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An 'idiot's guide to valves' is what I seem to need at the moment. Going by my own current happenings and Dr Zamboni's opinion in the link posted by Cheer earlier...

"In Zamboni’s ... experience, abnormal membranes (septa) and/or malformed valves inside neck veins were more common than stenosis (narrowing) as a cause of obstructed blood flow."


Oh... ok good to know, I confess I had thought it was the other way around. So where are we on valves and surgical intervention at the moment? Last I heard, how to treat them was a contentious issue but it seems not so now?
If someone has malformed or malfunctioning valves, what's the accepted current course of action? Simply trying to flatten them out or...?

I'm confused because i'd imagine it's likely that at some point if you attempt to flatten them the flaps are gonna flap back and be a bit rogue to some degree, so i assume this would mean stents were more likely. Which IMHO is not good news, but if most problems are due to valves and not stenosis it seems that balloon angio may be of limited and very temporary use?

Understandable info/links appreciated on the issue

..start watching at about the 45 minute mark..Dr Hewett explains how he treats valve issues...

Interrupted wrote:Oh... ok good to know, I confess I had thought it was the other way around.

I thought this too, a few months back, then thought the valve problems could be from being damaged by the reflux (secondary to other stenosis) as it is in varicose veins, then was corrected on the matter by our resident expert.

I'm hopeful that the big balloons with repeated balloonings of longer durations, such as Sinan pioneered, will prove to be effective.

Dr. Hewitt's presentation was excellent. It seems like he may be explaining why Liberation doesn't work for some people, as well as why some people restenosis.

Also, it's interesting that he uses large balloons just like Dr. Sinan.

But I have to wonder about something. Those valves are there for a reason. If you bust them up too much will they still work?

Cece wrote:
...
I'm hopeful that the big balloons with repeated balloonings of longer durations, such as Sinan pioneered, will prove to be effective.

I had hoped the same, and in my second round asked for bigger balloons for longer and at higher pressure. I had an 18mm for 8 minutes at 8 atmospheres and also for six minutes, but it did not do the job. Doc mentioned cutting balloons, but they apparently don't come that big. He recommended that the only other possibility at this time was a stent, which I declined.

I wonder if Dr. Sinan's higher success rate might have to do with his attention to the azygous and bigger, etc. balloons.

David1949 wrote:But I have to wonder about something. Those valves are there for a reason. If you bust them up too much will they still work?

I would think not as well as they should. Rici had his valves pretty much destroyed (and a stent) and his symptoms got much worse. A year later, his jugulars are patent and flowing very well, yet he continues to worsen. He appears not to have any jugular reflux, but lumbar, iliac issues (I believe). So what happened there? How did the jugular intervention kick off the worsening of other veins? Did it?

Dr. Simka believes that "MS" = CCSVI + "unknown factor". "Intelligent" bacteria?

David1949 wrote:Dr. Hewitt's presentation was excellent. It seems like he may be explaining why Liberation doesn't work for some people, as well as why some people restenosis.

Also, it's interesting that he uses large balloons just like Dr. Sinan.

But I have to wonder about something. Those valves are there for a reason. If you bust them up too much will they still work?

15 percent of humans do not have valves in the jugular veins. They would be important in patients with high central venous pressure as their absence might result in reflux of another variety.

Johnson wrote:

Cece wrote:
...
I'm hopeful that the big balloons with repeated balloonings of longer durations, such as Sinan pioneered, will prove to be effective.

I had hoped the same, and in my second round asked for bigger balloons for longer and at higher pressure. I had an 18mm for 8 minutes at 8 atmospheres and also for six minutes, but it did not do the job. Doc mentioned cutting balloons, but they apparently don't come that big. He recommended that the only other possibility at this time was a stent, which I declined.

its not just larger balloons that are neccesary. It is the use of high pressure.
when i dilate the balloon to 8 atmospheres the narrowing persists. it is only when pressures reach 12-16 atmospheres that the narrowing is overcome..

drsclafani wrote:its not just larger balloons that are neccesary. It is the use of high pressure.
when i dilate the balloon to 8 atmospheres the narrowing persists. it is only when pressures reach 12-16 atmospheres that the narrowing is overcome..

