Hello Dr. Sclafini,
Thank you so much for taking valuable time to respond to our questions. We have so much respect for you and what you are doing!
I recently talked a local interventional neuroradiologist into doing the catheter based venogram. He seemed interested at first, then he must have learned that CCSVI is "controversial". He did it to "appease" me saying before the procedure that no matter what he saw he would not be treating it. With this, the procedure was done. While still lying on the procedure table, he told me that blood was draining adequately, and that there was nothing unusual.
He asked me if I would like to see the scans. I have seen a few before and after scans on CCSVI patients, so I was eager to see my own. From what I saw, the azygos looked normal at a glance.
The left jugular had a "twist" in it, although blood seemed to be getting through pretty good. I could tell that the blood was flowing because the contrast showed up as "cloudy" or "transparent". In other words, the contrast was not so thick that it completely filled the entire vein. I hope my attempt at describing this makes at least a little sense!
The right jugular looked very different from the left. Instead of one vein, two very prominent veins showed up! One was slightly wider than the other. The contrast in these two veins on the right side looked very different. The contrast in the slightly thinner vein showed up as on the left side. It was "transparent", or in my mind showing motion. However, the wider vein was completely filled with contrast. You could not see through it. It showed up much darker and more concentrated. It was hard to tell if this blood was actually draining because near the bottom of the scan, these two veins seemed to meet up and become one. As I viewed the section at the bottom, it looked more like the blood was actually only draining from the thinner vein because it had the same consistency, transparency, and amount as the thinner vein. I could immediately tell that the amount of blood trying to drain in the upper part of the scans was much more than what was actually draining.
To add to this, there was a large amount of collateral veins on the right side, at the top portion on the scans.
My immediate impression was that the wider vein was my jugular vein. It was stenosed to the point that my body had tried to compensate by making a new, thinner vein that was indeed draining some amount of blood. The collateral veins were also an attempt by my body to drain blood, although the collateral veins didn't seem to have an outlet.
I asked the radiologist why two veins showed up instead of one. He said that one was my internal jugular, and one was my external jugular. I didn't think to ask him why both my internal jugular and my external jugular had not showed up on the left side.
When I asked about the "web like" veins, he said they were collateral veins, and that this was completely normal. At this point, I thanked him. In my mind, I felt like I had the pictures to show stenosis and that was a great step! I determined to get the scans and have them evaluated by someone who could help me. So, a couple weeks ago I sent the scans off to you!
Can you answer these questions in general?
Is it normal to have two prominent veins show up on the venogram? Could this possibly have been an internal and external jugular? Are collateral veins normal? Does it make sense that the "transparency" I am describing is the blood flowing while the darker, more concentrated view is a sign of stenosis because the blood has nowhere to go and is refluxing?
I look forward to your answer!