DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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1eye
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Re: DrSclafani answers some questions

Post by 1eye » Fri Sep 25, 2015 6:42 pm

Cece wrote:
CCSVI is still not an accepted diagnosis----but jugular compression which creates intracranial hypertension is recognized.
My concern with this is that this puts a person seeking treatment right back where we were in 2009. You find a doctor willing to do this and you are the first person they've ever treated for CCSVI jugular abnormalities. First patients have a higher risk of adverse events than later patients. I personally think it's better, if possible, to go to a doctor with experience specifically in CCSVI.
I think you are right in saying it should be the standard practice for MS. Bur since much damage to that position has been done by drug companies, their stooge doctors and paid-off researchers, MS patients must seek treatment with surgeons known to have good experience with the CCSVI procedure. I agree that the term "Liberation" needs to be banned. I also know as most people here know, that very few people get the CCSVI procedure, who do not have a definite diagnosis of "MS". That fact has to be kept away from the delicate ears of neuros. It's all very sad. But there are many doctors and pwMS who will help.

Dr. Sclafani is still one of the best and most knowledgeable in the area of this procedure- that-dares-not-speak-its-name, primarily for people-who-have-MS. Someday this dark chapter in the history of medicine will be over. I will probably not live to see the day. Some of the youngest readers of this site, or their children, may.
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Re: DrSclafani answers some questions

Post by Cece » Thu Oct 08, 2015 12:36 pm

1eye wrote:Someday this dark chapter in the history of medicine will be over. I will probably not live to see the day.
I don't know, 1eye, you seem pretty lively. Progress is being made. Truth will out as the research continues. ISNVD is going strong, and in New York this year.
I think the dark chapter in the history of medicine was all of MS treatment up until Dr. Zamboni published his big idea, and the bright shiny chapter is everything since then and everything yet to come.

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Re: DrSclafani answers some questions

Post by Cece » Thu Oct 08, 2015 12:40 pm

Last edited by Cece on Mon Nov 09, 2015 12:31 pm, edited 1 time in total.

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Re: DrSclafani answers some questions

Post by NZer1 » Mon Oct 12, 2015 7:35 pm

Good conversation after the 'one drop of blood' article;

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Re: DrSclafani answers some questions

Post by drsclafani » Thu May 26, 2016 8:21 pm

Hi Guys, things are well here and interest in ccsvi treatments is picking up again. Not sure why but perhaps the positive information is now beginning to overcome the early negativity.

We have had many discussions about why neurologist are so adamantly and fervently negative about the concept that venous outflow obstruction is associated with MS and that treatment of those obstructions improves some symptoms, results in a better quality of life and might stop or stabilize progression in many patients. Many on this site have implicated finance and greed for the negativity. Others have asserted a pharma conspiracy, and others suggest that neurologists just cannot get their hands around the concepts of a vascular role. Some are so attached to the auto-immune theory of MS that its rejection or possible incorrectness threatens them.

I have been reading a book by Ludwik Fleck, a Polish Jewish microbiologist and physician in the 1930s who wrote an interesting philosophy of scientific knowledge that you all may find very informative.

Fleck stated that knowledge cannot be attained in a vacuum. Truths require elaboration of the thought to others who must understand, process the information and validate the proposition. In other words you need a village for knowledge to develop. in Science no one person can know everything there is to know. Scientists rely upon each other to bring something to the table, so that the meal can be cooked. He called these groups "thought collectives" : people trying to understand things of mutual interests. A thought collective could be neurologists, people interested in Ms, vascular specialists, even religions, etec.

Each thought collective develops " thought styles" which include mutually understood and gradually accepted codes of conduct, methods of research, designs of process, collegial dialogues, or even divine orientations. The thought collectives have leaders and followers, they can be professional and/or public. In some collectives, the leaders are autocratic, for example elders or priests who explain the origin off the worlds as creationism. The followers accept as truth what the leaders say. Other groups are more democratic and depend upon many to open doors of discovery, because the science is too complicated to rely upon a few people. Some write textbooks and scientific manuscripts to help their peers understand and gain knowledge. Others write for the lay audience. Both are essential to the development of knowledge. The public often is responsible for driving thought, research and knowledge, depending upon the needs. For example AIDS research required public pressures to provide public moneys to fund the research and treatment efforts. In a way, the MS public community has been very instrumental in developing momentum regarding ccsvi.

ISNVD began as a thought collective because those interested in it, needed a forum to learn and think with like minded scientists and physicians. It started as a group of radiologists, surgeons, neuroimagers, vascular specialists who were interested in veins. In the past six years, as the group has grown, its collective has matured and its thought style has changed. Now there are microbiologists, basic scientists, neurologists, vascular interventionalists, diagnostic radiologists, vascular surgeon, cardiologists, physiologists and other diverse specialists , each bringing to our common thought collective pieces of the way they do thought. The ccsvi thought collective is learning from all of these people and growing its own thought style.

