Newbie Here -- Slightly (?) Ossified Styloids and Jugular Compression (I think?)

[tkk]

Hi folks. Like many of you, I’ve been on a miserable journey for years now. I’m just diagnosed “officially” with Eagles yet, but my provider said she sees elongated styloids on both sides, and she has referred me to Hepworth and recommends styloidecomy(ies).

When I wrote in to join the group a couple of weeks ago, I noted that I was 8 months post-blood patch (my 5th) for a CSF leak; I now think I’m leaking again. Grrrrr. When I’m not leaking, I have terrible Rebound High Pressure headaches (spikey-leaky syndrome). I’ve had chronic migraines, thunderclaps, etc. for several years. I was diagnosed with fibromyalgia about 10 years ago, then central sensitization syndrome, the occipital neuralgia and chronic migraines, then thunderclaps.

I had surgery for my occipital neuralgia (back of my head and neck) in Feb 2022, and while it helped decrease my migraine frequency from every day to about 8-10 a month (fabulous!), I had a really awful recovery and only found out 1.5 years later that I had a CSF leak. I believe the leak was somehow triggered by the ON surgery – perhaps by all the swelling after. I’ve felt WORSE since the surgery, and seem to add diagnoses regularly now.

I started seeing a functional med provider (we call her my FMC – functional med chick) this spring who has diagnosed me with a bunch of stuff: EDS (I have a family history, including a first cousin with vascular EDS), POTS, Mast Cell Activation, Long Covid, chronic Epstein Barr virus (mono!) and probably other stuff I’m forgetting. Oh, lots of mold toxicity.

Prior to seeing her, I’d been dealing with a CSF leak (5 blood patches to date), chronic migraines, Central Sensitization Syndrome/fibro (basically whole body pain), etc. When my FMC looked at the imaging I finally uploaded, she immediately noticed elongated styloids on both sides and she recommends styloidectomy(ies).

I saw Dr. Osborne last week and he was rather dismissive. He said he could go either way on whether I need surgery. He said the question is, “could you see yourself living this way for the next 10 years?” and I immediately responded, “NO!”

I keep chasing something - anything - that could “fix” me. I’m not sure if this is the right thing to chase now.

Primary symptoms at this point (Nov. 2025):

(1) Head pain/pressure: varies from day to day but I’m never below a 5 on the pain scale and my average is 7. I’m a walking barometric pressure monitor and seem to have become more sensitive to pressure changes recently. My migraines and thunderclaps have also been more active recently – Ajovy is amazingly helpful, but I get bad “pulses” of sharp pain.

(2) Fatigue. Totally debilitating. I sleep 12-15 hours a night and am NEVER rested. After any major activity, like a trip to visit one of our kids, I do a “Super Sleep” that lasts 36-40 hours. Presumably this is mostly due to Long Covid and EBV. The only thing that has helped my energy is fludrocortisone (steroid) but that increases my head pressure significantly. We’re going to test my adrenals next.

(3) Heart/POTS issues: during a POTS flare (I’ve been in a flare up since late July!), my heart rate goes nuts when I stand up and I really can’t be vertical for very long.

(4) CSF Leak: Now that I’m leaking again, when I’m vertical I get super nauseous, my brain sinks into my neck and makes my head just feel WEIRD, I forget words, I have zero appetite, I get dizzier when I stand and wobblier than usual when I walk.

I live in LA with my husband and two kitties, Mo and Potato; we have 21 year old twin daughters who graduated college in the spring and are living their best lives in Boston and Santa Cruz. I stopped working last year and I’m about to apply for disability. I’m a “recovered” lawyer and had a consulting business working with charter schools and non-profits in education, writing charter petitions, major grant applications, etc. I’ve gone from being very Type A, over-working, productive and social person to basically being a shut-in and going from bed to couch. It’s awful! I’m grateful to have found this group.

