New user, any opinions on CT images and best attempt at self-diagnosis?

[Mclean]

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.

Symptoms
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)
  • Dizziness
  • 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.

Triggers
Immediate triggers:

• 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:

• Heat
• Inflammation
• Eating, and after eating
• Not exercising recently
• Previous episodes
• Heart PVCs
• Poor sleep
• Tight neck muscles
• Many more things

Angiogram scans
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.

Thank you

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.

2018 Left:

2018 Right:

2018 Front:

2022 Left:

2022 Right:

2022 Front:

[vdm]

I’ll try to be very brief.

First, your self-diagnosis sounds logical and very possible. Too many doctors in Canada, from my personal sufferience (suffering experience) are working as if they were going through the flowchart where the final point is either some very well known condition or “anxiety/depression”.

Second, in addition to possibly symptomatic (this is highly debatable among doctors and surgeons, but I am a believer) IJV compression, there may be
a) bow hunter’s syndrome
b) neck instability at the C1/C2 level or skull/C1 (so called AAI and CCI - atlanto-axial instability and craniocervical instability respectively)
c) stiffness/instability at C6/C7 level (where vertebral arteries enter the cervical segment of the neck) thus blocking blood flow through vertebral arteries
d) TOS - thoracic outlet syndrome, vascular version
e) Military neck (aka loss of cervical lordosis, or flat neck) which ruins whole neck movement dynamics and makes neck muscles sporadically compress various blood vessels
f) brainstem compression, esp.if the symptoms can suddenly start after holding the head down

If you are able to easily and consistently reproduce onset of symptoms, I’d suggest you to get a CTA or CT with contrast in that position where it triggers relapse.

Update: do you have any sort of tinnitus, whooshing in your ears, double vision, or can you hear your heartbeat in the ears when the neck is rotated?

Update2: how are your rotator cuff muscles working? Any stiffness in shoulders, or painful/limited scapula movement?

[Mclean]

Thank you for your ideas!

(Update:)
I’ve indeed been pushed hard into the anxiety diagnosis at the last step, which is very bizarre because I almost never feel anxiety. Functional Neurological Disorder is one diagnosis I’ve had, one that has caused me a lot of harm since whenever I ignore symptoms and do what the treatment suggests I get much worse. Only by being careful with neck position can I avoid the worst of symptoms. In fact, getting anxious or emotional in any way that raises my blood pressure actually seems to help, but I’m also less likely to be slouching at the same time.

Caring Medical (which really push cervical instability and prolotherapy) only detected minor neck instability.

I forgot to mention that I can reproduce the stroke-like episodes by pressing gently to moderately hard on my carotids for 30 seconds or longer, or by looking down and to the left long enough (again roughly 30 seconds or longer). I don’t do this anymore for obvious reasons.

I’ve been trying to get a positional CTA or CT with contrast since 2014, or even traditional angiograms or trans-cranial dopplers, but my doctors and neurologists would only prescribe fixed position CT and MRI scans. Any ideas on how to go about this? I was looking at options in the USA but it seems complicated to try and figure out. When I discovered Caring Medical I went there instead.

Response to update1:
I can hear pulsile whoosing in my ears with my lower jaw extended, but this helps with symptoms. When I do this I can sometimes feel a draining sensation from both sides of my neck into my chest (sort of like what an IV feels like when the fluids first go into your body).

I hear a ‘pop’ like sensation at times as well after neck movement in my left ear. This is usually after I’ve been having worse symptoms for awhile, and after the ‘pop’ I tend to feel a little be better for a short while. I’ll sometimes hear multiple ‘pops’ if I’m have a rough day and have difficulty holding my head up (as I slouch and straighten, pops on straightening.

Response to update2:
I have very tight neck/shoulder/back muscles, with a bit of a hunch and forward head. Shoulders are a little stiff, but not really painful. Neck is very stiff in front and in the back, with limited motion. Partly because I’ve been trying to hold my head at least slightly to the right for years to avoid symptoms, as it is one of the most effective things I can do.

[vdm]

@Mclean

I’ve been trying to get a positional CTA or CT with contrast since 2014, or even traditional angiograms or trans-cranial dopplers, but my doctors and neurologists would only prescribe fixed position CT and MRI scans. Any ideas on how to go about this?

Most of my CTAs were taken at ER. Including the positional one. When I went to ER that time, I told the ER doc that I felt like passing out when I rotate my neck, and please can I get a CTA in that position. A bit forth and back and they did it.

