DrSclafani answers some questions

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

Re: Dr Sclafani answers some questions

Postby Cece » Mon May 03, 2010 8:55 pm

drsclafani wrote:I cannot rest knowing you need help

you do seem exceedingly motivated :)

I feel sick when I think of the clock ticking...who knows how long it'll be until this is proven and standard care, assuming it is true and will become standard care.
Last edited by Cece on Tue May 04, 2010 9:39 am, edited 1 time in total.
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Re: Patient post-procedure changes

Postby drsclafani » Mon May 03, 2010 9:10 pm



CT scans, cool! I've heard that it is difficult to see azygos until venogram. Did you try CT scans because of that?


i am not using CT scans of patients with MS. I am looking at CT scans of the chest to figure out what the path of the azygous vein is, what the diameter of the AZY V is

that will help me recommend the angle to turn the angiography tube to best see the AZYV
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Posture Therapy or Surgery?

Postby AndrewKFletcher » Tue May 04, 2010 2:17 am

Dr Sclafani

how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow, oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery. so much to learn, it will take the rest of my useful career, and i am thankful for that.
clearly such improvements in the moment, sometimes even before the procedure is completed will lead to doubts, especially by those who don't want to have been this wrong.



My money is on the improved tension and reduction in pressure in the venous return stimulating the cerebrospinal fluid flow. I.B.T addresses this using posture alone to change the pressure and increase the tension on the blood inside the veins, the evidence being the dramatic improvements in chronic venous insufficiency, oedema and varicose veins. Before and after Photographs available for evidence.

IBT has been shown right here in this forum to stimulate significant recovery in RR, PP and SP ms. Yet it is continually ignored? These results are very real and need to
To be taken into account.

IBT should be the very first intervention for all people with ms. And it is not just about how blood circulates, it addresses all circulation including blood flow, the cerebrospinal fluid circulation, lymph circulation and the circulation in the skin.

This simple postural therapy has also worked with spinal cord injury and Parkinsons's disease, neither of which are identified as associated with CCSVI.

Yet habitual unscientific adherence to flat bed rest which has been shown to be harmful in the literature time and time again that even in just a few hours of flat bed rest the body begins to shut down and the longer we remain flat the more damage to our body we do and this has been known and reported by doctors over the decades, while hospitals continue to use a horizontal model for recovery?

Insanity is to keep doing the same thing over and over again and expecting to get different results. This also applies to the insanity of sleeping flat and expecting to wake up to health improvements.

Sleeping flat for 24 hours has been shown to cause considerable problems for circulation. Maybe the cumulative effect of retiring to a flat bed each night is sufficient to cause neurological degeneration in people who are more susceptible to it's harmful effects?

Long before vascular stent and balloon surgery became an option, people with ms were finding remarkable improvements using Inclined Bed Therapy.

When I try to speak about it here, people but in and say on behalf of everyone reading this thread that we don’t want to hear it. Well I am not going to be silenced as long as there are people who need to learn about this safe and effective alternative to surgery.

In the unlikely event that IBT does not begin to work over 4 months then and only then should anyone consider a surgical approach and let’s face it there are many people on waiting lists who could at least put postural therapy to the test.
http://www.andrewkfletcher.com/index.php?option=com_agora&task=topic&id=69&Itemid=30

Dr Claude Francheschi advocates postural therapy as an answer to CCSVI and he now advises ms patients to sleep on an inclined bed.

The following paper is translated using Google translater which you might find interesting.

