DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby drsclafani » Mon Dec 24, 2012 11:28 am

dania wrote:So far there is very little on peer reviewed literature. CCSVI is so very new.
http://www.fonar.com/pdf/PCP41_damadian.pdf.


From my first read, it was disappointing to read that the damadian group rejected, as controls, patients with abnormal spines without ms features. So they did not control for the variable they were studying. So we do not know whether the CSF flow disturbance was more common in patients with MS than with others with a history of whiplash injury, vigorous dancing or hammers landing on the head. we only know that patients with MS commonly had spinal abnormalities and that patients with MS have slowed CSF flow.

We also know that drainage of CSF out of the brain is via the pacchionian granulations into the dural sinuses which are drained by the jugular veins. Damadian also found it surprising that CSF drainage was diminished in the erect position. But since we know that, in both MS patients and controls, jugular vein flow is diminished in the upright position while cerebral blood flow is unchanged, one could argue that Damadian and Chu are showing that altered venous outflow of the jugular veins is a significant factor in diminished CSF flow.

Nice first attempt. For your information, group, i reached out to Ray Damadian to evaluate CSF flow before and after treatment of venous obstructions. He was interested in spinal alignment not venous abnormalities at the time.

Thanks

DrS
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Dec 24, 2012 12:04 pm

It's always what we don't know that is important!

I guess that is why PwMS pester the shit out of people like you Sal!

So much research is about perspective of the Observers, if they are blind and unthinking or biased to have their outcome or idea 'seen', then alas the 'Science' goes out the window.
The more minds that can view the research results and look from all angles the better. Therefore I see what you are saying about 'Peer Review' as opposed to 'Patient Hopes'.

On FB I have hounded Mike Arata to let us see his Research Results so that Open Minds can view from all prospectives.

NO REPLY what so ever to multiple requests to him, I could assume from that ............... but its best I don't and push from a different angle and see what can happen.

Closed Minds and Greed are our Greatest Enemy in any walk of Life, not just with CCSVI learnings!

Thanks for the Balance of your approach Sal, it is important to show the full picture, and the behind the senses play is often as ground breaking as the play in Public!

Keep Smilin', I am,
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Re: DrSclafani answers some questions

Postby 1eye » Mon Dec 24, 2012 12:38 pm

we only know that patients with MS commonly had spinal abnormalities and that patients with MS have slowed CSF flow.

We also know that drainage of CSF out of the brain is via the pacchionian granulations into the dural sinuses which are drained by the jugular veins. Damadian also found it surprising that CSF drainage was diminished in the erect position. But since we know that, in both MS patients and controls, jugular vein flow is diminished in the upright position while cerebral blood flow is unchanged, one could argue that Damadian and Chu are showing that altered venous outflow of the jugular veins is a significant factor in diminished CSF flow.


And that makes me consider: if patients with NPH have similar symptoms to those with "MS", is it possible that those shared symptoms are those which depend on the CSF flow, and improving the jugular flow has the side effect of better CSF flow, but there are those for whom both a jugular procedure and hydrocephalus treatment would be even better?

Incidental to that, do failures or the duration of successes depend on whether there remains good CSF flow afterwards? It seems that because of the way excess CSF is drained (jugulars), as well as the fact that CSF comes from blood, they are interrelated.
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Re: DrSclafani answers some questions

Postby EJC » Mon Dec 24, 2012 1:25 pm

drsclafani wrote:
dania wrote:So far there is very little on peer reviewed literature. CCSVI is so very new.
http://www.fonar.com/pdf/PCP41_damadian.pdf.


From my first read, it was disappointing to read that the damadian group rejected, as controls, patients with abnormal spines without ms features. So they did not control for the variable they were studying. So we do not know whether the CSF flow disturbance was more common in patients with MS than with others with a history of whiplash injury, vigorous dancing or hammers landing on the head. we only know that patients with MS commonly had spinal abnormalities and that patients with MS have slowed CSF flow.

