DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby Leonard » Mon Jun 27, 2016 1:02 am

drsclafani wrote:Our society seems to be morphing from venous disease and MS to a much more varied approach. I had some discussions with MS community leaders who were concerned that we were moving off our core interest in CCSVI and MS. I assured them that veins cannot be studied in a vacuum outside of the remaining hemo- and hydro-dynamic components. That while perhaps not so directly involved in MS, we have to look at all of the components of the neurovasculature system (and lymphatics are considered part of the vasculature). That means from the heart to the brain and spine and back to the heart.

We want to be the group known for looking at the full vascular picture. That is our thought style and our collective mood.


I fully agree. But in that same spirit, you have to widen your view even further. To consider the viral dimension. To consider the cellular immunity and the humoral immunity and the response to herpes strains, mainly VZV (inflammatory) and EBV (onco; degenerative). It is then, and only then, that the pieces of the puzzle will start to come together. In the end, you may arrive there once you consider the lymphatics but you could take a short cut by starting from the virus.

The context is given here http://www.mshackathon.nl/wp-content/up ... ressed.pdf
and in the last few pages of this thread: general-discussion-f1/topic15188-780.html
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Re: DrSclafani answers some questions

Postby Robnl » Wed Jun 29, 2016 1:46 am

benefits after ccsvi treatment:

http://www.msnetwork.org/ccsvibenefits.htm
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Re: DrSclafani answers some questions

Postby Cece » Fri Jul 29, 2016 2:58 pm

http://europepmc.org/abstract/med/26951897
The value of intravascular ultrasound in the treatment of central venous obstructions in hemodialysis patients.
(PMID:26951897)
Abstract

de Graaf R , van Laanen J , Peppelenbosch N , van Loon M , Tordoir J
Department of Radiology, Maastricht University Medical Centre, Maastricht - The Netherlands.
The Journal of Vascular Access [2016, 17 Suppl 1:S12-5]

Abstract
Digital subtraction angiography (DSA) is the gold standard in diagnosis and treatment of central venous obstructions (CVOs) in hemodialysis access. However, growing data suggest that DSA might underestimate the degree and morphology of venous outflow stenosis. This could lead to inappropriate CVO management. Intravascular ultrasound (IVUS) has been shown to identify lesion characteristics remaining obscure with angiography. With the current study we suggest IVUS as an eminent imaging modality in CVO management.Twelve patients (8 male, mean age 62.4 ± 9 years) were analyzed for suspicion of symptomatic CVO. Both angiography and IVUS evaluation were performed to determine the degree of obstruction before and after PTA. Stent placement was indicated when significant residual stenosis (>50% lumen reduction) was suspected.Conventional plain angiography determined 8 out of 12 central venous lesions significant. Secondary signs of obstruction, i.e., collateral filling, was present in all 12 cases. After PTA, persistent significant stenosis was observed in 3 out of 12 patients. IVUS showed significant lumen reduction in all 12 cases. Additionally, IVUS showed a median cross-sectional area of 24 ± 12 mm2 before PTA and 37 ± 23 mm2 after PTA (NS). Furthermore, IVUS showed signs of intraluminal fibrotic trabeculations in 9 patients. Stenting was performed in 10 patients with >50% lumen reduction on IVUS after PTA.Conventional angiography seems unreliable to identify all significant aspects of a central venous outflow obstruction. Additional use of IVUS might aid in the decision-making process and select the optimal treatment strategy.

A 2016 study in a different population (hemodialysis patients with CVO), but the CVO may include jugular or innominate veins, looking at the value of IVUS and concluding that it has value. My question was about the intraluminal fibrotic trabeculations, found in 9 of 12 patients. Is an intraluminal fibrotic trabeculation a result of the hemodialysis, as sequellae to a clot, or would it have been pre-existing? I suppose it is the meaning of "fibrotic trabeculation" that I am not sure of. It is just as welcome if someone other than Dr. Sclafani answers the question, if he doesn't happen by. It's unusual to have come across a new phrase regarding what can go on within a vein.

