Mentally its hard to wrap my head around

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Hi everyone. Newish here first time post. Just recently diagnosis (I actually used chatgpt and doctors have confirmed). I dont know if its just because I dont see many people with similar cases like mine or what but this has mentally been hard to accept. So i figured i would share my story and once sugrey is complete i will update if it helped…

Some of my symptoms started years ago. But my most concerning started Jan 2024. I woke up and I thought I was having a stroke. Left sided numbness to my face, arm, and leg. It was hard to get my words out. Not slurred but to get my thought to become words was difficult and pronunciation was difficult because my tongue was numb. I went to the ER. Was seen as code white… and they found nothing. I was there for several hours and before i left i was back to normal. They said to follow up with neuro. These symptoms but much milder would happen on and off before i was seen by the neuro doc. About a month later again when waking up same thing but in addition to the numbness my heart felt like it was going to pound out of my chest and i was also having chest pain… so back to the ER… this time they worked me up for a heart attack… again nothing. About 10 or so years ago my heart rate dropped to low 30-40 (continuous not just occasionally) and was causing fainting. No one could figure out why all of a sudden my heart rate was now running low. My body has adjusted and i no longer faint with it. I also can not get my heart rate above 130s even for stress test and running for 12 min… it just doesnt happen. I bring this up because when these heart pounding episodes hit my heart rate will get up to the 130 to 140 which may not seem extremely high but when you run low this feels extremely fast. And now that i have been paying more attention i think thats what happened that morning and caused the chest pain.

During 2024 i had so many test done. I was being seen by neuro, cardio, a sleep doc… all the test were normal. While all this was going on I had finally been seen by an ENT for a lump I found on my left tonsil in 2023. He biopsied it and said just chrinic inflammation. Little did i know at the time this was not the case.

I continued to have these episode some would last days some would last mins but at some point they would go away then come back.

Other symptoms I have had for years is brain fog, feeling like i am walking on a boat during a storm, dizziness, nausea… especially when at work. I have a very fast pace job where i am up and down, leaning over, i am constantly moving.

But as 2024 progressed i started to get more symptoms. Ear pain, jaw pain, pain if i swollowed something and it touches my tonsil. Neck and shoulder pain. I new i needed to find a new ENT but where i live it almost a year to get into a decent ENT. And honestly i had so much going on i just pushed it to the back burner.

Now for Jan 2025. Almost 1 year to the day of my first episode and i woke up with it again. Left sided numbness, weakness, issues with my speech and once again heart rate, but this time my watch had gave me a heart rate alert because my heart rate was in the 20s I then confimed it with a pulse ox and blood pressure machine (bp was also very low 80/40s) then maybe 30 mins later it was up in the 140s again. This time i didnt even bother going to the ER. The feeling of the end being near is a real thing. That impending doom that i have heard others talk about, its a crazy feeling. It has gotten to the point where i feel doctors dont even listen, they have made comments and i was like im just going to die in peace on my couch. This time though the numbness never went away but it so wierd because i will have good moments when its not bad then bad moments. I had made an appt with my PCP, because i am convinced my neuro was just throwing spaghetti at the wall at this point and honestly i cant afford random test (it got to the point where he was testing for narcolepsy cause i said i nap sometime). I needed anwser. Well when my PCP walks in he sighs and said im not sure why you are here i have done everything i can for you. Now im not bashing him. He really has listen to me a lot. But it didnt change the fact of feeling defeted, soo i went home. A few days later i decided to put my scans into ChatGPT and low and behold Eagle syndrome popped up.

I had all but given up, but this lit a spark. Now im a researcher by nature and educational background in health science so i took a deep dive. Took all the info i found to my pcp who i wont say agreed but basically said he has never heard of it and ask how he could help.

Now my symptoms are every day. I just have better times then other. I can seriously feel horrible for just 5 mins a day or for 3 days straight. It changes… everyday.

Since then i have had 3ish consults. One locally and 2 others from the list on here (One says its not the type he works on).

I guess the part thats hard to wrap my head around is if the most concerning symptoms are actually cause from it. No doc wants to say yep that sounds like it, and in all reality i cant really blame them.

What i do know is that it doesnt appear to be compressing my jugular, but my ECA and ICA are close on my right and my left side my ECA is “wrapped” around it. All of my symptoms are on the left but if its compression to my ICA then it would have to be coming from the right to cause the worse of my symptoms. But i do believe my pain, dizziness brain fog is coming from my left side. The doc did say that the heart rate issue could be coming from vegus nerve compression though not sure what side it is on. Also it feels like its about to poke its little pointy head through my left tonsil.

