Hi everyone,
I’ve been a lurker for a couple months, since my doctor introduced me to the existence of this condition in the first place, and decided to finally join this past week in light of the roller coaster of a journey I’ve been on with my vascular Eagle (specifically was told transverse process of C1? is responsible). I suppose I’d like just to tell my story and share my symptoms and experience in case it is helpful for anyone else but also to open it up to crowdsource any wisdom, thoughts/experiences, tips, or even just support and solidarity from anyone as well who might have been down a similar road before. This has been a rough and isolating journey, so I’ll take anything I can get. Thanks in advance for listening, and if I can be of any assistance for anyone else please do reach out.
Okay please also bear with me since this might be an ugly messy story – one of my biggest symptoms happens to be brain fog 
I just appreciate the forum to just get this all out there, even if it’s just… SPLAT.
Caveat to the real start of this journey is that in retrospect upon getting more and more info about my health, this condition, and then diagnosis, I realize there might have been subtle signs for a while before this. But April 2025 is when I started noticing acutely I was getting these “sock-like” headaches and pain/pressure behind my eyes that got worse with physical exertion. I went to both my PCP and my eye doctor twice about it over a couple months and everything checked out, optic nerves were fine, primary recommended drinking more water/taking Advil/working out less/less intensely. Frustrating, as it was new and unusual and I know what dehydration and overexertion feels like… but okay.
Those symptoms progressed + I also started noticed some ear pressure in both ears and a bit of sharp pain kind of below my ear at my neck. Then – maybe just coincidental but I feel like it’s worth mentioning – early July I had an incident at the gym where I bailed at the bottom of a barbell squat, my ponytail got caught on the knurling of the barbell, and my head got yanked back whiplash style. I laughed it off as bizarre and didn’t think any damage happened. It was obviously not comfortable but wasn’t really painful. Two or three weeks later, in bed reading, I noticed a “dripping” sound like a faucet dripping into a sink onto a towel or something, coming from inside my head. It was rhythmic and I could pinpoint it sounding like it was coming from the base of my skull. It would stop when I sat up straight and started again if I resumed the original side-leaning position I was in. Every 7-14 days, once or twice a day. Would get this positional, rhythmic, "physical”-feeling clicking/dripping thing, and it’s objectively audible – I have it on recording. It took me a couple months to be able to catch it, but when I open my mouth, you can hear it loud and clear. And then after that, snowballing came new & progressively-worsening:
- light-sensitivity and nausea
- new floaters and visual splotches
- dizziness, disorientation, tripping, balance issues; if I turnd my head “too quickly”, I’d lose my balance
- brain fog, cognitive impairment, trouble spitting out my sentences, recalling words, forgetting convos from five minutes ago, unable to make simple decisions, doing silly things I wouldn’t do before. I FEEL “stupider”.
- neck (“coat hanger”) and shoulder stiffness and pain
- pressure and full feeling in my neck and throat, especially when heart rate increases
- heart rate jumps when I do absolutely nothing. Maybe I come down the stairs to answer the door, my heart will zip, palpitate, then get the throat pressure and throbbing.
- face and scalp numbness, tingling, pain/shocks
- finger pain, jolts, numbness, carpal/cubital tunnel-like symptoms (confirmed not to be these syndromes) I wake up with swollen numb hands and fingers
- new motor skill issues, clumsiness, dropping things, unable to use my fingers well. Bump into walls/depth perception
- headaches had become pulsing and worse when lying down but also I had much trouble being upright or doing anything at all. On worst days only option was to hope to somehow fall asleep in some position and become unconscious asap.
- difficulty swallowing/inhaling sometimes, like it almost being “effortful” to inhale… like almost an inspiratory wheeze, I can see a bulge in my throat and can see my face muscles get tense and bunched up.
- I am a singer, and I cannot sing anymore. Singing is similarly “effortful” sustaining a note is painful and increases that pressure feeling in my throat and gives me a headache.
- crinkling/crepitus when I turn my head and also when I wake up in the morning, I often have a splitting headache, neck pain, and this base of skull/atlas stiffness and pain and this crepitus where I feel like my head is going to pop off.
