DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Cece
Family Elder
Posts: 9323
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by Cece » Sat May 28, 2016 7:07 am

I believe that the ISNVD thought collective is inclusive of patients and the public.
The neurologist thought collective feels much more excluding of patients. I would say it is because neurologists have the knowledge that people with MS are motivated (some might say desperate) and therefore open to more options and options that have not yet withstood scientific rigor. We have a history of trying everything, because in the patient thought collective, the highest goal is individual improvement or stopping worsening. We are not afraid of anecdotes because we want to be the anecdote. We are not scientifically educated beyond what we do for ourselves or the happenstance of a doctor also being inflicted with MS. So if ISNVD includes us, which I am glad that they do, there are parts of patients' shared thought processes that aren't going to align with the professionals' shared thought processes, but I feel like this will not be a problem as long as the patients and professionals treat each other with respect. That respect is something that has fallen to the side in the neurologist/patient interactions and we are worse off for it.

edited to add:
If MS patients had a motto, it might be, "Turn every rock."
If neurologists had a motto, it might be, "Tried and true."
If ISNVD had a motto, maybe it would be, "We shall investigate."
Last edited by Cece on Sat May 28, 2016 1:59 pm, edited 1 time in total.

User avatar
Leonard
Family Elder
Posts: 994
Joined: Fri Dec 18, 2009 3:00 pm
Location: Brussels, Capital of Europe
Contact:

Re: DrSclafani answers some questions

Post by Leonard » Sat May 28, 2016 7:28 am

drsclafani wrote:
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
There is a good book on this. It is entitled "The Structure of Scientific Revolutions".
It was written by Thomas Kuhn already back in the 60's.

I quote from the post-script on Paradigms and Community Structure that he added later on:
... they have undergone similar educations and professional initiations; in the process they have absorbed the same technical literature and drawn many of the same lessons from it. Usually the boundaries of that standard literature mark the limits of a scientific subject matter, and each community ordinarily has a subject matter on its own.
...
As a result, the members of a scientific community see themselves and are seen by others as the men uniquely responsible for the pursuit of a set of shared goals, including the training of their successors. Within such groups communication is relatively full and professional judgement relatively unanimous.

That's where all the problems start.
The book is a fantastic read but also points to the hurdles that we are facing.

The issue is not predominantly medical.
I did this thesis myself http://www.mshackathon.nl/wp-content/up ... ressed.pdf
Current development on hematopoietic stem cell transplantation are largely complementary and lead to a real cure
https://uu.diva-portal.org/smash/get/di ... TEXT01.pdf

I wonder how you look at my thesis and hematopoietic stem cell transplantation

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Post by NZer1 » Sat May 28, 2016 7:50 pm

Is Dr Liu a member of the group Sal?
"Fenner was the first to undergo the minimally invasive stenting procedure. “I was ready to do whatever it took based on my symptoms,” she says. “At the same time, I would be the first one with Ehlers-Danlos to undergo the stent procedure, and we don’t have the best blood vessels. But I trusted Dr. Liu and I felt it was riskier to do nothing because the veins were so blocked. I had transverse sinus stenosis — the left side was 90 percent blocked and the right was 75 percent blocked.”

Fenner - StentQuantifying Success

Through two small needle pokes in the groin, Liu was able to successfully thread a stent into Fenner’s left transverse sinus, shown in the X-ray image at left. Once the normal flow of blood exiting the brain was restored, pressure within the skull dropped and Fenner experienced immediate relief. “The blurry vision was gone immediately, and I’ve been headache free since the procedure,” she says. “I’ve gotten my strength back, the whooshing in my ears is gone and my memory has improved. I’m cautiously optimistic.”

According to Liu, Fenner was not the only EDS patient to experience drastic results. “We had one patient who hadn’t walked for two years; she had a very mild vein narrowing,” he says. “We put the stent in and two days later she was walking. Two days after that, she was running on the treadmill.”

While not all outcomes have been this extreme, Liu says the EDS patients he’s treated thus far have all seen positive improvements. The challenge for Liu is explaining exactly why these patients are improving to this degree.

