Hello everyone - my name is Eddie, and I’m a 33 yr old living in the Chicago suburbs with 3 (going on 4) beautiful children and an amazing wife. I’ll very briefly share my story then ask a couple questions. I am very thrilled to have found this forum.
How I got here:
I visited an upper cervical chiropractor several days ago who took some flexion xrays. We’re still investigating me for cervical instability, but his first comment was: “ever heard of eagle syndrome?.” My left styloid is 3.8 and my right is 4.3 - he said these could be even longer based on calcification. I am scheduled to get a 3d CT scan with contract with a dr Koplan in chicago in the next 2 weeks (who i found recommended on this site - thank you!)
My Story:
Four years ago, life changed. After flying across the country for a baby-moon, I found myself in the ER halfway through our trip with lightheadedness, heart palpitations, and vertigo. Over the week, neurological symptoms took over, and my family thought i needed to be put in a psych ward as no dr could figure out what was going on. Some of the symptoms got slightly better over the years, but all in all - I have been debilitated, just holding onto my job as best i can. A year into my journey, i started seeing functional doctors who diagnosed me with various conditions - tick borne infections (lyme + others), CIRS (mold illness), parasites, and so on - but none of the protocols, mold tests, energetic medicines, herbs, antibiotics, brain re-wriring, etc.. ever panned out. And my story and symptoms never jived completely with any of these diagnoses anyways. I got “sick” suddenly while traveling, but not a normal “sickness” with a fever… just sudden neurological chaos ! So, i recently did a bit more digging and came across some CCI videos - now we’re here
I will list the symptoms from most to least severe - these all began within a week after that flight accross the country.
head pressure at the back of head / base of skull: Extreme - for four years, i have constantly been rubbing and massaging the back of my head. it feels like somebody tied a knot back there and fluid cannot get in / out.
dizziness / lightheadedness - often feeling like im falling over
head / neck pain
body wide numbness and tingling - face, arms, legs, etc - my whole body has been tingling non stop for four years
fatigue / weakness
TMJ symptoms (jaw pressure / popping / pain)
light / sound sensitivity
vision disturbances (eye floaters / fuzzy vision)
Gut issues - slow motility, IBS
nerve pain - occasional down the arms
Cold - my body is always cold, especially the hands
Odd tastes in mouth
Anxiety - Ive never been an anxious person, but it comes randomly and intensely. My Cortisol is high regularly.
Heart rate elevation and palpitation
Questions:
I am getting a 3D CT scan with contrast - what else should I ask for, whether for Eagle Syndrome or other structural issues - to get the most out of this experience? I am planning on getting a DMX sometime as well..
Feedback on my symptoms - from what I’ve read, some of my worst seem like they could be from Eagle Syndrome (ie horrible head pressure), but others seem to be more like a CCI issue?
Any other Lyme people here who found help addrsesing structural issues?
Any other advice on tackling structural issues would be really appreciated! I’m at the point where i want to really leave no stone unturned.
Hi & welcome to the site!
If you’ve not read this info about symptoms, there’s quite a bit of detail about possible causes here: ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
But briefly, some of your symptoms sound like they could be from vascular ES- if the Internal Jugular Veins are compressed by the styloids, this can cause head pressure, light headedness/ off balance feelings, visual disturbances & the pressure at the back of the head can be caused by other veins (called collateral veins) which swell to try and help with taking the blood flow from the brain. A CT with contrast should show this, ask for it to be timed to show the arterial and venous phases.
The styloids can compress the IJVs between them and the C1 vertebral processes, lots of members also have some instability and this can cause the C1 to shift a little out of alignment, which can increase the compression…
The vagus nerve runs alongside the IJVs, so this often gets compressed too, which can cause anxiety, heart arrythmias, possibly temperature irregularities and digestive issues like you mention. We are seeing more members with other vascular compression syndromes too, for example Thoracic Outlet Syndrome where blood vessels or nerves can get compressed at the top of the neck & into the chest, & this can cause blood flow issues with the arms, numbness/tingling etc. Might be worth reading up on as well, or it could be the accessory nerve which can cause shoulder/ arm pain or weakness…
Given that you are having some visual disturbances, it might be an idea to see an ophthalmologist too, as when the IJVs are compressed it can increase head pressure (intracranial hypertension) which can put pressure on the optic nerve. It’s a good idea to check if the nerve is being compressed as this could possibly cause permanent damage if left untreated…
Unfortunately it’s hard to tell what symptoms are caused by ES, & what might be CCI as there is quite a bit of overlap…It’s best to get as much info as possible so if you can get a DMX that would be helpful, and then to get at least 2 consultations from doctors as to the best way forward. As it sounds as if you could have vascular ES, & if your CT confirms this, then it might be best to see one of the doctors most experienced with this if you can- like Dr Nakaji in AZ, Dr Costantino in NY, Dr Hepworth in CO, or Dr Cognetti in PA.
I don’t know much about the Lyme symptoms, we have had some discussions about that & mold sensitivity, so you could use the search function to look up discussions if you don’t get many answers…
I hope that after being dismissed for quite a while, you can get to the bottom of what’s causing your symptoms!
@eewilliams93 - It sounds like you’re being very thorough in checking out what could be causing your symptoms. It’s such a shame that so many of our members have had to do this themselves vs having the doctors they’ve seen take an interest & do the “leave no stone unturned” aspect of the search for a cause(s) vs leaving patients to have to do this for themselves.
@Jules has given you very good information to help you continue on your journey to a diagnosis. I will say that we’ve had quite a number of members who’ve had sudden onset of their ES symptoms so that’s not super rare. We wish we had an explanation(s) for why that happens.
We’re here for you along your whole journey back to health.
Thank you @Jules and @Isaiah_40_31 - This site has given me a lot of knowledge, and your responses have helped me organize my thoughts / craft a plan. I have my 3d CT scan soon and will check back in. Happy holidays!
I would add that you really should see a traditional osteopath for omt (hands on treatment). You can find a list on osteopathic cranial society. Based on what you listed lyme sounds unlikely and more of a throw away diagnosis given at some point.
thanks @Silverstrand - Curious how a traditional osteopath would be different from the upper cervical chiro I’ve been seeing? i had my first adjustment a week ago.. he practices NUCCA / atlas orthogonal techniques.
@eewilliams93 When I reached out to Dr. Nakaji’s office, they required CTA Head (CPT 70496) and CTA Neck (CPT 70498) with thin-slice imaging for VES consultation.