Venous insufficiency and splitting dynamics of hydrostatic pressure column

Sang Thrombose Vaisseaux. Volume 13, Number 5, 307-10, May 2001, Lexicon

Summary
Author (s): Claude Franceschi, cardiovascular center, St. Joseph Hospital, 185 rue Raymond Losserand, 75674 Paris Cedex 14 ..
Abstract: A better understanding of the pathophysiology of hemodynamic venous system is necessary not only for diagnosis but also to improving the treatment of venous insufficiency. The clinical and laboratory manifestations of venous insufficiency is the consequence of a hemodynamic disorder. This disorder can be defined as the inability of the system to ensure a unidirectional flow cardiopète venous flow and pressure responsive tissue drainage, temperature control and filling of the heart regardless of the conditions of posture and muscle activity. Given that symptoms are reduced and become worse clinostatism orthostasis, it is obvious that the conditions of posture and therefore the hydrostatic pressure determines the onset of symptoms such as regression of the disease. All this according to the laws of gravity that the hydrostatic pressure is almost zero and maximum clinostatism orthostasis. The venous pressure at the ankle also varies in supine and standing motionless in healthy subjects as venous insufficiency in the subject. But walking, it decreases much less in venous insufficiency than in healthy subjects. This shows that there is a way of controlling the hydrostatic pressure at idle but active rest while walking and lower efficacy in venous insufficiency than in healthy subjects. This phenomenon may be related to the action of the pump-valvulo muscle would split the column of hydrostatic pressure in the lower limb muscle activity. The most common hemodynamic disturbance responsible for venous insufficiency, is thus the result of a lack of what we call the dynamic fractionation column of hydrostatic pressure (FDPH).
http://www.john-libbey-eurotext.fr/fr/r ... icle.phtml
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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Re: Patient post-procedure changes

Postby karenul » Tue May 04, 2010 5:41 am

Dear Dr. Sclafani,

Of course you can not actually DO the procedure while waiting for approval, but could you (would you) look at scans and comment on them from patients?

AND MOST IMPORTANT : to those on this site....do NOT post names of doctors. It's a sure fire way of having them shut down!!
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Re: Posture Therapy or Surgery?

Postby Cece » Tue May 04, 2010 9:34 am

AndrewKFletcher wrote:When I try to speak about it here, people but in and say on behalf of everyone reading this thread that we don’t want to hear it.

'people but in' - it was Dr. Sclafani, who created this thread, who told you that this is better suited for your IBT thread and not this one.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Re: Posture Therapy or Surgery?

Postby Zeureka » Tue May 04, 2010 11:14 am

AndrewKFletcher wrote:
In the unlikely event that IBT does not begin to work over 4 months then and only then should anyone consider a surgical approach and let’s face it there are many people on waiting lists who could at least put postural therapy to the test.

Yes, while waiting one can of course already try IBT to monitor if some relief. I however do not see why postural therapy should exclude percutaneous venoplasty when a stenosis is found. In case of a stenosed vein this makes generally common sense to regenerate blood flow and in my view does not exclude the practice of IBT in addition...the combination should do the trick, or not? ;-)
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Re: Posture Therapy or Surgery?

Postby drsclafani » Tue May 04, 2010 11:18 am

AndrewKFletcher wrote:
Dr Sclafani

how can i explain these abrupt changes.? we can all guess cant we. perhaps myelin transmission needs certain amount of blood flow, oxygen pressure reduction, cleansing for improved function. Your guess is as good as mine at this point. Like i keep saying we are just beginning an age of discovery. so much to learn, it will take the rest of my useful career, and i am thankful for that.
clearly such improvements in the moment, sometimes even before the procedure is completed will lead to doubts, especially by those who don't want to have been this wrong.



My money is on the improved tension and reduction in pressure in the venous return stimulating the cerebrospinal fluid flow. I.B.T addresses this using posture alone to change the pressure and increase the tension on the blood inside the veins, the evidence being the dramatic improvements in chronic venous insufficiency, oedema and varicose veins. Before and after Photographs available for evidence.

IBT has been shown right here in this forum to stimulate significant recovery in RR, PP and SP ms. Yet it is continually ignored? These results are very real and need to
To be taken into account.

IBT should be the very first intervention for all people with ms. And it is not just about how blood circulates, it addresses all circulation including blood flow, the cerebrospinal fluid circulation, lymph circulation and the circulation in the skin.

This simple postural therapy has also worked with spinal cord injury and Parkinsons's disease, neither of which are identified as associated with CCSVI.

Yet habitual unscientific adherence to flat bed rest which has been shown to be harmful in the literature time and time again that even in just a few hours of flat bed rest the body begins to shut down and the longer we remain flat the more damage to our body we do and this has been known and reported by doctors over the decades, while hospitals continue to use a horizontal model for recovery?

Insanity is to keep doing the same thing over and over again and expecting to get different results. This also applies to the insanity of sleeping flat and expecting to wake up to health improvements.

Sleeping flat for 24 hours has been shown to cause considerable problems for circulation. Maybe the cumulative effect of retiring to a flat bed each night is sufficient to cause neurological degeneration in people who are more susceptible to it's harmful effects?