“We believe we’re improving the flow of blood,” says Liu. “But compared to other cases of stenosis, the brain pressure in these Ehlers-Danlos patients is much more subtle. There has to be something to measure scientifically to prove something is better or different after the intervention. We haven’t found that magic thing yet, but clinical trials may be down the road.

“As a physician and scientist, I still don’t know what to believe,” he adds. “Maybe this is all placebo effect.”

For EDS patients, it seems the only thing that matters is that venous stenting is offering relief from debilitating symptoms. “Word is spreading,” says Liu. “And I haven’t turned anyone away.”

Liu has performed the venous stenting procedure on more than 50 EDS patients thus far and he keeps close tabs on their progress, with regular clinic follow-ups and email correspondence. “We don’t know how long the effect of the stent will last. It’s only been about 10 or 15 years since we started putting stents in brain, so the concrete data we have is limited,” says Liu. “I hope they last for the rest of their lives.”"
http://www.uvaphysicianresource.com/ven ... -patients/

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Post by NZer1 » Sat May 28, 2016 10:05 pm

Sal is there discussion about the role of CSF and it's issues amongst the group?

It appears that the CCSVI learnings are bouncing against the findings with CSF, such as, the lymph system that appeared out of nowhere! This all comes back to the multitasks and feedback systems that we humans rely on in every human health system. If the BBB has a leak for instance the vascular leaks are one issue and the CSF leaks are another. In some ways it could be said that two levels of BBB function are important for brain/CNS health. The cause of the leak is important naturally but the search needs to be about the package, CSF, blood, immune system, diet etc etc.

The Rosa/Damadian findings because of Upright MRI, the Kipnis findings of the lymph pathway in the CNS, the Zamboni findings of vascular flow abnormalities and slow general flow in PwMS, and the other major findings all have a common factor which is the CSF and it's many tasks in the CNS.

These all got sidelined by the MS Industry/Pharma and drugs and more drugs that have been on offer to modify the issues, not look at the issues or to find reasons that they occur and continue to occur. In much the way that EAE was used as a sales tool for MS.

Diet, lifestyle, mindfulness and exercise have also shown that much of the base issues, the multiple triggers that lead to or cascade to MS dx are in many respects Human issues. In saying that not one thing will fix or cure or change MS long term. It has to be a monitored multitask approach which in general the Health industry isn't geared up for, 15 mins with a GP, a 50 min hour with a Specialist eg Neuro will not even scratch the surface of what needs to be undertaken as a treatment.

So imo CSF awareness cries out for acknowledgement as much as CCSVI awareness does!

;)

Cece
Family Elder
Posts: 9323
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by Cece » Sun May 29, 2016 8:27 am

drsclafani wrote: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.
You mentioned encouragement twice in this. You must know that you are right about CCSVI. When are you wrong? Rarely. We were fortunate to get your involvement and your drive applied to CCSVI. You could've been out there fighting for a different patient population. You are out there fighting for us and it is seen and appreciated. What you want is a victory, where the intellectual resistance gives way and CCSVI is understood and treatment is standardized?
Leonard wrote: ... they have undergone similar educations and professional initiations; in the process they have absorbed the same technical literature and drawn many of the same lessons from it. Usually the boundaries of that standard literature mark the limits of a scientific subject matter, and each community ordinarily has a subject matter on its own.
Leonard, do you think the solution to that is for professionals to read more widely and engage in discourse outside of their specialties?

User avatar
Leonard
Family Elder
Posts: 994
Joined: Fri Dec 18, 2009 3:00 pm
Location: Brussels, Capital of Europe
Contact:

Re: DrSclafani answers some questions

Post by Leonard » Mon May 30, 2016 12:51 am

Cece wrote:
Leonard wrote: ... they have undergone similar educations and professional initiations; in the process they have absorbed the same technical literature and drawn many of the same lessons from it. Usually the boundaries of that standard literature mark the limits of a scientific subject matter, and each community ordinarily has a subject matter on its own.
Leonard, do you think the solution to that is for professionals to read more widely and engage in discourse outside of their specialties?
They don't read, they don't engage in 'our' thinking.