All groups have shared understandings, prejudices, misconceptions and errors in their thought hierarchy that have evolved as the group evolves.This is called the "collective mood" These influences define the collective's actions. All collectives have an inherent need to maintain their history and mood, otherwise the collective is vulnerable to disruption. In many situations, be it, religion, neurology, vascular specialists, etc, the mood becomes defensive to maintain the path. To defend itself, the group may perform research that is prejudiced against disruptive ideas or uses thought style that results in faulty or even incorrect conclusions becaiuse they have a need , to hold on to the "tried and true" using the thought styles with which they are familiar and comfortable. Such research may lead to conclusions that are wrong, refuting truths and perpetuating the group thoughts.

True breakthrough comes when outsiders enter a thought collective. They bring new ideas and styles and they may see through the collective mood prejudices and misconceptions.

So it may be an inborn human failing. I think understanding these ideas will help move things along.

His writing resonated with me and his ideas were so familiar in this struggle to develop a ccsvi thought collective.

discussion?

DrSclafani.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by NZer1 » Thu May 26, 2016 10:25 pm

And I personally am thankful that you are a helm of of this section of the learning curve! :)

Thanks Sal

Regards,
Nigel

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Re: DrSclafani answers some questions

Post by Robnl » Fri May 27, 2016 5:39 am

Hi doc,

I think that's a good 'change', maybe the brave dreams results will accelerate interest.
Indeed; the fluids flow and it's problems are a more common subject than 7 years ago.......but it costs a lot of energy, and that frustrates :sad:

we're not getting any healthier in the meantime and damage goes on...

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Re: DrSclafani answers some questions

Post by Rosegirl » Fri May 27, 2016 10:48 am

To follow up on Dr. Sclafani’s idea of “thought collectives”:

Just as a headache might be a brain tumor, it is more likely from another cause. Maybe one just needs reading glasses. Or maybe a decongestant. Patients are often at the mercy of whatever “ologist” from whom they seek help. And if that “ologist” doesn’t solve the problem, they rarely recommend an alternative treatment. That leaves patients searching for other solutions without guidance.

We have previously talked about the model that neurologists are electricians and radiologists are plumbers. We should also consider that the vast variety of our symptoms could be caused by structural issues that could be fixed instead by carpenters.

Please bear with this dumbed down explanation by a non-medical person. Both the neurologists and the CCSVI researchers have a common diagnosis that something between the ears and the collar bones is causing a problem.

Both chiropractors and holistic dentists (not general dentists) look at the same general area and at wide variety of MS symptoms and suggest that realigning structural components will bring relief without drugs or any invasive intervention.

Here is a vast over-simplification. What they have in common with the other “ologies” is that they deal with body parts that affect the flow of blood and spinal fluid (among other things) as well as the trigeminal and the vagus nerves. These nerves pass both the jaw and the neck, and any impingement along the way can wreak havoc throughout the body. The chiropractor says the misalignment could have come from a whiplash or a fall. The dentist says the misalignment of the teeth could be from a congenital problem, the need for braces or badly designed ones or from other causes. Either way, some structural body part is pressing on something and damaging the signals it sends out. And it also explains the source of inflammation that seems to be present in so many models.

This is turn explains why the chiropractor and holistic dentist (again, not a general dentist) can treat headaches, gait problems, incontinence, blood pressure and other autonomic problems and virtually any complaint that sends anyone to any kind of doctor.

For an overview of why a physical realignment might treat so many different types of symptoms, click the link below. This video is almost an hour long, but it’s a great overview of the anatomy and function involved. You can skip the introduction by the guy in the bowling shirt. :lol:



I should add that I have no bias for or against any type of medical practitioner. In my case, when one type of doctor couldn’t fix what was wrong with me, I found many other “ologists” who said they might be able to help. It is astonishing that there are so many different approaches to treating “MS symptoms”, some of which can provide immediate relief without drugs or major intervention.

No reputable practitioner of any kind guarantees relief. So if you’re looking for another option, maybe this will give you a course of action. For some people, it will immediately make sense and give you a course of action. If CCSVI treatment is too scary or expensive (or like me, failed three times), you have other choices. Unfortunately, no one solution works for all of us. But maybe this will help us -- and our doctors -- identify larger patterns.

Maybe the knee bone really is connected to the neck bone. . .

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Re: DrSclafani answers some questions

Post by NZer1 » Fri May 27, 2016 2:15 pm

Rosegirl I agree in many ways and put some responsibility on information sharing at a base level.

We the patient need to be aware that we have to provide the clues, the lists of symptoms, the timeline of health status from birth till now, the injury/trauma history, and very accurately the diet history and present diet, the outcomes of any and all treatments and any other details that will create a full picture and not the 15 min GP appointment or the 50 min hour with a Specialist eg a Neuro.

Then the Medical System has to get real as well and spend the time in studying research as well as having a base, up to the minute, knowledge and experience with clients.

In many ways when a person is ill there are reasons they are ill that are not about pills or complex theories of chemical processes going wrong.