We also know that drainage of CSF out of the brain is via the pacchionian granulations into the dural sinuses which are drained by the jugular veins. Damadian also found it surprising that CSF drainage was diminished in the erect position. But since we know that, in both MS patients and controls, jugular vein flow is diminished in the upright position while cerebral blood flow is unchanged, one could argue that Damadian and Chu are showing that altered venous outflow of the jugular veins is a significant factor in diminished CSF flow.

Nice first attempt. For your information, group, i reached out to Ray Damadian to evaluate CSF flow before and after treatment of venous obstructions. He was interested in spinal alignment not venous abnormalities at the time.

Thanks

DrS


If you have contact details for Ray Damadian I have a Dr who would be delighted to discuss skeletal misalignment and CSF flow with him.

Please PM me if there's an email address I can pass on.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Dec 24, 2012 2:02 pm

1eye wrote:
we only know that patients with MS commonly had spinal abnormalities and that patients with MS have slowed CSF flow.

We also know that drainage of CSF out of the brain is via the pacchionian granulations into the dural sinuses which are drained by the jugular veins. Damadian also found it surprising that CSF drainage was diminished in the erect position. But since we know that, in both MS patients and controls, jugular vein flow is diminished in the upright position while cerebral blood flow is unchanged, one could argue that Damadian and Chu are showing that altered venous outflow of the jugular veins is a significant factor in diminished CSF flow.


And that makes me consider: if patients with NPH have similar symptoms to those with "MS", is it possible that those shared symptoms are those which depend on the CSF flow, and improving the jugular flow has the side effect of better CSF flow, but there are those for whom both a jugular procedure and hydrocephalus treatment would be even better?

Incidental to that, do failures or the duration of successes depend on whether there remains good CSF flow afterwards? It seems that because of the way excess CSF is drained (jugulars), as well as the fact that CSF comes from blood, they are interrelated.


This is very important. the relationship between venous drainage, cerebral perfusion and cerebral pulse pressure and CSF drainage are intimate. Go on YouTube and watch Dr Clive Beggs talk on this subject from the NY City Symposium of 2011.

Again, predicting outcomes of treatment of venous insufficiency depends upon the nature and extent of the neural damage of MS as much as the success in treatment of venous outflow obstructions.

damaged myelin leads to neuronal death and dysfunction. how much function can return depends as much on how extensive neuronal death is as anything else. In my OPINION dead neurons remain dead after venoplasty.

DrS
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Dec 24, 2012 2:05 pm

i took some time off for a variety of reasons, but mainly because the discussion seemed dead. Upon my return this week, i have been stimulated anew and hope that the readers have as well. Tough questions have been brought forward and tough answers remain. I stay in it for you.

happy christmas everyone.
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Re: DrSclafani answers some questions

Postby Cece » Mon Dec 24, 2012 2:37 pm

http://www.ncbi.nlm.nih.gov/pubmed/21370770
"Neuromuscular orthotics in the treatment of craniomandibular dysfunction and the effects on patients with multiple sclerosis: a pilot study."

http://scholar.google.com/scholar?clust ... ciodt=0,24
"[CITATION] Eighty-one patients with Multiple Sclerosis and Parkinson's disease undergoing upper cervical chiropractic care to correct vertebral subluxation: a …
E Elster - Journal of Vertebral Subluxation Research, 2004"

http://www.mccoypress.net/juccr/docs/2012-1204_ms.pdf
"Upper Cervical Chiropractic Care of a Female Patient with Multiple Sclerosis: A Case Study"

http://www.logan.edu/mm/files/LRC/Senio ... Dec-30.pdf
"Effects of an Upper Cervical Adjustment on Paraspinal Temperature Differentials"
Demyelinated neurons conduct more poorly as temperatures increase. If adjustment affects spinal temperature, this could affected MS disabilities that vary with temperature.

