I really look forward to participating on this forum. There is so much here I can relate to, but I’ve been unable to read through as much as I’d like due to a recent illness and ongoing time limitation. Unfortunately, over the years I’ve gotten to the point where I’m lucky to have even a couple of hours without debilitating cognitive problems every day.
I do not have an official diagnosis, and my styloids are only 2.5 and 2.9 cm at most recent measure. All of my scans have come back normal, except for results from Caring Medical in Florida which I paid for out of pocket after coming up empty in Canada. They recommend a styloidectomy that I’ve not been able to obtain.
I’m worried this is the wrong place still, and it might not be Eagle’s, but it sure matches, and is by far the closest match of any other diagnosis I’ve seen.
A string of stroke-like episodes, a few major ones and many minor ones, followed by months of brain fog.
Brain-fog and other mild symptoms at all times with different neck and shoulder positions. There usually pain on the left side under my ear (near styloid) before a string of episodes, and I can sometimes feel a buildup of fluid or something in that region when symptoms are bad.
- Stroke like episodes
- Usually 10-45 minutes, sometimes much less
- Gets better if turning head to the right or hanging upside down
- Symptoms fluctuate together (all get worse/better together, ups and downs during episodes)
- No rhythm, cannot sing, hum, think of, or tap out a rhythm
- Left-sided numbness
- Trouble with interpreting vision in left field of view
- Trouble finding words, eventually cannot speak
- Dizzyness, but not vertigo
- Trouble thinking, holding thoughts in head
- Mild confusion, everything seems a little uncertain
- Forget how to use things that are second nature (how to open and app, unlock phone, use remote)
- Brain fog and mild issues
- Trouble with knowing what things are or where they are in the left field of view
- Trouble finding words sometimes
- Trouble with concentration and memory recall
- No working memory
- Loss of inner monologue
- Mild numbness at times on the left side (like I’m floating if lying on my left)
- No initiative
- Dampened emotions
- No self-awareness
- Trouble forming onto or holding onto thoughts
- Left side of body doesn’t feel right, a there is a lag in movement
- Other notes
- Heart arrhytmias (PVCs) increase drastically from close to zero to 10-30% just prior to and after the first episode of the day, often after breakfast or a bathroom break.
- Pain in neck, like carotidynia, prior to a period (weeks to months) of increased severity and stroke-like episodes
- Feeling of something in the neck just below ear, like a foreign object I want to dig out.
- Neck rotated left or flexion (tilted downwards)
- Looking down and doing things with my hands (most household chores and cell phone use)
- Poor posture, such as slouching or lounging on a sofa (minor but builds up)
- Bending over to pick something up
- Left shoulder moving forwards
- Swallowing (more minor but builds up)
Things that make triggers more sensitive:
- Eating, and after eating
- Not exercising recently
- Previous episodes
- Heart PVCs
- Poor sleep
- Tight neck muscles
- Many more things
All scans on back with neck at least slightly extended, which is a decent recovery position for me (fewer symptoms, recovery from episodes).
Hypoplastic segment in Circle of Willis:
Left side (worse side):
Right side with some jugular vein flow in 2018:
Right side in 2022 (no flow):
Best guess at what is happening
This is a self-diagnosis, and while I’ve spent hundreds of hours reading medical and radiology material, there is still a good chance many of this is wrong or poorly interpreted. I’d rather be diagnosed by a doctor. However, even earlier on after the first few specialists, it felt like I’ve been considered more a nuisance to send away than a patient to treat, and now even my family doctor just shrugs and says they’ve tried everything, and dismisses results from Caring Medical.
My styloid is blocking my Internal Jugular Vein (IJV) on both sides, causing increased pressure and buildup of toxins in the brain.
Very likely, when rotating my neck it is also interfering with the carotid artery, causing my stroke-like episodes (low-flow transient ischemic attack (TIA) caused by no or reduced blood flow to certain regions of the brain). After TIAs, it is possible to have a few months of latent issues as the brain recovers, similar in some ways to concussion. Since I have very low flow in one part of my brain arteries (Circle of Willis, one segment at ~99% reduction), low flow causes these TIAs instead of all-brain issues like fainting.
Adjacent to both carotid and the jugular vein is the vagus nerve. This controls many things, including heart rate and relaxation/anxiety levels. Usually, people complain of anxiety, but for me it seems to go in the other direction (which is possible), reducing my blood pressure, possibly causing my heart arrythmias (0-30% PVC rate), and causing more low-flow issues in my brain. Testing at Caring Medical demonstrated that my vagus nerve has been eroded to about 1/2 normal width on both sides.
Testing at Caring medical also demonstrated that my vertebral artery flow is reduced and abnormal in multiple head positions (meaning even less blood into the brain), and confirmed that both my right and left IJV have significantly reduced width, at times having zero cross sectional area, in many natural neck positions.
I know this is a very long post. Thank you for reading through!
Edited (same day)
Adding a few Slicer pictures in case they can help visualize things, both sets from CTA imaging. All are cropped to remove the jaw to see things more clearly. Unfortunately this also cuts out some of the external arteries and veins. If I interpret this correctly, you can see the blockage of the IJV and collateral expansion of the vertebral veins to compensate, as well as clear images of the styloids.