CCSVIhusband wrote:drsclafani wrote:
This set of images is from a bit higher in the vein where there is a transition in diameter of the vein (Left image red arrows). The two IVUS images in the center are at exactly the same location. One shows almost no lumen to the vessel, measurning less than 3 millimeters. When Cece breathed deeply out, it is clear that this is not a stenosis but a phasic narrowing, much like what happens when any healthy person is upright. It does not need to be dilated and dilation will likely have no effect. Often such narrowings end up stented.
Are you saying such narrowings "should be" stented - if they don't hold up to angioplasty? And in this specific case, is it likely a stent MAY be needed in the future?
OR are you saying such narrowings are often stented by other doctors ... but shouldn't have been in the first place?
OR are you saying something I'm missing the point to?
Are you coming around on the use of stents (if there were better stents) in some cases?
pklittle wrote:Cece, I am so happy for you that all went well! I am so shocked to read of the severe ijv blockages though. Did your pre-screening tests reveal that?
Dr S, I am glad all went well with your #1 fan, Cece and btw it was a pleasure to meet with you this past Monday. thank you very much!
drsclafani wrote:Yes Cece
although you have a copy of the images, perhaps it would be good for you and your fans to review here as you suggest.
The sequence was as follows
1. prep and drape
2. time out
3. cath in left femoral under local anesthesia
4. advancement into right jugular, venogram, ivus, 18 mm angioplasty to thirteen atmospheres, repeat venogram
5. advancement into left jugular, venogram, ivus, angiopasty to 14 mm at ten Atm, repeat venogram
6. advancement into azygous vein, venogram of ascending azygous followed by zero, twenty, seventy and ninety degree views of the azygous arch
7. IVC venogram
8 ascending lumbar venogram
images as follows
This sequence shows the ivus probe on the far left of the screen at the point where these images were taken. The venogram is on the right shows a bad stenosis.
My goal has become to stretch the narrowing as much as possible without stretching the area of normal vein above it. That is a great value of the IVUS.
blossom wrote:well, cece, i just have to let you know once again that you are in my thoughts and prayers big time. if anyone ever researched and made a decisive decision on where, what doctor and when to get the procedure it would be you. i'm sure everything is gonna go great for you.
you going for this procedure for those of us on tims is generating energy and excitement like the fans of the steelers going to the superbowl.
my money is on you "cece" to bring home the trophy and beat that darn stenosis!
bluesky63 wrote:I am in such sympathy with you over the three children. As you know, I also have three children to care for, and as a parent going solo I have always felt a huge responsibility with the MS -- both in being there for them and in choosing treatments. I feel so emotional for you going through this. You wrote that this should be available for everyone. That was also my conviction after experiencing my procedure. Aside from any measurable effect on EDSS, I felt so much more *alive* and life was so much more vivid. I felt a combination of grief for the years I had missed, personally and with my children, and joy for what could be possible, for me and for my family and for other people who could experience this procedure.
It was truly a life-changing experience. I am happy beyond words for anyone who can do this. And I am grateful beyond words to the doctors like Dr. Sclafani who dedicate themselves to us and to the advocates who work to make it possible. Don't think that something as simple as vivid vision or a "reduction in fatigue" can't change someone's life and mean just as much as a point on an EDSS scale!
And to anyone who thinks that needing to have this more than once means it's a failure -- on the contrary, it is a brilliant success that anything, anything can bring us back into the kodachrome world. Like when Dorothy steps out of the black and white wrecked house into multicolored OZ and realizes she's way, way over the rainbow. Now *that* is a fine place to be.
tzootsi wrote:Cece, your posts on this forum have been so helpful and interesting. So glad you FINALLY got your turn!!!
Hope things continue to improve, and we will be watching your progress. Have a chocolate egg cream while you are in Brooklyn!
Cece wrote:tzootsi wrote: Have a chocolate egg cream while you are in Brooklyn!
a chocolate egg cream - is this a Brooklyn delicacy?