ive had issues for a few years since a tonsillectomy when i was 15 in 2018. a year after my surgery my symptoms started. at first i had vision issues like flashing lights and hazy vision with large black floaters and severe vertigo. as the years when on things got a bit better until right before my thyroidectomy in fall of 2023 when i started having ice pick pains in the side of my neck.
Over the past year and half Ive had really severe cognitive issues with 11/10 pain ice pick headaches at my temples where the pain goes down my neck into my collar bone it feels like something is trapped underneath it and pulling? i also get pain and ringing in my ears sometimes a pulsile whooshing but usually just a mechanical sort of hum. these get worse when i do something like bending over where the blood flow increases to my head and i can usually makes it better by repositioning when laying down. i tend to feel my best when laying down but my pain doesnât really go away i just feel a bit less anxious and a bit more clear-headed. i also lose strength in my voice sometimes when standing which confuses me. it just sounds very meek and almost squeaky? and sometimes i have a feeling like im about to gag when i talk too much? i usually feel a fullness in my head and neck on the sides like my arteries are too full or something. i have low blood pressure that i monitor to help monitor my thyroid levels usually 100/59. the several neurologists i have seen had agreed it sounded like i had a spinal csf leak but none of my imaging proved this. it did find that i have twisted icas and a borderline aneurysmal dilation on the left side. nothing significant enough to be causing my issues. i had a 30 ml blood patch done to try and get to the bottom of my issues a few weeks ago where i was laid on my stomach with my head to the right which i never really do because it feels stiff and uncomfortable. afterwards i had an episode similar where the right side of my face went numb along with my right arm where i really couldnât really move my hand which has happened lots before but never that badly and i experienced something the ER called vasovagal syncope. I have a random palpitation/heart flutter that has been getting worse with everything else but ive seen cardiologists and all is fine with my heart.
the ER couldnât figure out anything that caused it but they also said i had small hemorrhages in my retinas which led me to think maybe i didnât have low intracranial pressure at all, except the blood patch helped my classic low pressure symptoms but my trigeminal neuralgia, occipital neuralgia, throat/neck pain, vertigo when turning my head, and neck and temple pain persist unchanged. someone on a csf leak forum suggested I looked into IJV compression or eagle syndrome. My CTA from the emergency room is a 3d scan but isnât really at the right angle to fully show what the styloids may be affecting and on the scan they didnât look especially long (to me, someone who really wouldnât really know either way lol) but on the left side i can see bone peaking out behind my jaw in line with the rest of the styloid process which i think is what im seeing in my dental x ray? I vaguely remembered two years ago my dentist asking if i had any throat pain after my x ray. but i had always attributed the choking feeling, pain in my throat, and dysphagia to be from my enlarged thyroid. Im going to try to include my dental scan below which to my (clueless) eyes looks like maybe some calcification on the left side? i donât know if the sharpness on the right side is abnormal either. i understand i may be grasping at straws here but Im really struggling to continue dealing with my pain. My neurologists dont know what could be causing the whole of my symptoms. my vision and stuffed head feeling both get worse when i turn my head or talk and my doctors dont really seem interested in coming up with any ideas and im having trouble navigating where to even begin because i feel like i sound crazy describing it all.
i think im just looking to get a better idea if im being insane or if its possible this has been my issue or has been contributing to it? thank you in advance for any assistance or clarification you can offer!
@blue14 - Welcome to our forum. Youâve come to the right place for help.
You have bilaterally elongated styloids. I have annotated them in your image below. The styloids donât typically show up in a panoramic x-ray or CBCT scan unless theyâre longer than normal. Your left one has quite a thick knob on it which could be contributing to vascular compression but itâs also pretty angled & long which could both be contributors as well. You have a section of calcified s-h ligament on the left below & separate from your styloid. Your right styloid looks like it has an elbow which is causing it to angle in more, too.
Though I canât say for sure whether you have IJV or ICA compression, Iâm guessing itâs ICA (internal carotid) based on the stroke like symptoms you got when you had to lie w/ your head turned to the right. Your vocal, gagging, & blood pressure/heart problems could be coming from your vagus nerve being irritated by your styloids as those are symptoms seen when the vagus is unhappy. I had heart & blood pressure issues among my ES symptoms. These resolved once my styloids were shortened.