Basically we make or break our own health and bodies ability to heal itself by being 'Westerners'. We look elsewhere for excuses!

Much of modern living in the present Societal structured way is causing ill-ness. From diet to lifestyle and stresses, we are our own worst enemy and don't realize we are! ;)

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Re: DrSclafani answers some questions

Post by drsclafani » Fri May 27, 2016 7:32 pm

So, I was talking about the development of a thought collective, namely a group trying to discover the role of vascular disease in neurological disease. We established a group (ISNVD) to collaborate in creating ideas, learning from the varied expertise of investigators interested in this subject. It was a natural are relatively speedy development, like minded people with the same interest. I am trying to increase understanding of the various methods in which the thought collective succeeds, overcomes obstacles, avoid prejudices, eliminates misconceptions and errors, encourages open thinking and so much more. Fleck gives us ample warning about the ways in which the collective can prevent itself from discovering "truth" by holding too dear an existing "truth".

I believe that the ISNVD thought collective is inclusive of patients and the public. How could we not? For the public and the patients ultimately drive our initiatives, pressure government and other funding agencies, and give us encouragement. We have ways for patients and public to join our society and attend our meetings. We have a patient-oriented committee that reports to our Board. We need to engage our patients and the public in meaningful dialogue while avoiding the unfortunately too frequent complaints and criticisms of other thought collectives. We really need ideas and positive encouragement. We are, afterall, human.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by Rosegirl » Sat May 28, 2016 5:17 am

Does the ISNVD thought collective include other practitioners like dentists and ophthalmologists? Certainly, it takes a special kind of forward-thinking practitioner in the respective field, but their insights show an entirely different view of what happens inside the skull and beyond.

For example, immediately after a CCSVI procedure, my vision became (and has stayed) very sharp. I noticed I could read the teeny tiny print on a pill bottle that was about three feet away. The radiologist was amazed and couldn’t explain it. My ophthalmologist just laughed and said that happens all the time when the fluid pressure changes within the skull and the eyeball can return to its proper focal point.

It’s easy to spot these other “ologists” who should be in the collective. They also complain that the neurologists won’t listen to them.
Last edited by Rosegirl on Sat May 28, 2016 12:22 pm, edited 1 time in total.

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Re: DrSclafani answers some questions

Post by pelopidas » Sat May 28, 2016 6:11 am




Here's the new video of a patient treated for CCSVI two and a half years ago
He was never diagnosed with MS
His symptoms were pure CCSVI symptoms, although neuros had no definite diagnosis for him
There weren't any lesions in his MRI scan.

In my opinion, a case like this one makes the ISNVD the most interesting medical society for the upcoming years .
getafix

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Re: DrSclafani answers some questions

Post by Cece » Sat May 28, 2016 6:13 am

He called these groups "thought collectives" : people trying to understand things of mutual interests.
In many situations, be it, religion, neurology, vascular specialists, etc, the mood becomes defensive to maintain the path.
It seems a very human failing, that we would set out to gain knowledge and end up barring the gates to keep knowledge or disruption out.

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Re: DrSclafani answers some questions

Post by drsclafani » Sat May 28, 2016 6:41 am

Rosegirl wrote:Does the ISNVD thought collective include other practitioners like dentists and ophthalmologists? Certainly, it takes a special kind of forward-thinking practitioner in the respective field, but their insights show an entirely different view of what happens inside the skull and beyond.

For example, immediately after a CCSVI procedure, my vision became (and has stayed) very sharp. I noticed I could read the teeny tiny print on a pill bottle that was about three feet away. The radiologist was amazed and couldn’t explain it. My ophthalmologist just laughed and said that happens all the time when the fluid pressure changes within the skull and the eyeball can return to its proper focal point.

It’s easy to spot these other “ologists” who should be in the collective. They also complain that the neurologists won’t listen them.

Yes, Rosegirl. We are very inclusive. WE have no restrictions based upon specialty. We only seek credible, recognized professionals for our meetings. There are chiropractors in the group; one has even had his ideas printed in posters and had opportunities to present materials either as invited speaker or as abstract presenters. We have not had any dentists that i recall, but they are not prevented from joining. We actually have a patient on our Board of directors. nurses, physiologists, cardiologists, even neurologists.

Your comment regarding reduction in intracranial pressure is on the mark. ISNVD has much interest in ICP, CSF physiology etc. It all relates to Munro Kellie theory.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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Re: DrSclafani answers some questions

Post by drsclafani » Sat May 28, 2016 6:59 am

Cece wrote:
He called these groups "thought collectives" : people trying to understand things of mutual interests.
In many situations, be it, religion, neurology, vascular specialists, etc, the mood becomes defensive to maintain the path.
It seems a very human failing, that we would set out to gain knowledge and end up barring the gates to keep knowledge or disruption out.
Exactly my point, cece. it isn't all about financial greed, it is much more.

The more we understand about the nature of intellectual resistance, the better we will be at overcoming it
s
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

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