement Jules . I just wanted to share my findings with others online to save time and resources. My case is specific to IJV compression, I don’t have particularly long styloids. Just long enough and pointed in the direction to cut off blood supply at the level of C1.

My hope is to report back on a weekly basis to track my symptoms post surgery. I feel like there are many unaware IIH patients looking for an answer online. IJV stenosis and ES should be and the top of the list and its fairly simple to look for with the right imaging.

Below is a CBCT of my left C1 and styloid shows less than 2mm spacing and a 20mm long styloid. I took this scan in 2021.

I took this CBCT on an older machine in 2009, hence the quality. I was looking for a reason to explain my head pressure, I just didn’t know what to look for. It’s always been there.

[Leah]

So having a little trouble with the orientation of these pictures. I’m assuming the perspective is straight on looking at your head from the left straight on looking C1 and the styloid. Of course what we’re not seeing is the veins, and what I think you’re saying as well is that your vein is getting compressed between these two structures. Are you having problems when you turn your head or is it constant or both?

And I think you’ll be doing a world of service by documenting your process. Thank you so much.

[Leah]

@GCD Found these on CBCT thanks to you!

Right side … no issues on right… looks like a normal sized styloid and as Isaiah said, maybe a calcified ligament

[Isaiah_40_31]

@GCD - Agreed that your styloid isn’t excessively long but it is very thick which can also play a role in the compression department.

@Leah - I believe GCD’s images are looking at him from the side i.e. the styloid exits the skull behind the ear so it’s as if you’re looking at the left side of his face in the area just behind his left earlobe. The top image is a view from a bit more behind the ear whereas the second image is more straight on from the side. I hope that makes sense. And yes, the IJV gets compressed between the styloid & the transverse process of C-1.

[Jules]

That is a tiny gap! As @Isaiah_40_31 says, a very thick styloid…

[Leah]

My gap seems to be about 5 mm. Do you know what constitutes enough of a gap? TIA

[Isaiah_40_31]

@Leah,

I’m not sure if there is an exact number that constitutes “enough of a gap” since that number will be reliant on the angle of the styloid & its thickness which varies w/ every individual. I found a link to a paper which is co-authored by Dr. Cognetti (it may be among those in the list of research papers on this forum, but I didn’t check for it) in which 5 people w/ IJV compression were diagnosed w/ ES. The space between styloid & IJV ranged from .05 cm & .46 cm. So even someone w/ what seems to have a decent amount of space can still end of w/ vascular compression depending on the features of the styloid & possibly if there is some hypermobility of the cervical spine at C-0 - C-2.

Styloid/C1 transverse process juxtaposition as a cause of Eagle's syndrome - PubMed. (Abstract only)

[Leah]

Yes, that makes sense. Thank you, will read on it )).

[Leah]

I’m at 4mm and a smidge best I can tell. Your numbers are helpful.

[Isaiah_40_31]

Though the space looks big in your image, you know it’s really a tight little space inside your neck.

[Jules]

That will vary too with head positions…

[Thans]

Hi Greg,
Any way we can private message? I’m going for a consult with dr lo, and I’d like to hear about the surgery. I’d also like to find out some info on dr Constantino if you don’t mind. TYSM.

[Rather_b_hiking]

Hi leah, I know this post was a while back - but wanted to throw in something that you can see in a regular MRI that are a bit more subtle and usually aren’t caught by your average radiologist.
A T-2 MRI will highlight fat and water, so the bones are black and what you are seeing is soft tissue. Blood, being primarily water, will be bright. HOWEVER, if the blood is flowing (such as in your jugular or carotid), there will not be a signal - this is called a flow void (flow void is good…it means your blood is flowing correctly.) If the flow is sluggish or slow, you will see some sort of signal on the MRI - this is called “lack of flow void”. This means something is constricting your blood vessels and the flow is sluggish. It’s the first thing I noticed on my MRIs, well before I had any contrast or CT. (At the time they thought I had MS because of all of the neuro symptoms I was having).

