PPMS, CCSVI, and what Dr. Zamboni said in the CTV interviews

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

Postby EnjoyingTheRide » Wed Dec 02, 2009 5:54 pm

nomorems wrote:Does anyone know how to get involved in the Clinical Trials at Stanford. I read somewhere that the cost is $80,000. Is that true?


This is not really a clinical trial, per se, but a doctor breaking new ground without really waiting for a real clinical trial.

They have had significant success getting insurance companies to reimburse for the procedures so far.

Call Dr. Dake's assistant Alex at: (650) 725-3806

But, I wonder, given the complications that one patient just had, whether they are taking any new patients right now. Does anyone know this?
Mitch
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Postby Sharon » Wed Dec 02, 2009 6:03 pm

Enjoying the Ride

Agenesis of the lumbar plexus: the lumbar plexus was never formed prior to birth- it is a congenital malformation.

As Marie stated, if it was not there to begin with, there was nothing to balloon
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Postby chrishasms » Wed Dec 02, 2009 6:24 pm

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Last edited by chrishasms on Sat Dec 05, 2009 1:16 pm, edited 1 time in total.
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Postby prof8 » Wed Dec 02, 2009 7:38 pm

Here is what I got out of the article regarding PPMS, PSMS, and RRMS (see below)--according to this things may not have really improved for PPMS and PSMS but my question is: did the progression at least stop? Does Zamboni ever answer this? There is a difference in actual improvement of symptoms (icing on the cake as some people have called it) and stopping the progression outright (what everyone is looking for at the very least).

Neurologic outcome. Outcomes for disease severity, relapse in RR patients, MRI outcome measures, and QOL
were evaluated:
● Disease severity: In RR patients, the MSFC showed
highly significant improvement at 18 months (P 
.008; Table IV). MSFC showed significant although
limited improvement after the first 6 months in both
PP and in SP clinical courses, but at 18 months showed
no improvement respect to baseline (Table V).

● MRI outcome measure: The rate of patients with
active gadolinium-enhanced lesions at MRI decreased
significantly from 50% to 12% (P  .0001; Table IV.
● QOL: In RR patients, mental and physical QOL improved
significantly (P  .001 and P  .003, respectively;
Table IV). In PP and SP patients, QOL showed
limited mental and physical improvement after the first
6 months but not at 18 months (Table V).
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Postby EnjoyingTheRide » Wed Dec 02, 2009 8:04 pm

Sharon wrote:Enjoying the Ride

Agenesis of the lumbar plexus: the lumbar plexus was never formed prior to birth- it is a congenital malformation.

As Marie stated, if it was not there to begin with, there was nothing to balloon


Got it! Thanks.
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Postby jay123 » Wed Dec 02, 2009 9:51 pm

Chris- The one thing the chart you posted says though is 'no improvement' noed, but it at least doesn't say 'worsening'. Hopefully it stops progression, thats all I am hoping for, and if I get more....... :)
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Postby LR1234 » Thu Dec 03, 2009 2:55 am

Hi Prof, That is exactly the part of the paper that I was most interested in.

With the MS drugs their aim is to stop the progression but for some reason with CCSVI our expectations are much higher and we want to see improvements as well as stopping of progression!!

The fact that it does say that the PPMS and SPMS went back to baseline and did not worsen after 18 months maybe does mean there was no progression which is a positive in itself.
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