Has anyone experienced Double vision, Tinnitus, and Dizziness and been told they are Jugular Vein compression from the styloid? Has anyone relieved these symptoms after having the styloid removed? I’m so desperate for answers I feel like I’m losing my mind.
As you probably know, if the styloids are compressing the jugular veins, the blood can’t drain as well from the brain, meaning the pressure inside the skull increases (Intracranial Hypertension). This can cause dizziness, head & ear pressure, tinnitus etc, and it can also increase pressure on the ophthalmic nerve, which can cause blurred or double vision, so the symptoms you’ve mentioned can definitely be from styloid compression, as well as other things obvs.
I didn’t have any vision problems, but did have dizziness which has gone since surgery, and also pulsatile tinnitus, which has almost completely gone. I have the more common tinnitus but not badly, that I still get occasionally.
I noticed the symptoms improved really quickly after surgery, the worst side was done first, & then another improvement after the second surgery. Vascular symptoms do usually improve after surgery, but we have had a few members who have needed some of the C1 vertebral process resected, and sometimes ballooning is needed to re-open the veins. There are quite a few research papers in that section of the site which discuss surgery options & symptoms if you’re interested.
I haven’t been tested for this but it has been more or less a bone tossed to me after being told vTOS could not possibly cause similar symptoms.
According to my Ophthalmologist, both these conditions can cause these symptoms.
I learned something new from you. I hadn’t heard of vTOS as I thought TOS was strictly caused by nerve compression. There’s so many crazy things that can go wrong in our bodies!!
Yes, yes and yes!! Your symptoms may very well be due to jugular/carotid compression in some fashion - elongated styloid, muscle and/or transverse process of C1. There is also speculation that CCI (craniocervical instability aka: moves more than it should) can cause the scalene muscles to be over active and thus cause vascular stenosis.
It can be complicated but you most definitely are not losing your mind - this is very real!
Keep looking, keep asking questions, just keep going…
Yes - tinnitus and dizziness among other symptoms such as headache and neck pain. I had surgery in October 2021 and I am doing a lot better now! My surgeon monitored my blood flow during surgery with a venogram and was able to see my styloid and scar tissue on one of my muscles were compressing my jugular vein. He cleared both of those problems and I feel a ton better. No longer needing a blood thinner and much less dizzy, if at all. There is hope! Hang in there.
I began my journey due to vertigo, tinnitus, loss of hearing and double vision - so this can definitely be the cause.
I just got results back from a CTV - and in addition to the vTOS:
“Moderate to severe narrowing of the left internal jugular vein
between the styloid process and C1 in neutral position that slightly
improves with head turning to the left. The left internal jugular vein
is also narrowed by the posterior belly of the digastric muscle and
also in the mid neck near the carotid bifurcation.”
And most of the weird ones seem to happen to me
Do you have venous tos? I’ve got it bilaterally as well as bilateral IJV occlusion.
I have bilateral compression at styloid - C1 level. Left side is completely occluded and right side is > 80% compressed Mine are calcified and elongated.
I had on styloidectomy in March for my left side, but they did not remove enough of my styloid, so there’s still an occlusion at the very top.
The good news is that even though the vein wasn’t fully freed and the left side is not my dominant side, I have seen a noticable improvement. With that, I have decided I am going to have the rest of the left side removed to the base and my right side removed as well with Dr Hackman. I’m going to see him next week.
I have decided that for now I will not be touching my C1 and I am taking risk / hoping that just the styloidectomy will do the trick.
Here are three PRE SURGERY images showing my styloids in relation to my C1 and IJV.
I hope that your surgery plan works out well, very good that you have seen a bit of an improvement anyway! Let us know when you have a date for surgery!
Those are really good images. With the venous occlusion at your styloids do you get any blood pooling in your hands?
Hmm, not something I noticed. My hands and feet are always cold, though. I don’t think I get pooling as I would notice that. Maybe it’s I keep them in certain positions but not something that happens regularly.
Thanks for getting back to me. I ask because I’ve got bilateral ijv compression and a diagnosis of bilateral venous tos as well. The ijv compression on imaging is the only thing that shows but the vascular surgeon still swears I have tos. I do get blood pooling in both arms which is a sign of vtos but it’s not backed by imaging. I’ve always wondered If the occlusion in my ijv could cause issues in my arms.
I haven’t gotten to TOS because none of my Drs brought it up and I honestly can’t even deal with it until my IJVS is taken care of. So I really don’t know much about it.
What is your plan of action for dealing with your ijvs?
As of now I’m not sure if I need surgery or not. I have some upcoming appointments with doctors mentioned through this forum so I’m hopeful I’ll get a definitive yes or now on weather my styloids are problematic. I’ve had 32 head and neck CTs since 2006 and not one of the doctors or radiologist mentioned a word of it. Desperate for help with tos and a neck injury I reached out to a neurology clinic in Norway and after reviewing all my CT’s he said I had “extremely thick and long styloids” that are completely occluding my ijv. With that in hand I went back to the attending neurologist at my local va were all my scans were done and he completely blew it off saying that ijv always look flat on arterial phase CT’s. That’s where I’m at as of last week.I went back and reviewed all my CT’s and everyone of them shows the ijv only flat at the c1 transverse process and styloids junction. He claims it’s a timing issue but I’m hoping these new docs can give more insight. Once I figure how to post images on here I’ll put them up. Thanks again for getting back to me
32 CT’s, sheesh. That’s a lot.
Do you have any of those scans that you can upload, specifically the axial view. If your styloids are calcified and in close proximity to your C1 then it’s pretty clear what’s going on.
So few Drs know about this and even fewer know what to do. You see my scans and is obvious what’s going, but even my first ENT surgeon who literally operated on me said my styloids aren’t calcified (!?) so it’s really about finding the right Dr who will listen and is aware of styloidogenic venous compression. Otherwise it’s like beating a dead horse.
I tried taking snap shots the best I could. The one image with the arrow is what the neurology clinic in Norway uploaded to my notes.
I’m not sure how to upload just axial views. I’ve got over 3000 images just from one scan. I’ll have to keep playing around with it and see what I can do. Thanks again