The pictures below were of the first MRI i had (non-contrast). The first one is an axial view at the jugular bulb level. The arrow points at the right jugular, where there is basically a black hole. The circle shows the left jugular, which has a very obvious signal.

The second is a coronal image (think looking at the back of my head), the arrow is where the right jugular is, obviously dark, but the jugular on the left is clearly visible. (I’ve outlined it).

This is something that every radiologist should be looking for, as it is a known phenomenon and indicates vascular “reflux” and that something is amiss… I had at least 3 MRIs and 3 CT scans and not a single radiologist caught anything, this is well before I knew what a styloid even was. Looking back it seems so obvious - I wish I had known what I was seeing at the time. I just knew it looked weird and asymmetric.

[Rather_b_hiking]

@Isaiah_40_31
I know this post was awhile ago - but I am currently waiting on my surgery with Dr. Hep (in Dec) and just had an appointment with him last week. He said he might shave the C1 if necessary - so I don’t know if he’s changed his approach and if a neurosurgeon will be with him (I’ve got a list of more questions for him…I intend to add that one to the list). I have some pretty bad neck problems with my ehlers-danlos, and he might be concerned about the C1 being more of a problem.

Just out of curiosity, what is your take on the C-1 shaving?

[Isaiah_40_31]

I’m really glad you’ve gotten on Dr. Hep’s surgery schedule, @Rather_b_hiking! It’s been a bit of a long haul for you!

Thank you for sharing the really interesting information about flow void vs flow signal. That sure does simplify things for those of us who aren’t very adept at understanding what all we’re seeing in a CT image.

As far as C-1 goes, I think it’s a mixed bag. We’ve had some members who had a styloidectomy & C-1 shave who claim it created or worsened CCI for them yet the surgeons who do the shaving say it won’t contribute to that. We also have members who’ve had C-1 shaved w/o any cervical instability problems afterward.

My initial thoughts about C-1 shaving were that it’s like “playing w/ fire” since the spine in general, & cervical spine more specifically, are pretty finely balanced, & removing even a little bit off the side of an upper cervical vertebra could throw that balance off. However, someone kindly pointed out that our spines aren’t “free floating” in our bodies. They’re held together by muscles, tendons & ligaments so removal of a miniscule amount of a transverse process shouldn’t cause an imbalance problem. The styloid process itself isn’t a support structure for the neck, but one could argue if the styloids &/or calcified styloidhyoid ligaments are very long, the cervical vertebra could have “learned” to use them for some stability thus their removal along w/ a C-1 shave might create cervical instability or further cervical instability for someone who is already compromised such as you are w/ EDS, or for someone w/ undiagnosed CCI/AAI.

Dr. Hepworth has done many, many vascular decompression surgeries, & I believe, has only recently been mentioned as doing (or having an associate do) C-1 shaving. What he’s done most often is shorten the styloid & move the IJV away from C-1 if it was the more dominant compression agent. Some of our members have had initial success w/ that approach, but it hasn’t produced a long term “cure” as they have had their IJV(s) become recompressed by C-1 later. We also have members for whom this approach has provided ideal long-term results. There is no perfect approach that works for every patient which creates a huge challenge for a good surgeon. I expect Dr. Hepworth must decide on a case by case basis which approach makes the most sense for a given patient based on his past experience & their health history.

I know Dr. Hepworth is well versed w/ EDS, but it would be good for you to address the possibility of further cervical spine destabilization as a result of a C-1 shave. I am not a doctor so can only express my concerns about the benefit vs detriment risk. As a well practice surgeon, I believe Dr. Hepworth’s opinion is trustworthy & should be the thing you rely on.

[Leah]

Thank you for that education and information. My venous system was looked at by a Vascular Neurologist and showed my right side wide open and left side congenitally small.

So is the jugular bulb right where it comes out of the skull? And is yours not flowing due to the styloid or/and or C1?

Dr. Costantino is currently working though my scans. They have indicated something is amiss but last scan CTA/CTV wasn’t read as he requested so that is going around for a second time.