For whatever it’s worth, I realize this is such a constellation of symptoms – and while they’re all within the realm of IJV compression related I guess and I have an inkling there’s an IJV compression–>throacic outlet or just like, torso/thoracic nerve impingement pipeline connection going on here – I am also aware there’s chance a couple separate things are just happening simultaneously. For example, another symptom is I’m having shocks of pain, like nerve-pain-like, in my mid-back, sometimes down my back. Also sometimes wake up with numb feet? And so anyway, found out on this long journey incidentally that I have a herniated cervical disc and a herniated lumbar disc… but was told re: both of those neither are severe enough to be causing those aforementioned or any of my symptoms. Hence why I’m feeling in my bones that this is more of an interconnected, cascading-symptoms kind of deal.
These past 14 months have been distressing, debilitating, and life-altering. My ability to work and do the things I love has been significantly impacted. There’s not a single minute of any day that I am not affected.
Okay. So here’s what my medical/provider/diagnostic journey has been like:
Since April 2025, regarding this particular set of symptoms, I went to: my primary twice, my eye doctor twice, a different internist to see if a fresh set of eyes might at least TRY to investigate, an ENT, two different neurologists, a spinal neurosurgeon, a neuroradiologist, a number of various physicians in the literal emergency room (due to a mistake on an imaging report – oh that’s a fun one, I’ll get there) and a vascular neurosurgeon. The vascular neurosurgeon is the one who dx’d the Eagle. Mentioned it within 10 mins of my consult. Said I sounded textbook, it’s explicit, it’s right there in the imaging, no question, and yet… it took 14 months. 
I say that not to be discouraging. I hope that actually might be encouraging for anybody who is wondering how long is too long to get some kind of answer/direction.
And if you’re wondering why it took so long, I was told it was: dehydration; over-exercising; stress; anxiety; ear infections (no history of those); allergies (no history of those); regular old tinnitus from listening to my music too loud (I… don’t do that); told to do one month of allergy meds and come back (tried that, didn’t work); okay try one more month of different allergy med and come back (sure, whatever, surprise, didn’t work); okay why don’t we try poking a hole in your ear drum to drain fluid even though I can’t see any fluid behind your ear drum (hm no thank you, Doctor). I was told it was all my TMJ, wear my nightguard (I do). I was told I probably had carpal and cubital tunnel (got an EMG for those – don’t have those). Saw a neurologist. Referred me to a neuroradiologist who specialized in CSF leaks for a consult several months out. [I’ve since seen them and long story short, does not believe I have a CSF leak so not worth a workup but did give me a lead in that I should get further cevicogenic workup because apparently I “have an unusually degenerated cervical spine and unusual bony formation on my C1 for my age” and recommended CT workup. Nobody yet I’ve asked have been willing to do such a workup.] Got MRIs, MRAs, MRVs. Found out I have herniated discs (P.S. I received that msg from one of those ordering physicians in the online msging portal. Just a couple sentences, that I have some herniated discs, will discuss with my other doctor. No real guidance for me or whether or not I’m supposed to follow up or with whom. I’d never had a herniated disc before. I had to literally Google what someone is and isn’t supposed to physically do with a herniated disc. It felt very dystopian) Made my own appointment with a spine neurosurgeon who said the discs were not severe enough to be causing severity of my symptoms, said I was a good candidate for artificial discs but wasn’t confident it would be the fix I’m looking for. In desperation I showed the video of the clicking and expressed how much my quality of life is suffering. Referred me to an endovascular colleague, aforementioned.
I worry I’m losing you all in the mud. Sorry. Let me try to get back on track. So the endovascular NS clocked it in the first visit and also clocked the “clicking” as probably palatal myoclonus, which the neurologist had said was pulsatile tinnitus. Surg had me get an MRV of my neck to confirm. This is around where that bananas imaging mishap happened. So the MRV showed severe bilateral narrowing of my internal jugular veins, but the reading physician somehow accidentally put “internal carotid arteries” instead. I received that report in my portal immediately, thanks to that one new-ish law. What a blessing and a curse. The morning of the day I received it, I’d woken up with face and neck numbness, actually the first time that the entire left half of my face and neck were tingly and numb and for an extended period of time. So already pins and needles, and then around 3PM I receive the report… and I’m not a doctor but I do know that blockage of carotids can equal stroke and maybe dying. So this report plus strange symptoms equaled me trying to call surg to ask if this was an emergency but couldn’t get a hold because of the stupid thing where there is only an AI receptionist/leave-a-voicemail option. So made the executive decision to go to ER. Eight hours and about 5 unnecessary tests later (couldn’t they have done, I dunno, maybe one test + just re-check the images that I’d brought on CD? There had to be someone in that hospital qualified to correctly ID my vessels), they confirmed my carotids were fine. Two days later I got to speak to the vascular neuro again who said it was clearly my jugulars & clearly a mistake. And I’m NOT going to go far down this road, but – something else unethical and just. Ugh. Happened as a result of that hospital visit that made more work and more stress for me.
