This Is MS Multiple Sclerosis Knowledge & Support Community

I felt wonderful dung my pregnancies. In order to carry a baby I had to be on Provera= Progesterone. I didn't make enough of the hormone as I was 18 years old, married and pregnant right away. The doctor tested me, I took Provera for 4 months then weaned off of it slowly as by then my own body was making enough.

After having my children, I had to be neutered, lol and had to go on Estrogen replaced therapy, which I am still on eons later. My Triglycerides were always very low, around 34, not even on the range chart. Cholesterol around 160, and back then they said it was too low. 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.
CD

Cece, I meant to comment on your Ultrasound. I have the last copy of mine, and it looks the same. It is called a flap on my report. I wonder if it is the same? Sure looks the same, even the hazy vein after that leaflet showing no flow there, but flow above the leaflet then it stops.
Do doctors use different wording or names for the problems they see?
I also have a movable flap. ???
CD

CD wrote:Cece, I meant to comment on your Ultrasound. I have the last copy of mine, and it looks the same. It is called a flap on my report. I wonder if it is the same? Sure looks the same, even the hazy vein after that leaflet showing no flow there, but flow above the leaflet then it stops.
Do doctors use different wording or names for the problems they see?
I also have a movable flap. ???
CD

I can't say for sure but if it looks the same, I would assume it is a fixed valve leaflet. Your ultrasound was done a whole year ago, right? Perhaps your IR used flap to mean an extra big valve leaflet. Mine, as you can see in the picture, was quite a monster.

Cece, mine was redone September 2011. For my 9 month re-check. It doesn't go completely across the vein like yours is doing, but other than that it is a duplicate view.
CD

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.

http://www.cvphysiology.com/Hemodynamics/H011.htm

I think it is about flow, increased viscosity = resistance to flow. Cooler temps = thicker blood.

I think this is very important, and shows that viscosity/flow resistance can be non-linearly related to blood composition (hematocrit) and velocity. There is also a non-linear relationship between viscosity and bloodflow velocity, which must change radically around corners, and may partly explain activity at vessel junctions. I think I have a definite knee in the intensity of my symptoms at a certain air temperature, which also affects the viscosity of blood (non-linearly at that temperature?). More non-linearity is brought to flow resistance by Starling pressures. At some point, the straw may break the camel's back.

I'm sure hoping I remember to bookmark this one. It seems to concentrate on arteries, but maybe venous blood has even more "non-Newtonian" properties and is more affected by hematocrit, pressure, or velocity? Since blood composition is probably extremely determined by evolutionary factors, maybe that's where genetics fits in, and a circulatory congenial condition may have extremely marked effects, which are not apparent until after breeding age has been surpassed.

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

4. My right IJV and Ayzgous are fine and flowing, 10 months now with no stents.

Oh, that is good. I thought the flap was in the RIJV.

2. It is my left IJV also that is the problem. Most people have that same left side as being the problematic one. JMO

Dr. Sclafani has given some indication that, when there are complications, it is typically the left jugular. Not sure why this is, other than that the left jugular tends to be smaller (although this has wide variability).

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.

Yeah, I remember that. She had one stent, if I remember right, and he added two mesh stents one inside the other. It didn't work.

I've been here almost two years now, I first learned of CCSVI in November '09, and it is terrible how many people along the way have suffered occlusions.