Death knells and coffins...

Death knell for CCSVI!---Another nail in the coffin---
Goodbye to all that; a short history of CCSVI---
CCSVI debunked!---The end for CCSVI

If all you read were the headlines, you might think that CCSVI was nothing more than a scourge, a fantasy, a vampiric spector that science has, thankfully, stabbed through the heart and removed forever.
It's over. Move along, people.  Nothing to see here.

But there is much more going on.

This week, a paper published in a neurological journal showed
"severe extracranial venous anomalies that signficantly impaired normal outflow from the brain" occur in some people with MS.
The full paper, in a provisional pdf, can be viewed here for free:
http://www.biomedcentral.com/content/pdf/1471-2377-13-151.pdf

These scientists do not think CCSVI is over.  They're still finding it.

Jeff and I know all about these extracranial venous anomalies that significantly impair the flow of blood from the brain to the heart.

Four and a half years ago, Jeff and I saw that very same problem happening in his body.  We were astounded at the MRV images on the computer screen in his doctor's office, which showed slowed collateral circulation and two malformed, stenotic jugular veins.

I put up an image from his magnetic resonance venography on an MS Forum.

And in doing so, poked a hornet's nest.

You can see in this MRV picture on the left from Stanford, Jeff had no jugular flow on the left side (right on pic), and reduced flow on the right.  This is evidenced by the collateral veins that are lit up like Satan's curly fries.  This is not normal.
What you should see are straight and open jugular veins, that look like drinking straws.  Like the picture on the right.  Can you see the difference???  Well, our doctor saw the difference, and we decided to treat Jeff's venous malformation.



In fact, both of the images were taken at Stanford University, by one of the premiere vascular specialists in the world.  He and his radiology team would later publish a paper on what healthy normal venous MRV looked like, compared to people with MS.  He believes that the kind of collateral circulation and pulsatility found in pwMS could well be damaging to the brain.  Here is one of his papers on this.
http://www.ajnr.org/content/33/8/1615.abstract


When Jeff's jugular veins were opened up, the collaterals went away, his cerebral blood flowed through his jugular veins in a timely manner, no more pulsatility.  And Jeff's brain has healed.  No MS progression.  His gray matter looks normal on MRI.

It's hard not to wonder what would have happened if I had simply taken the research to Stanford, where Jeff was treated, and then gone home to live out our days.  But I was part of an online MS forum, and we'd been sharing information between pwMS and caregivers.  In fact, that was how I first read Dr. Zamboni's published papers.

Maybe the research would have progressed more readily without patient involvement.  Maybe the scientific community would have been more accepting of Dr. Zamboni's research, without the media and patient spotlight.

But I doubt it.
And anyway, there's no going back.
I'm sorry for the way neurologists have used patient advocacy to prevail against the science.... but I'm also not sorry.  Because I got my energetic, brilliant husband back.  And he no longer has heat intolerence, sleep apnea, or crippling fatigue.  No MS progression.  He's still working more than full days, jogging, biking and living.

CCSVI exists.  It impairs blood flow from the brain.  It may not affect everyone with MS, and it may be present in normal people.  It's showing up in other neurological diseases.  There is great debate as to how it should be treated.  Jeff's doctor used stents, others have replaced veins, ballooned, used cutting balloons--others believe lifestyle and exercise may be enough, or antibiotics might help.  There is no agreement on the best course of treatment, and that has created confusion and controversy.

It's also clouded the fact that there are newly discovered and very obvious venous problems related to neurological disease.  

CCSVI exists.
How it is best treated will be debated, but this exploration is not even close to being over.
Joan

Sleep and the Brain

New research from the University of Rochester, published today, reconfirms the importance of sleep for brain health.

Their results, published in Science, show that during sleep a plumbing system called the glymphatic system may open, letting fluid flow rapidly through the brain. Dr. Nedergaard's lab recently discovered the glymphatic system helps control the flow of cerebrospinal fluid (CSF), a clear liquid surrounding the brain and spinal cord."It's as if Dr. Nedergaard and her colleagues have uncovered a network of hidden caves and these exciting results highlight the potential importance of the network in normal brain function," said Roderick Corriveau, Ph.D., a program director at NINDS.

A few years ago, I first wrote about REM sleep and brain oxygenation. After venoplasty and restoration of jugular, rather than collateral venous flow,  my husband Jeff had a return of dreaming and restful sleep.  Now that his jugular veins had been repaired, they were the major route of venous return for his brain while he slept, and the changes for him were immense and immediate.  After coming home from his procedure at Stanford, he no longer had night time spasms or fits of apnea, when he would literally wake up, gasping for air.  He now slept through the night, and woke refreshed.  He could now recount his very vivid dreams to me.   This was all new for him.

