DrSclafani answers some questions

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
DrDiana
Family Elder
Posts: 176
Joined: Fri Dec 31, 2010 3:00 pm
Location: Texas
Contact:

Re: DrSclafani answers some questions

Post by DrDiana »

Hello all, Dr. Sal, You may remember my lecture (WAY BACK WHEN) ;) concerning looking for evidence of CCSVI in the fundus of the eye that I presented at your conference? I found this dissertation I thought you may be interested in. What I wanted to be sure you knew, was that I learned that looking for evidence of CCSVI in M.S. was difficult, because once sheathing of the vessels occurred (which usually happens when demyelination occurs), you couldn't tell what the heck was happening to the caliber of the vessels... So instead, I had to view patients with CCSVI who had not (yet, at least) developed M.S. Different results (although I agree with the findings on RFNL -- not on the findings of vessel caliber)! I think the study of CCSVI in M.S. may sometimes necessitate stepping away from demyelination (yet still looking at CCSVI) to *really* know the full story. Just my two cents... :) Here's the dissertation I found:

Navigation: FU Dissertationen Online / Mycore 2.0.2
Title variations Quantifying retinal vessels in multiple sclerosis
Subtitle for translated title Can it be useful examining pathologies of the venous system?
Author(s) Bilger, Frieder
Place of birth: Herrenberg

Introduction: Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system. Most accepted is an autoimmune and T-cell mediated etiology. However, since 2007 an Italian research team postulates a “Chronic Cerebrospinal Venous Insufficiency “ (CCSVI) as a main cause of MS and suggests angioplasty as a potential cure. The aim of this dissertation is to develop and to evaluate a method for semi-automatic quantification of retinal vessels on scanning laser ophthalmoscopic (SLO) pictures. By using this method the aim is to examine differences in retinal vessel caliber, especially a potential enlargement of retinal veins, between MS patients and healthy controls.

Methods: A new method for semi-automatic quantification of retinal vessels on SLO pictures has been developed. First, all vessels are manually categorized as arteries, veins or unknown vessels. Second, at defined measuring points an automatic algorithm using gray scale gradient determined the vessel caliber. Evaluation of this method showed very good conformance with established methods of quantifying vessels on fundoscopic photos as well as a very low dependency on investigators.

Results: Retinal pictures from 108 patients suffering from MS or clinically isolated syndrome have been compared with pictures from 96 healthy controls. There was no significant difference of vessel caliber between both groups. However, a significant correlation of vessel calibers and retinal nerve fiber layer thickness (RNFL) as well as total macular volume (TMV) has been identified.

Discussion: There was no sign of venous insufficiency in MS patients in this study. Therewith this study is in line with many other studies performed in reaction to the CCSVI thesis not showing any signs of MS specific venous insufficiency. The shown correlation of vessel calibers with RNFL and TMV needs to be considered as a disruptive factor measuring these parameters that could potentially enlarge or reduce existing effects
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by Cece »

From the ISNVD 2014 program book
http://www.isnvdconference.org/program/ ... -book.html
Left Renal Vein Compression Is Common In CCSVI

Salvatore Ja Sclafani, M.D., Fsir, Suny Downstate Mc/Fresenius Vascular Care

Introduction: Outflow obstructions of the cerebrospinal venous circulation (CCSVI) results in altered and symptomatic vascular hemodynamics and cerebrospinal fluid hydrodynamics. Left renal vein compression (LRVC) has also been reported to result in altered and symptomatic vertebrospinal hemodynamics. We sought to assess whether the incidence and severity of LRVC seen in CCSVI was greater than that found in the general public.

Methods: In this retrospective review, the incidence and degree of LRVC and the presence of ovarian, hemiazygo-renal trunk or ascending lumbar vein distension seen in 100 age and sex matched stable patients undergoing contrast enhanced abdominal CT scans to rule out acute traumatic injury were anonymously analyzed and compared to that of fifty consecutive patients undergoing catheter venography and intravascular ultrasound during evaluation and treatment of CCSVI.

