Dr. Zamboni-CCSVI is "difficult to treat"

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Dr. Zamboni-CCSVI is "difficult to treat"

Postby cheerleader » Tue Oct 18, 2011 7:02 am

I continue to urge patients to listen to Dr. Zamboni--
Read his words. He is the expert, and truly cares for pwMS.
He is working on vein transplantation, valve replacements and more....but he asks us to be patient.
I posted this on Facebook last May--
https://www.facebook.com/notes/ccsvi-in ... 6089172211

This is a very important interview to read. It may not be what we want to hear, but it needs to be said. This is from Dr. Paolo Zamboni, the man who discovered CCSVI and continues to research how best to relieve venous stenosis and reflux. --
translation from Italian
May 24, 2011

Multiple Sclerosis, if it is the fault is of a vein --"Two years to verify my theory"
says Paolo Zamboni, the researcher who hypothesizes that involvement of the vein that goes from the heart to the brain, if decreased, would lead to the disease. But the scholar says: "it is advisable not to operate outside of clinical studies. Half of the patients' veins restenose"

http://www.repubblica.it/salute/medicin ... -16677023/

ROME - It is now clear that in the patient who suffers from multiple sclerosis the immune system attacks against the nervous system of the same individual. But what the trigger is, is not clear. Certainly, experts agree, there must be several causes. Based on the results of research conducted with its staff, Paolo Zamboni, director of the vascular diseases at the University of Ferrara, argues that one of these causes is a narrowing of the main veins that go from head to heart. Consequently, it is the stagnation of blood in the brain and toxic substances derived from metabolic processes that ultimately trigger self-aggression. Zamboni gives a metaphor : "If someone with multiple sclerosis is the victim, the murder weapon is the immune system, but the killers are still unknown. With our investigations we have collected enough evidence to put it a retainer, the narrowing of a vein, better known as Ccsvi, which stands for chronic cerebrospinal venous insufficiency. "

In the interview you granted us a year ago, you advised against venous dilation for patients, unless they are placed in a controlled trial, because there was still evidence of the effectiveness of the intervention. Do you not recommend it yet? "Of course. We have to wait a couple of years at least, when there should be the results of" Brave Dreams " study. This is multi-center research on 700 patients which is about to start. We are finishing the training of physicians in different centers who will do the ultrasound to find out if the patient has multiple sclerosis/Ccsvi and then the surgeons will operate. Some will not be operated on and blinded, and will not know whether the dilation was made or not. Then there will be at least one year of observation to see if there are improvements. "

Yet many patients are active seeking angioplasty immediately, often paying considerable sums of his own pocket. How do you stop this? "Ccsvi is not only fought with a dilated vein, and then we say goodbye to you. Ccsvi is an easy concept to understand but very difficult to treat. The number of relapses is high, but possible complications are rare. We have not finished our work in research in order to deliver a "turnkey" reliable method. For this reason, patients should be treated within studies created to protect them. "

Among the patients, after an improvement, many go back to as they were before. Why? "In about half of the patients, the operated venous constriction is formed again, and in these the symptoms recur. While this corrolation confirms the role of Ccsvi, other studies are used to improve the surgical technique. Angioplasty utilizes materials that were created to be valid on the veins, which have a different structure than arteries. and restenosis is also observed without any deterioration of multiple sclerosis. Although this is a fact it is difficult to interpret. Please note that in all patients we gave angioplasty did not stop the traditional immunosuppressive therapy, which could then prevent re-ignition of the disease. "

A study released early last year ECTRIMS Congress, doubts that the Ccsvi the cause of multiple sclerosis. "It is true, the data presented by Zivadinov in Buffalo is less exciting for us and does not help to understand if Ccsvi cause or epiphenomenon rather than MS. However, by assembling all of the research of this kind to date, we arrive at a series of 1,400 patients and 500 healthy controls, overall Ccsvi is present in 71% of patients and in 8% of healthy subjects. I believe these percentages are consistent with the hypothesis that the Ccsvi is among the causative factors of multiple sclerosis. "
Last edited by cheerleader on Fri Oct 21, 2011 4:16 pm, edited 1 time in total.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby David1949 » Tue Oct 18, 2011 8:53 am

Wait? How long? 1 year? ok. Two years? maybe. 5 years? All of us will get worse in that time and some of us will die. That's too long.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby cheerleader » Tue Oct 18, 2011 9:46 am

People are coming forward with restenosis and vein failure and do not have the ability to pay for further treatment. They are worse than before treatments. Please, just take Dr. Zamboni's word under advisement.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Cece » Tue Oct 18, 2011 9:51 am

Perhaps the full statement is "Please wait to be treated unless in a study."