When I attended the first CCSVI conference in Bologna in 2009, I heard Dr. Salvi talk about the restoration of REM sleep and dreaming in Italian patients that had been treated for CCSVI.  It was the first intimation that something vital was happening to Jeff's brain while he was in deep sleep.  Here is my post on this topic, with research on oxygenation of the brain during sleep--
http://ccsviinms.blogspot.com/2010/09/to-sleep-perchance-to-oxygenate.html#more

Earlier this year, a new study from the University of Wisconsin showed us why sleep is essential for remyelination of the brain and synthesis of oligodendrocyte precursor cells.

They found that during sleep, hundreds of transcripts that govern the synthesis of cells called oligodendrocyte precursor cells (OPCs) are up-regulated during sleep, while genes involved in cell death, cell stress response and cell differentiation are up-regulated during wake. An assay of living cells confirmed that OPC proliferation doubles during sleep, especially during rapid eye movement phase (REM sleep) associated with dreaming.
http://www.med.wisc.edu/news-events/sleep-produces-cells-that-grow-and-repair-nerve-cell-insulation-/41696
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And today, a new study from the University of Rochester helps us understand the different functions the brain performs during sleep and wake, and why sleep is essential.  
http://www.eurekalert.org/pub_releases/2013-10/nion-bmf101713.php

In findings that give fresh meaning to the old adage that a good night's sleep clears the mind, a new study shows that a recently discovered system that flushes waste from the brain is primarily active during sleep. This revelation could transform scientists' understanding of the biological purpose of sleep and point to new ways to treat neurological disorders.

The University of Rochester researchers have been studying how the brain cleans waste during sleep, and they have named this process the "glymphatic system", because it combines the lymph process of cleansing and glial cells.  This system is like "a plumbing system that piggybacks on the brain's blood vessels and pumps cerebral spinal fluid (CSF) through the brain's tissue, flushing waste back into the circulatory system where it eventually makes its way to the general blood circulation system and, ultimately, the liver."

Time for the BIG picture. When we lie down, our cerebral circulation changes.  This is, due in large part, to the fact that gravity allows the jugular venous system to become the main outflow.  The collateral venous system, which is activated when we are upright, gives way to the larger jugular veins.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1665206/

In normal people-- who do not have jugular venous malformations, or CCSVI-- this allows for effective flow while supine.  Why is this important?  Because it appears that this flow is essential for removal of waste from the brain.  Here's more from the U of R--

Venous Hemodynamics

Understanding venous hemodynamics is of the utmost importance when studying CCSVI.
"CCSVI is not about architecture, it's about flow."
Dr. Paolo Zamboni said this to me when we first met at his international CCSVI conference in Bologna, Italy in September 2009.
He explained that it was not enough to scan the veins, or use MRV technology, or just look for stenosis.  It was essential to understand hemodynamics.

Which is why the knowledge of scientists like Clive Beggs is so important.  As an engineer and Professor of Medical Technology, Professor Beggs has insight into the physics of blood flow.

Highly Recommended Reading----


Venous hemodynamics in neurological disorders: an analytical review with hydrodynamic analysis  
Clive B Beggs
Venous abnormalities contribute to the pathophysiology of several neurological conditions. This paper reviews the literature regarding venous abnormalities in multiple sclerosis (MS), leukoaraiosis, and normal-pressure hydrocephalus (NPH). The review is supplemented with hydrodynamic analysis to assess the effects on cerebrospinal fluid (CSF) dynamics and cerebral blood flow (CBF) of venous hypertension in general, and chronic cerebrospinal venous insufficiency (CCSVI) in particular.

CCSVI-like venous anomalies seem unlikely to account for reduced CBF in patients with MS, thus other mechanisms must be at work, which increase the hydraulic resistance of the cerebral vascular bed in MS. Similarly, hydrodynamic changes appear to be responsible for reduced CBF in leukoaraiosis. The hydrodynamic properties of the periventricular veins make these vessels particularly vulnerable to ischemia and plaque formation.

Despite conflicting studies, there is increasing evidence that CCSVI is a real physiological phenomenon, and that it is in some way associated with MS. The evidence from CSF-related studies in patients with MS, and the hydrodynamic analysis presented here, suggests that CCSVI causes venous hypertension in the dural sinuses. However, the role that CCSVI might play in the pathophysiology of MS remains unclear, and more work is urgently needed to understand the clinical relevance of this condition.

http://www.biomedcentral.com/1741-7015/11/142