Christmas joy to everyone. May today bring joy and a relief from pain.
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Re: DrSclafani answers some questions

Postby 1eye » Mon Dec 24, 2012 2:53 pm

damaged myelin leads to neuronal death and dysfunction. how much function can return depends as much on how extensive neuronal death is as anything else. In my OPINION dead neurons remain dead after venoplasty.


You may be right, but it is avoiding future damage that makes it worthwhile to try to stop recurrence. That way it makes more sense to try to retrain, if you know the successes are not as easily lost.

I think there is evidence that neuronal death is also due to continued exposure to fibrinogen, which means if the BBB damage can be halted, and no further extravasation of blood cells, or clots occur in brain vessels, it may stop.
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Re: DrSclafani answers some questions

Postby HappyPoet » Mon Dec 24, 2012 7:37 pm

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Re: DrSclafani answers some questions

Postby blossom » Mon Dec 24, 2012 9:39 pm

Dr. Sclafani, I'm glad to see you're coming aboard. :smile: And, I want you to know that "you" made my day when, at this point in my life, at 66 years old, in a wheelchair, barely able to move, that someone can think of me as being a bully. :smile:
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Dec 24, 2012 10:43 pm

blossom wrote:Dr. Sclafani, I'm glad to see you're coming aboard. :smile: And, I want you to know that "you" made my day when, at this point in my life, at 66 years old, in a wheelchair, barely able to move, that someone can think of me as being a bully. :smile:


i'm a sensitive guy, i guess
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Dec 24, 2012 11:21 pm

Quote from Dr S;
"I am trying to show with illustrations is that many patients have undergone less than optimal venoplasty procedures and that these should not be the standard.

I am more than willing to take in other theories that I can understand. Please send me peer reviewed references that are published and i will read them and render my own opinion. But I must say that the papers of the University of the Internet do not count. If all I had heard about ccsvi was what I had read on the internet, I would not have become involved. It required the study of countless papers, not abstracts, not internet newsletters, or other opinions. I reviewed some of the abstracts for presentation at the International Society for NeuroVascular Disease and did not see any proposals for presentation on this subject. I am at a loss"

Dr S I see that we are all in a 'Catch 22' situation.

We all want 'Peer Reviewed data',

We all want a 'Preferred Method for Treatments',

We all want 'Longterm Outcome Data',

We all want 'Economical and or Govt supported Treatments',

We all want 'A Quality of Service that is Equal' across the Globe',

And we are still at step one with IR's finding their way, Greed acting just below the surface, conflicts of Interest occurring, disagreements on methods and objectives, variety in PTA, and so on.

As much as I hear you ask us for Peer Reviewed details on some of our (PwMS's) Internet searching we are all in the same craft afloat looking for an Island. There isn't Peer Reviewed Data to help either you in you Role or us in our 'Hope Mode'.

Very pleased to hear we have you with us still, we would have been lost without you.
We thrive on the Balance and Knowledge that you give freely to us. Especially important to me is to hear the experiences of the re-treatments, this is showing yet again that the outcomes that we hear, such as nil response, are technically incorrect when there are findings of issues that require attention and time to test the longevity of the PTA.

I'll leave you in Peace must just about be time over there as it's drawing to a close over here. ;)

Regards,
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Re: DrSclafani answers some questions

Postby Robnl » Tue Dec 25, 2012 1:09 am

Kerry Christinas everyone!

Great discussions, That was à surprise when i came home after à 3 dat trip.

Go on, go on!

