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PostPosted: Fri Mar 22, 2013 10:30 am 
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tzootsi wrote:
Welcome back Dr. S! What is your general take on the disappointing Buffalo study? What was the mood at ISNVD as far as CCSVI - optimism and hope for more research or continuing to fight a battle with the medical establishment?


it is a piece of the puzzle.

It does document scientifically what happens when someone who has treated only 9 patients does a study.

We all remember the problems that occurred early in 2010, unnecessary stents, missed diagnoses, over and under dilatation, inadequate anticoagulation, prolonged 5-10 minute inflations, thromboses, to name a few.

The mood was complicated. excitement, discouragement, resentment, hope,, collegiality, frustration, and dogged determination to seek the truth.

fight with the medical establishment? Me? I look forward to

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9:00 – 10:30 am PDT / 5:00 – 6:30 pm GMT

Join us for a global webcast of TEDxChange 2013: Positive Disruption, convened by Melinda Gates. Watch live at: http://TEDxChange.org/

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PostPosted: Fri Mar 22, 2013 12:44 pm 
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dlynn wrote:
Dr. Sclafani,
Is it possible that muscle tension in the neck/shoulder area could cause compression of the vessels? Is a tension headache caused by constricted vessels? Could chronic leg pain be caused by an insufficient blood supply (somewhere)? Could poor blood supply also cause the myelin sheath to die?
Thank you

dlynn


Muscle compression of the internal jugular veins is well known. It is usually relieved by turning or flexing or extending the neck. Even opening the mouth may have such effect. Tension headaches have many possible causes and spasm of arteries is one of them. I have noted that venous congestion in the back of the neck often is associated with tension and pain near the base of the skull in the back. it is sometimes relieved after venoplasty.

chronic leg pain may be caused by nerve compressions like disk herniations, neuropathies, venous obstructions aand venous incompetency and arterial stenoses from arteriosclerosis. Chronic leg pain is a very complicated subject.

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PostPosted: Fri Mar 22, 2013 1:09 pm 
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drsclafani wrote:
Robnl wrote:
Feels like using à guy without drivers license to test à Ferrari ;-)


actually more like someone who just received a drivers license now going to drive a ferrari in a midtown street


Yes, indeed...that's à beter one!


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PostPosted: Fri Mar 22, 2013 6:15 pm 
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Dr Zamboni seeking a patent:
Dr. Zamboni has applied for a patent on a valvulotomy device:
Quote:
A DEVICE FOR TREATING VALVULAR MALFORMATIONS IN PERIPHERAL VENOUS VESSELS, SUCH AS INTERNAL JUGULAR VEINS AND KIT THEREFOR
Abstract: A device for venous valvulotomy, usable for example for valvulotomy of the jugular veins includes: - a cutting tool (12) having at least one cutting formation (120) for performing the action of valvulotomy; and - a collection element (14), set in a proximal position with respect to the cutting tool (12) for collecting the residue of valvulotomy entrained by the blood flow from the cutting tool (12).
http://www.wipo.int/pctdb/en/wo.jsp?IA=IB2010053355
This is picture link
http://img863.imageshack.us/img863/6906 ... mytool.png
Dr. Sinan uses this way, he said that all patients who have been subjected to this procedure did not have restenosis


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PostPosted: Sat Mar 23, 2013 1:37 am 
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Robnl wrote:
drsclafani wrote:
Robnl wrote:
Feels like using à guy without drivers license to test à Ferrari ;-)


actually more like someone who just received a drivers license now going to drive a ferrari in a midtown street


Yes, indeed...that's à beter one!


So:
Study object: Drive a Ferrari through Manhatten at 6PM
Results: Ferrari hit wall, completely wrecked
Conclusion: A Ferrari is a bad car, you should not buy it, production should be forbidden

Sponsor: Volswagen AG

:lol: :mrgreen: :lol:


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 Post subject: Re:
PostPosted: Thu Mar 28, 2013 9:45 pm 
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chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-690.html#p105219
drsclafani wrote:
this is going to be a big challenge. that patients feel dramatically improved early means we are doing something good but why there is a setback in some is unclear. All our anecdotal patient followup is very difficult to sort out. Is the set back because the autonomic system re-regulates itself with time after liberation? is it restenosis.....so many questions to answer!