Currently google-scholar-ing "IVUS" with some interesting results.
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Re: DrSclafani answers some questions

Postby Cece » Fri Jul 29, 2016 3:12 pm

http://www.ajronline.org/doi/abs/10.2214/AJR.15.14689

Variability in the Cross-Sectional Area and Narrowing of the Internal Jugular Vein in Patients Without Multiple Sclerosis
Karen Buch1, Raymond Groller1, Rohini N. Nadgir1, Akifumi Fujita1, Muhammad M. Qureshi1,2 and Osamu Sakai1,2,3

Affiliations: 1Department of Radiology, Boston Medical Center, Boston University School of Medicine, 820 Harrison Ave, FGH Bldg, 3rd Fl, Boston, MA 02118.
2Department of Radiation Oncology, Boston Medical Center, Boston University School of Medicine, Boston, MA.
3Department of Otolaryngology–Head and Neck Surgery, Boston Medical Center, Boston University School of Medicine, Boston, MA.
Citation: American Journal of Roentgenology. 2016;206: 1082-1086. 10.2214/AJR.15.14689

ABSTRACT :
OBJECTIVE. Chronic cerebrospinal vascular insufficiency is a proposed condition of intraluminal stenosis of the internal jugular vein (IJV) that impedes venous flow from the brain. Calculations of IJV stenosis are vague and described in veins with at least a 50% reduction in IJV caliber at a specific level. The purpose of this study was to assess normal changes in anatomic caliber of the course of the IJV in a generalized population.

MATERIALS AND METHODS. Images from 500 consecutive contrast-enhanced neck CT studies performed in January–July 2011 were reviewed. Cross-sectional areas of the IJV were calculated at the jugular foramen, C1–C7 levels, and jugular angles bilaterally. Patients were excluded if they had severely motion-limited studies; limited clinical data; a history of multiple sclerosis, neck mass, or neck dissection; or known IJV occlusion. Normalized IJV cross-sectional areas at each level were compared with an averaged normalized cross-sectional area from all patients at each level.

RESULTS. Greater than 50% narrowing compared with a normalized average was found in 133 of 363 patients (36.6%) and was seen at all IJV levels. In 36.1% of patients this narrowing occurred at the C1 level. Most of the areas of narrowing greater than 50% occurred above the C4 level.

CONCLUSION. The IJV has marked variability in its course in the neck. Areas of narrowing greater than 50% occur most commonly in the upper cervical and skull base regions. Given the normal anatomic variations in IJV caliber, caution should be used when making the diagnosis of and treating IJV stenosis.

This was interesting too -- if most areas of narrowing greater than 50% occurred about the C4 level, then it would actually be abnormal to have a jugular narrowing between C5-C7. Wouldn't the area of the valves be in the C5-C7 area? Doesn't this support the abnormality of such obstructions?

The supposed normal narrowings in the skull base area found in this study could be physiological narrowings, that would open with a deep breath. Whether or not they were physiological narrowings could be investigated, and have them disqualified if they were, so that only true obstructions are investigated. This was a retrospective study, but a prospective study could control for that variable, I think.
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Re: DrSclafani answers some questions

Postby Cece » Thu Aug 18, 2016 9:35 am

http://www.isnvd.org/sites/default/file ... 202016.pdf
Reasons for Failure in Neurovenous Interventions

Salvatore JA Sclafani, MD, FSIR SUNY Downstate Medical Center Brooklyn, New York

Patients with neurodegenerative diseases, notably multiple sclerosis (MS), have a propensity to venous outflow obstructions of the cerebrospinal venous circulation and that treatment may rapidly show dramatic clinical improvements. Rapid improvements suggest that they are likely related to altering cerebral fluid dynamics, such as enhanced cerebral perfusion, increased dural venous flow and improved CSF drainage rather than reversal of basic pathology.

However, not all patients realize clinical improvements and the benefits seen in other patients may be transient and short-lived. Further, disease may progress despite persistence of benefits. There are many reasons for poor clinical results after angioplasty. Broadly speaking, they can be divided into issues related to the nature of neurodegenerative disease with persistent inflammation and clinical relapse, to technical and cognitive issues related to the treatment of vascular obstructions, including failed or incomplete diagnostic evaluations, incomplete, inadequate or erroneous therapeutic efforts, to inherent problems with trans-catheter treatments, such as angioplasty injury, restenosis and occlusion, and to inability or failure to provide adequate follow-up after treatments.

These concepts will be illustrated using case material acquired from review of failed treatments for the past five years.

To summarize, non-responders either have no improvements, have un-sustained improvements, have worsening symptoms and disease relapses or develop deteriorations resulting from complications. Some of this is inevitable. Attention to the details of therapy can increase clinical response in some patients. Discussing this topic with patients before treatment helps patient develop realistic expectations about the outcomes of angioplasty.

