New Zamboni Article Now Up

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Boreas » Wed Dec 02, 2009 8:32 am

mrhodes40 wrote: I'll answer questions about it if you like.
marie


Marie,

thank you for your generous offer. My first questions are these

1. 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?
4. What's in the videos?

Thanks for sharing!
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Postby cah » Wed Dec 02, 2009 8:41 am

Hello Marie,

it was mentioned earlier that new relapses in RRMS only occured in conjunction with restenosis. Was this affirmed?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby Sharon » Wed Dec 02, 2009 8:59 am

Thought this was of interest:
Paper suggests a blinded trial of two groups of RR patients where one group is using drugs and the other group has the endovascular treatment along with the drugs.......

Need to go back and reread, and reread -- very interesting

Sharon
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Postby tzootsi » Wed Dec 02, 2009 9:12 am

I assume you need to register to see the full article?
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Postby Lyon » Wed Dec 02, 2009 9:14 am

.
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Postby euphoniaa » Wed Dec 02, 2009 10:00 am

I had no trouble downloading it and printing it out a few minutes ago. It took a few extra clicks, though, and I have no idea how I did it... :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby ozarkcanoer » Wed Dec 02, 2009 10:43 am

We just bought the paper too !! $31 dollars and 50 cents. I hope some of this money goes to Dr Zamboni !!!!
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Postby euphoniaa » Wed Dec 02, 2009 10:53 am

It's free online - I just don't know how to explain the steps to take. I've already printed it and sent it to people.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby mrhodes40 » Wed Dec 02, 2009 10:56 am


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
evaluation
.

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...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Boreas » Wed Dec 02, 2009 11:04 am

Wonderful! Thank you so much!
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Postby prof8 » Wed Dec 02, 2009 11:11 am

Sorry, got too many requests!
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Postby TFau » Wed Dec 02, 2009 11:35 am

Thanks Marie:

It seems like it all comes down to having enough people trained to do the imaging part and then the safety of the procedure.

It seems like, as other have been doing, it would be logical to skip the neurologist unless you are on drugs prescribed by him or her (in which case, he probably should be kept in the loop for potential interactions with any after-care meds). We may look into the GP to vascular surgeon route...
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Postby Billmeik » Wed Dec 02, 2009 11:38 am

The logical alternative would be stent insertion.34 However, we refrained from using this option due to the absence on the market of dedicated devices of the proper size and length. Adapting existing stents at the level of the IJVs could increase the risk of pulmonary migration and displacement, thus affecting venous outflow from the up- per extremity.


wow zamboni nailed it.

I got a copy of the article..
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Postby Johnnymac » Wed Dec 02, 2009 11:48 am

mrhodes40 wrote:
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 whole heartedly agree, and would even go further and say those who do have other treatment options should be able to make the choice. My wife is 33, if this CCSVI thing is true, and we can get her fixed sooner than later she is still young enough that her body may be able to heal itself a little better.
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Postby Shannon » Wed Dec 02, 2009 12:10 pm

Is the article offered on JSTOR? I can access research papers as a student through my university. I am going to check. What is the title of the paper, please? :?:
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