This is something you said back in 2010 that turned up in a search for 'autonomic' because that's the sort of thing I sit around doing.

What do you think now? In cases where restenosis is ruled out, could a symptomatic setback be a result of the autonomic nervous system re-regulating itself back to its original state some time after venoplasty?


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PostPosted: Thu Mar 28, 2013 10:09 pm 
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chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-1680.html#p114889
drsclafani wrote:
The only complication my patients have had during liberations i have performed (it seems in another lifetime before I got more heavily involved as a writer :evil: ) was a young man in early 30s who developed atrial fibrillation immediately after liberation. I suspected a profound change in his autonomic nervous system occured during liberation. the AF reverted to normal within 12 hours but he has been the only patient to need unplanned admission.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-1515.html#p113213
drsclafani wrote:
The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6165.html#p182069
drsclafani wrote:
Dania, my own assessment is that treating CCSVI does something positive for autonomic function. That autonomic function results in improvement vasomotor tone. Also if muscle function is improved, dependent edema may also be improved as muscle function drives blood that has pooled up the legs.

Somehow; something positive; a profound change occurred.
If we dismiss Dr. Arata's idea that the effect of venoplasty on the autonomic nervous system is caused by vagus nerve compression or the delivery of physical energy to autonomic fibers, then we are left with the observation that somehow, CCSVI venoplasty does something positive to the autonomic nervous system.
That works well enough for me.


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 Post subject: Re: Re:
PostPosted: Thu Mar 28, 2013 10:46 pm 
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Cece wrote:
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-690.html#p105219
drsclafani wrote:
this is going to be a big challenge. that patients feel dramatically improved early means we are doing something good but why there is a setback in some is unclear. All our anecdotal patient followup is very difficult to sort out. Is the set back because the autonomic system re-regulates itself with time after liberation? is it restenosis.....so many questions to answer!

This is something you said back in 2010 that turned up in a search for 'autonomic' because that's the sort of thing I sit around doing.

What do you think now? In cases where restenosis is ruled out, could a symptomatic setback be a result of the autonomic nervous system re-regulating itself back to its original state some time after venoplasty?


Cece I followed your chat with Mike Arata on fb and have come up with another thought on the dysautonomia concept. If there was a reset of function of autonomic system it would be repeatable I would have thought, yet this is not what we are seeing.

Nigel


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PostPosted: Tue Apr 02, 2013 8:34 am 
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Nigel, I've come to the conclusion that Dr. Arata needs the ever elusive superIVUS that has been discussed here before. (A new improved IVUS intravascular ultrasound that is 10 time sharper than old IVUS.) He is ballooning the area of the valves, as are all the IRs, although he is ballooning valves that appear normal, which is different than all IRs. Normal healthy valve leaflets are too thin to show up on regular IVUS. With the new better IVUS, we could get a moving image of these supposedly normal valve leaflets. Either they are indeed normal or they are thickened as is seen in MS or they might be dysregulated so that the flapping is not in sync. This dysregulation of valve leaflet motion could be a result of the dysautonomia and could contribute to flow disruption, which could explain the improvement Dr. Arata has seen when these valves are ballooned. It is at least a way to investigate but the new IVUS is needed.

OK Dr. Sclafani can have his thread back now. Sorry for too many posts!


