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.

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

Postby EnjoyingTheRide » Sun Nov 22, 2009 7:00 pm

What I understood about PPMS and CCSVI up until I watched the CTV interviews was this:

1. PPMS progression takes longer to stop- about 18 months.
2. PPMS stenosis is located in different areas than RRMS, including more often the azygos veins.

But in one of the post production interviews I heard Zamboni say,

"not all of the narrowing of Primary Progressive people can be treated"

and then he was abruptly cut off. Does anyone know the whole story here? This is the first time I heard that I might be untreatable.
Mitch
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Postby Rokkit » Sun Nov 22, 2009 7:06 pm

I caught that too, and I figured it would be coming up soon enough on here. Although I haven't been diagnosed, I'm almost certainly PPMS. I'm definitely not RRMS. And my jugulars were pinched in the same places as all the RRMSers. And my azygos was fine, just like almost all of the RRMSers. So I have no idea what Dr Z was talking about, but would love to know more. Hopefully he's talking about in the rarest of cases. Or maybe he just meant the angioplasty wouldn't work in whatever locations he's referring to.
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Postby zap » Sun Nov 22, 2009 7:16 pm

Does Dake test the azygos in the upright position? Is the upright position where Zamboni sees problems with doppler?

Given the way blood flow changes when upright and prone, it seems quite possible to me that this could be the source of the apparent discrepancy.
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Postby cheerleader » Sun Nov 22, 2009 7:32 pm

Dr. Zamboni has not been able to help relieve all stenosis with ballooning. The very, very high jugular blockage is one such type. My Jeff- even though diagnosed as RRMS- would not have benefited from the Liberation procedure. Nor would rokkit. The stenosis which can be helped by ballooning only are the azygos and the lower jugular stenosis. Dr. Zamboni has seen stenosis in all MS patients, but has only treated 100 or so out of the hundreds he has tested with the Liberation procedure. This is because, as Dr. Dake has learned, ballooning doesn't help everyone. Most patients will need stents for the veins to remain open.

All tests are done prone, with the exception of the dopplers of head and neck, which are done prone and upright. Azygos is always flat, to my knowledge. We still do not understand the discrepancy in what Dr. Zamboni and Dr. Dake are seeing in the azygos-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby radeck » Sun Nov 22, 2009 8:18 pm

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Postby Rokkit » Sun Nov 22, 2009 8:35 pm

When I was with Dr D (7 weeks ago) he said he had no idea why the discrepancy with Dr Z regarding azygos.
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Postby EnjoyingTheRide » Mon Nov 23, 2009 4:33 am

Thanks to everyone for your responses. I'll definitely ask Dake about this when/if he calls me for a consultation. I'm still waiting for the other shoe to drop- for everyone to say "sorry, this works only for RRMS". I'm particularly concerned about this in February with the preliminary Buffalo report.

Sorry for my pessimism, but you get that way after years with PPMS, listening to all the buzz about advances in RRMS treatment.
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Postby Loobie » Mon Nov 23, 2009 4:49 am

I've been out to Stanford three times and asked him about their discrepancy all three times. He says he doesn't know why. I sense from Dake the collaboration may not be as fully enthusiastic as we would all like to see as Dake doesn't understand why Z doesn't use stents since all of the restenosis. Not that they don't talk, but I think that Z doesn't seem too crazy about the use of stents. Just a feeling I got, nothing he directly said.

I was really sure he would find azygous involvement on me as my MS has been mostly spinal, but alas he really thoroughly showed me that there was none on the MRV. Prone or upright? Maybe that's why, but at least on my MRV, my azygous did not look like it was malfunctioning at all. However, I am not PP, but SP and clearly started out RR.
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Postby wonky1 » Mon Nov 23, 2009 5:44 am

I fully understand the frustration that comes with PPMS.
I too have PPMS and was at first reluctant to raise my hopes, just in case they were dashed yet again.
However I have decided to see Dr Simka and get scanned and if anything is found, have it "liberated".
This quote from GiCi is hard to disagree with.

GiCi wrote:Hi Wonky1,
I do not think that anybody could answer your questions, not even Zamboni.
It is true that improvements following the liberation procedure have been observed, but the evidence is still being accumulated. If you decide to have the procedure you should do that on the basis that a normal drainage of blood from the brain is very likely to be better than a faulty one.
GiCi


So I've decided that I would be better of with correct drainage.
Anything else is a bonus.
Of course, I'm sure a positive attitude (again) will I'm sure help, even if improvements do take a lot longer than in RRMS people, I've nothing to loose and the possibility of huge gains. Given time of course.
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Postby Loobie » Mon Nov 23, 2009 6:13 am

wonky1 wrote:So I've decided that I would be better of with correct drainage. Anything else is a bonus.
Of course, I'm sure a positive attitude (again) will I'm sure help, even if improvements do take a lot longer than in RRMS people, I've nothing to loose and the possibility of huge gains. Given time of course.


That is exactly the attitude I went out with. I had my hopes dashed before as well during my stint with Tovaxin, so this is how I set up the expectation in my head. I can't deny I'm walking better 5 months out. That is obvious even to me. Do I still feel MS'y? Sure I do, but I am definitely functioning at a higher level than before the surgery. Not in all the areas, like my damned bladder, but in my legs and also cognitively for sure.
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Postby radeck » Mon Nov 23, 2009 9:00 am

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Postby nomorems » Wed Dec 02, 2009 3:00 pm

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?
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Postby magoo » Wed Dec 02, 2009 3:10 pm

If you decide to have the procedure you should do that on the basis that a normal drainage of blood from the brain is very likely to be better than a faulty one.
GiCi


So I've decided that I would be better of with correct drainage.
Anything else is a bonus.
[/quote]


Exactly how I felt going into this! I wanted my blocked veins opened. The benefits are the icing on the cake!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby mrhodes40 » Wed Dec 02, 2009 3:16 pm

not all of the narrowing of Primary Progressive people can be treated"


In todays released paper he said some PPMS patients had agenesis of the lumbar plexus--it never developed. Obviously you can't balloon something that is not there.........
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
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Postby EnjoyingTheRide » Wed Dec 02, 2009 4:51 pm

In todays released paper he said some PPMS patients had agenesis of the lumbar plexus--it never developed. Obviously you can't balloon something that is not there.........[/quote]

I still don't understand this. Can you explain further?
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