I am proud that my data was captured by Dr. Sclafani. He has been tabulating the data, he has an IRB, and "publish publish publish" is on his to-do list.

I also went into the procedure knowing that I had the insurance available for a second procedure if needed. The problem with complications, though, is that there can be no end of complications. The gentleman who recently got the first CCSVI vein graft in the US had undergone 10 angioplasties before reaching that point. Ten angioplasties! It's a worst case scenario, but it could happen. What we really need is local, covered procedures. And to get that, we need the research to come in. :(
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Re: Dr. Zamboni-"Please wait to be treated"

Postby drsclafani » Tue Oct 18, 2011 11:10 am

cheerleader wrote:I continue to urge patients to listen to Dr. Zamboni--
Read his words. He is the expert, and truly cares for pwMS.
He is working on vein transplantation, valve replacements and more....but he asks us to be patient.
I posted this on Facebook last May--
https://www.facebook.com/notes/ccsvi-in ... 6089172211

This is a very important interview to read. It may not be what we want to hear, but it needs to be said. This is from Dr. Paolo Zamboni, the man who discovered CCSVI and continues to research how best to relieve venous stenosis and reflux. --
translation from Italian
May 24, 2011

Multiple Sclerosis, if it is the fault is of a vein --"Two years to verify my theory"
says Paolo Zamboni, the researcher who hypothesizes that involvement of the vein that goes from the heart to the brain, if decreased, would lead to the disease. But the scholar says: "it is advisable not to operate outside of clinical studies. Half of the patients' veins restenose"

http://www.repubblica.it/salute/medicin ... -16677023/

ROME - It is now clear that in the patient who suffers from multiple sclerosis the immune system attacks against the nervous system of the same individual. But what the trigger is, is not clear. Certainly, experts agree, there must be several causes. Based on the results of research conducted with its staff, Paolo Zamboni, director of the vascular diseases at the University of Ferrara, argues that one of these causes is a narrowing of the main veins that go from head to heart. Consequently, it is the stagnation of blood in the brain and toxic substances derived from metabolic processes that ultimately trigger self-aggression. Zamboni gives a metaphor : "If someone with multiple sclerosis is the victim, the murder weapon is the immune system, but the killers are still unknown. With our investigations we have collected enough evidence to put it a retainer, the narrowing of a vein, better known as Ccsvi, which stands for chronic cerebrospinal venous insufficiency. "

In the interview you granted us a year ago, you advised against venous dilation for patients, unless they are placed in a controlled trial, because there was still evidence of the effectiveness of the intervention. Do you not recommend it yet? "Of course. We have to wait a couple of years at least, when there should be the results of" Brave Dreams " study. This is multi-center research on 700 patients which is about to start. We are finishing the training of physicians in different centers who will do the ultrasound to find out if the patient has multiple sclerosis/Ccsvi and then the surgeons will operate. Some will not be operated on and blinded, and will not know whether the dilation was made or not. Then there will be at least one year of observation to see if there are improvements. "

Yet many patients are active seeking angioplasty immediately, often paying considerable sums of his own pocket. How do you stop this? "Ccsvi is not only fought with a dilated vein, and then we say goodbye to you. Ccsvi is an easy concept to understand but very difficult to treat. The number of relapses is high, but possible complications are rare. We have not finished our work in research in order to deliver a "turnkey" reliable method. For this reason, patients should be treated within studies created to protect them. "

Among the patients, after an improvement, many go back to as they were before. Why? "In about half of the patients, the operated venous constriction is formed again, and in these the symptoms recur. While this corrolation confirms the role of Ccsvi, other studies are used to improve the surgical technique. Angioplasty utilizes materials that were created to be valid on the veins, which have a different structure than arteries. and restenosis is also observed without any deterioration of multiple sclerosis. Although this is a fact it is difficult to interpret. Please note that in all patients we gave angioplasty did not stop the traditional immunosuppressive therapy, which could then prevent re-ignition of the disease. "

A study released early last year ECTRIMS Congress, doubts that the Ccsvi the cause of multiple sclerosis. "It is true, the data presented by Zivadinov in Buffalo is less exciting for us and does not help to understand if Ccsvi cause or epiphenomenon rather than MS. However, by assembling all of the research of this kind to date, we arrive at a series of 1,400 patients and 500 healthy controls, overall Ccsvi is present in 71% of patients and in 8% of healthy subjects. I believe these percentages are consistent with the hypothesis that the Ccsvi is among the causative factors of multiple sclerosis. "


Cheer: for the life of me, I cannot find where in his interview dr zamboni says to wait for treatment. He states it should be done within a controlled environment for protection.

