Cece wrote:This one that I've shown is my left jugular, which was 99% closed, and which restenosed to 70% and needed reballooning in July. My ultrasound in September looked good. But so did my ultrasound in May. So I don't know what amount of confidence to have in it staying open. Valves are resilient, which is not good in this case. I would however not go for a valvulotome approach (cutting off the flap) unless there was a lot of research and data to its safety. My left jugular is little and I wouldn't want to risk complications. I had specific improvements after my 2nd procedure that I can attribute directly to my left jugular being opened, since it was the only thing treated at that time. So I value that left jugular. I have however thought that if it closes up again, I would be open to having it gently ballooned once again, and go that route. There are unknowns too about the safety of repeat ballooning.
Your doctor did not think this flap would respond to retreatment? It's possible that it wasn't ballooned to the right size initially. Without IVUS, they're not able to be precise about that. It is also a concern to do anything that risks the vein when the other side is already damaged.
It still strikes me as absurd to hear theories about dehydration when we have ultrasound images, and IVUS images, of blockages that are fixed. But a lot of what we've seen and heard here is not yet in the medical literature.
I only have one side that is damaged, so I would not touch the others. I still have improvements, except the left foot is extremely cold, the right warmed up. The MS hug is only on the bad left blocked side, right side hug is gone.
FYI
1. My IR doesn't give percentages of blockages, I don't know why.
2. It is my left IJV also that is the problem. Most people have that same left side as being the problematic one. JMO
3. My IR doesn't think he can get to that problem through the intimal hypeplasia that's my first issue. Then up very high, just under my ear, to balloon and put in another stent on top of the two in that area already to get to that flap, he said I would get intimal hypeplasia again with the new stent. I think Dr Sclafani had that problem with someone on here that had two stents already, and he added a new stent and flow stopped on her.
4. My right IJV and Ayzgous are fine and flowing, 10 months now with no stents.
5. I wonder how many times, and in what time frame, can we keep ballooning these poor delicate veins? They need to heal. Is five too many, 10 okay, we don't know.. plus we are all unique inside and out.
6. If a vein blows, or has a bulge we are in the soup.
7. My IR said you can restenosis five minutes from leaving his place after the procedure, or it could happen five minutes from entering his place, to come back for the 3, 6, or 9 month Ultrasound check-up. No one knows why or when he said.
8. Do you notice when anyone is sick, has surgery or any procedure, even a relapse..or whatever.. everyone chimes in to say, rest and drink plenty of fluids, stay hydrated?
I believe hydration is important since the Jugs close flat unless even a trickle of blood in moving in them. Get dehydrated, flow decreases ( like 1eye discussed ) and the chance of blockages we are born with can worsen.
Thicker blood moves slowly too, in those in colder climates or in those who do not have free flowing normal blood. Do we know our INR on a daily basis? Does it change with foods and/or meds? So many variables. We are still the pioneers.
CD
Where there is a will, there is a way. "HOPE"
CCSVI Procedure December 2010
BP finally went up from 80's and 90's to 120 when I was pregnant. So all this fits in the picture you're all have painted. Interesting.
It doesn't go completely across the vein like yours is doing, but other than that it is a duplicate view.