Rgds,

Robert
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Re: DrSclafani answers some questions

Postby dania » Wed Dec 26, 2012 10:10 am

Dr Sclafani wrote. i disagree that multiple angioplasties are not possible. I have no evidence or experience that shows that patients veins do not tolerate more than one angioplasty. I am truly sorry that your experience was so dismal. But it is not the experience that i have had

I am now so confused. In Oct 2010 Dr Siskin told me that every time the catheter is run in the vein it does a little damage. And in Jan 2011 Dr Arata told me that a patient get the best and most improvements with the first angioplasty. Some see no change with repeat angioplasties.
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Re: DrSclafani answers some questions

Postby drsclafani » Wed Dec 26, 2012 2:26 pm

drsclafani wrote:Dr Sclafani wrote. i disagree that multiple angioplasties are not possible. I have no evidence or experience that shows that patients veins do not tolerate more than one angioplasty. I am truly sorry that your experience was so dismal. But it is not the experience that i have had

dania wrote:I am now so confused. In Oct 2010 Dr Siskin told me that every time the catheter is run in the vein it does a little damage. And in Jan 2011 Dr Arata told me that a patient get the best and most improvements with the first angioplasty. Some see no change with repeat angioplasties.


Dear Dania

These statements may be confusing, but i see them as compatible.

For example every time you scraped your knee as a kid, you may have bled and injured your knee. But that does not mean you now have arthritis in your knee. Angioplasty is by definition a "controlled" injury of a vessel. Simply stretching the vein results in separation of the endothelial cellular lining. That controlled injury typically heals if managed by respecting the effects of that injury. Stretching the endothelial layer leaves gaps that expose the muscle layer of the vein to circulating blood. In a response, the muscle cells send out signals that protect the individual from "hemorrhaging to death" by causing clot to form and by instructing the platelet cells to stick to each other and to the damaged wall. This is done because the muscle cells believe that this angioplasty injury to the venous wall is full thickness which it is not. We know better and can blunt this healthy protective mechanism by using anticoagulation and inhibiting platelet stickiness.

Of course it is also possible that balloon angioplasty can cause full thickness injury if oversized and this may result in thrombosis or fibrosis of the surrounding hemorrhage. These are definitely injuries to be avoided. By precisely measuring the vein dimenstion, one can usually select a balloon that is less likely to injure the vessel wall.

When most IRs started treating these veins in 2010, they were unsure of how large a balloon to use. It was becoming clear quite that the balloon size we expected to use was smaller than we actually needed. We were basing our balloon sizing on veins that were stenosed by scarring which requires smaller balloons. Recommendations from those who started treatments earlier than the majority of us, suggested things like 18-20 mm balloons in woman and 20-24mm in men, use of cutting wires were also advised. These were very damaging. Moreover anticoagulation utilization was unclear. Some used no or very short term anticoagulation (remember patients were traveling long distances to reach their interventionalist.). It wasn't clear to me until january-february of 2011, by the use of IVUS, that the stenoses were caused by immobile valves not stenosed veins. and that larger balloons could be used

In response to injuries and occlusions, many treating doctors played it safe, using smaller balloons that would not injure the vessels. Not surprisingly this incomplete treatment resulted in very short term improvements caused by opening the valve obstructions only for a short time before restenosis occurred. When restenosis was treated by smallish balloons again, it is not surprising that improvements would be limited.

I would say that i have treated more patients who had been treated previously by others than patients who had never been treated. If you recall, i was stopped from doing procedures after about 25 patients back in April 2010. By the time i returned to treatment full time, nine months had elapsed and many patients had been treated with, as you can imagine, short term benefits or problems with occlusions. In the beginning I also had a fair number of thromboses. However rather than move to smaller balloons as was so tempting, i persisted and worked out my algorithm using cross sectional area of the vein to select my balloon size. so i continue to use fairly large balloons, averaging at 14.5 mm with range from 8mm to 24 mm. My occlusion rate is fairly low at this time and early detection has allowed salvage of about half of those.

I have therefore treated many patients who were underdilated before and in some improvements have been better than the first time. treatment remains a "crapshoot" with unpredictable results. But many of my best improvements have come in patients who had improvement from prior treatments that required another treatment.

So sorry for the confusion you feel. I hope i have enlightened you and reduced your confusion

DrS
Last edited by drsclafani on Wed Dec 26, 2012 9:02 pm, edited 1 time in total.
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