Dr. Zamboni-CCSVI is "difficult to treat"

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

Re: Dr. Zamboni-"Please wait to be treated"

Postby MrSuccess » Tue Oct 18, 2011 11:00 pm

I've been thinking this over ......... and I seem to remember the biggest concern expressed by Dr.Zamboni was the possible use of stents in the veins. And with justification . We here at TIMS have seen the dark side of stenting.

I would like to hear Dr.Zamboni's current position on CCSVI stenting .

That said , stenting has worked for many. This adds tremendously important information to the gathered body of CCSVI data.

Just wondering ....... IF the restenosis rate is 50 % ...... my question is ....... what percentile of the restenosed had stents ? What % of those that remained patent ...do not have stents ? Or have them . whatever . Do I make sense ????? Doctors ..... please wade in .





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Re: Dr. Zamboni-"Please wait to be treated"

Postby Cece » Wed Oct 19, 2011 8:26 am

Dr. Zamboni's latest estimate on the restenosis rate is 23%. Which would mean a 77% chance of not restenosing. Not perfect, but not bad.

I remember too that Dr. Zamboni spoke in favor of compassionate exemption. He would not have you wait if you are bad off, and how do you define bad off? Having a neurodegenerative disease falls within my definition of bad off. Also not all IRs will treat the very highest EDSS levels, and it is difficult to travel if you are a high EDSS, so you do not want to wait too long. Bill Peart, if you remember, had an appointment at Albany that had to be postponed when he was not well enough, and then he passed away. A lady who posted in Dr. Sclafani's thread looking for help in the spring of 2010 passed away before he or another IR could treat her. Inaction is a form of action.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby HappyPoet » Wed Oct 19, 2011 9:19 am

Cece, do you know the time period covered by the 23% figure? At one point early on, I remember reading that 50% had restenosed at the 18-month mark. Thanks!
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Cece » Wed Oct 19, 2011 9:37 am

HappyPoet wrote:Cece, do you know the time period covered by the 23% figure? At one point early on, I remember reading that 50% had restenosed at the 18-month mark. Thanks!

I don't know the time period. The information came from here:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18143.html#p178445

I don't think we know accurately what the restenosis rate is, and it will vary depending on treatment methods.
In Dr. Zamboni's quote at the beginning of this thread, he mentions that there is high restenosis but very low complications. He is talking about elastic recoil restenosis, which is retreatable. You've talked about the 50% club, which includes me, but my restenosis was able to be reballooned and all is well. It can turn out ok even for those who restenose.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby scorpion » Wed Oct 19, 2011 1:51 pm

drsclafani wrote:
cheerleader wrote:Cece-
I'm just trying to be clear, and not argumentative.
Believe me, I understand how much venoplasty can help....but I want pwMS to have all the information before they get treated.
We have the luxury of knowing MUCH more than we did when Jeff was first treated.

Any where from 25-50% of patients restenose. (Dr. Zamboni says 50% in the above quote.)
Dr. Zamboni says his team is working on understanding why, and how to best address this, and they need a couple of years to create the "turn key" procedure.
Is a trial which does not retreat restenosis, or is not covered by insurance, or provide local follow-up really in a "patient's best interest?"
It may have IRB approval, but that's not the true definition of "controlled study" or one that uses normals as controls. Or a study that covers all the patient's costs and additional retreatment (s).
cheer


cheer
i have spent a great deal of time communicating with paolo zamboni and others involved in CCSVI. I seriously doubt that he is suggesting what you suggest he is saying


Dr. Sclafani it is my understanding that an increase in blood flow to the brain is the primary goal of treatement so would this also apply to people without MS? I would encourage you and Mr. Zamboni, in order to maintain an optimal level of health, to get angioplasty preformed on the veins in your neck.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby cheerleader » Wed Oct 19, 2011 2:12 pm

scorpion wrote:
Dr. Sclafani it is my understanding that an increase in blood flow to the brain is the primary goal of treatement so would this also apply to people without MS? I would encourage you and Mr. Zamboni, in order to maintain an optimal level of health, to get angioplasty preformed on the veins in your neck.


hey scorp--missed you.
Not to answer for the good doctor....but I didn't start this thread to come down on him, or any of the treating docs who are using IRBs. I admire Dr. Sclafani greatly. He's helped many, many pwMS. I did it to make sure patients know this is not going to be a one-time procedure without follow-up. Want to make sure they don't mortgage the house and then need more treatment. Or hope Medicare might pay, and find out they won't. That's why Dr. Zamboni urges caution. Me too.

