Poll: have 2000+ pwMS been de-stenosed?

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

2000+ pwMS has been de-stenosed ?

Poll ended at Tue Nov 23, 2010 10:50 am

Yes it is true
23
82%
No it is not true
5
18%
 
Total votes : 28

Postby Cece » Thu Nov 04, 2010 8:38 am

I agree with Jugular, although the safety profile is still to be determined. I think we can safely say the procedure itself, on the day that it is done, is showing to be very safe. This fits with what's already known of angioplasty being safe. But with all the travel, patients are not getting appropriate follow-up care. There is always going to be a risk of clotting, even once the right anticoagulation is determined and the right schedule of follow-up dopplers is complied with.

But not having those in place currently makes the risk of clotting much higher than it has to be.

MarkW, drsclafani has said early on in his thread that elastic recoil, which is rebound, and thrombosis are two main causes of restenosis. I too have used angioplasty and venoplasty interchangeably, it is a bit of a fine point there, but you are correct. :)
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Postby Lyon » Thu Nov 04, 2010 11:37 am

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Postby L » Thu Nov 04, 2010 11:49 am

Lyon wrote:I don't know firsthand but someone earlier mentioned that venoplasty was already a medically accepted term before we started using it


Tsk. People remember what I say but they don't remember who said it :(
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Postby Lyon » Thu Nov 04, 2010 12:05 pm

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Postby fernando » Thu Nov 04, 2010 12:46 pm

This thread has useful information, please, let's follow jimmylegs' advice.
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2000+ de-stenosis procedures without deaths is noteworthy

Postby MarkW » Thu Nov 04, 2010 3:08 pm

If I believed the nay-sayers words in major neuro journals then there should have been many deaths following the procedure. Where are the bodies ? Stage one is safe use of a novel therapy is answered by 2000 procedures of balloon venoplasty.

Stage two involves getting an agreed methodology. The diagnosis method of selective venography is documented. However which veins could be stenosed and need to be investigated is not fully understood in pwMS yet.
Stage two should also involve an agreed protocol on any coagulation therapy required after the procedure. Different surgeons/IRs are using different medicines at this time.
Stage two also requires an agreed protocol on the balloons and inflation times to be used. If you have followed Prof Sclafani's workshop carefully you may have noticed that the Kuwaiti doctor recorded a re-stenosis rate of 2 (two) percent (FYI Cece). Prof Sclafani asks him to explain his method. Balloon venoplasty in pwMS is yet to be finalised by the vascular specialists.

Stage three records efficacy of the agreed procedure, using agreed tests of MS progression. Not even close to happening in my opinion as neuros should be involved.

If you choose to be an early adoptor (like me) you take risks with a developing procedure. On the other side of the balance is MS progression. Its a personal choice of the risk of a novel procedure or MS progression.

The nay-sayers will tell us efficacy is the critical factor. Remember efficacy can only be measured after the method is defined not before.

Kind regards to those seeking real data, and good night.

MarkW
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Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: 2000+ de-stenosis procedures without deaths is noteworth

Postby malden » Thu Nov 04, 2010 3:19 pm

@MarkW: It's all about procedure "Per Se". It's not a point. It's not a "Boob job". So, what is the validity, effectiveness, feasibility of this "Liberation procedure?"

moderator note: are we covering any new ground here? please refer to rules of the board
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Re: 2000+ de-stenosis procedures without deaths is noteworth

Postby Jugular » Thu Nov 04, 2010 3:56 pm

I think that the large number of volunteers for Liberation have helped develop a body of knowledge of best bet safe practices and public interest to justify clinical trials that examine effectiveness. The results of the clinical trials will lead to further refinement of best practices as expertise is developed.

Feasibility has been demonstrated by the sheer number of patients who have been able and willing to self-fund these treatments. The number of clinics offering the procedure are profiting to the extent that should the treatment win mainstream medical acceptance, private and public treatment centres will emerge to increase competition and lessen costs. At some point, the costs burden will be shifted in whole or in part to governments and private insurance companies. As far as medical procedures go, Liberation is relatively simple and inexpensive.