That also often does sync with a recommendation to stay local. quite the contrary, his interview suggests that treatment should be concentrated among experts willing to publish.

DrS

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

Postby cheerleader » Tue Oct 18, 2011 1:12 pm

Patients are restenosing, and do not have money or means to pay for retreatment.
They are ending up worse than before treatment.
Dr. Zamboni asks that patients wait for a perfected ("turnkey") venoplasty method...to understand restenosis, and how to address it.

In the interview you granted us a year ago, you advised against venous dilation for patients, unless they are placed in a controlled trial, because there was still evidence of the effectiveness of the intervention. Do you not recommend it yet? "Of course. We have to wait a couple of years at least, when there should be the results of" Brave Dreams " study. This is multi-center research on 700 patients which is about to start. We are finishing the training of physicians in different centers who will do the ultrasound to find out if the patient has multiple sclerosis/Ccsvi and then the surgeons will operate. Some will not be operated on and blinded, and will not know whether the dilation was made or not. Then there will be at least one year of observation to see if there are improvements. "

Yet many patients are active seeking angioplasty immediately, often paying considerable sums of his own pocket. How do you stop this? "Ccsvi is not only fought with a dilated vein, and then we say goodbye to you. Ccsvi is an easy concept to understand but very difficult to treat. The number of relapses is high, but possible complications are rare. We have not finished our work in research in order to deliver a "turnkey" reliable method. For this reason, patients should be treated within studies created to protect them. "


He asks patients to wait for the Brave Dreams study, "We have to wait a couple years at least."
I understand that people are out of wait. I just need to re-iterate that being treated for CCSVI is often not a one-time treatment, and it is not covered by insurance for many.
We just don't say that enough online...
and I believe patients are "protected" when they can have local follow-up and be retreated, as necessary.
respectfully,
cheer
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Re: Dr. Zamboni-"Please wait to be treated"

Postby Cece » Tue Oct 18, 2011 1:29 pm

In the interview you granted us a year ago, you advised against venous dilation for patients, unless they are placed in a controlled trial, because there was still evidence of the effectiveness of the intervention. Do you not recommend it yet? "Of course. We have to wait a couple of years at least, when there should be the results of" Brave Dreams " study.
We have not finished our work in research in order to deliver a "turnkey" reliable method.[/b] For this reason, patients should be treated within studies created to protect them. "

The direct quote from Dr. Zamboni is not "Please wait to be treated" but "Patients should be treated within studies"... And when he discusses waiting, it is after a statement excluding those who are in a controlled trial.

The following doctors are doing IRB approved research:

Dr. Zamboni's team
Dr. Sclafani in Brooklyn
Dr. Siskin in Albany
Dr. Mehta in Albany
Dr. Ponec in California
Dr. Hubbard in California (neurologist, not directly treating)
Dr. Sullivan in Atlanta
Dr. Arata in California
Dr. McDonald in Canada (not treating)
Dr. Dake in California (much anticipated but not underway)
(not a complete list)
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Re: Dr. Zamboni-"Please wait to be treated"

Postby cheerleader » Tue Oct 18, 2011 1:58 pm

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

Postby David1949 » Tue Oct 18, 2011 2:33 pm

I have to relate this to a burning house. Imagine being on the second floor of a house that's on fire. The stairway is in flames so you can't get down that way. Your options are:
-Jump out the window. This may save you from the fire but you risk getting injured or killed by the fall.
- Wait for the "more research" fire truck to show up and rescure you. That will be great if the fire truck arrives soon enough. But if you wait too long you will be severely burned or killed by the fire.

Each of us will have to decide when it's time to take a chance and jump. I've waited over a year now and my condition has grown worse. I'll have to take the plunge soon or risk getting badly burned.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby MrSuccess » Tue Oct 18, 2011 2:50 pm

Quoting Dr. Zamboni is never a bad idea ...... as he provides pwMS some great advice about all things CCSVI.

