DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby jillMEnz » Thu Sep 27, 2012 4:06 am

Hiya Dr S, thank you so much for sharing the case of the guy with CFS. I will be watching intently to see if he receives improvement. I hope he emails and you can pass onto us. After watching MS folk describe how their fatigue gets helped by treatment it seemed obvious that ME/ CFS patients should be investigated. My partner still has this ongoing headache caused by waking as well as the severe end of the ME spectrum symptoms. The hospital here refused to see him because they think they can't help and don't agree with the use of diamox. The diamox helps but turns him into even more of a dodo. I want to get him tested for CCSVI but it seems impossible. We may just have to throw all our money and come to see you. He is basically suicidal with the pressure headache. He is also very skinny and has flank pain, so I wonder about his renal veins. I just wish we could clone you and your experience and bring you to NZ.

But, please please do report back on this man or get him to write here. I would love to hear from him. All this information needs to be out here and I'm so grateful you share what you can despite your hectic schedule.

Cheers jilli
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Re: DrSclafani answers some questions

Postby tzootsi » Thu Sep 27, 2012 6:51 am

Hi Dr. S,

I have just read thru Dr. Simka's latest report in Phlebolymphology - interesting stuff. However one statement seemed a bit pessimistic:

It has also been found that only some MS-related symptoms (eg, chronic fatigue, bladder control, impaired balance) may improve after the treatment, while others, especially walking ability, are not very likely to get better.

Do you concur?
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Re: DrSclafani answers some questions

Postby mike70 » Thu Sep 27, 2012 2:06 pm

Hi Dr Sclafani,

What do You think about this?

http://www.equities.com/news/headline-s ... 7&cat=tech

All the best,

M
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Re: DrSclafani answers some questions

Postby mike70 » Thu Sep 27, 2012 2:20 pm

Hi Dr Sclafani,

I was the other patient You helped in Lisbon. Thank You very much. I was not able to talk to You, but i'm improving since the procedure. More than 2 years have passed since the first one, and I'm a lot better than before. I admire You a lot for your commitment.
Thank you.
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Re: DrSclafani answers some questions

Postby gibbledygook » Fri Sep 28, 2012 1:45 am

Curiously, the 3 things that have improved since my left renal stenting and jugular and azygous ballooning have been appetite, bowel function and sweating. So I really do think that the renal vein may impact on the appetite. I find it very hard to believe that the immediate deterioration in both my legs can be just the left jugular. My hunch is continued pathology of the azygous. See you on Wednesday!
Alex
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: DrSclafani answers some questions

Postby PointsNorth » Fri Sep 28, 2012 9:30 am

Hi gibbs,

Both interventions I had revealed no issues with my azzy altho I'm having issues with my walking. I think that we are still learning much. A while ago Dr. S spoke about Luxuriant Vicarious Drainage where Azzy drainage can be affected by drainage issues in other veins (as I (mis)understand it). Perhaps Dr. S can weigh in.

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Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
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Re: DrSclafani answers some questions

Postby vesta » Sat Sep 29, 2012 11:09 am

You know an idea's time has come when someone seeks to patent it.

Dr. Sclafani has been doing exemplary work studying CCSVI, treating patients and sharing his ideas, knowledge and discoveries. Not to mention Dr. Zamboni who "invented" the idea that MS is essentially a vascular pathology. After the FDA created treatment road blocks, CCSVI researchers have been very careful not to say they are treating MS except under tightly controlled conditions. I hope pioneers like Dr. Zamboni and Dr.Sclafani will be well rewarded for their efforts.