So i will be getting both removed. Now its a battle with my insurance since there is someone here in town that will do it but i just didnt feel comfortable with him (no crainal nerve monitoring, will only remove part of the styloid and wont do my right side) and also the doc i have decided to go with isnt contracted with insurance.

In the end there will only be one way to know if these symptoms as crazy as they sounds is all cause by my styloids. I hope if there is someone in the same boat as me finds this information helpful. Also dont give up. I had all but given up, in fact i had come to terms that it might just be my time. I was tired of the battle, i was tired of being looked at like im crazy.

Im only at the beginning of the surgery journey. So i can update if anyone would be interested as things happen. And i will try to make sure i post if the surgery helps my symptoms and if so which ones.

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In case your wondering i have been researching stylocarotid artery syndome (SAS)

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The AI program you are using should be able to help you develop a letter to deal with insurance company. I suspect your local Doctor isn’t good enough for what you need.

Have you had an MRI to see if this has caused your stroke like problems visible on MRI? I just had a 3dCISS MRI and it showed quite a few things.

Also, ask someone if you havent already about if it is possible you have Vasodepressor Syncope (I think called something else these days).

There was someone here who had a lot of problems with heart beat but I don’t know what happened to her. Someone else can chime in on that one.

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I have. 2 actually one in jan 2024 one in july 2024. For both head and neck. Also have had cta of head, neck and chest. All are normal. I have seen 3 cardio docs all were not worried. One told me to eat more salt :laughing:

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there is a case study I thought of while reading your post. I used it to try to get dynamic testing but I couldn’t find it just now. AI might find it for you.

The man was having stroke like symptoms but they couldnt figure out the issue. They needed a dynamic test to figure it out. His were severe. Like arm goes limp when turned head.
If you can find that study you might compare his images to yours.

You are definitely going to need to build a case to get approved by insurance for out of network treatment.

I asked Grok to find the case. I think this is the one I am thinking of but not sure. It seems like my print out had a lot more info.

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@Deemarie - First off, good for you for figure out what is causing your symptoms when your doctors couldn’t. You’re a great self advocate!

Your symptoms are very typical of stylocarotid syndrome which causes intermittent stroke-like symptoms & sometimes the heart rate symptoms you’re noticing though the heart rate & blood pressure symptoms are more often caused by the vagus nerve being irritated by ES it could be both the carotid compression & vagus contributing in your case. I had BP problems & heart rate problems as some of my ES symptoms. They were different than yours but did go away after my styloids were shortened.

I’m going to guess that you awaken w/ the stroke-like symptoms because as you sleep, your neck ends up in a position that is bringing your styloids into contact w/ your ICA/ECA on the left or both sides. The symptoms of both stylocarotid & stylojugular aspects of ES can be stimulated by moving the head into certain positions like looking up/down, left/right, or on the diagonals. For our members who’ve had both ICA/ECA or IJV stenosis or irritation by the styloids, we’ve suggested getting a soft neck collar to help hold your head in a more neutral position so you don’t look up or down & are reminded to turn your whole body to look left or right vs only turning your head. Something like that could help reduce your symptoms until you have surgery. Amazon has a nice selection.

Your styloids are quite long, the left one in particular which is likely why it’s causing your worst problems. Because stylocarotid problems occur lower in the neck, most ES surgeons are able to take care of it by simply doing a styloidectomy & getting the styloid away from the ICA/ECA in question. IJV compression is another story as it generally occurs up close to the skull base so more specialized surgery is required to decompress the IJVs.

Based on what you said about the doctor you’re planning to have do your surgery not taking insurance, I’m guessing it may be Dr. Osborne. If so, he’s an excellent ES surgeon & you should have a very good outcome.

Recovery from ES surgery can be slow taking a number of months so you’ll need to be patient during recovery. Injured nerves & vascular tissues take their sweet time to heal. Recovery can be up & down, but you’ll see good improvements as the months pass. We’re here to encourage you & answer your questions along the way, too.

Please let us know when you have a surgery date.

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I think this is the study you maybe talking about. Unfortunately I havent had any dynamic imaging done. My I am hoping the insurance wont need it and the doc doesnt seem to think we will, but my pcp said he will order an additional testing if needed. So i am kinda in the waiting boat to see with insurance.

I totally agree about insurance. I definitely feel like it will be a battle.

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Thank you for your response. I think thats where im getting confused/concerned. I do believe my left is a problem child, but with typical strokes its the opposite. right compression = left body. And looking at the scans theres nothing on the right that scream hey i am also a problem. Another reason i think it so hard to wrap my head around this. I am really hoping that this is the problem since its the only thing at all that had come accross as being a possible anwser. But i am also worried i could be grasping at anything at this point since i have had zero anwsers.