BIBLIOGRAPHY:
1. Alboulker J, Aubin ML, Leriche H, et al: Intraspinal venous hypertension due to multiple anomalies in the caval system. A major cause of myelopathies. Acta Radiol Suppl 1976; 347: 395-401.
2. Beggs CB: Venous hemodynamics in neurological disorders: an analytical review with hydrodynanic analysis. BMC Medicine 2013; 11:142.
3. Hojjat S, Grady Cantrell GC, Vitorino R, et al: Regional reduction in cortical blood flow among cognitively impaired adults with relapsing-remitting multiple sclerosis patients. Multiple Sclerosis Journal, 2016
4. Hubbard D, Ponec D, Saxon R, et al. J Vascu Interv Radiol 2012; 10:1302-08.
5. KIENLE GS, KIENE H: THE P OWERFUL PLACEBO EFFEC T: FACT OR F ICTIO N? J CLINICAL EPIDEMIOLOGY 1 997; 1 311-18.
6. Leriche H, Aubin ML, Aboulker J: Cavo-spinal phlebography in myelopathies. Stenosis of internal jugular and azygos veins, venous compressions and thromboses. Acta Radiol Suppl 1976: 347:415-17.
7. Ludyga T, Kazibudzki M, Simka M, et al: Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe? Phlebology 2010; 1-10.
8. Sclafani SJA: Intravascular ultrasound in the diagnosis and treatment of chronic cerebrospinal venous insufficiency. Techniques in Vascular and Interventional Radiology 2012; 15: l3l-14.
9. Simka M, Hubbard D, Siddiqui AH, et al: Catheter venography for the assessment of internal jugular veins and azygous vein; Position statement by expert panel of the International Society for Neurovascular Disease. Vasa 2013; 42: 168-176.
10. Zamboni P, Galeotti Rk, Menagati E, et al: A prospective open-labrel study of endovascular treatment of chronic cerebrospinal venous insufficiency. J Vasc Surg 2009; 50: 1348-1358.
11. Zamboni P: Extracranial venous pathology. A potential contributor to neurodegeneration. Neurology and Neuroscience 2015 Dr. Sclafani has no disclosures to make or conflicts of interests to declare.

I like the line, "Attention to the details of therapy can increase clinical response in some patients," since that's where there is room for improvement by the doctor and thus the possibility of improvements for the patients.
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Re: DrSclafani answers some questions

Postby 1eye » Mon Aug 22, 2016 7:01 pm

Dr. Zamboni has deprecated the use of caliber, and it is clear one can conclude any number of things when jugular veins are assumed to be circular in cross-section. In fact they are anything but. Dr. Zamboni has pioneered the use of real-time video in assessing venous capacity and synchronization of venous flow with arterial flow in the head and neck, for NASA and others. While this may not occur to many doctors, those really concerned with jugular pathology would do well to investigate Prof. Zamboni's methodologies.
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Re: DrSclafani answers some questions

Postby Cece » Mon Nov 07, 2016 10:23 am

http://www.sciencedirect.com/science/ar ... 8X1200037X

Imageonline photo sharing

Check that out. That is a moving internal jugular vein valve leaflet. With all the images we've seen here of fixed and nonfunctional
jugular vein valve leaflets, I thought we might be missing what it's supposed to look like.
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Re: DrSclafani answers some questions

Postby Cece » Mon Nov 07, 2016 12:34 pm

I am catching up on all things CCSVI today. Here is this, a Summer 2016 newsletter about ISNVD:
https://isnvd.org/sites/default/files/S ... inal_1.pdf
Dr. Sclafani’s talk focused on “the Reasons for Failure in Neurovenous Interventions.” Dr. Sclafani said “Patients with neurodegenerative diseases, notably multiple sclerosis (MS), have propensity to venous outflow obstructions of the cerebrospinal venous circulation and that treatment may rapidly show dramatic clinical improvements. Also, “rapid improvements suggest that they are likely related to altering cerebral fluid dynamics, such as enhanced cerebral perfusion, increased dural venous flow and improved CSF drainage rather than reversal of basic pathology.”

So we as a group are likely to have blockages in the veins that drain our brain and spinal cord. Ballooning these blockages may result in a dramatic improvement in symptoms. ("May" is a key word there unfortunately, I wish it were universal.) The very fact that the improvements are so rapid, that symptoms that are present prior to angioplasty may be gone afterwards, suggests that it's the changing of the blood flow dynamics that led to the improvements. It is not a reversal of our MS. It is an improvement in our blood flow, in the perfusion of our brains, and in the drainage of our cerebrospinal fluid.