Abraham Lincoln said it something like this: "If you are doing a revolution, don't try to convince your opponents. If you are right, you won't need it. If you are wrong, it won't help you."

We will have to cut the red tape in another way. Find allies, find mediators, organize serendipity.

If you take jusst a moment to read the abstract of http://www.mshackathon.nl/wp-content/up ... ressed.pdf you will note that the subject matter goes way way beyond any medical discipline. It requires a completely new viral consciousness and understanding. The question is how to get change underway.

User avatar
drsclafani
Family Elder
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani » Fri Jun 10, 2016 6:08 pm

NZer1 wrote:Is Dr Liu a member of the group Sal?
"Fenner was the first to undergo the minimally invasive stenting procedure. “I was ready to do whatever it took based on my symptoms,” she says. “At the same time, I would be the first one with Ehlers-Danlos to undergo the stent procedure, and we don’t have the best blood vessels. But I trusted Dr. Liu and I felt it was riskier to do nothing because the veins were so blocked. I had transverse sinus stenosis — the left side was 90 percent blocked and the right was 75 percent blocked.”

Fenner - StentQuantifying Success

Through two small needle pokes in the groin, Liu was able to successfully thread a stent into Fenner’s left transverse sinus, shown in the X-ray image at left. Once the normal flow of blood exiting the brain was restored, pressure within the skull dropped and Fenner experienced immediate relief. “The blurry vision was gone immediately, and I’ve been headache free since the procedure,” she says. “I’ve gotten my strength back, the whooshing in my ears is gone and my memory has improved. I’m cautiously optimistic.”

According to Liu, Fenner was not the only EDS patient to experience drastic results. “We had one patient who hadn’t walked for two years; she had a very mild vein narrowing,” he says. “We put the stent in and two days later she was walking. Two days after that, she was running on the treadmill.”

While not all outcomes have been this extreme, Liu says the EDS patients he’s treated thus far have all seen positive improvements. The challenge for Liu is explaining exactly why these patients are improving to this degree.

“We believe we’re improving the flow of blood,” says Liu. “But compared to other cases of stenosis, the brain pressure in these Ehlers-Danlos patients is much more subtle. There has to be something to measure scientifically to prove something is better or different after the intervention. We haven’t found that magic thing yet, but clinical trials may be down the road.

“As a physician and scientist, I still don’t know what to believe,” he adds. “Maybe this is all placebo effect.”

For EDS patients, it seems the only thing that matters is that venous stenting is offering relief from debilitating symptoms. “Word is spreading,” says Liu. “And I haven’t turned anyone away.”

Liu has performed the venous stenting procedure on more than 50 EDS patients thus far and he keeps close tabs on their progress, with regular clinic follow-ups and email correspondence. “We don’t know how long the effect of the stent will last. It’s only been about 10 or 15 years since we started putting stents in brain, so the concrete data we have is limited,” says Liu. “I hope they last for the rest of their lives.”"
http://www.uvaphysicianresource.com/ven ... -patients/
Dr Liu is not a member of our society, as far as I know. I did not meet him at our meeting.
If any of you are in contact with physicians with interest in neurovascular disease, please let them know about our new Society and they can contact me if they want more information
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

User avatar
drsclafani
Family Elder
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani » Fri Jun 10, 2016 8:14 pm

NZer1 wrote:Sal is there discussion about the role of CSF and it's issues amongst the group?

It appears that the CCSVI learnings are bouncing against the findings with CSF, such as, the lymph system that appeared out of nowhere! This all comes back to the multitasks and feedback systems that we humans rely on in every human health system. If the BBB has a leak for instance the vascular leaks are one issue and the CSF leaks are another. In some ways it could be said that two levels of BBB function are important for brain/CNS health. The cause of the leak is important naturally but the search needs to be about the package, CSF, blood, immune system, diet etc etc.

The Rosa/Damadian findings because of Upright MRI, the Kipnis findings of the lymph pathway in the CNS, the Zamboni findings of vascular flow abnormalities and slow general flow in PwMS, and the other major findings all have a common factor which is the CSF and it's many tasks in the CNS.