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PostPosted: Tue Apr 02, 2013 12:46 pm 
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Cece the factor that will decide the Arata approach is likely to be in relation to the nerve signal conduction within the vein and it may be that science needs to look at the function of valves, the leaflets, the annulus, the connection between the vein wall conduction systems and these parts.
The cross over from the physical to the conduction will need to be understood imo. We are at another learning opportunity that will implicate many other de-generative diseases.
If we look at the whole or entire symptom group of all de-generative diseases there are common 'causes' of symptoms that are at the core or centre of the onion when the layers of illness are peeled back.
Commonality is showing us that under all the surface findings are some deep seated 'reasons' for patterns of ill health. Things such as Leaky Gut Syndrome that has compounded exponentially over a Life time.
Specialists get lost in their compact field of knowledge and have difficulty opening up to other specialities and combining the search for inter connective patterns.
What has to be understood is the passage of time during ill health and the compounding confusion that masks the core issues.
The Arata example is one where a snippet of change is made to a complex health outcome that has become established over decades and the simple answers are never the final answer.
The example of numbing the same area of Annulus and Valve section of a vein with injectable anaesthetic also gives the same outcome on doppler as the Arata method is an example of how easily assumptions about 'success' of the Arata type methods is not true success but brief alterations of inputs to a problem. The problem still exists and has morphed into some thing more complex.

Leaky Gut Syndrome is my thought!

;)
Nigel


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PostPosted: Tue Apr 02, 2013 1:40 pm 
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Cece wrote:
Nigel, I've come to the conclusion that Dr. Arata needs the ever elusive superIVUS that has been discussed here before. (A new improved IVUS intravascular ultrasound that is 10 time sharper than old IVUS.) He is ballooning the area of the valves, as are all the IRs, although he is ballooning valves that appear normal, which is different than all IRs. Normal healthy valve leaflets are too thin to show up on regular IVUS. With the new better IVUS, we could get a moving image of these supposedly normal valve leaflets. Either they are indeed normal or they are thickened as is seen in MS or they might be dysregulated so that the flapping is not in sync. This dysregulation of valve leaflet motion could be a result of the dysautonomia and could contribute to flow disruption, which could explain the improvement Dr. Arata has seen when these valves are ballooned. It is at least a way to investigate but the new IVUS is needed.

OK Dr. Sclafani can have his thread back now. Sorry for too many posts!

Do the thickened valves flap around or cause the vein to vacillate on a point? If they do, I wonder if they couldn't disrupt nerve transmissions the same way an artery can when it compresses a nerve. Maybe that's why ballooning functioning valves works...they'd have to be thickened or abnormal in some way though. If this is the case, then it would be the removal of a chronic mechanical stimulation rendering some of the PTA improvements (rather than the addition of mechanical stimulation during the ballooning event).


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PostPosted: Tue Apr 02, 2013 7:20 pm 
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Not the best example but maybe relevant???
http://circres.ahajournals.org/content/ ... 7.full.pdf
Quote:
The fundamental natural frequency of the closed cusps of porcine bioprosthetic valves, fabricated from the normal leaflets of pig aortic valves, was estimated using a finite element model. Both normal and stiffened leaflets were considered in the vibrational analysis. The effects of conditions that simulated degeneration, such as stiffening, central perforation, a tear, calcium deposits in the commissural attachments, and combinations of these were determined. The primary frequency of vibration of the normal leaflets was within the range of the dominant frequency of the heart sounds determined clinically by spectral analysis of the recorded phonocardiogram. If only one leaflet was stiffened or calcined, there was only a marginal change of frequency. With stiffening and calcification of the commissures of all 3 leaflets, the frequency of vibration increased. Introduction of a tear in a single leaflet of a stiffened and calcified valve markedly reduced the fundamental frequency. In view of the relation between the frequency content of heart sounds and the frequency of valve vibration, this mathematical simulation establishes a possible basis for the observation of a varying dominant frequency of heart sounds in patients with bioprosthetic valves that are in the process of degenerating. (Circulation Research 1987;61:687-694)

Dr. S,
Do the abnormal valves vibrate?