Quotes below were taken directly from the Patent Application: (Thanks to mike70)

"United States Patent Application 20120232382 Kind Code A1 Brown; Joe E. ; et al. September 13, 2012

Multiple Sclerosis Diagnostic Devices and Associated Methods and Systems

Abstract
Methods and devices are disclosed that, in various embodiments and permutations and combinations of inventions, diagnose and treat Multiple Sclerosis or associated symptoms. In one series of embodiments, the invention consists of methods and devices for identifying patients whose Multiple Sclerosis or associated symptoms are caused or
exacerbated, at least in part, by blockages of one or more of the patient's internal jugular veins (IJV) or azygous veins (AZV). In some instances, stenoses or other flow limiting structures or lesions in the patient's affected veins are
identified. Further, in some instances the nature of such lesions and whether there is a significant disruption of blood pressure, or both, is ascertained. In some embodiments, methods and devices for applying one or more therapies to the blockages in the patient's IJV or AZV veins are provided.

Inventors:
Brown; Joe E.; (Lilburn, GA) ; Margolis; Marja Pauliina; (Coral Gables, FL) ; Gaddis; Mary L.; (Newport Beach, CA)
Assignee:
Volcano Corporation San Diego CA

Claims

1. A Multiple Sclerosis diagnostic
device comprising: a computing device configured to perform the steps of:
identifying venous outflow obstruction sites; assessing the nature of the
stenotic lesion; and determining the pressure gradient across the stenosis as
compared to the superior vena cava…

…17. A Multiple Sclerosis diagnostic
device comprising: a pressure sensing device sized and shaped for insertion into
a patient's veins; a computing device in communication with the pressure sensing
device, the computing device configured to perform the steps of: identifying
venous outflow obstruction sites; assessing the nature of a stenotic lesion
associated with the venous outflow obstruction sites; and determining a pressure
gradient across the stenosic lesion as compared to the superior vena cava based
on pressure measurements obtained by the pressure sensing device. ..

[0001] This application claims priority to and the benefit
of U.S. Provisional Patent Application No. 61/429,058, filed on Dec. 31, 2010,
which is hereby incorporated by reference in its entirety.

FIELD OF INVENTION

[0002] The present disclosure relates to improved methods and
devices for diagnosing and treating CCSVI (chronic cerebrospinal venous
insufficiency) in patients with multiple sclerosis or other diseases that are
due to or exacerbated by obstructions to blood flow and, more particularly, to
methods and devices for identifying patients particularly likely to benefit from
the delivery of one or more therapies to treat such patients and methods and
devices for delivering such therapies.

BACKGROUND

[0003]
Multiple sclerosis (MS) is an inflammatory disease of the nervous system where
the fatty myelin sheaths around the axons of the brain and spinal column are
damaged. As a result of this damage, the ability of nerve cells in the brain and
spinal cord to communicate with each other is compromised. Almost any
neurological symptom, including physical and cognitive disability, can appear
with the disease. MS affects more than 350,000 people in the United States and
2.5 million worldwide. In the United States, prevalence estimates are
approximately 90 per 100,000 people.

[0004] Beginning with the first
description of the anatomy associated with MS by Jean-Martin Charcot in 1868, MS
plaques associated with MS have been known to be centered or located around
veins. Further, it has been recently shown that MS is significantly correlated
with a condition called chronic cerebrospinal venous insufficiency (CCSVI).
CCSVI is a condition where people have obstructed blood flow in the veins that
drain the central nervous system (the brain and spinal cord) and is
characterized by multiple stenoses of the principal pathways of extracranial
venous drainage, the internal jugular veins (IJV) and the azygous veins (AZV),
with opening of collaterals, clearly demonstrated by means of selective
venography and magnetic resonance venography (MRV).

[0005] Stenosis
literally means a "narrowing." Here "stenosis" or its plural "stenoses" is an
abnormal narrowing of the vein that restricts blood flow. This abnormal
narrowing may be the result of many things. For example, the abnormal narrowing
maybe the result of a collapse of the vein, twisting of the vein, ring-like
narrowings in the vein and other similar obstructions. Further, the abnormal
narrowing may be the result of severe venous problems including veins that are
partially closed, underdeveloped, minimally formed or almost entirely missing.
In addition, an abnormal or defective valve, septum, flap or membrane may
narrow, blocks or inhibit blood flow through the veins. Finally, the build up of
plaque, fibrin or thrombus may cause an abnormal narrowing of the vein. With
respect to MS, a consequence of a stenosis in a vein leads to problems with
normal or efficient blood drainage from the brain and spine back to the heart.