An interesting aside....Dr. Haacke actually tested his own blood flow, and his veins are gorgeous, and his cerebral blood flow is fab. Not surprised, he's a bright guy. I imagine Dr. Sclafani and Dr. Zamboni has similarly normal cerebral blood flow, and venoplasty isn't recommended for them. Me, not so sure.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Cece » Wed Oct 19, 2011 3:25 pm

I have never heard Dr. Sclafani complain of any of the symptoms of CCSVI.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Lyon » Wed Oct 19, 2011 3:52 pm

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Last edited by Lyon on Wed Nov 09, 2011 8:57 pm, edited 1 time in total.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Jugular » Wed Oct 19, 2011 8:26 pm

Lyon wrote:
Cece wrote:I have never heard Dr. Sclafani complain of any of the symptoms of CCSVI.


Should that be taken to mean that "healthy normals" meeting criteria for ccsvi diagnosis in past ccsvi studies HAD previously been experiencing symptoms?
Were you and Scorpion away for a while attending an anti-CCSVI convention or something? Anyway, to answer your question, CCSVI may indeed open a whole new field of study in cerebral bloodfllow and its relationship to neurological diseases and cognitive function. A large body of people may end up benefiting from 'liberation'. I guess in the meantime us liberati with MS will have to continue to selfishly enjoy the undeniable abatement of our disease that CCSVI treatment has brought us.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Leonard » Thu Oct 20, 2011 12:59 am

what's about our kids?
it is know that there is a genetic factor in MS.
my kids (those who are in their early 20s) will join me when I go for a next echo-Doppler check-up in December.

the doctor that I will see is absolutely top, he has done many hundreds of patients, no question about that..
now, what if it shows that they have stenoses in their neck?
they have not had any symptoms of MS, I had mine before 20, so I guess they will be all right but you never know...

if they have stenoses, should they get them opened by dilatation as the BBB has not yet been breached?
would this make a difference in the risk of the BBB getting compromised and/or developing MS in the future?
should all kids of parents with MS get checked?
should this become a standard test?
well, I think the answer to all these question is positive.

actually, it is amazing so see that the whole discussion has not yet touched on this dimension.
however, I think it is important because -what ccsvi can do for us is 1 thing- it is potentially as important or even more important for our kids because early diagnosis and treatment of CCSVI could prevent they ever develop MS.
why has this huge medical system not yet addressed this dimension?
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Lyon » Thu Oct 20, 2011 2:25 am

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Re: Dr. Zamboni-"Please wait to be treated"

Postby CindyCB » Thu Oct 20, 2011 4:36 am

scorpion wrote:Dr. Sclafani it is my understanding that an increase in blood flow to the brain is the primary goal of treatement so would this also apply to people without MS? I would encourage you and Mr. Zamboni, in order to maintain an optimal level of health, to get angioplasty preformed on the veins in your neck.


An increase in blood flow FROM the brain...
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Jugular » Thu Oct 20, 2011 8:26 am

Lyon wrote: scorpion and I are pro-ccsvi but our outlook in promoting it are a little different than the norm. Crazy fools that we are, we feel that being honest and pragmatic is a better approach than wishful thinking and promotion before proof.

If you and scorp consider yourselves to be pro-CCSVI promoters, would Colin Rose be considered neutral? If your various detractions are promotion, I would say that you both have little risk of being snapped up by an advertising agency any time soon. To be a good promoter, you need to beat on a drum a little. Without drum beating, CCSVI would have been swept under the carpet a long time ago. This is what motivates research, which gives us studies, which gives us something to debate.

To promote something without being convinced of it is a greater dishonesty than promotion before proof in my view. For someone convinced, proof is no longer required - especially for those who have been treated and have experienced the results firsthand. For them, the quest is no longer about proof, it's about validation so that others may have the same opportunity.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Lyon » Thu Oct 20, 2011 9:31 am

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Re: Dr. Zamboni-"Please wait to be treated"

Postby Jugular » Thu Oct 20, 2011 10:05 am

Point well taken. I would think that your erstwhile brother in arms would be aghast at you labeling him a pro-CCSVI promoter, but I don't speak for him. Obviously, You both are free to define your own labels, express your opinions and to change them as you see fit. I would only observe that, based on my limited reading of your various posts on CCSVI, that they do appear to have a negative bent to them beyond merely playing Devil!s advocate. But I could be mistaken.
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