Got lost again, sorry. But this is all to say this had been such a difficult, disappointing, discouraging time… I’ve lost a lot of faith in the medical system due to my experience.
Anyway. Vascular neurosurgeon (VNS I guess I’ll say now) validated this is very real & very much happening, was confident I was going to have high intracranial pressure causing all of my symptoms due to the severity; performed venous manometry and arteriography. Post-procedure, surgeon tells me: it’s the transverse process of my C1 compressing both IJVs, severe worse on right, but my body has found/made these compensatory blood pathways so I actually have normal intracranial pressure, so there’s no way this compression is causing symptoms this severe, that it’s probably migraines, and there’s nothing they can do at this point, surgery wouldn’t “do” anything with no intracranial hypertension, too much risk, and insurance wouldn’t consider any kind of surgical intervention anyway right now so go back to headache neuro to do a 3-6 month migraine protocol and in the meantime try anything and everything – physical therapy, heat, cold, maybe find another spine neurosurgeon opinion, pain management doc, Botox, etc. [edit: forgot to include, from the get I already really somehow felt like this couldn’t possibly be the full story – how was I somehow both textbook but also no way the compression responsible for my symptoms? – but also I’ve since learned that you can still have symptoms/long-term consequences even if normal intracranial pressure because those compensating vessels aren’t meant to be draining all that blood.]
Talk about demoralizing. I was so hopeful to finally have someone able to give me very convicted direction, and then it felt like being told “nevermind, shrug, idk. try it all I guess, good luck”. Might as well have again told me to “just Google it”. I’m so tired of doing my own research and treatment planning.
Tried to get a second opinion/consultation from another VNS who has been recommended regarding this condition – one of my neuros even themself referred me to this neurosurgeon separately to get thoughts about the cervicogenic/skull base stuff – but in so many words, I’m being kept from being able to even make an appt due to them in the same practice as my original surgeon. Wasn’t told whether it’s a policy or an unspoken agreement or a personality/ego thing, who knows. But so that gate is currently kept.
Where I’m currently at: still in daily pain/discomfort, the migraine protocol is not helping lol, however I do now have an appointment for a consultation/second opinion at the end of July with another highly recommended surgeon with Eagle experience. Also slowly finally learning what helps/works and doesn’t help/work for me. Sometimes, though, that list randomly changes on a dime… so that’s fun.
What has been reliably helpful so far:
- Ice on my neck/traps/shoulders/back
- Avoiding caffeine
- Keeping heart rate down; avoiding intense cardio and heavy lifting
- Avoiding quickly changing positions (laying to sitting, sitting to standing, suddenly bending over); avoiding inverting or bending over at all when possible.
- Sleeping with small, low, squishy support under my jaw/neck.
- Wearing tinted glasses/sunglasses. I have 4 different shades of "sun"glasses that I wear indoors, too, that help with light sensitivity.
- NOT massaging my neck/throat/skull base. I think this makes it worse, actually, by inflaming the tissues. Took me a while to realize this, oops. It’s instinctual for me to want to rub to make it feel better.
Maybe there’s more, but I feel for now I’ve written enough lol. I’m getting married in the fall, and part of me feels so robbed of what’s meant to be the happiest time of my life … not being able to be fully present because of pain, discomfort, sensations. I think this is something that providers and insurance forgets when they tell you to go home try this try that give it a wait and then give them a call in a couple months. They get to hang up and go home or whatever. This is my life here right now. This is all my 24-hours. My 24-hours, 7-days-a-week is this. THIS. I’m eager to wake up one day pain-free and psyched to get to live my life that day… not waiting and waiting for that day like I feel like I am right now.
I really appreciate the space to write this, and if you’ve read this far, I really appreciate you!
Again, I’m open to any thoughts, advice, guidance, experience, things that help you, IJV-compression physical therapy movements (insert disclaimer that you are not a medical professional, insert my acknowledgement of that), anything. Thanks again.
we’re hanging in