Findings:In the trauma group LRVC was present in 11% of patients, although only two patient (90% and 72%) had greater than 50% stenosis. Seven patients had dilation of collaterals. In the CCSVI group, 62 % of patients had greater than 50% stenosis and 44% had greater than 70% stenosis. 54% had opacification of collateral networks.

Conclusions: LRVC has higher incidence and severity in patients with CCSVI than in healthy controls. While the greater accuracy of IVUS may partially explain the difference, the high incidence in CCSVI suggests that is contributes to the cerebrospinal venous disturbances seen in these patients.
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani »

Donnchadh wrote:Dr. Sclafani:

Have you ever used a cutting balloon catheter on a venous stenosis? Or know someone else who has?
Results, whether good or bad?

Donnchadh
Sorry for the delay. i havent gotten any notifications that I had notes to this thread

I have used cutting wires, but not cutting balloons. It is my sense that they increase the risk of thrombosis since they cut into the wall of the vein. The current cutting balloons are smaller than the size of most internal jugular veins so they must be used in parallel with another balloon or another cutting balloon.
Cutting balloons were designed to "score" the wall of an atherosclerotis artery or a scarred vessel prior to angioplasty. Personally I do not see much value for the average lesion in CCSVI associated with MS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani »

AMcG wrote:Just as an aside there are a couple of points I would like to make about Sal's revolutionary analogy. Although he is quite correct about Washington he doesn't mention that there were a large number of loyalists in New York who considered they had been liberated not conquered, I would also point out that not all Brits were (or are) Tories. There were many in the North of England (and still are) who had many relatives in the colonies and did not approve of the actions of King George and his government.

Being a Brit with Celtic ancestry in discussing CCSVI I would much prefer an analogy which puts us both on the same side!
I admit to an American slant on the story. However on this side of the pond i think that americans are still quite tied to britain, emotionally , financially, socially, ethically etc. I did not mean to disparage brits. the analogy was really too good to ignore. Our kings have names like king james (lebron), martin luther king, king kong, the king (elvis pressley) and nat king cole

Thankfully, in this current issue we all are on the same side.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani »

Robnl wrote:Well, originally new york was dutch, we traded it for 1 dollar and a country.
Still a lot ofdutch memories, like brooklyn==Breukelen , harlem==Haarlem

:mrgreen: :mrgreen:
also holland tunnel, amsterdam avenue
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani »

DrDiana wrote:Hello all, Dr. Sal, You may remember my lecture (WAY BACK WHEN) ;) concerning looking for evidence of CCSVI in the fundus of the eye that I presented at your conference? I found this dissertation I thought you may be interested in. What I wanted to be sure you knew, was that I learned that looking for evidence of CCSVI in M.S. was difficult, because once sheathing of the vessels occurred (which usually happens when demyelination occurs), you couldn't tell what the heck was happening to the caliber of the vessels... So instead, I had to view patients with CCSVI who had not (yet, at least) developed M.S. Different results (although I agree with the findings on RFNL -- not on the findings of vessel caliber)! I think the study of CCSVI in M.S. may sometimes necessitate stepping away from demyelination (yet still looking at CCSVI) to *really* know the full story. Just my two cents... :) Here's the dissertation I found:

Navigation: FU Dissertationen Online / Mycore 2.0.2
Title variations Quantifying retinal vessels in multiple sclerosis
Subtitle for translated title Can it be useful examining pathologies of the venous system?
Author(s) Bilger, Frieder
Place of birth: Herrenberg

Introduction: Multiple sclerosis (MS) is a chronic inflammatory and degenerative disease of the central nervous system. Most accepted is an autoimmune and T-cell mediated etiology. However, since 2007 an Italian research team postulates a “Chronic Cerebrospinal Venous Insufficiency “ (CCSVI) as a main cause of MS and suggests angioplasty as a potential cure. The aim of this dissertation is to develop and to evaluate a method for semi-automatic quantification of retinal vessels on scanning laser ophthalmoscopic (SLO) pictures. By using this method the aim is to examine differences in retinal vessel caliber, especially a potential enlargement of retinal veins, between MS patients and healthy controls.