Long before vascular stent and balloon surgery became an option, people with ms were finding remarkable improvements using Inclined Bed Therapy.

When I try to speak about it here, people but in and say on behalf of everyone reading this thread that we don’t want to hear it. Well I am not going to be silenced as long as there are people who need to learn about this safe and effective alternative to surgery.

In the unlikely event that IBT does not begin to work over 4 months then and only then should anyone consider a surgical approach and let’s face it there are many people on waiting lists who could at least put postural therapy to the test.
http://www.andrewkfletcher.com/index.php?option=com_agora&task=topic&id=69&Itemid=30

Dr Claude Francheschi advocates postural therapy as an answer to CCSVI and he now advises ms patients to sleep on an inclined bed.

The following paper is translated using Google translater which you might find interesting.

Venous insufficiency and splitting dynamics of hydrostatic pressure column

Sang Thrombose Vaisseaux. Volume 13, Number 5, 307-10, May 2001, Lexicon

Summary
Author (s): Claude Franceschi, cardiovascular center, St. Joseph Hospital, 185 rue Raymond Losserand, 75674 Paris Cedex 14 ..
Abstract: A better understanding of the pathophysiology of hemodynamic venous system is necessary not only for diagnosis but also to improving the treatment of venous insufficiency. The clinical and laboratory manifestations of venous insufficiency is the consequence of a hemodynamic disorder. This disorder can be defined as the inability of the system to ensure a unidirectional flow cardiopète venous flow and pressure responsive tissue drainage, temperature control and filling of the heart regardless of the conditions of posture and muscle activity. Given that symptoms are reduced and become worse clinostatism orthostasis, it is obvious that the conditions of posture and therefore the hydrostatic pressure determines the onset of symptoms such as regression of the disease. All this according to the laws of gravity that the hydrostatic pressure is almost zero and maximum clinostatism orthostasis. The venous pressure at the ankle also varies in supine and standing motionless in healthy subjects as venous insufficiency in the subject. But walking, it decreases much less in venous insufficiency than in healthy subjects. This shows that there is a way of controlling the hydrostatic pressure at idle but active rest while walking and lower efficacy in venous insufficiency than in healthy subjects. This phenomenon may be related to the action of the pump-valvulo muscle would split the column of hydrostatic pressure in the lower limb muscle activity. The most common hemodynamic disturbance responsible for venous insufficiency, is thus the result of a lack of what we call the dynamic fractionation column of hydrostatic pressure (FDPH).
http://www.john-libbey-eurotext.fr/fr/r ... icle.phtml



MR FLETCHER, PLEASE USE THE FORUM ON IBT.
IF YOU HAVE A QUESTION ON CCSVI PLEASE ASK IT
IT IS UNNECESSARY TO CLUTTER THIS SITE WITH YOUR OPINION.
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Postby Bear2 » Tue May 04, 2010 12:55 pm

Dr. Sclafani,
First off, you are doing such a wonderful thing, educating everyone. Hope you get to be a plummer again soon.

I had a venogram in Jan 2010. It showed normal azygos and right ijv. The left had a mild stenois at the carotid bifurcation. Venoplasty of the left was performed. The end result was no change in any of my ms symptoms.

I had no doppler or MRV due the many reported that were negative for CCSVI due incorrect traning of operators or using the wrong protocals.

Is it possible that the venogram missed everything? I now undertstand the skill of the IR is very important. The writtent report indicates that the azygos was part of the procedure but I can't figure it out from my CD of the procedure. I feal like it was written down in the report but not really looked at very well.

The left ijv which was balloned did happen becuase I felt it. But the rest, I do not know. I am very dissapointed and hope to do this again soon. Hind sight is 20/20.

The venogram procedure took about 5 hours in/out of hospital. It was Far easier than going to the dentist. I would do this before having a tooth drilled.

Jim
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Postby Cece » Tue May 04, 2010 1:03 pm

Bear2, the azygous has been tricky for anyone outside of Zamboni to find stenoses there...it seems safe to assume your azygous wasn't imaged correctly, because no one has been imaging the azygous correctly.
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Postby drsclafani » Tue May 04, 2010 3:54 pm

Bear2 wrote:Dr. Sclafani,
First off, you are doing such a wonderful thing, educating everyone. Hope you get to be a plummer again soon.

