Yes the C1 definitely looks odd and asymmetrical, I went back to a previous CT a few years ago, and it’s the same shape back then too.
interesting about adhd and pots… I feel like I’ve had adhd my entire life, but the pots has been more recent…
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Just an update, I’ve now had TWO appointments with my neurosurgeon.
He believes probably stylojugular syndrome, with my left IJV being compressed 75% and my right IJV 63%.
Next steps are he is reviewing my case with his multidisciplinary team, and referring my to the ENT he works with, Dr Michael Elliot.
I’m still asking him to review several things further, but I feel like I’m heading in the right direction.
Thanks again for all your feedback on my scans, I went into the appointment feeling comfortable that I knew what to ask about.
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I’m so glad you’re moving in a positive direction. It’s really great that your neurosurgeon has been so helpful & supportive, @htren! Dr. Elliot has been the go to doctor for many people in AU who’ve been diagnosed with ES/IJV compression so you’ll be in experienced hands if/when you see him.
Thank you for the update. I’m glad we’ve been able to help you so far. 
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Good that the neurosurgeon agrees, and will refer you to Dr (or Prof?) Elliott. One of our members , @Mikey18 , has just had surgery with Dr Elliott and it seems to have gone well… I hope that you don’t have too long a wait?
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Just posting a little update.
At my 2nd appt with Dr Rao he confirmed grade 3 left compression and grade 2 right compression of the internal jugular vein between the c1 transverse process, with right side being dominant.
He referred me to AProf Elliot, and he then said bilateral grade 3 compression and would take my case to the MDT (multidisciplinary team) meeting.
I’ve now been updated that the MDT confirm grade 4 left and grade 3 right compression, along with possible transverse sinus stenosis.
So my compressions have now gone from initial guess of grade 3 and 2, to bilateral grade 3, to confirmed grade 4 and 3. So basically it pays keep pushing and not accepting dismissals.
My next step is to see an interventional NeuroRadiologist who will do a Venogram catheter to check pressure gradients of the transverse sinus. Then we’ll discuss if a stent is needed or I can progress to decompression surgery.
I don’t even want to think about a stent, as I have a contact dermatology allergy to cobalt, nickel and of course titanium. I also have MCAS so my body does not like things (fullstop!).
Soooooo, in the meantime my head pressure pain is increasing, my tinnitus is off the charge and I’m soooooo over it all.
Long story short though, keep pushing!!
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I’m sorry that you’re feeling so grim, but good news things are moving forward! I hope a transverse sinus stent isn’t needed, praying you can go straight to having the ES surgery 
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I second what @Jules said, @htren. As bad as this may sound, it may be a blessing in disguise that your health was upgraded vs downgraded as that has gotten your foot in the door for more proactive treatment. I believe we’ve had a member or two who had transverse sinus stenosis that opened on its own when their IJV(s) were decompressed. That might be something to argue if a stent is pushed vs IJV decompression.
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Thanks for your kind words, @Isaiah_40_31 and @Jules
I was just feeling frustrated (no surprise!!).
I am glad I kept pushing due to my symptoms, and glad that they looked deeper and found the true level of compression.
Still waiting on my referral to the interventional NeuroRadiologist to check the pressures, but hopefully whatever the result of that test, I don’t need (or can argue against) stenting.
But yes, still happy to be moving forward…
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