My Story Thus Far (Advice/Encouragement Appreciated)

General
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Back in February, despite being perfectly healthy (to the best of my knowledge), I woke up one morning and, seemingly out of nowhere, began suffering from a number of incredibly distressing neurological symptoms (light sensitivity, visual snow, floaters, ear ringing, DPDR, etc.), intense head pressure (still here now - presents as constant throbbing on back left side of head), and persistent malaise. From here I found myself in the emergency room, urgent care, and PCP office multiple times only to be told that it was all a matter of anxiety and that I just “needed to relax” despite not having any worries outside of what was going on with my body.

Desperate for answers, I ordered extensive labs that revealed a severe mold toxicity (same mycotoxin was found in the house I’d just moved into), B6 toxicity, and pesticide poisoning. Moreover, my stress hormones were 5 times the normal range while serotonin was below the usual range. Despite being on a strict detox protocol and taking a break from work, however, my symptoms did not seem to have much improvement.

My first major breakthrough occurred when I flew overseas to meet with MSK Neurology who readily diagnosed me with thoracic outlet syndrome (the basis for which has since been questioned by several practitioners, but that’s besides the point) and bilateral internal jugular vein stenosis caused by a C1/C2 misalignment resulting in elevated intracranial pressure. I have since had my Atlas and Axis adjusted several times at this point however neither of them have kept their position longer than a week at a time. Even though I have corrected my posture and carried out the rehab exercises prescribed (he wanted me to strengthen my neck and upper back muscles which he believed to be tight because they were weak rather than overactive, and to cease all dry needling, manual release, etc.) for a month I only continued to feel more defeated as no change in my condition had yet to occur.

More recently I travelled to Florida where I met with Dr. Middleton and Dr. Hauser for further diagnostics including a CTV with contrast, DMX, cone beam CT, and ultrasound of my eyes and head vasculature. Dr. Middleton believed the crux of my problem to be the hypermobility of my C1 due to lax ligaments which are allowing the bone to crush the nerves at the base of my skull and constrict the right IJV, vagus nerve, and internal carotid artery (the left IJV is hypoplastic and simply doesn’t work at all). He also found that the ligaments meant to connect my first ribs have been impaired and recommended injections to restore these as well. Dr. Hauser expanded upon the IJV stenosis by finding that there is zero flow when upright and recommended laying down every hour to reduce pressure. He also found that my vagus nerve was considerably degenerated and confirmed that ocular pressure is elevated which is likely responsible for my visual disturbances. He also noticed my styloid ligaments were calcified and contributing to the compression but believed that curve correction would be sufficient to restore proper flow. Dr. Middleton, however, did not want me to engage in any curve correction exercises until the neck ligaments are strengthened to avoid losing the atlas adjustment he performed during our visit.

As of now I am waiting to get in with Centeno for a PICL and an about to do my first round of PRP here in town in my lower cervical, jaw (I also have a newly developed TMJ issue in the form of a disc displacement from all this somehow), and first ribs. I am desperate to return to my previous life (used to work out every day and now can’t even sit upright at my desk for more than an hour…) but want to avoid surgery if it all possible given I’m only 26. The only medical issue I had prior to this was constant muscle tightness / nerve irritation in the buccal area of my right cheek that worsens when lying down, and chronically tight back and neck muscles (starting to think this might be related since no amount of dry needling, Botox, etc. ever solved it).

Also, the only potential precursor to all this was my first panic attack two weeks prior caused by taking Adderall and caffeine prior to an athletic event that put me in the ER, however I recovered from this after a week so it seems unlikely to be related.

What else do people in this situation usually do? Is it normal for this to come on so suddenly (literally overnight)? Has anyone actually managed to return to their previous level of functioning? Would seeing a local vascular neurologist help with anything? Are there any l tests that might reveal more? Should I get tested for a possible CSF leak? Will restoring my cervical curve relieve pressure such that I can avoid a styloidectomy?

Also, does anyone else with this have a harder time sitting as opposed to standing? And random instances of bloodshot eyes?

Any insights or advice would be greatly appreciated. If posting my imaging here would be of use please let me know.

For some reason I can’t post the link here but the summary of my visit with Middleton is called “TMJ and Visual Snow” if anyone wants to see my CTA via the video on his YT channel.

