What is everyone experience with ijv showing as only minimal on ct and ct venogram? Did it not show up for you till you had a catheter assisted venogram? Or did everyone show initially?
Mine only shows minimal, but symptoms are EXACTLY as compressed. Radiologist ( who has never even heard of Eagles) who read my recent ct venogram noted venous engorgement of upper c spine. And he feels its a csf leak. So because of that they canceled my catheter assisted venogram, said there no point. I pointed out ( per my consultation with dr. Aghayev in Turkey) that this engorgement can appear as a csf leak, but actually be engorgement from ijv. Only way to definitely know is to measure pressure gradients. They refuse. Will only do blood patch.
So I have all symptoms, have elongated calcified stylohyoid and you refuse to do a catheter venogram??? I want to pull my hair out.
If a spontaneous csf leak is to blame for all my symptoms ( jaw pain, lump when swallowing, head pressure worse when laying down, extreme headache , balance issues, blurry vision, ear ringing and fullness, cognitive, panic attacks anxiety, confusion) ….then so be it. But atleast look into a root cause first.
Dr Nikaji is looking over my records and I pray he will want to look further.
Did anyone else not show up till catheter test? Or am I being too stubborn?
@Cindyd - I am so sorry for that your doctor wouldn’t do the venogram. It is a very invasive procedure, & he may have declined if he felt there was a possibility of rupturing your IJV due to the engorgement. It would have been nice if he’d suggested that reason vs just naming it a CSF leak & refusing to go through with it.
I had what I thought was very obvious, significant IJV compression between styloid/C1 on my left side but was required to get an angio/venogram to prove it was bad enough to need surgery. The venogram report came back saying the catheter couldn’t pass between the styloid/C1 so that finally made me a surgical candidate. I had some scary issues after the procedure which turned out to be onset of visual migraines for 4-5 days. The surgeon who did the venogram was no help when I talked to him & told him what was going on - actually told me he’d never heard of that happening to someone. I was afraid I was having a stroke w/ each one. I later learned those might have been caused by the contrast & would stop once it was out of my system. Thankfully that was the case for me.
All that is to say that it seems to me your surgeon was erring on the side of caution. Have you had a CTV to take a closer look at your IJVs or an ultrasound to measure the blood flow rate above, at the point of compression & below it? That is also a telling but much less invasive test. Here’s the protocol Dr. Hepworth uses though it’s missing the note that the valsalva manuever is used intermittently during the testing:
I think maybe I explained to you on another post about the cycle of high pressure (potentially from IJV compression), then a leak, then low pressure which gradually increases again? We’ve had a few members who’ve gone through that cycle several times because of IJV compression…but the symptoms you mention are more indicative of high pressure, not the low pressure that you’d expect if you have a CSF leak. That would usually be a headache on being upright which would ease on laying flat, so the opposite to what you have!
Maybe wait and see what Dr Nakaji says, if he wants you to have the more invasive CT venogram with pressure manometry before he agrees to see you then if you can travel you could see Dr Mehta who he works with for this, & forget your local radiology team?
Thank God someone finally listened. Dr Nakaji looked over my images and scheduled a catheter venogram for Feb 11. I feel so much better being in the hands of someone so experienced with this. Atleast ill have the peace of mind even if it is negative that due diligence was done.
@Cindyd - With the symptoms you have, I’ll be surprised if you don’t have elevated pressures in your IJV(s). I’m glad your appointment is scheduled so soon! Please let us know what you learn from the procedure.
That’s brilliant news! Will it be with Dr Mehta? Not long away too!
There’s been some discussions about what to expect during this procedure, @RobotEagle posted some info…