[0006] Intravascular ultrasound ("IVUS") combined with a technique
called virtual histology ("VH") has been particularly successful in recognizing
the morphology of atherosclerotic plaque in vivo (i.e., the location and
composition of plaque in the patient's body). Current developments are underway
to also be able to recognize thrombus in vivo. FIG. 1 illustrates a typical
intravascular imaging system 2 that uses intravascular ultrasound (IVUS). FIG. 2
illustrates a typical intravascular imaging system 2 that uses optical coherence
imaging (OCT).

[0007] An example of an IVUS system is the s51.TM.
Imaging System sold by Volcano Corporation of San Diego, Calif. Examples of OCT
imaging systems include, but are not limited to, those disclosed in U.S. Pat.
No. 5,724,978 issued Mar. 10, 1998 entitled "Enhanced accuracy of
three-dimensional intraluminal ultrasound (ILUS) image reconstruction" with Harm
Tenhoff as inventor, US Published Patent Application Nos. 20070106155 entitled
…,
[0016] In view of the foregoing, what is needed is an effective method
and device for assisting a healthcare provider to identify patients whose MS, or
MS symptoms, are likely exacerbated if not caused, at least in part, by
blockages of one or more of the patient's internal jugular veins (IJV) or
azygous veins (AZV) and for those patients, methods and devices for applying one
or more therapies to the blockages in the patient's IJV or AZV veins.

SUMMARY

[0017] Methods and devices are disclosed that, in various
embodiments and permutations and combinations of inventions, diagnose and treat
MS or MS symptoms. In one series of embodiments, the invention consists of
methods and devices for identifying patients whose MS, or MS symptoms, are
likely exacerbated if not caused, at least in part, by blockages of one or more
of the patient's internal jugular veins (UV) or azygous veins (AZV). In
preferred embodiments of the diagnostic methods, the stenoses in the patient's
affected veins are identified. In other embodiments of the present diagnostic
methods, the nature of such lesions and whether there is a significant
disruption of blood pressure or flow, or both, is ascertained.

[0018] In
another series of embodiments, the invention consists of methods and devices for
applying one or more therapies to the blockages in the patient's IJV or AZV
veins. In preferred embodiments of such methods and devices, therapy is
delivered to open the stenosis causing such blockages.

[0019] It is an
object of this invention in one or more embodiments to identify blockages of a
patient's vasculature or flow limiting or interrupting structures that have
likely exacerbated if not caused, at least in part, MS, or MS symptoms, in that
patient.

[0020] It is an object of this invention in one or more
embodiments to treat blockages of a patient's vasculature or flow limiting or
interrupting structures that have likely exacerbated if not caused, at least in
part, MS, or MS symptoms, in that patient.


DETAILED DESCRIPTION

[0044] The present invention includes several embodiments. In particular,
the present invention includes a Multiple Sclerosis Diagnostic Method 26, its
corresponding Multiple Sclerosis Diagnostic Device 28, a Multiple Sclerosis
Treatment Diagnostic and Treatment Method 30 and its corresponding Multiple
Sclerosis Treatment Diagnostic and Treatment Device 32. The diagnostic method
26 and diagnostic device 28 determine whether a patient's physiology indicates
that the patient has a form of MS, or MS symptoms, that are exacerbated if not
caused, at least in part, by blockages or flow limiting or interrupting
structures of one or more of the patient's internal jugular veins (IJV) or
azygous veins (AZV). The therapeutic method 30 and therapeutic device 32
provide one or more therapies to treat the patient's MS, or MS symptoms. In
embodiments of the invention, the therapeutic method 30 includes a diagnostic
method 26 and, in addition, applies a therapy to treat the MS, or MS symptoms.
In other embodiments of the invention, the therapeutic device 32 includes a
diagnostic device 28 that, in addition, also applies a therapy to treat the MS,
or MS symptoms. Examples of flow limiting or interrupting structures include,
but are not limited to, physiological defects,stenoses and faulty valves…”.