In Dr.Zamboni's ORIGINAL discovery report on the 65 people he studied and treated for CCSVI ......... he concluded his report with the suggestion that ...... his colleagues try and duplicate his research outcomes .

So I ask ..... How can this offer be acted on without performing the same exact procedure [ Liberation ] on other patients ?

And thus ......... other medical professionals took Dr.Zamboni up on his challenge.

Starting with Dr.Dake ............. and now we have many .

What Dr.Zamboni CANNOT SAY .... but I can ....... is ......... STAY THE HELL AWAY from sketchy hole-in-the-wall , fly-by-night , mickey mouse , CCSVI treatment clinics.

As we speak ........ Tony Soprano is setting up shop .........

There are many sound medical professionals to choose from . [ see the list above - ]

Some other top notch CCSVI medical professionals - somehow - did not get listed .

But TIMS members know their names .




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

Postby Cece » Tue Oct 18, 2011 3:28 pm

I would not have wanted to be in a controlled study, because of the possibility of getting the sham group, and the stress of not knowing. But Dr. Siskin and Dr. Mehta are both doing controlled studies.

MrSuccess, my list was not meant to slight anyone, and I am scratching my head to think of who I missed that is doing a study. Dr. Simka and Dr. Ludyga in Poland and the doctors in Bulgaria. Dr. Reid at EHC? The doctors at BNAC.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby 1eye » Tue Oct 18, 2011 3:31 pm

We are still running clinical trials to test the tests. To test prevalence. Not yet in Canada to test the treatment. Dr. MacDonald gets closest by testing medical tourists. No, people can't afford re-treatment, especially when they have to travel past the iron curtain/49th parallel to get it.

Even the research is very expensive. Reasons for this state of affairs, I think, as much as anything else, stem from the usury practiced by drug companies' pricing of the so-called DMDs. It is a somewhat circular argument to say that current research is expensive because previous research was expensive, or that it results in expensive drugs. The buck does stop somewhere.

Insurance companies are inexplicably complicit. Are they accepting corporate kickbacks? Not the government. Never them.

"MS" patients must be freed from the cycle of unknown causes and unknown reasons for efficacy. They seem to be as vulnerable to the medicine as to the disease.

We must know something by now.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby MrSuccess » Tue Oct 18, 2011 5:08 pm

Cece - I know you would never slight anyone . This thread is important . As mentioned ... time is not to be had , for many. Therefore ..... it is up to anyone with MS to take whatever steps they feel necessary.

Dr.Zamboni gave us his theory of CCSVI - MS in 2008 . He challenged his colleagues to duplicate his stunning discovery .

How is it possible to do this WITHOUT applying Dr.Zamboni's methods , which in addition to doppler non-invasive examination ..... requires entering the body ?

Thus ..... one may conclude .......... that Dr.Zamboni's colleagues MUST include exploratory vein treatments in order to confirm or deny the benefit's of CCSVI treatment.

As we know ......... many of Dr.Zamboni's colleagues ......have risen to the challenge. And their results [ as much as they tell us ] are mixed. The 50% restenosis rate .... has this not been the norm since day one ?

I'm a 'glass is half full ' guy. And therefore thrilled as can be ..... that HALF of the pwMS treated ......... remain successfully treated.

And to think ......... it only get's better .



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

Postby Jugular » Tue Oct 18, 2011 7:07 pm

Having broken on through to the other side myself, who am I to suggest that others shouldn't enter? Zamboni operated on his wife. We all weigh the risks and know our condition. Really, this warning had more relevance a few years ago. It's too late to put the brakes on now.

It's still going to take a few more years of study before we are in a position to do a few more years of study before we can get to a few more years of study before we even get to best methods and perhaps then (and only perhaps) the procedure might become generally accepted. Even then, finding local practioners who have adequate training isn't a given. So travel for is going to be a feature of this treatment for most for many many years to come.

So some can wait. In the meantime, I'll be enjoying my gains. And I welcome anyone else convinced to try and bust on through themselves, and beat down this disease - even if only for a few glorious months.
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Re: Dr. Zamboni-"Please wait to be treated"

Postby drsclafani » Tue Oct 18, 2011 7:31 pm

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
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