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PostPosted: Wed Apr 03, 2013 1:00 pm 
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Anonymoose wrote:
Not the best example but maybe relevant???
http://circres.ahajournals.org/content/ ... 7.full.pdf
Quote:
The fundamental natural frequency of the closed cusps of porcine bioprosthetic valves, fabricated from the normal leaflets of pig aortic valves, was estimated using a finite element model. Both normal and stiffened leaflets were considered in the vibrational analysis. The effects of conditions that simulated degeneration, such as stiffening, central perforation, a tear, calcium deposits in the commissural attachments, and combinations of these were determined. The primary frequency of vibration of the normal leaflets was within the range of the dominant frequency of the heart sounds determined clinically by spectral analysis of the recorded phonocardiogram. If only one leaflet was stiffened or calcined, there was only a marginal change of frequency. With stiffening and calcification of the commissures of all 3 leaflets, the frequency of vibration increased. Introduction of a tear in a single leaflet of a stiffened and calcified valve markedly reduced the fundamental frequency. In view of the relation between the frequency content of heart sounds and the frequency of valve vibration, this mathematical simulation establishes a possible basis for the observation of a varying dominant frequency of heart sounds in patients with bioprosthetic valves that are in the process of degenerating. (Circulation Research 1987;61:687-694)

Dr. S,
Do the abnormal valves vibrate?


Thanks Anonymoose,
It would appear that the nerve sensing at the valves may be multi-faceted and be as much about the body sensing flow and volume as it is about about dysautonomia concept ideas.
The finding from swine aorta studies indicates that the nerves are detecting function as well as rhythm of beating.
Another field of knowledge needed to fathom this aspect!

;)
Nigel


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 Post subject: Re: Re:
PostPosted: Fri Apr 05, 2013 9:28 pm 
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Cece wrote:
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-690.html#p105219
drsclafani wrote:
this is going to be a big challenge. that patients feel dramatically improved early means we are doing something good but why there is a setback in some is unclear. All our anecdotal patient followup is very difficult to sort out. Is the set back because the autonomic system re-regulates itself with time after liberation? is it restenosis.....so many questions to answer!

This is something you said back in 2010 that turned up in a search for 'autonomic' because that's the sort of thing I sit around doing.

What do you think now? In cases where restenosis is ruled out, could a symptomatic setback be a result of the autonomic nervous system re-regulating itself back to its original state some time after venoplasty?


I do not think that manipulation of the vagal nerve is a big player in these improvements so i do not think that reregulation is a common explanation. Did you all know that the vagus nerve controls the vocal cords. When the vagal nerve is dysfuctional, hoarseness develops. This is not a common complication of venous angioplasty. This concept just does not make sense to me.

I think that cranial nerve functions are improved in many patients and this does explain many improvements , such as nystagmus, dysphagia, dysarthria, sweating (uncommonly improved by the way), taste and smell, balance, facial motor function and sensations, eye movements. There are twelve cranial nerves and improvements in their functions is not uncommon. That cannot be a direct effect of balloon angioplasty because the balloono never comes close to these cranial nerves. Why do they get improved? perhaps mprovements in CSF flow after angioplasty relieve some compression of the brain stem where these cranial nerves, including the vagus, are located.

s

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Patient contact: ccsviliberation@gmail.com


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PostPosted: Fri Apr 05, 2013 9:29 pm 
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Cece wrote:
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-1680.html#p114889
drsclafani wrote:
The only complication my patients have had during liberations i have performed (it seems in another lifetime before I got more heavily involved as a writer :evil: ) was a young man in early 30s who developed atrial fibrillation immediately after liberation. I suspected a profound change in his autonomic nervous system occured during liberation. the AF reverted to normal within 12 hours but he has been the only patient to need unplanned admission.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-1515.html#p113213
drsclafani wrote:
The circulation in the hands and feet is affected by the autonomic nervous system in ms. this leads to purple feet and hands.

somehow, relieving the venous outflow improved autonomic nerve function

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-6165.html#p182069
drsclafani wrote:
Dania, my own assessment is that treating CCSVI does something positive for autonomic function. That autonomic function results in improvement vasomotor tone. Also if muscle function is improved, dependent edema may also be improved as muscle function drives blood that has pooled up the legs.

Somehow; something positive; a profound change occurred.
If we dismiss Dr. Arata's idea that the effect of venoplasty on the autonomic nervous system is caused by vagus nerve compression or the delivery of physical energy to autonomic fibers, then we are left with the observation that somehow, CCSVI venoplasty does something positive to the autonomic nervous system.
That works well enough for me.

to repeat, i am betting that improvements are related to brain stem functions, not peripheral nerve improvements

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Patient contact: ccsviliberation@gmail.com


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