dk wrote:Cece,
I know Dr. Sclafani needs to keep the patient pretty alert during the procedure. Can you tell me what kind of sedation was used when he did yours? Could you feel the catheter moving around your veins? Was it painful, and if so was it only when he expanded the balloons? (can you tell I'm a bit of chicken)
Thanks!
dk
There was no sedation but if you needed it, I'd think you could ask for it. (Has anyone here had sedation from Dr. Sclafani?)
At the very beginning, when he was getting the catheter set-up in place, that was uncomfortable plus I was chicken too so that may have amplified my worries of what was to come. But then it went through my veins without me feeling a thing. Just as was promised, over a year ago, with the whole 'veins don't have nerves on the inside of them' discussion in one of his very first posts here at TIMS! He was right, that part was nothing. I was surprised when he had it in place in my jugular already, in fact I moved and messed up the guide wire, but he was able to fix it and I held still from then on!
So up to that point, the only discomfort was the initial insertion of the catheter at my femoral vein. Then the ballooning, for me, was indeed painful! He gave a shot of fentanyl, a narcotic, right before the ballooning. It definitely took effect, I felt woozy and was concentrating hard to make sure I didn't miss anything. I had waited a long time for this procedure and admittedly am an enthusiast of all things CCSVI! Didn't want to miss anything.
It's hard for me to separate out the pain in my neck from the ballooning on that RIJV from the discomfort/pain in my head at the same time, because my other jugular was completely blocked so when he cut off the blood flow with the balloon, all flow was disrupted. I don't know how long that ballooning went. maybe a minute? That was it, that was the worst one. He ballooned again there, then was satisfied with the flow. He moved on to the LIJV and I was already experiencing improvements, it was shocking, when he stopped ballooning the RIJV, my head cleared from the fentanyl or also just cleared in general and my hearing improved.
He gave a shot of fentanyl again before doing the LIJV. The LIJV ballooning was unpleasant but far more tolerable than the first in the RIJV. He ballooned twice there as well, as far as I can recall, then checked the other veins out, then all was done. And I immediately had the surprise of my life with all the colors. Other people have described it as "colors are more vibrant" or "it was like going from SD into HD." I recognised what I was experiencing from those previous descriptions but for me, it was extreme. The brightest shades of colors were ones that I had never seen before, while everything else was colors I had seen but never was everything so saturated like that. My favorite color has always been red; now my favorite color is blue, like my children's eyes, while red is too intense. Two months later, with spring arriving, it is getting brighter out there and I am again surprised.
So the procedure, while not nothing, was tolerable for me with only the initial insertion of the catheter being uncomfortable and the ballooning itself being painful, and the ballooning was very short-lived (4x, maybe a minute each) with only the first one being particularly bad.
There was also soreness and pain in my neck that came on that evening but Tylenol was enough to keep it in check. That pain lasted for a week and then was gone on my right side and lasted over a month and is mostly gone on my left side.
Do you have the procedure scheluded, dk? Sometimes the worrying is the worst part!
