This Is MS Multiple Sclerosis Community: Knowledge & Support

[sgriff]

I was a little discouraged to read that one of the doctors from the symposium reported that about 1/3 of his cases had no improvement at all. I guess I was hoping for better chances than this. But what confuses me is how that compares to Dr. Zamboni's original study of 65. Didn't Dr. Zamboni -

1. See stenosis in 100% of these?

2. Didn't the 65 not show progression of their disease when veins were kept open?

So if that is correct, Dr. Zamboni's outcomes were much greater than the symposium doctor.

Could someone clarify this for me? Maybe I am missing something.

[CCSVIhusband]

You also might be comparing a Da Vinci (Dr. Zamboni) to a Jackson Pollock (not sure the doctor - but I can guess) with that comparison ...

No, not ALL see improvements. You can NEVER say ALL.

But I'm sure more skilled doctors get better results, and there is still A LOT to learn to get to the "more skilled" point.

PLUS you have to remember ... if you're talking about someone who is at an 8+ on the EDSS ... it might be hard to recognize IMPROVEMENT.



But what IF ... it stops progression? Is that not improvement?

[1eye]

Was the doctor using IVUS? Did they enter on the left side?

[sgriff]

CCSVIhusband - Yes I would definitely call that improvement! I was wandering about that - if maybe he was referring to "immediate and obvious" improvement. Who wouldn't be thrilled with cessation of progression! Thanks so much for your input.

[sgriff]

1eye - Don't know - just read that report from the symposium. There wasn't that much detail.

[MaggieMae]

What I think he is referring to is actual obvious improvements. This does not include not progressing. Dr. Zamboni also did not see improvements in SPMS and PPMS, but they did not progress. Also, didn't I read somewhere on here that SPMS and PPMS saw improvements later -not immediately. There is much to learn, but I would not be discouraged. I've read about those who have gone through intense physical therapy before they noticed improvements in leg strength (for instance).

[eric593]

I believe the doctor was referring to immediate improvement, not stopping progression since he hasn't been performing the procedure on patients for long enough to know whether they've experienced progression or not. I don't even know if he's following them to determine effect on progression except very informally.

Did Dr. Zamboni even report on symptom improvement following the procedure? I've read that no one who didn't re-stenosis experienced progression, but I don't remember reading stats on immediate improvements from him.

[concerned]

I'd take Jack the Dripper any day.

[Cece]

I think any docs who are on record as speaking at the symposium yesterday no longer have any cover and we should be able to say their names freely.

I hadn't realized from the previous distinction of '1/3rd big improvements, 1/3 small improvements, 1/3 no improvements' how big the big were. At the symposium, he referred to the big improvements as 'home run' improvements. He also said that he is seeing a group that starts out with no or little improvements but then progressively improves over time. He is also not seeing with any certainty any difference in outcomes between the RR, SP or PP groups...I thought that was hopeful, especially for the PPers.

Are there any questions about this doctor's skill? I would want to know, if there are....

I actually think, since he talked about the need to dampen patient's expectations because even if we intellectually understand things on an emotional level we are all hoping for miracles, that he may be emphasizing the negative somewhat with the one-thirds.

1eye, no, he does not use ivus, but starting from mid-June, he does enter from the left side. Dr. Zamboni did not use ivus either, so that wouldn't affect those results comparison.

[CCSVIhusband]

Because like you and I have discussed many times Cece ... there is NO difference between RRMS, SPMS, PPMS ... the titles in fact, should not be used when discussing CCSVI.

THE ONLY DIFFERENCE IS -

where your veins are blocked,
how bad they are blocked,
and time ...



other than that it's the same process ... 10 years from now that'll be commonly accepted.

[Cece]

Because like you and I have discussed many times Cece ... there IS no distinction between RRMS, SPMS, PPMS ... just where your veins are blocked, how bad they are blocked, and time ... other than that it's the same process ...

I don't give much respect to the neuros but I'll give them a little...it is hard to change a paradigm when used to thinking in one set of terms.

Thinking this through, PP, RR, and SP do exist as a description of clinical outcomes. PP except for the very early stages and SP both represent categories in which more damage has been done to the brain and spinal column. So really I think we are looking at to what degree the brain and spinal column can recover from this damage, especially in newfound conditions of being fully oxygenated for the first time ever. RR MSers have demonstrated clinically that they can recover or else they wouldn't be called RRers anymore.

[ozarkcanoer]

Many of the newer doctors treating CCSVI have only been doing so since the beginning of 2010 or even much later. So when they say no improvement they are looking at people from the time they have the treatment which isn't a lot of time. We already know from reports of Dr Dake's patients that not all of his patients responded equally to the procedure nor Dr Zamboni's patients for that matter. This is not a miraculous cure but a potential treatment. Dr Zamboni himself said that we know MS is autoimmune. Go back and watch the first CTV W5 documentary. Everyone is at a different place both with their CCSVI and with their MS. At Dr Sclafani's symposium it was stated that they are just beginning to learn about how to best treat CCSVI. I admire their honesty. And I admire their willingness to share. Many of us are willing to have the procedure because we have no other option but if we are realistic we realize that there is a good chance it won't help our particular symptoms. It is refreshing that they talk about their results openly instead of waiting for the publication of a paper.

ozarkcanoer

[bretzke]

The effectiveness of Liberation must be compared to current favored drug treatments.

An approved MS drug need only "reduce progression 30% of the time". No symptom improvements needed for a drug to be approved.

Folks are disappointed that only 2/3 of those patients liberated show either major or minor improvements in symptoms.

Get real people.

Brian

[EnjoyingTheRide]

I was at the symposium on Monday. The doctor being discussed here is Dr. Siskin, from Albany, who is an absolutely top rate interventional radiologist, and has now done many of these procedures. He's just giving it to us straight, people. One third saw significant positive results. One third saw modest improvement. One third saw no improvement.

I am PPMS, and I fall in the third group. I was treated by Dr. Sclafani in March, and I have seen no improvements at all. I am hopeful that my progression has slowed or stopped. It's still too early for me to tell for sure.

I think it is unrealistic for us to expect that every MS patient will see significant improvement, at least at this early juncture. There is so much left to learn. I'm glad Dr. Siskin is giving it to us straight rather than painting a rosy picture.

[selkie]

I think many comments here are spot on, it's still very early on in using this treatment (techniques may be refined & improved as they go along), every patient is different - can't expect "ALL" to apply to any treatment regardless of what it is, and for me personally, it's the best hope I've got since CRABs have done little or nothing. If I could get some improvement or stop progression, that would be great. If I get major improvement, that would be wonderful. If I get none, well those were the risks I took as I've taken with any procedure or medicine.