I had a venogram in Jan 2010. It showed normal azygos and right ijv. The left had a mild stenois at the carotid bifurcation. Venoplasty of the left was performed. The end result was no change in any of my ms symptoms.

I had no doppler or MRV due the many reported that were negative for CCSVI due incorrect traning of operators or using the wrong protocals.

Is it possible that the venogram missed everything? I now undertstand the skill of the IR is very important. The writtent report indicates that the azygos was part of the procedure but I can't figure it out from my CD of the procedure. I feal like it was written down in the report but not really looked at very well.

The left ijv which was balloned did happen becuase I felt it. But the rest, I do not know. I am very dissapointed and hope to do this again soon. Hind sight is 20/20.

The venogram procedure took about 5 hours in/out of hospital. It was Far easier than going to the dentist. I would do this before having a tooth drilled.

Jim


i am skeptical about bifurcation narrowings. the lesion is often lower and the narrowing above may be physiological.
what is your classification. PPMS may not respond in the same way as RRMS
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Postby drsclafani » Tue May 04, 2010 4:02 pm

Cece wrote:Bear2, the azygous has been tricky for anyone outside of Zamboni to find stenoses there...it seems safe to assume your azygous wasn't imaged correctly, because no one has been imaging the azygous correctly.


Bear
i agree with cece. it is a challenge, but the challenge is often just the way we image it on venography. you want the xray beam to be perpendicular to the arch of the azygous, otherwise it is difficult to recognize abnormal valves.

funny, when i showed my first case to dr zamboni, he pointed immediately to the azygous and said: "abnormal azygous". i argued with him, silly man that i am. That is what stimulated me to look for a better way. When I showed him the case from the week of my shutdown, he said: "beautiful image. amazing to see three sets of valves in the azygous"

so again....we are in an age of discovery. Do not give up if someone missed the boat. hopefully your ship will come in soon
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Postby Lyon » Tue May 04, 2010 4:16 pm

.
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Postby Zeureka » Tue May 04, 2010 4:44 pm

Cece wrote:Bear2, the azygous has been tricky for anyone outside of Zamboni to find stenoses there...it seems safe to assume your azygous wasn't imaged correctly, because no one has been imaging the azygous correctly.
And apart from the azygous, couldn't there be a stenosis in one of the other ascending venous paths that are not yet routinely checked (and research ongoing)...this might also explain little improvements of MS symptoms in case of RRMS if more spinal MS...?
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Postby 1eye » Tue May 04, 2010 5:01 pm

Hello, Dr. Sclafani.

Sorry about my previous posts. I know I am prone to babble, just shet ma mouth. But I do have a few questions so here goes. First, to introduce myself, I am a software and former hardware engineering type who has been sidelined by this disease or condition or whatever it is today. I am limited to what I can write, and because for some reason my mouth and brain are no longer in synchronization, I find it easier to type.

Question 1. I was taught in engineering and long ago in third form chemistry that numbers described things better than words. Are there, besides the canonical five signs of CCSVI, any quantitative measures that I can look for in a doctor's report? I will probably not have the advantage of your personal percutaneous expertise but I am going for testing in a few days, so I am interested. Flow rates, pulsatility of reflux, percent of stenosis, you know the drill.

Question 2. I have seen many descriptions of expected improvements in what used to be called MS symptoms (I don't know why we are expecting any of those, since no link to MS has been *proven*, and we are only treating a vascular problem really), but I have not seen a description of the effect this procedure is supposed to have on our CCSVI. In numerical terms, and that whole 9 yards. You know what I mean? Just so I can sound quantitative when I talk about it. Ever since I reached a certain age, I have sworn to live only qualitatively, to avoid the pain of numbers that have seemed to grow out of control, but here, I think I'd better make an exception. Those analyzing data kept on the recipients of this work had better collect a few numbers too, much as we would like to avoid it.

Thanks again for all your assistance. Reminds me of a sign I once saw. In ancient times they used to have special 'call police' boxes with special phones in them in the UK. Someone had scratched out the letters 'AD', and the phone now just said "VICE AND ASSISTANCE OBTAINABLE IMMEDIATELY".

Did I say, thanks again?
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby L » Tue May 04, 2010 5:49 pm

I have mostly spinal lesions. Does the location of the lesion, Dr Sclafani, have any bearing, in your experience, on the location of the stenosis and also the prognosis/that benefit that people have received from treating CCSVI?

Thanks!
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