I didn't understand that before, thanks.

drsclafani wrote: 15 percent of humans do not have valves in the jugular veins. They would be important in patients with high central venous pressure as their absence might result in reflux of another variety.

I had no idea, thank you for that gem. So does this mean it may be a risky thing to balloon the valves out of use (in itself) in some people in case they have high central venous pressure?
Or is a case of the lesser of two evils?

Cece wrote:

drsclafani wrote:its not just larger balloons that are neccesary. It is the use of high pressure.
when i dilate the balloon to 8 atmospheres the narrowing persists. it is only when pressures reach 12-16 atmospheres that the narrowing is overcome..

I didn't understand that before, thanks.

+1, thank you for enlightening on the subject.

Johnson wrote:

Cece wrote:
...
I'm hopeful that the big balloons with repeated balloonings of longer durations, such as Sinan pioneered, will prove to be effective.

I had hoped the same, and in my second round asked for bigger balloons for longer and at higher pressure. I had an 18mm for 8 minutes at 8 atmospheres and also for six minutes, but it did not do the job.

When you say it did not do the job, do you mean that the vein did not stay open or that the procedure did not succeed in improving your condition?

Johnson wrote:

David1949 wrote:But I have to wonder about something. Those valves are there for a reason. If you bust them up too much will they still work?

I would think not as well as they should. Rici had his valves pretty much destroyed (and a stent) and his symptoms got much worse. A year later, his jugulars are patent and flowing very well, yet he continues to worsen. He appears not to have any jugular reflux, but lumbar, iliac issues (I believe). So what happened there? How did the jugular intervention kick off the worsening of other veins? Did it?

I've been following Rici's story too, but I have trouble understanding exactly what is happening. I think Rici may be writing in his native language and using a Google translation which garbles the meaning. Its hard to come to any conclusions on that basis.

drsclafani wrote:its not just larger balloons that are neccesary. It is the use of high pressure.
when i dilate the balloon to 8 atmospheres the narrowing persists. it is only when pressures reach 12-16 atmospheres that the narrowing is overcome..

Dr Sclafani,

I've deliberated what you've said here and on this matter I then have to ask, is this realistically likely to hold in the very long term in your opinion?

If such larger ballons are used at such high a pressure (aside from success holding the valve open) does it not damage the elasticity of the vein wall and significantly increase the risk of wall collapse if repeats are still needed a few years down the line bearing in mind we already know of the high restenosis rate in the short term with smaller balloons currently?

I know being at such an early stage as we are at present this is impossible to say for sure, but i'm curious to know you opinion.

Johnson wrote:Doc mentioned cutting balloons, but they apparently don't come that big.

Did you read in Dr. Sclafani's thread, about the "poor man's cutting balloon" where some docs will trap the guide wire against the vein and then inflate the balloon, using the guide wire to indent similar to how the cutting balloon indents?

Eight minutes and six minutes seem like a really long time for ballooning! How long is normal?

I agree about the eight minutes and six minutes, and have concerns about the back pressure that's being created, I would think, during the procedure itself, since the balloon cuts off flow during dilation. Am especially concerned because of a history of cerebral hemorrhages in my family, and my feeling that micro-hemorrhaging might be caused by the ballooning?

Now that more negative reports are surfacing, I'm more inclined to wait for more data to emerge, and refinements to procedure and screening to be developed, before pulling the trigger. If I can stabilize the progression in the meantime, at least.

Feel like I'm on a seesaw, somewhat. Much to consider and weigh, with so many unanswered questions....for me, at least.

MS_HOPE wrote:I agree about the eight minutes and six minutes, and have concerns about the back pressure that's being created, I would think, during the procedure itself, since the balloon cuts off flow during dilation. Am especially concerned because of a history of cerebral hemorrhages in my family, and my feeling that micro-hemorrhaging might be caused by the ballooning?

That is a frightening concern, MS_HOPE.

I don't know about the latter, but the former (does the balloon cut off flow during dilation) was asked in Dr. Sclafani's thread. I can't remember the answer exactly, was it that even if one outlet is blocked, all the other outlets (the other jugular, the verts, etc) are still in play?