[tkk]

I hope it’s ok to upload some of my imaging. My FMC took these screenshots of a CT Angio from July 2025, an MRV from April 2024, and an MRI from Sept 2023. I would be immensely grateful for the wisdom of the experts here! Thanks so much, t.

[Isaiah_40_31]

@tkk - Welcome to our forum! So tough for you to go from a busy, very active life to nearly totally bedridden. I’m so sorry!

What I immediately notice in your first image is that your internal carotid artery looks extremely tortuous. It twists & turns which alone can be problematic. Your styloid isn’t extra long but it is thick & the small section of calcified stylohyoid ligament just beyond the tip of the styloid is quite pointed so could also be problematic.

In the second image, there is also vascular tortuosity, but I can’t tell if it’s the internal/external carotids or which vessels are involved because the cervical spine is in the way. In the second image, your styloid appears to be very close to your C1 vertebra which means your IJV is likely being squashed between styloid & the transverse process of C1 on that side. It’s possible the IJV on the other side is also being compressed, but, if so, it’s most likely by the transverse process of C1 as there looks to be reasonable space between styloid & C1. Since this imaging is from an angiogram, it appears your IJVs were not imaged so they are not visible.

You’ve lost the natural lordotic curve in your neck which can cause the styloids & greater horns of the hyoid bone to move closer to nerves & vascular tissues. It’s also been speculated that loss of cervical lordosis is a way the body compensats for internal jugular vein compression as lack of lordosis puts the head/neck in a position that may help relieve some of the pressure on the IJV. Since your IJV isn’t visible in the images you posted I can only comment on your internal carotid artery.

Beyond the first two images, I’m not sure exactly what I’m looking at. I can annotate the first two if you’d like. Please let me know.

[Jules]

I’m sorry too that you’re not able to do anything much now & feel so rough! It sounds like there is loads going on for you, we can see that the styloids could well be a problem, but maybe removing them won’t fix everything, so it’s important to be realistic & accept that this might well answer some issues but not a complete cure…
I agree with @Isaiah_40_31 that your styloids & C1 are really close in the second image, so would be compressing the IJV and also the vagus nerve more than likely, which could possibly be involved in your POTS symptoms…
I’m sorry that I can’t label images, on your second one as well it looks like either your hyoid greater cornu process is elongated, or you have some calcified stylo-hyoid ligament at the hyoid end, & from that view it looks like it could be irritating the carotid artery?
So IJV compression could be causing you high intracranial pressure & leaks, it can also cause fatigue & brain fog, although yours is pretty excessive!
I don’t know what meds you can take, but have anticoagulants ever been suggested with your head pressure? Some members have found these helpful, like Plavix, Brillinta, Eliquis, Xarelto, Diamox. Also there are a couple of supplements which have helped some, like Creatine, Trimetazidine & Citicoline.
If the IJV is as compressed as the space indicates, then it’s not surprising that you keep getting CSF leaks, and patches won’t hold forever, so removing the styloid (& possibly a C1 shave) would hopefully help! I hope that you don’t have to wait too long for an appointment with Dr Hepworth, try asking for a cancellation if you’re able to travel at short notice?

[Isaiah_40_31]

I’m sorry to say I don’t know which of the top 2 images is left & which is your right side. I’ve annotated the image w/ the styloid that’s very close to C1. Also because it’s the one that shows what looks to be something possibly abutting your external carotid artery on that side, but I don’t think it’s the greater horn of your hyoid bone. It looks more like part of another blood vessel to me, but the fact it’s white makes it appear to be calcified so I put ?? as its identifier.

[tkk]

Thanks SO much for this.
I’ve just found out that Hepworth doesn’t take insurance, so I’m trying to figure out what to do. Do ANY of these surgeons still take insurance? We have a great Blue Shield of CA PPO plan, so it’d be lovely to get them to pay for this!

