I was recently diagnosed with severe bilateral internal jugular vein compression. My c1 is abnormally big on both sides and is compressing the jugular veins up against the styloids. I have went through a year and a half of absolute hell. My only symptom being extraordinary head pressure that is constant 24/7 but the severity of it comes and goes in waves. It’s also morphed into head fullness and squeezing of my entire brain it feels like. I can’t bend over cus it feels like circulation is getting cut off to my brain and my head immediately fills up with pressure. Sitting straight up my head builds up with pressure and tightness and laying down as well in every position. I can not get comfortable for anything in any position. Out of a ton of MRI’s, mrv’s, mra’s and CT’s, blood work of all kind, the only thing that was found was slightly elevated opening pressure from 2 spinal taps (30 & 28) and the bilateral compression just recently found by Dr Patsalides in NY. I’m scheduled to see Dr Lo in the same building as Dr P this week to talk about surgery. But none or at least very little of this makes sense to me. Has anyone else experienced this head pressure and squeezing that I’m talking about? Can this really be from jugular vein compression?
Your symptoms are very typical of IJV compression. Two things that have been very helpful for our members who have IJV compression are to sleep with head elevation at night & get an Rx for Plavix or Brillinta both of which are blood thinners. Dr. Hepworth who routinely does IJV decompression surgeries Rxes one or the other of these blood thinners to his VOO (vascular outflow obstruction which is what you have) patients to take while they await their surgery dates. Dr. Lo, &/or Costantino, whom you may end up with to do the styloidectomy part of your surgery, may also Rx a blood thinner, though I don’t recall for sure. Please ask Dr. Lo if he’d give you a blood thinner Rx when you see him. That more than anything has been helpful for our members who have VOO.
I had head & ear pressure with bilateral IJV compression, and this resolved with the first surgery I had. It is a typical symptom with IJV compression, if you use the search function to look for head pressure or IJV compression I’m sure it’ll come up with lots of discussions.
It’s worth talking to your doctors about whether it’s just the styloids causing compression, or whether there’s any compression with the C1 processes, as this is something which certain doctors will address with a C1 shave during surgery, but not all doctors do this.
Let us know how you get on with your appt this week!