Imaging on Dicom. Would love any thoughts

[akc]

Hi all, I have been looking at my imaging on Radiant and finally got it all loaded to Dicom. I have been seen by Dr Hepworth and he sees bilateral compression at C1 and styloid along with stenosed Right Transverse sinus. The radiology report reads though that there is also compression at T1ish on the Right side and someone very helpfully called out that it looks like the carotid sheath might be too small? and compression of carotid at C2?
If anyone would like/be willing to have a look at my imaging I would be greatly appreciative. I have a virtual apt with Dr H this week (on the 19th) and want to ask him any questions that might help. I want to be sure that we know of every possible issue before making a final decision on what to tacle first if that makes sense… (for example, someone said that the bulging disc in my neck looks like it might be impacting the spinal cord…?)
So here we are:

My CTA/V: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2023091405417618.397024556928338295155

And MRIs (there are a few all done in a very short period as my neuro asked for additional imaging):

Brain and Cervical: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2023091323941923.986719746311488772051

Head and Skull base: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.202309132001868.4625217053213954095821

Specific to look at Jugulars: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2023091318421350.442605827735541973519

Thank you so much for any thoughts! We will be driving the next couple of days with large pockets of no connectivity at all, but I will check in whenever I can

[elijah]

There are others that can delve much better than me into this but something I noticed is that your deep cervical veins are extremely pronounced on your CTV. Likely due to your stenosis at C1. Was this done supine or were you standing?

[akc]

Thank you very much for looking and for saying that. If it’s the same thing, I did forget to add that the radiologist mentioned large condylar and suboccipital veins. Do you think that that’s what they are?

The imaging was all taken supine.

[akc]

Wow… Is that large almost horse shoe thing your arrow is pointing to in the second photo a vein???

[elijah]

Yes, that is a vein. Usually those are more pronounced when you’re standing as the jugulars naturally collapse, but yours are very large supine. I’m sure others can chime in on their thoughts but it’s something that stood out to me.

[akc]

Wow! I don’t know how they should look but am guessing not like that. And then to your point, they would get larger upright… They may indeed be contributing to back of neck pain and dizziness…

[akc]

[akc]

I wanted to add a few snaggit pics from the 3D created in Radiant in case that helps anyone… Again, there is clear L side dominance (with stenosis coming from the transverse sinus on the R) but with significant pinching between styloid and C1. There is also compression lower in the R jugular that the radiologist called out but I have no idea what structures or muscles are there that could be causing it… I think I can see it where the vein slims down in the green circled area…

[Isaiah_40_31]

@akc,

I can definitely see the C-1/styloid compression on the left IJV, but I don’t see compression in the green circled area you referred to on the right IJV. Sometimes the compression lower down can be caused by the internal carotid artery, muscle or scar tissue.

I’m sorry not to be more helpful. I wish I was better at reading these scans.

[akc]

You have been extremely helpful, Isaiah and I thank you ao much. You’ve pointed out things and guessed at causes where I am clueless (despite hours and hours on google trying to see and understand what “normal” looks like to compare).
So from the bottom of my heart, I thank you.

[Isaiah_40_31]

Thank you, you’re very sweet, @akc! I aspire to @KoolDude’s level of understanding but have a long way to go to even get close!!

[akc]

I will cross my fingers that @KoolDude notices this post and has the brain-body bandwidth to have a peak too then

[KoolDude]

@akc Sorry I was super busy lately with school open and my kids being small still means tons of work. Also, I have to work and babysit my symptoms but I did notice that you already talked to Dr. H and he did diagnose you with bilateral compression of the Jugular veins by Styloid and C1. So I thought you have a case going on and onto the next phase for surgery. Since yours were so clear from imaging and doctor noticed it, I thought they were enough to proceed with surgery.

I did quickly take a look at your CTV images and you have a textbook Vascular Eagle Syndrome with IJV compressions by C1 and Styloid. Your left IJV is the dominant one and is severely compressed by C1 and Styloid and would need a styloid removal and shaving of the C1 to fully decompress it. The right side is smaller and connects to a smaller transverse sinus so opening it won’t drain much but you definitely need the left side operation since it is draining most of your brain fluids.

I also noticed you have bit larger Arachnoid granulations in your Transverse sinuses. You only need to worry if the left one gets too large to block the dominant left TS. You just need to monitor that for now.

Here you can see that the C1 & Styloid compression on the left IJV and C1 compression on right IJV.

Left IJV (light blue arrow) compression by C1 (blue arrow) & Styloid (red arrow).

Right IJV (light blue arrow) compression by C1 (blue arrow) & Styloid (red arrow).

Your Collaterals (red circled veins) and Suboccipital Cavernous Sinus (SCS) (light blue arrows) are dilated because of the compression of the IJVs and blood is being rerouted to them as @elijah has pointed out. Once the IJVs are decompressed they shrink back a bit in most cases

You have dominant left transverse sinus (TS) (red arrows) and smaller almost hypoplastic right transverse sinus (red arrow). You also have Arachnoid granulations in your Transverse sinuses ( blue arrows) although smaller ones are nothing to worry about, the bigger ones pose a problem of blocking the sinus. Yours are moderate in size. Since left TS is the dominant, you need to monitor it so it does not get larger to occlude the vein.