Methods: A new method for semi-automatic quantification of retinal vessels on SLO pictures has been developed. First, all vessels are manually categorized as arteries, veins or unknown vessels. Second, at defined measuring points an automatic algorithm using gray scale gradient determined the vessel caliber. Evaluation of this method showed very good conformance with established methods of quantifying vessels on fundoscopic photos as well as a very low dependency on investigators.

Results: Retinal pictures from 108 patients suffering from MS or clinically isolated syndrome have been compared with pictures from 96 healthy controls. There was no significant difference of vessel caliber between both groups. However, a significant correlation of vessel calibers and retinal nerve fiber layer thickness (RNFL) as well as total macular volume (TMV) has been identified.

Discussion: There was no sign of venous insufficiency in MS patients in this study. Therewith this study is in line with many other studies performed in reaction to the CCSVI thesis not showing any signs of MS specific venous insufficiency. The shown correlation of vessel calibers with RNFL and TMV needs to be considered as a disruptive factor measuring these parameters that could potentially enlarge or reduce existing effects
diana
it is not my expertise, for sure. I am surprised that the author did not find any distension of these veins.
They did not study patients with CCSVI, however. So i am not sure what to conclude.

hope you are well

s
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
Donnchadh
Family Elder
Posts: 526
Joined: Sat Jan 23, 2010 3:00 pm

Re: DrSclafani answers some questions

Post by Donnchadh »

drsclafani wrote:
Donnchadh wrote:Dr. Sclafani:

Have you ever used a cutting balloon catheter on a venous stenosis? Or know someone else who has?
Results, whether good or bad?

Donnchadh
Sorry for the delay. i havent gotten any notifications that I had notes to this thread

I have used cutting wires, but not cutting balloons. It is my sense that they increase the risk of thrombosis since they cut into the wall of the vein. The current cutting balloons are smaller than the size of most internal jugular veins so they must be used in parallel with another balloon or another cutting balloon.
Cutting balloons were designed to "score" the wall of an atherosclerotis artery or a scarred vessel prior to angioplasty. Personally I do not see much value for the average lesion in CCSVI associated with MS
Thanks for your reply. Because the remaining stenosis in my distal IJV have proven resistant to even high pressure ballooning, I am seeking some alternative treatments.

There's an image of my stenosis located on this thread, near the end:

http://www.thisisms.com/forum/chronic-c ... ml#p221873

What is a "cutting wire"?

Couldn't anti-clotting drugs be used to counter the danger of thrombosis?

I welcome any suggestions how to correct this.

ETA: found this....is this what you mean by a cutting wire? It would seem easier to manipulate into position because it is much thinner than a cutting balloon.

Image

Donnchadh
Last edited by Donnchadh on Sat Feb 22, 2014 9:01 am, edited 2 times in total.
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
User avatar
NHE
Volunteer Moderator
Posts: 6262
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by NHE »

drsclafani wrote:I admit to an American slant on the story. However on this side of the pond i think that americans are still quite tied to britain, emotionally , financially, socially, ethically etc. I did not mean to disparage brits. the analogy was really too good to ignore. Our kings have names like king james (lebron), martin luther king, king kong, the king (elvis pressley) and nat king cole
Don't forget BB King and Albert King. 8)
PointsNorth
Family Elder
Posts: 683
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada
Contact:

Re: DrSclafani answers some questions

Post by PointsNorth »

And don't forget the third King: Freddie.

PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
User avatar
DrDiana
Family Elder
Posts: 176
Joined: Fri Dec 31, 2010 3:00 pm
Location: Texas
Contact:

Re: DrSclafani answers some questions

Post by DrDiana »

drsclafani wrote:
DrDiana wrote:Hello all, Dr. Sal, You may remember my lecture (WAY BACK WHEN) ;) concerning looking for evidence of CCSVI in the fundus of the eye that I presented at your conference? I found this dissertation I thought you may be interested in. What I wanted to be sure you knew, was that I learned that looking for evidence of CCSVI in M.S. was difficult, because once sheathing of the vessels occurred (which usually happens when demyelination occurs), you couldn't tell what the heck was happening to the caliber of the vessels... So instead, I had to view patients with CCSVI who had not (yet, at least) developed M.S. Different results (although I agree with the findings on RFNL -- not on the findings of vessel caliber)! I think the study of CCSVI in M.S. may sometimes necessitate stepping away from demyelination (yet still looking at CCSVI) to *really* know the full story. Just my two cents... :) Here's the dissertation I found:
diana
it is not my expertise, for sure. I am surprised that the author did not find any distension of these veins.
They did not study patients with CCSVI, however. So i am not sure what to conclude.
hope you are well
s
Exactly, Sal! I don't think venous dilation of the fundus is always obvious in M.S. because sheathing occurs. By looking at patients with CCSVI and other venous problems, sheathing isn't a factor and more information can be garnered. When I spoke at your conference, I had studied patients with connective tissue problems and patients with M.S. -- all with CCSVI. As the "blinded" doctor, I could separate out the patients from age-matched normals in connective tissue disease patients with 94% accuracy! Accuracy with M.S. was lower -- about 83%. I have ZERO doubt that venous problems are affecting M.S. patients. I can see it in their fundi -- but it can get lost in the problems with sheathing. I also have no doubt that venous drainage problems are rampant in other conditions (connective tissue, Chronic Lyme, etc) because, quite honestly, it is easy to see in the fundus (when someone points it out). As practitioners, we are not looking closely enough, IMHO. This was not taught to us in school, after all. As a patient -- like many here -- I use blood thinners, antithrombotics, etc to feel better. I can hardly wait until science can reveal what our bodies already know. ;)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
pelopidas
Family Member
Posts: 71
Joined: Mon Sep 05, 2011 6:30 am
Location: Greece

Re: DrSclafani answers some questions

Post by pelopidas »

Happy birthday, Dr Sclafani!
we wish you many years of successful ccsvi procedures and great results! :-D
getafix
User avatar
CD
Family Elder
Posts: 217
Joined: Sun Dec 19, 2010 3:00 pm
Location: USA
Contact:

Re: DrSclafani answers some questions

Post by CD »

Happy Birthday Dr. Salvatore Sclafani. May you live a long and wonderful life. Take care, CD
Where there is a will, there is a way. "HOPE"

CCSVI Procedure December 2010
tomaxok
Newbie
Posts: 1
Joined: Thu Mar 27, 2014 7:10 am

Re: DrSclafani answers some questions

Post by tomaxok »

Dr Sclafani which is the total cost of ccsvi procedure?
User avatar
drsclafani
Family Elder
Posts: 3182
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York
Contact:

Re: DrSclafani answers some questions

Post by drsclafani »

tomaxok wrote:Dr Sclafani which is the total cost of ccsvi procedure?
This not the correct forum for commercial discussion. This is is for discussion of important issue and concerns related to ccsvi

Write to me personally at
Ccsviliberation@gmail.com
And I will explain all to you
DrSclafani
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
Cece
Family Elder
Posts: 9335
Joined: Mon Jan 04, 2010 3:00 pm
Contact:

Re: DrSclafani answers some questions

Post by Cece »



Over on reddit, I did a search to see if CCSVI has ever been discussed there.
Indeed it has…and by a psclafani…which does NOT stand for Professor Sclafani…
Interestingly, the venous strictures warrant the treatment regardless of any MS connection.
Death is always a possibility in any decision we make. I think that the afflicted are looking for life to be a possibility too.
It is exciting medicine like this that makes me wish I had followed in his footsteps.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Chronic Cerebrospinal Venous Insufficiency (CCSVI)”