These all got sidelined by the MS Industry/Pharma and drugs and more drugs that have been on offer to modify the issues, not look at the issues or to find reasons that they occur and continue to occur. In much the way that EAE was used as a sales tool for MS.

Diet, lifestyle, mindfulness and exercise have also shown that much of the base issues, the multiple triggers that lead to or cascade to MS dx are in many respects Human issues. In saying that not one thing will fix or cure or change MS long term. It has to be a monitored multitask approach which in general the Health industry isn't geared up for, 15 mins with a GP, a 50 min hour with a Specialist eg Neuro will not even scratch the surface of what needs to be undertaken as a treatment.

So imo CSF awareness cries out for acknowledgement as much as CCSVI awareness does!

;)
Nigel, Did you know that the ISNVD's keynote speaker at this year's meeting in NYC was Yani Kipnis and last year it was Mat Daemen, a dutch cardiologist? We also had sessions on CSF hydrodynamics, hydrocephalus and the heart-brain axis. Basic research on neuro-endothelial injury markers the role of the glymphatic system were also reported. In addition to imaging evaluation of the circulation and brain perfusion in a variety of diseases.

Our society seems to be morphing from venous disease and MS to a much more varied approach. I had some discussions with MS community leaders who were concerned that we were moving off our core interest in CCSVI and MS. I assured them that veins cannot be studied in a vacuum outside of the remaining hemo- and hydro-dynamic components. That while perhaps not so directly involved in MS, we have to look at all of the components of the neurovasculature system (and lymphatics are considered part of the vasculature). That means from the heart to the brain and spine and back to the heart.

We want to be the group known for looking at the full vascular picture. That is our thought style and our collective mood.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com

User avatar
NZer1
Family Elder
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Post by NZer1 » Fri Jun 10, 2016 10:19 pm

Hi Sal,
you guys are doing fantastic things for PwMS, thank you!

I'm glad that we have kept you interested in being on the leading edge of a knowledge wave! ;)

Yes, the findings that have occurred in the last few years that interlink degenerative diseases is profound and it's great to have Wisdom and experience guiding us through this time.

I am reading and posting on Facebook daily still and there are some very committed people supporting this information sharing, too many names to remember and not wanting to leave anyone out!

https://www.facebook.com/CCSVI-in-New-Z ... 636357984/

Thanks Sal, thanks everyone!
Nigel :)

User avatar
1eye
Family Elder
Posts: 3746
Joined: Wed Mar 17, 2010 3:00 pm
Location: Kanata, Ontario, Canada
Contact:

Re: DrSclafani answers some questions

Post by 1eye » Sat Jun 11, 2016 5:09 pm

"Abraham Lincoln said it something like this"

Oh dear. Painful words to read. Oh well. He also was the first republican president. That party are currently feeling ashamed, more than usual.

I think we are impressed when people, like Einstein, have a breakthrough that eventually defines their field, but at that time is a field of which they are not even thought of as members. I am waiting for someone who will make a discovery which is so breathtaking everybody acknowledges it, but will coincidentally explain MS so everyone will also acknowledge that. Everyone thinks MS is so complex, but someday everyone will think it is simple. Maybe it will be someone in ISNVD, but maybe not a vein person.

To digress, about dreams... I think pwMS have trouble dreaming. I do. I think I almost never dream. Last night (actually probably this morning -- I slept very late) I had a very long, very detailed dream. It was about misplacing my hat and gloves on a tour of the US Capitol building. My grandmother was in it (though she died in 1976).

I remembered, in this dream, something entirely unrelated. She had in the 1960s worked for a congressman named Bill Broomfield, in Washington, DC. She campaigned for Richard Nixon in 1960. In 1968 she regretted it. Anyway, I found my gloves, and also my grandmother, in the dream. But while I was still in the dream, I remembered an unrelated promise my grandmother had made to me when I was little.