For additional information on this patent application, see: Brown, Joe E.; Margolis, Marja Pauliina; Gaddis, Mary L.
Multiple Sclerosis Diagnostic Devices and Associated Methods and Systems. U.S. Patent Serial Number 340028, filed December 29, 2011, and posted September 20, 2012. Patent URL:

http://appft.uspto.gov/netacgi/nph-Pars ... D/20120913 "
See MS Cure Enigmas.net
.
Last edited by vesta on Thu Oct 11, 2012 7:32 am, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Oct 01, 2012 7:58 pm

mike70 wrote:Hi Dr Sclafani,

I was the other patient You helped in Lisbon. Thank You very much. I was not able to talk to You, but i'm improving since the procedure. More than 2 years have passed since the first one, and I'm a lot better than before. I admire You a lot for your commitment.
Thank you.


Mike, I am glad you are improving. Ironic that I was seeking knowledge from dr pisco who was doing the teaching, yet two patients with MS benefited from the dialogue we had.

DrS
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Oct 01, 2012 8:01 pm

mike70 wrote:Hi Dr Sclafani,

What do You think about this?

http://www.equities.com/news/headline-s ... 7&cat=tech

All the best,

M
mike, i am not sure what it means in the long run. I find it difficuilt that they might benefit from the patent of things that were done before they arrived on the scene.

I know Mr Brown. He is someone who has been very supportive and helpful in the development of the use of IVUS in CCSVI. He has encouraged me greatly. He has supported funding of my meetings in the early stages of CCSVI.
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Re: DrSclafani answers some questions

Postby NZer1 » Mon Oct 01, 2012 8:30 pm

DR S, thanks for looking after us Kiwi's.

And another TV interview, the things we do for Love!

http://tvnz.co.nz/sunday-news/coming-up ... 4375/video

Thanks You,
Nigel
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Re: DrSclafani answers some questions

Postby dlynn » Sat Oct 06, 2012 11:27 am

Dr. Sclafani,
Several months ago I noticed when I put my head down, I get bad pain in my right (and sometimes left)
flank region. It's like L-Hermittes of that area. When I lift my head, the pain subsides. Could this be because of NCS?
Thank you
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Oct 08, 2012 10:04 pm

tzootsi wrote:Hi Dr. S,

I have just read thru Dr. Simka's latest report in Phlebolymphology - interesting stuff. However one statement seemed a bit pessimistic:

It has also been found that only some MS-related symptoms (eg, chronic fatigue, bladder control, impaired balance) may improve after the treatment, while others, especially walking ability, are not very likely to get better.

Do you concur?


I generally have the same experience, but sometimes surprising improvements in walking and motor strength occur in an unpredictable way.

Look at it this way.

There are symptoms that are commonly the result of CCSVI. These include chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,

These are symptoms commonly seen with MS: motor problems, with spasticity, sensory problems numbness and tingling, vision problems, cerebellar problems such as ataxia, imbalance, cranial nerve problems, chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,

So you see that symptoms of ccsvi and ms overlap. We can treat the ccsvi and have no significant clinical change if the symptoms were caused by MS.But if the symptoms were caused by CCSVI , treating the CCSVI can improve symptoms.

