So I have been dealing with 24/7 off balance and dizziness and ear and head pressure and brain fog for 7 months now . So bad that I been in a wheelchair and mostly home bound . My heart rate shoots up with certain head movements , but not the typical stand for 10 mins like pots . Certain bending or head turning I get pre syncope . My doctors treated me for pots but I don’t respond . I recently brought up maybe this is vascular to my doctors . It’s weird because if I massage my jugular areas it will completely unplug my ear, and pressure at the back of my head and move it all to the other side of my head but when it does that it helps my balance . I have a feeling maybe I have some type of jugular compression but can that even mimic pots ? Of course I have shittaaayy Kaiser they don’t help. I did have imaging done and it seem like my styloid are pretty damn long … idk give me your ideas . I’m hell bound and determined to get this figured out I’ll try and attach my pics in the comments if it lets me I went to the er with stroke like symptoms the other night . Black spots in vision , feeling faint , super brain fog but was sent home from the er said I was fine ? I can do anything but lay in bed and even then I still have symptoms, all these came on a month after a root canal and a year after a car accident with minor whiplash
I gets worse when I bend now I also get shortness of breath
I have imaging if anyone’s willing to look
@Sabrinab - Welcome to our forum! It definitely sounds like you have vascular compression of some sort. Your stroke-like symptoms would be more related to the internal carotid artery, but the head pressure, off balance feeling & brain fog more relate to internal jugular vein. It is rare, but we’ve had members w/ both.
The doctors you need to see at Kaiser are:
•Dr. Brian Jian (Neurosurgeon) & Dr. Balough (Neurotologist) & Dr. Ji (Neurosurgeon/Neurointerventional Radiologist) - KAISER SACRAMENTO, 6600 Bruceville Rd, Sacramento, CA, 916-688-2000
You’ll get farther with one of them than w/ whomever you’ve been seeing who told you nothing is wrong.
Since you’ve posted on the forum, your account has been upgraded so you can now post images. Please show us what you’ve gotten so far. We aren’t doctors here but we can give a non-medical opinion about what we see.
The only posts I see from you are in this discussion. Did you add your pics somewhere else?
You can add them to your original post by clicking on the pencil pic at the bottom of the post. That allows you to edit the post & add pictures. You can either drag & drop pics into the post or use the underlined up arrow in the menu at the top of the text box when editing the post or writing a new post.
@Sabrinab - You pegged it! Your right styloid is very long & your left one is longer than normal however it has a section of calcified stylohyoid ligament just beyond where it ends which effectually makes it behave like it’s longer than it is.
Unfortunately, it looks like your imaging was done w/o contrast & the picture you sent of your IJVs is not the sort of image that shows IJV compression except maybe to the very trained medical eye. The sort of image I’d need to be able to tell you if I see compression would be something like this:
I saw your images on your other post & they’re definitely longer than average & it looks like the stylo-hyoid ligament is calcified too… I agree with @Isaiah_40_31 that it does sound as if your symptoms could be vascular, IJV & possibly ICA. The styloids can also affect the vagus nerve which can affect breathing, heart rate etc. Often the IJV is compressed between the styloid & the C1, the right side image you’ve posted looks as if there’s a fair gap, but there can be compression too from muscles, occasionally other blood vessels & nerves…It also looks on this image (the 3rd one) as if your neck is pretty straight & has lost it’s natural curve (military neck), which can often increase vascular symptoms from poor posture. There’s info & exercises which might help in this section: List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Lots of us have had whiplash injuries/ neck trauma which could’ve caused the styloids to calcify.
I hope that you’re able to get referred to the doctor @Isaiah_40_31 suggested…
You definitely have elongated styloids , which need to be addressed, but I think that a lot if the compression is coming from behind the internal jugular vein … it looks to me like the tubercle of the first vertebral body (C1) may need to be “shaved” and and the soft tissues ( the digastric muscle) possibly taken down to give you “360 degree” decompression.
Hopefully, the recommended surgeons can address these problems and give you relief!
Your symptoms of head pressure and vision disturbances sound just like me, I am still searching for answers too. It is super frustrating for a doctor to tell you you’re fine and you live in hell. Hang in there, let us know how you’re doing
hi, your image looks quite close to my scan. But I was told I have ‘mildly’ compressed IJV by my C1 and thus I can’t be sure if a ‘mild’ compression is the cause of my horrible head pressure & IIH. What were you told with a scan like this?
@eh0 - A radiologist can only evaluate & comment on a scan via visual examination. This does not account for the symptoms a patient is experiencing regardless of the level of compression noted by a radiologist.
The radiologist who read my imaging said I had no IJV compression. It wasn’t until I had it converted to 3D & a former forum member helped evaluate my imaging, that the IJV compression was found & could be clearly seen.
My symptoms were moderate enough that Dr. Hepworth, whom I saw for the decompression surgery, had me get a venogram to confirm that I even needed surgery (main symptoms for me were chronic tinnitus, hearing loss, & vertigo). Fortunately, the venogram prompted surgery which stopped hearing loss progression & vertigo, but tinnitus remains thus is being caused by something else.
The fact that you have IJV compression which was noted in your scan results, & is causing significant symptoms for you, suggests that styloidectomy w/ IJV decompression will reduce your IH, visual disturbances & headaches.
We’ve had a few discussions about this recently, as some members who’ve been told that they have minimal compression are actually very symptomatic, whereas some who have significant compression have few symptoms. Collateral veins often swell and take over from the IJVs, so your intracranial pressure might keep fairly stable, but if your body doesn’t develop collateral veins then you’d likely see a rise in intracranial pressure, & hypertension symptoms would be worse…