I think youâve finally found at least part of the solution for the symptoms you have. I would recommend you get a CT scan w/ contrast of from your skull base to hyoid bone. If you can get it w/ your head in the positions that cause your symptoms to worsen, thatâs even better. Thatâs called a dynamic CT scan. If you can travel, a good doctor for you to have a consult with would be Dr. Hackman in Chapel Hill, NC.
â˘Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic â in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
@blue14 do you happen to have on hand the original CTA imaging that you got done in the hospital? If you do, the axial and sagittal views can be quite helpful. We can also convert the CTA to 3D with free programs like radiantviewer.
i do but the axial and sagittal views both cut off the styloids and i cant really see anything. the only place where i can kinda see the styloids are head on and even then the place that looks like its calcified is hidden mostly by my jaw. also the software the hospital uses has big giant letters obstructing what im trying to get a better look at so ill try on the CD i ordered in the mail. None of my exams say anything about the IJV just that theres no stenosis of the ICA so im interested to see if i can create something where i can maybe see the IVJ for myself.
im editing to add that i may be mistaken about this i have no idea what im talking about so ive added some images i hope are helpful but it all looks like a mess to me.
thank you so much for this im obviously concerned about all this but im also relieved. the plan going forward for the csf leak was basically to keep having myelograms too look for it and blood patches to help my symptoms and i was feeling quite hopeless until finding out about this possible explanation. I was hoping to call dr. Constantino this week, do you know if is he a good option if i have those vascular concerns? Im in the NYC area so heâs definitely closer but North Carolina is doable!
@Isaiah_40_31 has explained your styloids & symptoms well, Iâd just add in that the glossopharyngeal nerve is often affected by ES, which can cause ice pick like pains in the throat or ears. Also the facial and trigeminal nerves are often irritated, which can cause pain in the jaw & face, as well as tingling and numbness. Voice changes can also happen with ES.
Dr Costantino is a very good surgeon to see for VES, so if heâs close to you thatâs brilliant!
@blue14 it looks like we have access to everything we need based on these images. Can you go to the axial view and go to C1? Iâve uploaded a photo of my own imaging below so you know what to look for.
I also have a video tutorial on the forum to help people read their axial imaging. If you type Axial CT tutorial in the search bar you should be able to find it. Iâll help as much as I can, but my video will allow you to investigate the full length of the IJVs on your end since you have the imaging and I donât.
Reading your profile, and learning about your stroke like symptoms, we will want to look at you carotids as well.
@blue14 -
In the last image you posted there is visible compression of both your internal carotid artery & your internal jugular vein. Iâve annotated your image so you can see what is what. I may have the artery & vein mixed up but Iâm pretty sure Iâm correct. Your carotid is visibly narrowed immediately below your styloid then enlarges (like a small balloon) below the narrowed area. That is an indication of compression. The âballoonedâ area of your carotid appears to be compressing your IJV to some extend very slightly above the transverse process of C1 which also appears to be pressing on your IJV. There is a small vein/artery (the letter F is sitting on it in your image) which runs diagonally across both the ICA & IJV, just slightly above the transverse process, which appears to possibly be contributing to compression of both the ICA & IJV. Itâs marked w/ a yellow arrow in the annotation.
Since you only uploaded an image of your right side, Iâm wondering if the left side might also display some interesting problems, but these can be just one sided so hopefully thatâs so in your case.
As @Jules said, Dr. Costantino would be an excellent doctor for you to consult as these sorts of problems are what he specializes in fixing.
the hospital my CTA was done at only allows access to the imaging through a slideshow format for some reason but this is the best i could do until i get my hands on a dvd player and get my imaging through better software. Your tutorial was very helpful! it looks to me like my styloid is compressing my IVJ on the right side of the image? on the left side what i think is the ICA looks sort of flattened in one photo but i think thats because my ICAs are fairly tortuous and the âslicesâ of the ct create that appearance.
thank you so so much for this. My ICA absolutely looks weird. out of curiosity, do you have any information on if i were to have surgical intervention is it possible for that ballooning to be reversed?
i cant be seen for an intake appt with Dr. Constantino until October but im meeting virtually with my vascular neurosurgeon this week to try and talk about this sort of compression stuff as i had been seeing him to monitor the small aneurism i have higher up my left ICA Iâm hoping itâs possible for me to get some sort of formal diagnosis to help me move things along.
I agree with everything youâve said. Your left ijv (right side of image) is in contact with your left styloid. Once we get the full imaging weâll probably see a greater pinch point in between the two slices youâve sent.
I think youâre right about the ICA and it looking weird on the other slice due to it being tortuous!