I have said all along that I treat CCSVI not MS. I wish it were simpler but I wont know for ten years whether treating CCSVI alters outcomes of MS

That being said, i recently have had two patients with severe spasticity which I believed were clearly due to demyelinization. To my surprise some improvements occurred after venoplasty. I still cannot figure out why this occurs.
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Re: DrSclafani answers some questions

Postby drsclafani » Mon Oct 08, 2012 10:10 pm

dlynn wrote:Dr. Sclafani,
Several months ago I noticed when I put my head down, I get bad pain in my right (and sometimes left)
flank region. It's like L-Hermittes of that area. When I lift my head, the pain subsides. Could this be because of NCS?
Thank you

Sorry, i am not going to answer that one. It is a bit out of my knowledge base. :oops:
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Reductions in spasticity after venplasty

Postby MarkW » Wed Oct 10, 2012 1:43 am

drsclafani wrote:Look at it this way.
There are symptoms that are commonly the result of CCSVI. These include chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,
These are symptoms commonly seen with MS: motor problems, with spasticity, sensory problems numbness and tingling, vision problems, cerebellar problems such as ataxia, imbalance, cranial nerve problems, chronic fatigue, cog fog, memory impairment, vision difficulties, imbalance and autonomic problems such as bladder problems (urgency, frequency, nocturia, hesitancy), purple feet and edema, and heat intolerance. To a much lesser degree, motor function, sensory problems,
So you see that symptoms of ccsvi and ms overlap. We can treat the ccsvi and have no significant clinical change if the symptoms were caused by MS.But if the symptoms were caused by CCSVI , treating the CCSVI can improve symptoms.
I have said all along that I treat CCSVI not MS. I wish it were simpler but I wont know for ten years whether treating CCSVI alters outcomes of MS
That being said, i recently have had two patients with severe spasticity which I believed were clearly due to demyelinization. To my surprise some improvements occurred after venoplasty. I still cannot figure out why this occurs.

Hello DrS,
You said that you cannot figure out why improvements in spasticity occurs after venoplasty. I suggest that the areas between 'CCSVI symptoms' and 'MS symptoms' have a large area of overlap. There are 'CCSVI symptoms' which could be considered as the result of reduced CSF flow and 'MS symptoms' which are the result of myelin (WM) damage. However there are reports of GM repair after venoplasty, any thoughts where they should be placed?
Also venoplasty could reduce compression on the vagus nerve, which may explain some improvements. Some venoplasty may reduce compression on other cranial nerves, as yet not considered in detail.
Here in Oxford there are two of us who are experiencing slow (months to years) improvements in spasticity, post venoplasty.
I am unsure what the mechanism could be, but I keep in mind that the human body tries to return to its steady state position (repair itself) when damage is stopped. Any thoughts?
I agree that we won't know for years whether treating CCSVI alters MS. I am hoping that after 5 years I will know if my spending on two venoplasties was a good bet or not.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: DrSclafani answers some questions

Postby Cece » Wed Oct 10, 2012 8:36 am

That being said, i recently have had two patients with severe spasticity which I believed were clearly due to demyelinization. To my surprise some improvements occurred after venoplasty. I still cannot figure out why this occurs.

The improvements were immediately after venoplasty?

If you were correct in assessing that the spasticity as being due to demyelinization and yet we also know remyelinization does not occur between the start and end of angioplasty, then restoring the flow must be doing something to restore the function of the demyelinated neurons despite their continued state of demyelinization. (Assuming it is not placebo or an effect of medications such as fentanyl used during the procedure.)

Here we go, this ties into a question asked here two years ago:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-2865.html#p126508
and your two-years-ago response:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-2865.html#p126532

and a quote from the research linked in the first link
Conduction velocity, depressed by 26% with diabetes, was normalized by treatment. These observations support the hypothesis that hyperglycemia-induced blood flow reductions and resultant endoneurial hypoxia are important factors underlying nerve conduction deficits early in the development of diabetic neuropathy.

It could be that when an immediate improvement is seen in spasticity due to demyelinization, the immediate improvement is due to the relief of CNS nerve conduction deficits due to blood-flow reductions and resultant endoneurial hypoxia. This is assuming that the reduced perfusion seen in MS is due to outflow obstructions and that the treatment of outflow obstructions leads to improvement in cerebral perfusion, which would need to be proven.
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