The validity part is likely to embroiled in controversy for years to come as it is conceivable to have a treatment adopted that is known to work without being able to fully explain why. While not the best state of affairs, this appears to be par for the course with MS treatments. IMHO true insight (and validity) will not result until a synergized effort is made to combine what we know to be true of CCSVI and autoimmune models of the disease. We also need some good prevalence data and testing of Zamboni's theory that certain obstruction patterns are assoiciated with the differing presentations of the disease into RR, SP and PP.
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Colin Rose and Boob Jobs

Postby MarkW » Fri Nov 05, 2010 8:39 am

I am fascinated to learn that de-stenosis and boob jobs are correlated in the mind of Malden.

For those trying to learn about this novel use of an established procedure, please understand that using a procedure in a novel way is not the same as testing a new chemical entity (or drug if you prefer).
At this stage 'safety of the procedure in pwMS' is being validated and the best process to follow is being developed. My analysis of the work performed to date is that these stages are not yet complete. The closest parallel in drug development is toxicity testing and dosage trials. These stages come before efficacy trials in drug development and must be completed before efficacy of de-stenosis is tested for a positive impact on MS.
It is a long journey, and you have the choice of being de-stenosed sooner or waiting for more results.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Colin Rose and Boob Jobs

Postby Cece » Fri Nov 05, 2010 8:52 am

MarkW wrote:At this stage 'safety of the procedure in pwMS' is being validated and the best process to follow is being developed. My analysis of the work performed to date is that these stages are not yet complete. The closest parallel in drug development is toxicity testing and dosage trials. These stages come before efficacy trials in drug development and must be completed before efficacy of de-stenosis is tested for a positive impact on MS.

This fits with what Dr. Sclafani has said, that they need a year to figure out the technique before beginning randomized research trials. In carotid stenting they rushed into testing the new technique against the established surgery and ended up with inaccurately nonimpressive results, because it was comparing the new unperfected IR technique against the perfected surgery.

Great post, MarkW.
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2000 for Nov 2010 is a low estimate

Postby MarkW » Fri Nov 05, 2010 8:53 am

I have been too conservative in my counting of pwMS who have undergone de-stenosis. If you check the EHC announcement they give numbers from Professor Marian Simka and team from Poland (over 800), Dr Ivo Petrov from Bulgaria (461 cases), and Dr Al Omari from Jordan (over 300 cases). Combining this with other known data takes the total to well over the 3000 Cheer quoted from Prof Dake. Until someone of sufficient standing states a new total on a public forum, I will stick with Dr Hubbard's web interview number of 2000. This may not sound logical, but it follows scientific etiquette.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Too early for full efficacy trials

Postby MarkW » Fri Nov 05, 2010 9:05 am

Jugular thinks:
"that the large number of volunteers for Liberation have helped develop a body of knowledge of best bet safe practices and public interest to justify clinical trials that examine effectiveness. The results of the clinical trials will lead to further refinement of best practices as expertise is developed."

I disagree. The vascular experts need to publish a 'what to look for and how to de-stenose' paper as the next step. Thanks Cece for posting Prof Sclafani's view on timing. I am hoping for a shorter time than one year from now (no pressure guys).

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby TMrox » Fri Nov 05, 2010 9:22 am

I've spoken on phone with Mark and he doesn't have an italian accent. His picture came out on a major national newspaper.

http://www.telegraph.co.uk/health/78823 ... elief.html
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Re: Too early for full efficacy trials

Postby Cece » Fri Nov 05, 2010 10:10 am

MarkW wrote:Thanks Cece for posting Prof Sclafani's view on timing. I am hoping for a shorter time than one year from now (no pressure guys).

He said it in August, now it's November...a few months down? I can't remember exactly though, it might have been "at least" a year. The main thing being that we are not there yet.

I'm happy with the decided figure being at least three thousand procedures.

I have it on no authority that concerned is really Montel Williams. :wink: 8O
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Any news ?

Postby MarkW » Wed Nov 10, 2010 8:10 am

If 3000 - 4000 pwMS have received balloon venoplasty, the warnings from MS experts would suggest deaths or serious injuries in large numbers. Any news of this ? :wink:

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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