He specifies increase in dural venous flow as an improvement. And here is a need for me to brush up on my knowledge of venous sinuses. http://neuroangio.org/venous-brain-anat ... s-sinuses/
Dural Sinuses — it is somewhat a misnomer, as all sinuses are dural.  Naturally, major dural sinuses have unique names like the superior sagittal, transverse or sigmoid sinus.  There is certainly a developmental propensity for these to form in most people — Dorcas Padget felt that sinuses form at intersection of dural covers due to the resistance of the channel to pressure-related collapse.  However, not infrequently we observe existence of other dural venous channels, unnamed, draining this or that group of veins.  Eventually these sinuses will join a more well-established sinus.  The extra sinuses go under a broad term of “dural sinus” — the best thing to do, as always, is to simply describe what exists — for example “left parietal dural sinus draining into the superior sagittal sinus”.
The most important feature regarding venous sinuses, and veins in general, is to keep in mind that veins are like rivers.  The size of any vein or sinus is determined by the sum total of the tributaries it gathers, much like a river is exactly as large as the total volume of streams which feed it.  Nearly all variations in venous size can be explained by this simple and powerful analogy.
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Re: DrSclafani answers some questions

Postby Algis » Fri Feb 24, 2017 9:46 am

Is this thread dead? Do you still here Doctor?

Cheers all;

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Re: DrSclafani answers some questions

Postby drsclafani » Fri Feb 24, 2017 11:46 am

Algis wrote:Is this thread dead? Do you still here Doctor?

Cheers all;

Algis


Greetings Algis. It has been a very long time since I read your words. I am here but no one is asking very much. Strange, is it not? Now that we may be reaching the culmination of all of our ruminations, no one is here.

Is there something I can help you with?

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby pukai » Fri Feb 24, 2017 11:59 am

Hello Dr. Sclafani,
I am very glad to see you writing again in this forum! A lot of things happened during the last months; I will send you a pm - please give me some more time.
I think, many of us - posters and readers of this thread - have been waiting for "good" news from the ISNVD meeting last year, and were a little bit disappointed by the outcome concerning the BRAVE DREAMS trial results - having to wait once again for one more year ...

With my best wishes,

Marcus
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Re: DrSclafani answers some questions

Postby NZer1 » Fri Feb 24, 2017 12:41 pm

Hi, I guess many of us are wanting to have real answers to our individual situations?

Very hard to know what is the best option and the best value for money with CCSVI treatment when everything is based on opinions of what is 'seen' in a snowflake disease ............. :)

Hope all is great/grate Sal! ;)
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Re: DrSclafani answers some questions

Postby drsclafani » Fri Feb 24, 2017 3:40 pm

I understand the frustrations with the long time it takes to get results we want. Studies have to be funded, protocols written and consensus attained, followed by IRB approvals, FDA approval, both requiring revisions of the study protocol, then patient recruitment, randomization, procedures performed on patients and controls, then redone on controls during cross-overs, patients followed and data collected over 1-3 years, data analyzed and studied, results written, re-written and approved by multiple authors, then presented at a meeting or two with submission to a journal, review by experts, then revised once, twice or rejection, requiring submission to another journal etc. Finally possibly several months later the paper will be published in a journal that will be read by subscribers of the journal and finally by others for a fee or by artificial dissemination.
Then after discussions, misunderstandings, obfuscation, denial etc, the information will be accepted or rejected and another round of publications will support or deny the information.

At some point after publication of enough of these papers, payors will be petitioned to reconsider their refusal to support the treatment.

Patience, my patients

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby NZer1 » Fri Feb 24, 2017 5:29 pm

Thanks for your commitment and staying on Sal! :)
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Re: DrSclafani answers some questions

Postby Algis » Fri Feb 24, 2017 10:16 pm

I am glad to see all of you still here.

Personally the progress of the disease seems to have stopped. For years I had no relapse, tho I also don't regain any lost function.

@Doctor Sclafani: do you recall we once talk about a marker in the blood that peak when a thrombosis start forming? I searched the (too?) numerous pages trying to find the post but to not avail. Could you tell me again the name of this marker Doctor? Life is strange and my Spouse is now closely working with an R&D facility in Pharma stuff. I haven't quit my idea of suggesting a quick "marker" detector; cheap and effective,

Thank you Doctor; and all;

Be well;

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