That is all I can see in your CTV. I have not looked into your MRIs. I think you need to address your left side C1 & Styloid compression (both not only styloid). Wishing you all the best.

[akc]

Oh wow. I feel terrible! I popped over and into here to see what’s new and saw your reply. This has happened a couple of times that I don’t seem to notice a reply. So first of all, my deepest apologies. More though. Thank you. Thank you so much for the thoughtful and thorough response.

Yes you are right that Dr H is recommending the surgery but I am honestly a little bit (lot!) nervous about what recovery for me would look like and possible implications on neck issues (my body revolts to a trigger point injection so… this? and my neck muscles are already dysfunctional and spasm, specifically on the left side… so I’m more than a little worried about what they will do after a knife has been in there)

Although I had been able to work out some things on my own after sooooo many hours of trying to learn to read these, you and @Isaiah_40_31 both pointed to things that I did not know how to read/find or know about. The arachnoid granulations for one… I’ll have to do a little research on them or ask at an appointment how to keep an eye on that one on the left. If nothing else (and there is more!) you have shown me something that wasn’t even on my radar, so thank you! Also showing me where C1 was on the side view (forget the correct name for that) and pointing out the suboccipital vs collaterals (I really really hope these get smaller… if I am understanding it correctly, they play a key role in the base of scull pain that makes me ‘have’ to get flat so often and struggle so much when upright (and even more if I have to look down to, say, not chop off my fingers while prepping food ;-))

I have been wondering about the C1 shave and what the results might be without it. I do have instability in my neck and so am very very wary of touching C1… and Dr Hepworth doesn’t do C1 shaves (of course I could go to someone who does). My gut is telling me that I need to proceed without the shave and if down the road I am still at the same level of disability (the whole mega head and neck/face pain every day) and we’ve addressed what all else, then going back in to do the shave. I’d love your thoughts if you think this is a concerning strategy.

I am such a wimp about the surgery that I have an appointment with Dr Fargan in North Carolina to get me over the hump. He’ll do his provocative angio/venogram + LP, give me his recommendations… and assuming he’s thinking the same then we go. Hmmmmm… I wonder if I should try and get a consult with someone who does C1 and Styloid to hear their thoughts… Fargan is a neurosurgeon so he’ll be looking at pressures throughout the head and seeing if he thinks we may need to open up the right side down the road (ooh, I can ask him about the granulations :-)), but he’s definitely not an eagles expert…

I have recently started a course of injections that, after 6 months, might help my body to respond better to surgery, so we moved the surgery date to April 2024. Seems like a long time from now, but it will be here before I can blink.

Okay, I’ll stop going on. Again, I am so so sorry for not seeing your reply until now. I hope you’re well and I can only say wow… school and work and symptoms… I can barely even manage me…

[Isaiah_40_31]

@akc - Dr. Fargen has actually started doing a few styloidectomies here & there but he’s not very experienced at it yet. He pretty much sticks w/ his specialty of doing the angio/venograms & helping patients decide what their next steps should be.

Dr. Costantino in NY is a doctor you could consult with regarding styloidectomy w/ a C-1 shave. He does the styloidectomy & has a neurosurgeon assist who does the shave.

You are wary of the C-1 shave for good reason especially if you already have cervical instability. Most doctors believe that the tiny amount normally removed from C-1 doesn’t affect cervical ability, but we’ve had a few members who would contradict that idea based on their post op experiences. Though Dr. Hepworth doesn’t shave C-1, he does try to move the IJV away from C-1 enough to allow it to open & get back to its normal function. This approach has worked for many of his patients, but there are some w/ stubborn IJVs that just don’t cooperate. That’s the risk of surgery & why a doctor/surgeon can’t promise the hoped for outcome. I have long recommended not to enter surgery with fear but with hope because that in itself can help with a more positive end result.

I’m really glad to know there is medication that can help strengthen your body & prepare it for surgery. That’s new information for me. Do you know what is in the injections you’ll be getting?

[akc]

Thank you so much, Isaiah, for all of your thoughts; including the one of entering with hope and not fear. The power of the mind and of the heart. Yes.

And you just gave me an a-ha about Dr H. I han’t connected the dots or thought much about it. He has shared that in his view, we should do the left Jugular, then if things are not resolved the potential next steps would be stent the right Transverse sinus and then do the right Jugular. He had said that it was significant that the right jug is sitting on the outside of the C1 transverse process but I hadn’t retained the why, so in a recent follow up where I just asked him a bunch of questions I asked him again. He said that with every head turn the vein is getting massively stressed; “torque”; and that it rendered is useless as a backup jugular. So if need be he would go in and move it. I had assumed he’d sort of “flip it” (in my very visual mind) to the front of C1 after removing that styloid… and in my mind it being a bit like a rubber band flipping it forward it would then “stick” there. But now I am understanding that there is more that he aims to do with his “decompression” and that that includes moving the vein out of the way of anything that’s hindering it’s free flow. Thank you.