This part was real (the promise). She didn't live to keep it, though I have no idea why. Around the time of her working in Washington, she told me, Bill Broomfield had made her a gift of an American flag. What crossed my mind in the dream this morning, was that she had promised to give it to me. I must have been very young. The special thing about that particular flag was that, according to her, it was the flag that had flown over the Capitol building, the day that Alaska had become a state. I have not even looked up the date, but I think I remember that happening.

So anyway, I hope I have more dreams. I really liked my grandmother.
This unit of entertainment not brought to you by FREMULON.
Not a doctor.

User avatar
CureOrBust
Family Elder
Posts: 3361
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: DrSclafani answers some questions

Post by CureOrBust » Mon Jun 13, 2016 5:03 pm

Dr Sclafani, have you seen or know of anyone maybe outside of Zamboni's inner team, that have any knowldge regarding the collar tested in space? it appears they will be using it in some form at the new Italian testing site.

https://translate.googleusercontent.com ... i-avanzata
CCSVI, will be born in Ferrara center of advanced diagnostic audience
...This will be the first public center in Italy to use the new recently developed diagnostic methods at the University Hospital of Ferrara, and experience, as part of government space programs, Italian astronaut Samantha Cristoforetti during the international space mission of Last year. ...

User avatar
drsclafani
Family Elder
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani » Wed Jun 15, 2016 5:47 am

CureOrBust wrote:Dr Sclafani, have you seen or know of anyone maybe outside of Zamboni's inner team, that have any knowldge regarding the collar tested in space? it appears they will be using it in some form at the new Italian testing site.

https://translate.googleusercontent.com ... i-avanzata
CCSVI, will be born in Ferrara center of advanced diagnostic audience
...This will be the first public center in Italy to use the new recently developed diagnostic methods at the University Hospital of Ferrara, and experience, as part of government space programs, Italian astronaut Samantha Cristoforetti during the international space mission of Last year. ...
Your link was defective and I could not read it.

No, I do not know how the collar is progressing in its design to practice course.

I am now of the opinion that ultrasound screening is not critical in detecting ccsvi in patients with MS. Almost all patients have some form of venous outflow obstructions and some cannot be detected by ultrasound, only by IVUS and venography.
If the collar is beneficial in following my patients, I would find that valuable

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

Cece
Family Elder
Posts: 9323
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by Cece » Wed Jun 15, 2016 2:56 pm

drsclafani wrote:Our society seems to be morphing from venous disease and MS to a much more varied approach. I had some discussions with MS community leaders who were concerned that we were moving off our core interest in CCSVI and MS. I assured them that veins cannot be studied in a vacuum outside of the remaining hemo- and hydro-dynamic components. That while perhaps not so directly involved in MS, we have to look at all of the components of the neurovasculature system (and lymphatics are considered part of the vasculature). That means from the heart to the brain and spine and back to the heart.

We want to be the group known for looking at the full vascular picture. That is our thought style and our collective mood.
Expanding the scope of ISNVD, as described above, is good for ISNVD because it brings in more professionals. If ISNVD is thriving, then that is good for all of us, I think.

User avatar
CureOrBust
Family Elder
Posts: 3361
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: DrSclafani answers some questions

Post by CureOrBust » Wed Jun 15, 2016 4:18 pm

drsclafani wrote:Your link was defective and I could not read it.
Sorry. :oops: Its a link to the original Italian document, passed through google translate. The original italian link is:
http://www.osservatoriomalattierare.it/ ... i-avanzata
If you wish to read it in English, you can enter it into Google translate yourself.
http://translate.google.com

User avatar
NHE
Volunteer Moderator
Posts: 5162
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 16 times
Contact:

Re: DrSclafani answers some questions

Post by NHE » Wed Jun 15, 2016 5:31 pm

CureOrBust wrote:
drsclafani wrote:Your link was defective and I could not read it.
Sorry. :oops: Its a link to the original Italian document, passed through google translate. The original italian link is:
http://www.osservatoriomalattierare.it/ ... i-avanzata
If you wish to read it in English, you can enter it into Google translate yourself.
http://translate.google.com
Or just click on the British flag in the upper left corner.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post