Whooshing sound is said to often be pulsation in the IJVs, which may be true may be not. Mine has been gone after the bilateral styloidectomy. I had one IJV completely compressed since 2020 and the other compressed maybe 50-75%.

Tight shoulder muscles might be a sign of weak rotator cuff muscles, stiff biceps/triceps and especially deltoids. Also weak back muscles. If you have a chance, get a professional massage on arms and shoulders (but not on the neck) and see if it helps.

You can check some muscle diagrams in some of my self-physiotherapy-advocating posts . Long story short, weak postural muscles (long decades at the computer leaning forward, and one arm extended further than the other to hold the mouse?) force “power” muscles into spasms in order to hold the body in shape and prevent from collapsing into a pile. Neck is full of strong muscles, and some of them may literally pull the head back too much.

Question for those with military/straight neck (loss of cervical lordosis)

Hi, Just a question/observation from my side: do you also get some relief from symptoms, esp. jugular vein compression symptoms, while lying on your back and holding your hands under neck/just above the neck, like in this picture? UPDATE: that’s a serious question, no joke, despite the picture (couldn’t find a better one quickly to fully explain what I meant). [stock-photo-young-man-in-pajamas-jam-sleep-mask-rest-relaxing-home-with-lies-wrap-covered-under-blanket-duvet-2008513400]

So why calcifications sometimes happens

Original report on nature.com website: Prominent exostosis projecting from the occipital squama more substantial and prevalent in young adult than older age groups | Scientific Reports

My toolkit to self-release tight muscles

Those who know about my situation, most likely have heard that I do a lot of self-massage/stretches (a few hours a day at least). Good news is that I finally managed to regain good amount of my neck and spine’s mobility about four-five months since starting this. It’s fantastic to wake up in the morning and feel that neck isn’t painfully, totally stiff. It’s a brilliant feeling when body now starts attempting to relax and do some “muscle twitches” before falling asleep… Here in the pic is my “t…

[Isaiah_40_31]

@McLean, I had trouble w/ my blood pressure dropping & heart rate elevating or having palpitations when I exercised. This combination would cause me to get dizzy & feel like I would pass out. Once I understood what many of the vagus nerve effects are on the body, I concluded it was the cause of my symptoms. We know that in most people, the vagus nerve is irritated by ES but it seems symptoms vary from person to person. For most there are several indicators of vagus dysfunction such as gastrointestinal issues, anxiety, breathing difficulties, heart rate, blood pressure, vocal loss or loss of vocal range, body temperature regulation, & more. My symptoms mostly disappeared once I was healed from my surgeries.

[MsBearshark]

Hi Mclean,

Welcome to the forum, and I’m so sorry you’re dealing with such debilitating symptoms. That said, I can certainly relate to many of these issues, and encourage you not to take apathy as an answer from your doctors. It took me 10 years of symptoms, 3 years of self advocacy and nearly continuous doctors visits, 3 primary care doctors, 3 pain “specialists”, 2 sleep studies, cognitive studies, heart rate monitors, ultrasounds, many cardiologist visits, 9 different physical therapists, massages, chiropractic work, craniosacral work, chinese herbs, acupuncture, more drugs than I can name, 6 neurologists, 2 ENT surgeons, MRI, MRA, MRV, CT scan and finally a CT scan with contrast and the right referral to get answers to even the most basic questions about what has been going on with my body. I’m still not sure if I’ve found the answers, as my recent styloidectomy didn’t resolve my symptoms, but at least I have finally found a doctor who has some idea of what might be going on, and seems to be committed to sticking with me until it’s all figured out.

Hang in there and keep fighting for yourself!

Beyond that, with the information provided by Caring medical, and based solely on my own experience, the next best step may be to get an IJV ultrasound done. Dr. Hepworth told me he only trusts one place here in Colorado to do it right, so it may be difficult to find a facility familiar with this particular testing. However, if you can find a place that offers IJV ultrasounds, request one with positional changes. This will allow them to measure the actual blood flow through your jugular veins with your head in different positions. Make sure they include the position you know to cause issues for you.

I’m not sure if ultrasounds of the carotid artery are also available, but maybe someone else on this forum can chime in about that.

Hang in there! You’re not alone.

[Mclean]

@Isaiah_40_31 I also have some problems when starting to exercise. I’ve learned that I have to be relatively symptom-free before starting or I’ll get dizzy and worse very quickly. It’s one of those things that makes it very difficult to self-improve since when I can exercise it helps a tremendous degree over time, but when I’m in a rut it is very difficult and at times impossible to dig myself out through exercise.