Dr. Osborne threw me for a loop at our appt on 11/7. He said (my friend was taking notes!), “You don’t have a calcification issue. Ligament is not abnormally calcified. If you have a problem, it’s simply that something is being touched or kinked. Is the bone a little longer? Maybe a little, but barely. Like a milliliter. Length has nothing to do with symptoms. Not even a little bit.”

He hadn’t looked at all of my paperwork and I honestly was questioning if he’d really looked at my imaging or someone else’s! He was very non-committal about whether I should even have surgery or not, and totally uninterested in compression issues. He kept talking about other patients and in generalities and it was really hard to get him to talk about ME, oddly – we were with him for about 80 minutes and my friend and I felt like he really talked about ME for only about 10 minutes! I get that he doesn’t agree with shaving the C1 or putting in stents, but what I’m not clear on was whether I’m just not the right patient for him and so he wasn’t interested, or if there really isn’t anything there to fix.

He did say more than once to be sure to exhaust all the non-surgical remedies first. What are those? He said then if I really wanted surgery as a “Hail Mary” he’d “probably be willing to do it.” But he made me feel like I’m going down the wrong path here, so it was incredibly discouraging. Any thoughts? Thanks, t.

[tkk]

Hi. Totally ME to have a ??? involved!! Ha. Thanks so much for marking this up. I’m a pretty quick study, but this is a whole new world to me and I’m not a trained medical professional.

I have TONS of imaging, including obviously a lot more in that CT Angio of my Head/Neck. The snapshots are what my functional med chic took while we were talking, but I could ask her to send more and label L and R if she can.

The latter images are from my MRV of my veins. She thought it clearly shows that my jugular veins are coming down all fluffy and full initially, then get pinched at the C1s on either side.

And I honestly don’t know what she saw in the last image from an MRI.

Would something in particular be helpful for you to review? Is there a way to upload a whole CT? I have another CT Angio (Coronal) of my head from 2020, and I’ve been curious for someone to look at it compared to the CT from 2025 to see what the differences may be, since my symptoms were NOT like this in 2020.

As I posted in reply to Jules, above, the visit with Dr. Osborne threw me for a loop with him saying I do NOT have calcification and he doesn’t necessarily think I should have surgery. I do understand that I’m very “complex” and the surgery would likely not fix me entirely, but what I’m not clear about is whether I’m just the type of case he doesn’t like, or if I don’t really have anything going on. You and Jules clearly see stuff! Thoughts?? Thanks again. SO grateful for you all. – t.

[tkk]

I think I posted this is the wrong place. Can I “move” this to General? Or I suppose I could copy and paste and repost? Sorry, I’ll figure this out soon! – t.

[Isaiah_40_31]

No problem about where your post is, @tkk. @Jules can move it if you want it in a different category.
I am surprised Dr. Osborne dismissed you so definitely. Your styloids aren’t super long but they’re clearly long enough to be causing problems. Dr. Hepworth is our go to for people who have all the other health challenges you have along w/ ES. He is a very skilled surgeon & should be able to help you considerably. Have you been able to make an appointment w/ him yet?

As far as uploading your whole CT goes, our member @TML is very good at looking at & dissecting those. He recently had surgery himself so is taking time off to recover, but if/when he comes back, he would have you send your full CT scan in a Google drive folder to him via a private message.

Re: more images - If you have anything that shows your IJVs that would be helpful. Images like the top 2 sagittal images are the easiest for me to interpret, but I’m not a doctor so can only point out things for you to discuss w/ a doctor. Axial images can be better for more accurately assessing where & what is causing compression, but the 3D axial images are a good starting point.

[Jules]

It’s strange that Dr Osborne didn’t think you would be helped by surgery, but we’ve had another member with vascular ES I think was told the same recently. If Dr Hepworth isn’t going to be ab option, Dr Nakaji in AZ is very experienced, (but has also recently put off some members with complicated medical conditions like MCAS, so not sure whether your situation might be the same), or Dr Costantino in NY? Might those be an option?