Great idea on the soft collar!

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Your styloids look really long! As @Isaiah_40_31 says, well done for working this out yourself & for not giving up! I hope that you’re able to get the testing done that you need & see an experienced VES doctor…would Dr Nakaji be a possibility otherwise, here’s a link to @aluminum 's post about his surgery & experience:
Surgery with Dr. Nakaji yesterday (4/14/25) - Post op report - General - Living with Eagle

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Thank you for your response… Dr Nakaji was the first doc i went to after reading his research. Unfortunately he didnt accept me as a patient. I think its my scans dont show compression, and i dont have dynamic scans done to confirm.

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Hi Deemarie,
Sorry to hear that Dr. Nakaji did not accept you as a patient. I hope that its possible for you to find more clear concrete answers and possibly he will reconsider, because he really does a great job.
Those episodes are quite frightening, and definitely indicate that something is very wrong! I agree with the soft collar recommendation. I woke up during panic/rapid heart rate episodes before, very likely from odd head position.
It’s great to see that you are maintaining a positive attitude despite your more unique and mysterious case. It can be an interesting puzzle to solve, especially when you are the one inside the body experiencing the symptoms.

It does sound like a dynamic scan could provide some answers. But I do think there are a few avenues to explore with the current imaging you have. Of course I am not a professional, but it sounds like you may be dealing with spinal cord compression. I’d be curious to see a Sagittal view of your CT at midline. From analyzing my own scans, I saw that the position and size of my styloids were mechanically “clocking” my skulls position to C1 and by extension, C2 and so on causing a chain reaction down the spine. It could be that certain head positions, or certain periods of flareups are caused by the “dens” of your C2 being pressed into your spinal cord by combination of different factors. From the small view I see of your dens, it does look to have extra mass, more on one side than the other. This could explain your one sided symptoms if it was putting more pressure on one side of your spinal cord. I’ve read is possible for the ligaments attaching to the dens to calcify as well. This is all just speculation. See: Crowned Dens Syndrome

I say this because I believe if there was a clear vascular problem at the site of the styloid I do believe Dr. Nakaji would have followed up with you more in-depth. I do not say this to dismiss your intuition about vascular/styloid concerns, those suckers are long and likely causing you trouble, and you know your symptoms best. I would not be surprised if Dr. Nakaji is looking to take on more clear cut cases given he is still in the early stages of his new private practice, he is likely juggling huge decisions on top of his surgical cases. Yours appears to be a bit more nuanced.

Would you be interested in uploading your full scans?

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Thanks for so much detail. Yeah i was concerned that because nothing said obvious compression he was good so i moved on. I do have a pcp appt Friday so im going to request a dynamic cta. Ai also found something on my brain mri recently (right thalamocapsular region) that isnt in any reports. AI says it could be caused by chronic low flow hypoperfusion. So now im investigating that so hopefully it will help my insurance coving the cost with Dr Osborne.

I would love to upload images. Do you just want different pics of my 3d CTA or is there a better way?

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It can be a bit of a process but if you have a copy of your study (EDIT: you can compress the folder containing the images into a .zip folder and upload it all at once) here: https://www.dicomlibrary.com/
Then you can post the link here and others can download them and view them in their own software

There is a few tutorial posts on this site, just be sure to use the anonymize option to keep your personal information private(EDIT: it appears it anonymizes by default). The upload can take a long time.

In the mean time, I’m most curious to see a view like this:

ct midline
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I see what you mean. I maybe doing it wrong but it looks like you need to upload each image separately?!?

In any case I was able to find something close. Let me know if this is what you need: https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.20250416154754663.91058577077539766857

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You should be able to upload all at once in bulk by creating a .zip folder

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Got it. Its processing right now. Ill link it once its complete! TY

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(Link deleted)

Thanks for taking a look!

Edit to add: I know its not neck but i did have sx - L4-L5 decompression, laminectomy and facetectomy.

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I swear you are a walking advertisement for the team that operated on you. Part of your remarkable recovery may be due to your age but it’s like this surgery was just a little blip for you.

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@Deemarie - Dicom library didn’t totally anonymize your images. There are two on the page that comes up when I clicked the link that have all your info on them . I don’t know if there’s a way for you to edit them or for you to just pull out the images you want to post. I’ve deleted the link to protect your privacy.

I do notice that you have no lordotic curve in your cervical spine which may partially be due to your prior neck surgery. Unfortunately, having a straight/military neck naturally brings the styloids into closer contact w/ the nerves & vascular tissues in the area. Cervical lordotic curve can be restored w/ gentle PT exercises but it can take a number of months.