I’ve tracked myself with a heart rate monitor over a few months, and when symptoms come on my heart rate drops ~20bpm and I get a lot of skipped beat clusters (3 beats – pause – 3 beats --pause – repeat), often before I notice anything. Also, a lot of whatever the opposite of anxiety is, which is also debilitating: low energy, cannot react or do things easily, just in passive mode all the time, house could be burning down and I just won’t care. Vagus nerve stuff, but maybe in the opposite direction than normal?

@MsBearshark Thank you for the support. I also have a long list of trying to get support, going on 17 years now on reflection. Hope to post description soon. Actually went to Caring because they did IJV/Carotid ultrasounds in different positions, couldn’t find anyone that did that here in Canada. Actually I think I might have been really close to an earlier diagnosis once with an ultrasound technician that was almost panicking because they couldn’t find a good flow signal, and I was having symptoms at the time. They moved me around to lie in many different ways and with different neck positions. Eventually I felt better at the same time they finally found a position to get some images. Report came back completely normal of course, and my doctor told me all of my neck vessels were perfectly fine and there was no reason to worry about blood flow.

[Isaiah_40_31]

@Mclean - the story of your experience w/ the US tech in Canada sounds very familiar. Many of our members who have significant IJV compression have been told all is well & jugular flow is normal when tested. The issue, as you found, is the flow can be normal when the head is in “the right” position, but horribly abnormal when it’s not. The position that causes abnormal flow is what needs to be documented as well as that for normal flow. It’s too bad that people in the medical field aren’t taught to look/think outside the parameters they’re used to using.

Your styloids look thick at the skull base end to me but as you noted not exceptionally long. Thickness w/o length can definitely cause symptoms & compression.

[Jules]

I agree with your diagnosis, & having had bilateral jugular compression I can empathise with many of your symptoms…keep pushing for yourself & I hope you can find someone to help, or be able to travel to the US to see an experienced doctor…

[Snapple2020]

well said MsBear…Ive never seen someone quite put the long list of specialists together like you. Its really sad that we all have to go through this…going from doctor to doctor.

Ive had the ultrasound for carotid and jugular. You could normally find them at a vascular center or though a vascular doctor/surgeon. Most major medical centers would have this. Having had this and upright MRI’s, the technicians usually start with doing the standard positions first…that is what they are used to doing. They usually save the more “dynamic” positional imaging until the end when if they are backed up and running late, try to rush it and in my case didn’t spend much time doing the positional stuff that really triggered my symptoms. I too have had some of the same issues of not catching it when I was fully symptomatic. As Isaiah pointed out, good technicians performing the tests are so important.

You’ve got some good advice and direction Mclean.

[MsBearshark]

Sorry to hear you couldn’t get good imaging with the jugular ultrasound, but it may be worth another try. If they found good flow in one position, you could ask for measurements with incremental movement of your head away from that position and see what they come up with. If the blood flow really does decrease as dramatically as you describe, then you should be able to get that demonstrated with the right assistance from a good ultrasound tech. I know it’s frustrating to repeat tests that you already completed, but if they didn’t make the effort to check and document what is going on in positions that cause problems for you, it’s probably worth trying again.

[dnnhsbg]

Your cta shows almost a complete compression. An axial view at the c 1 level should show how much they are closed. Thats the easiest way to tell.

[Lababila]

Your symptoms are exactly like mine. How are you doing today

[Mclean]

@Lababila Last year has been a struggle. It’s been next to impossible to communicate or do much of anything. Dizziness from daily living and brain fog after neck pain or attacks is near constant, so I’m forgetting constantly to do the things that help, leading to a never-ending feedback loop.

Full compression of both IJV has been confirmed by contrast CT of cerebral veins, even when lying down now (testing posture). Was able to consult with a surgeon for a styloidectomy on one side finally after another 8 months on waiting lists (IJV imaging then consultation), and now on a waiting list for 4 months hoping for a surgery date soon. My brain is being drained only through enlarged veins in the back of my neck. I can feel better drainage in very specific and hard to maintain neck/head/chest/tongue positions, and some mental clarity returns afterwards, but cannot maintain this without full concentration. Years ago this was easy, just make sure I kept my head a bit to the right and didn’t look down.

[Jules]

So sorry that you’re feeling so rough, but good that you’re on a list for surgery. Who’s doing your surgery?