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Hi & welcome!
It certainly sounds as if you’ve got alot going on with your neck, and really difficult symptoms which must be hard at your age :sad_but_relieved_face:
Feel free to post your images, although you’ve had some experts review them so not sure we could add anything to that at all, we’re not medical professionals here!
We’ve had a few members try PICL & PRP treatment with very mixed results, and have had lots of discussions about CCI which you could search for… I wish I could give you answers as to what might help you the best & what might be worth trying first, but it seems to vary so much between members… Some have found that having styloids removed improves IJV compression & has helped with TOS, others not. And there’s still no agreement with whether removing styloids increases instability, for some it has, but others it hasn’t!
If you have lordosis, that does seem to aggravate ES & IJV compression, so usually we do suggest members look into exercises to do to correct this which can help, but for you with your neck issues I would seek medical advice before trying this. I can understand that you want to avoid surgery, but usually with ES the symptoms only go away temporarily, surgery is usually the only permanent cure, and styloids can continue growing…in a way it’s better to have the surgery while you’re young & can heal better…
As you have IJV stenosis & sounds like increased intracranial pressure, it might be worth trying a blood thinner like plavix, brilinta or xarelto which some members have found helpful?
If you have had a CSF leak because of the high intracranial pressure, usually you would get a bad headache & would feel better laying flat, members have often had fluid leak from their nose with this.
I do get blood shot eyes regularly for no apparent reason, although I do have dry eyes which can make this more likely…some members have had random spikes in their blood pressure, possibly from an irritated vagus nerve, so perhaps that could be a cause?
I think given your complicated issues I wonder if it would be an idea to consult one of the doctors more familiar with vascular ES on our list if you’re able- like Dr Hepworth in CO or Dr Costantino in NY?
I’m sorry I can’t give you more specific answers…

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Welcome, @linkncb99! You’ve certainly done your due diligence to find out what the possible cause(s) of your symptoms are! I applaud you for trying to “leave no stone unturned”!

Ocular pressure being elevated is a common occurrence for those who have intracranial hypertension results from IJV compression.

I disagree that cervical curve correction would be sufficient to restore proper IJV blood flow. Having a proper cervical lordotic curve can be helpful to reduce vascular compression, but in the end, whether or not the styloids are contributing also depends on the thickness, angle of growth, how curved or twisted, etc., the styloids are. Thus, even a proper lordotic curve may not be sufficient to prevent the styloids from contributing to IJV compression if they have physical features that promote their contact w/ the IJVs.

Constant tight neck/shoulder muscles can be caused by ES as well as potentially cause ES, though the former is more common. Nerve irritation in the buccal area of your right cheek would most likely be caused by your trigeminal nerve, one of the cranial nerves frequently irritated by elongated styloids. I suspect your chronic muscle tightness & facial pain may have been early symptoms of ES which can onset suddenly as it did in your case. There are many stories on our forum where people have noted sudden onset of symptoms. We don’t know why ES can present this way, just that it sometimes does.

People in your situation often decide to have surgery i.e. styloidectomy w/ IJV decompression to see what symptoms reduce. Surgery does not provide instantaneous recovery from symptoms. It can take a number of months for them to gradually go away. This includes vascular symptoms. Too often people expect to awaken from surgery feeling cured, & when they don’t, they count ES surgery as a failure. However, 6-12 months later, we find they’re feeling much better. In bilateral cases, often both sides need to be taken care of to get the best results and yes, many of us have managed to return to our previous level of functioning.

Seeing a vascular neurologist will just be another expense & time sink for you. It would be a better use of your time, as @Jules suggested, to see one of the surgeons on our list who deal w/ vES especially w/ IJV compression. Getting more tests at this point would also be a waste as the doctors who deal w/ vES have their own particular tests they want done & in their own particular ways. Waiting to get the specific testing done of a doctor you feel comfortable with is most ideal. Most of the vES specialists can tell from your imaging if there is a suspected CSF leak & will direct you to further testing if they feel it’s necessary.
The surgeons who do the surgery you need are Dr. Cognetti, in PA, Dr. Costantino in NY, Dr. Hepworth in CO, Dr. Nakaji in AZ, & Dr. Damrose in CA (California not Canada).

Finally restoring your cervical curve will most likely help reduce your symptoms but there is no guarantee it will relieve the pressure on your IJV or nerves substantially enough that you feel like your old self. You will most likely need surgery to get back to what’s normal for you.

Yes, we have members who can’t sit for long or can’t sit still for long & need to be up & moving to keep pain/head pressure reduced. We’ve also had members who noted blood shot eyes as a symptom. The facial & trigeminal nerves can both affect the eyes, & since both are often victims of elongated styloids, they could be contributors.

I’d love to see your images if they’re in 3D. I can’t read 3D slices effectively. Your account should be upgraded now so you can upload images. Our system upgrades your account after your first post so images can be uploaded.

I watched your YouTube video. Congrats on your athletic accomplishments! I think Dr. Middleton is a truly remarkable diagnostician. We’ve had other members who’ve seen him as well & have gained interesting insights into the cause(s) of their symptoms. From what he said, you did get some benefit from the treatment you received from him. Unfortunately, I wasn’t able to see your styloids or get a clear picture of your IJVs & what’s causing your IJV compression. He commented quickly about your hyoid also being affected so seeing images w/ your hyoid in them would also be helpful.

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