Regarding Dr. Nakaji, I’m also sorry he turned you down, but I believe he specializes in IJV compression & am not sure if he will operate on a patient who doesn’t have that problem. I expect you’re correct, though, that because your imagining doesn’t definitively show compression of your ICAs, he didn’t mentally extrapolate to imagine what your styloids could be doing to them w/ head movement. Also, as @aluminum said,

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Thank you for sharing; looks like you have some high quality images.
I have taken a look and while I am a complete amateur, wanted to point out a few things I notice. Honestly your vascular anatomy looks beautiful, Im jealous. I do think that the styloids are the source of your problem, with a round-about bit of nuance
What I would theorize is that due to some anomalies in your cervical vertebrae, and their orientation to one another while under suspected tension from the styloid-group ligaments/muscles, produce significant spinal cord compression between your odontoid process of C2(dens) and posterior arch of C1. In theory this could result in CSF compression or intermittent blockage, increasing intracranial pressure, which could decrease cerebral blood flow, while also straining the autonomic nervous system that functionally controls blood pressure. So while the vascular structures themselves look fine, this could explain the vascular symptoms you have

Starting from the skulls relation to C1-

Skull to C1
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Overall your skull is riding very far forward. Your left side occiputal condyle bearing surface seems to even be riding up and over. I would take this as evidence that the remaining uncalcified stylohyoid ligament/muscle between your elongated styloid and hyoid bone are under a good amount of tension, constantly pulling force on your skull base forward and down (relative to the hyoid bodies and not subsequent vertebrae, so they are just along for the ride

Your C1 looks like it is riding as far back as possible in relation to C2, looks like it could even shift 3mm forward and be in average alignment.

c1 to c2
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tippy toes
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I also looks like its angled forward, like its up on its tippy toes.

This angularity is probably due to tension on the skull from the styloid muscles, but is likely paired with some ligament injury/instability. Regardless of the cause, this angularity is causing posterior arch of the C1 to line itself up with the thickest part of the C2 dens.

Dens to atlas arch
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At this same level, the distance in the spinal canal between the Dens(C2) and C1 posterior arch is approaching concerning stenosis at 14.5mm (According to chatgpt: 17-25mm = normal, 13mm = concerning, 10mm = critical). It looks like its under pressure here because its squashed out of round. I believe the lighter gray space to be CSF buffer protecting the cord. Keep in mind that the C1 is already jutted back 3mm and could potentially shift that far forward, closing off this space to 11mm past the concerning level and reaching critical and very symptomatic levels which do align with almost every symptom mentioned, even the chronic low flow hypoperfusion, as this is all happening at the same level which the vertebral arteries are entering the spinal canal and they are heading straight for the cerebral region
Even in this most open state it looks like the cord is slightly bulging out the back right below the concerning area.

slight bulge
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I would wager than neck flexion or head hanging back is a very bad position for you

dens to c1 interface
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The dens to C1 interface looks a bit abnormal, like its been under pressure for some time. I imagine that different muscles may be spasming to keep the canal space as open as possible for the cord, and this is resulting in constant pressure in this area as it is the physical barrier for C1 and C2 departing further from each other and reducing stenosis. Its almost like it ground itself a into a little divot. This explains why C1 is jutted so far back in relation to C2. It could also have calcified and fused together, range of motion or lack thereof could be determine on a dynamic scan.

rough rotation
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If its not fused, and the theory that the styloids have significant tension on them is correct (Something that might be hard to prove, but may be possible on dynamic scan) Then if that theoretical tension was released, and there is no underlying instability, it could reverse the chain reaction, with the key result of C1 rotating back off its tippy toes, and with it bringing the posterior arch in-line with a portion of the dens that is further away. Overall giving your current vertebrae anatomy a chance to align itself in a way that best cradles the spinal cord. It could also open the door for instability to cause more problems if it is underlying.
Kind of a chicken vs egg situation..

Again this is all just speculation (By a random uneducated internet stranger who is high on painkillers recovering from his own surgery), but if it makes sense to you, may want to see what a knowledgeable professional has to say about it, or possibly consider a Cine MRI (a.k.a. CSF Flow MRI) I think spinal cord compression may be the most demonstrable issue. Tying that back to styloids Im not sure
Could still have vascular compression from ligament/muscles that aren’t seen on the static images, so dynamic CT is a good idea too
I say these things just to share my perspective and encourage you to seek more diagnostic tests and imaging because concrete evidence will help in your case for insurance coverage, and determining the right next steps.

EDIT: I have seen the post that dicomlibrary did not fully anonymize your study and have deleted all copies I downloaded before link was removed.

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What can I say, Im a happy patient! Just want to spread the word :smiley:

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