it was mentioned earlier that new relapses in RRMS only occured in conjunction with restenosis. Was this affirmed?
Yes. It is the same data that was presented at the cxsymposium. The cx paper had that graph that confused us --they mention a 4 fold decrease but the graph was showing something else. In the yer prior to Liberation 27% were relapse free, after 50% were. That is what the cx graph was on. But the Gd active lesions went from 50% to 12%, there is your four fold decrease.
No patient who remained free of stenosis had a relapse. None.
Zamboni says risks are "negligible" - does he further explain that?
2. "The results of this study warrant a subsequent randomized control study" - does he comment on how that would be done?
3. Overall results for SP patients seem to be less encouraging - does he explain why?
They looked at tolerance to procedure, pain levels, post operative thrombosis, major and minor bleeding, adverse events from contrast.
These were all fine.
There are a lot of technical details regarding exactly how the liberation was done for other doctors to read. They always tried balloon first, then went on from there. They did use a few stents for restenosis.
Some repairs did not last and that was the main "complication". In particular jugular repairs failed much more frequently than other areas. The patency rates are highly variable depending on the TYPE of stenosis it was. Some types always stayed patent--others restenosed very often....
comment: this means to me that in the future they will know who needs a stent and who can get by with just a repair.
The standard "Randomized controlled trials..." comment is elaborated with a trial in which one group is treated with standard therapy and another with standard PLUS CCSVI treatment to be followed by blinded neurologists. Reasonable...it will take a long time though 2 years minimum if they could start today.
and as for PPMS, the results at 18 months were trending towards improvement . For example on the quality of life survey before the procedure compared to after:
Quality of life survey:
If you were SPMS it went from 47+or- 12 to 62 +or- 16
If you were PPMS it went from 53+/- 13 to 66+/-12
There are a lot more numbers in the paper but I won't reproduce them all here--if you'd like them get the paper and then you'll have it to show doctors you'd like to tickle with it.
Dr Zamboni speculates that his PPMS numbers may be skewed by the fact some had missing veins that could not be repaired, thus they could not get effective treatment.
I am SPMS. Perhaps "better" will apply to us progressives, and maybe no more progression, but this paper is not following people for long enough nor is it large enough for any certainty--there were only 10 PPMS people after all - so I don't know.
improvement of motor performance for PPMS and SPMS patients. Wow! Did they look past 18 months?
Comment from the paper:
The neurologic outcomes in the PP and SP groups
were certainly less significant and promising. However,
because PP currently lacks any effective treatment, the
significant improvement in physical QOL warrants further
No it was an 18 month follow up.
Does it report on any progress of the ppms patients? Were they able to operate on all of them, or were the spinal area blockages unreachable.
Apparently they discovered the same thing Whyrwehere's husband did: agenesis of the lumbar plexuses in a significant number of PPMS patients. This is not operable because this means the vein is not there--it never developed at all.
I think overall it is a paper detailing a lot of variables and interesting results in a meticulous way, and it is everything we hoped for. All people who showed up with doppler reflux after surgery had restenosed........100%.
and I LOVED this comment:
Our findings are consistent with a role of venous hypertension
in the complex pathogenesis of MS, which has
only been hypothesized to date.30,31 Raised venous pressure
can stretch vein walls sufficiently to separate the tight
junctions between the endothelial cells that form the
blood–brain barrier.32 Colloids and erythrocytes can then
pass through the exposed porous basement membranes and
participate in the inflammatory process.28,29 Fibrin cuff, the
histologic marker of venous hypertension in chronic venous
insufficiency of the lower limbs,33 has been also demonstrated
in the veins of the plaques of MS.28,29
Yeah, so I will comment again that IMHO persons with no treatment options ought to be able to get this prior to full investigation by the neurology community.
IMHO It would be unethical to deny a person who has a verified stenosis the opportunity to get a repair if they have no other route of treatment given that the evidence here points strongly this way and given that there is limited ability to go back in progressive cases.
That is just how I feel about it.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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