Hey everyone, I appreciate this community existing given how rare this condition is. It’s been an extremely long journey for me to get to this point. It started about 16 years ago with the room spinning rapidly in the middle of the night then gradual development of ear pressure/ringing as well as fluctuating high frequency hearing loss. Over years this has progressed to visual symptoms like pulsing lights, double vision, floaters, etc as well as headaches subtle dizziness, fatigue, brain fog, so on so forth.
To cut to the chase I have all the imaging necessary. I have bilateral internal jugular vein stenosis. My styloids are pinching my veins shut against the c1 of the spine. I’ve had a great team of doctors finally taking my symptoms seriously after getting told for years it was all in my head, but now I’m a little overwhelmed reading different experiences.
The only step left is scheduling the surgery which will supposedly be within the next month. They plan on doing a neck entry from. Behind my ear down to the neck, apparently the stenosis is at the very base of the skull so they plan to take the entire styloid out and then do a tiny bit of shaving at c1 to create some more space. Here’s where things get bumpy.
First is they want to start with one side. I’ve read on this site this is by far the most commonly approach as a double styloidectomy is pretty risky… That being said I have read a few published studies of successful doubles. I’d like some comments on this if possible!
Next is the hospital stay. I’ve read a few outpatient stories. My doctor’s have told me to expect 6 weeks off from work and 3-5 days in the hospital including a bit of time in the ICU. Is this consistent with everyone else here? My doctor’s are amazing and receptive so I don’t doubt them, but they have been pretty open that they’ve never performed this particular level of a styloidectomy as again it’s at the very base of the skull. I was wondering if it’s worth getting a second opinion at all? Sounds like my veins likely will need stenting after this whole ordeal… It just sucks because I’ll need this surgery, then imaging to check flow, then stenting, then in 3-4 months do it all over again.
Any help would be super appreciated, I’m pretty nervous, but I’m excited at the prospect of getting a new lease on life without the severe head pressure, jaw fatigue, swallowing issues, brain fog, etc.