I also read through a couple of full stories; including Kooldude and Dobbs, and reading those it sounds like results for people walking in with instability tent to be a little poorer (or rather that instability is more likely to be increased according to patient experiences, while Drs say that shouldn’t happen. I think about what I’m reading from the patient experiences about the work needed on their necks, regaining strength etc, and think about my dysfunctional neck muscles that are so bad we need to mostly avoid engaging them. My hope is that at least some of the dysfunction might actually be coming from the VES stressing muscles, maybe impacting nerves; but of course its weakened state alone is not insignificant going into this. And that is another reason to perhaps start with most minimal impact.

And the injections . Yes. i have MCAS. I only just found out that this existed a while before meeting Hepworth and had gone to an allergist who kind of poo-pood it. But Hepworth brought it up the first time I met him and referred me to another one who really understands MCAD and MCAS. I had read in a german publication that MCAS can also impact muscles and nerves and this gave me hope, because my nerves and muscles have gone crazy with ridiculously long impacts when I’ve even done a little pec minor or trap trigger point or steroid block (let alone injections in c-spine or horrid botox). And this has been my great concern for surgery. Dr Sarid who I saw/see for MCAS says that indeed it can be that these reactions are due to MCAS. So I’m on the master protocol for it; 3 antihistamines a day (of the levocetrizine generation), chromolyn sodium liquid 3x/day… and… xolair injections. Xolaire is not approved for MCAS but is approved for urticaria and asthma (I have urticaria (and asthma, though very under control in recent years), so he could order it for me ‘off label’). It’s definitely not been proven or shown to work on the specific issues that I have, but it is most definitely the best chance. It works “By inhibiting the binding of IgE to the IgE receptor, Xolair prevents the release of histamine and heparin and also reduces the number of IgE receptors on basophils”. People have had severe reactions (anaphylaxis) to it, so you have to have it administered at increasing doses in-office and held for observation the first 3 times, and have an epipen at home. after 6 months you are at maximum benefit. So this is where and have hope for a less impactful reaciton to surgery.

Now one of the only things bugging me about post surgery that I need to look into is that I can’t take NSAIDs, so how on earth do I work through post surgical inflammation to keep the pain under control… I’ll definitely come back here and ask what ideas people have in case anyone else is in that same boat (and ask the Drs - it’s not been a priority until I got closer to the “yep I’m doing this” so haven’t thought about it…

[KoolDude]

@akc

Oh wow. I feel terrible! I popped over and into here to see what’s new and saw your reply. This has happened a couple of times that I don’t seem to notice a reply. So first of all, my deepest apologies. More though. Thank you. Thank you so much for the thoughtful and thorough response.

Don’t feel sorry for that. You are always welcome. BTW, I have looked at the MRI Below as well. It is mainly showing your arteries particularly Carotid arteries not Jugular Veins. All you need to take care of is both C1 and Styloid. I would do both if I were you at once.

@akc

Specific to look at Jugulars: https://dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2023091318421350.442605827735541973519

[Isaiah_40_31]

@akc - Thank you for sharing your story! Your situation is another example of how unique our anatomies are. I’m so sorry for the impact MCAS has had on your body but am glad you have that diagnosis to explain why you’re so over-reactive to even small treatments. Thank you also for the explanation about the meds/injection that are designed to help you tolerate surgery better. I’m so amazed & grateful for the researchers & doctors who’ve figured out these very complex body chemistry things, to at least some degree, & then have gone on to find ways to help alleviate or reduce symptoms.

Extra strength Tylenol (acetaminophen) is actually what’s most often recommended post op since ibuprofen (NSAIDs) are blood thinners. If you’re not taking an opioid (these are not NSAIDS), then ES Tylenol will be your go to.

[akc]

Thank you for your kindness. And I’m giggling a bit at the MRI that was meant to look more closely at my jugulars not actually looking at my jugulars wel But indeed, with the CTA we have what we need. I do so hope that you find the relief you so deserve with the C1 shave you have coming up in the UK. I was looking yesterday and am blown away at how many interesting reads you have posted.

[akc]

Thank you again. I must say I am blown away at how you and @Jules and a few others seem to find the time to look at and respond to every single one of us. This truly is such an incredible gift that you offer to us. I hope that down the road as I progress in my journey i’ll be able to be of help to others as well.

On the NSAIDS, I might be mixing things up. Brain stuff. I thought I was reading stories where people get some intense swelling after a little while and start alternating ibuprofen with tylenol. I know that I can use prednisone for a little while but not good to stay on it for long. (totally irrelevant side story:) Ha! when I had a frenectomy done (they cut the webbing under your tongue if you were born with that in hopes it will help with muscle stuff…) my tongue got so huge in my mouth that I couldn’t close it. Where most people pop a few ibuprofen or equivalent every few hours and go on about their day like nothing happened - as of day 1, I was walking around with a whale in my mouth and unable to form words for the first couple of weeks … and then spoke with a lisp for another month…

Take care!