Thursday, August 23, 2012

A First-Hand Report – The Importance of Cerebrospinal Fluid (CSF) Flow in MS, and a Possible Chiropractic Approach to The Treatment of Neurodegenerative Disease

English: Putamen. Part of basal ganglia, which...
Recently, several studies have illuminated the important role that the proper flow of cerebrospinal fluid (CSF) through the brain and central nervous system plays in maintaining neurologic health, and also suggest that a disruption of CSF flow may play a part in a number of neurodegenerative diseases, MS included. Like CCSVI, which postulates that impeded bloodflow through the central nervous system plays a role in the development of Multiple Sclerosis, new research hints at a similar role for the flow of cerebrospinal fluid through the CNS.

Cerebrospinal fluid is a clear liquid that flows around the brain and spinal cord, and also fills natural voids in the anatomy of the brain, such as the ventricles and cisterns (the “empty” spaces in the brain as seen on MRI images). CSF serves several purposes. The brain and spinal cord are surrounded by CSF, the fluid in effect holding the brain in a state of suspension so that the weight of the organ is neutralized, keeping the lower part of the brain from suffering damage as a result of the total weight of the brain bearing down on it and pressing against the skull wall. In effect, the brain floats in a pool of CSF, which also acts as a cushion against sudden jolts or blows to the head. In instances where such trauma results in forces too great to be compensated for by the CSF, concussions can occur as a result of the brain crashing against the hard bone of the skull. Additionally, and no less importantly, CSF helps cleanse the brain of metabolic waste products, and also helps regulate the flow of blood through the central nervous system.

Most MS patients are familiar with CSF due to the ever popular and oh so pleasant procedure known as a lumbar puncture, or spinal tap. The stuff that the neuro draws out of your spine after sticking a spike into your back is CSF, which when analyzed can provide several indicators helpful in diagnosing the disease, such as oligoclonal bands, better known as O-bands. O-bands are an indicator of inflammation and immune activity going on within the central nervous system, an environment in which such activities are not welcomed. A vast majority of MS patients (upwards of 90%) have multiple O-bands, and the combination of CSF analysis and multiple lesions on MRI images are major components in completing a diagnosis of Multiple Sclerosis.

A number of recently published studies suggest that a breakdown in the natural flow of CSF can be quite detrimental to the central nervous system, and may be a driving force in the factors that culminate in neurodegenerative disease. One study (click here) discovered a previously unknown series of pathways that CSF follows throughout the central nervous system, providing new insights into the importance of CSF in the brain’s efforts to cleanse itself of potentially toxic metabolic waste products. Another study, done by Doctor Robert Zivadinov and the good people at BNAC, who are also doing extensive research into CCSVI, showed that CSF flow dynamics are altered in the brains of MS patients (click here).

Building upon the work of chiropractor Doctor Michael Flanagan, who has researched and written extensively on the role of CSF flow and neurodegenerative diseases (click here and here), another study, which used a specialized upright MRI device – known as a FONAR MRI – to scan MS patients, linked trauma to the upper neck and bottom of the skull to abnormal CSF flow and the eventual development of MS in study subjects (click here). This research, in turn, led to an ongoing investigation using FONAR MRI imaging in conjunction with a specialized chiropractic technique, known as Atlas Orthogonal, to demonstrate that not only is CSF flow abnormal in MS patients, but that this flow can be corrected by physically manipulating the Atlas bone, the uppermost cervical vertebra in the spinal cord. The bone gets its name because the weight of the entire head rests upon it, just as, in Greek mythology, the weight of the world rests on the shoulders of Atlas. This study is being headed up by chiropractor Doctor Scott Rosa and Doctor Raymond Damadian, the man who actually invented the MRI back in the 1970s.

The graphic below, which can be found at the information packed ATLANTOtec website (click here), nicely illustrates the detrimental impact a misaligned Atlas bone might have on blood vessels and nerves associated with the central nervous system:


In the above depiction, the yellow dot represents the vagus nerve, the blue dot the internal jugular vein, and the red dot the internal carotid artery. As the animation shows, a misaligned Atlas bone can put pressure on all three of these features, which, by appearances, one wouldn't imagine could do much good for the patient. Atlas Orthogonal chiropractors attempt to put the Atlas bone back into alignment using specialized techniques originated by Doctor Roy Sweat, which are taught at the Sweat Institute in Atlanta, Georgia (click here). The Atlas Orthogonal (AO) technique uses gentle pressure applied to the mastoid bone (behind the ear) to realign the Atlas bone, using a specialized table and an AO instrument carefully calibrated to each patient’s needs.

Since January, 2012, I’ve been taking part in the ongoing study being conducted by Doctor Rosa and Doctor Damadian, one of dozens of patients participating in the study. My involvement began with a trip up to Albany, New York, this past January, where I was scanned in an upright FONAR MRI that was outfitted with a prototype coil developed specifically to track CSF flow by Doctor Damadian, and which also utilized proprietary software to direct the scanning. After my initial scan, I was given an AO treatment, and then scanned again. Indeed, the differences between the two scans were rather dramatic. In my pretreatment scan, CSF flow was disrupted and seemed to double back and jet against my spinal cord directly at the spot where my one big lesion is  located. After the AO treatment, the scan showed a much more normal flow of CSF, resulting in a larger amount of fluid separating my brain from my skull base, and a more steady flow of CSF throughout my CNS.

It’s important to note that Doctor Rosa is using his own carefully developed derivation of the original Atlas Orthogonal therapy technique, using FONAR MRI imaging to calculate very specific parameters and angles for treatment (known as “vectors”). Therefore, his approach differs from that done by other AO practitioners, so much so that it is patent pending.

I’ve been receiving weekly follow-up treatment here in New York City by Doctor Scott Bender, who is working closely with Doctor Rosa on the study, and has been trained by Doctor Rosa on these specific techniques. This is not to say that the techniques practiced by other AO chiropractors are not potentially helpful, but the precise methodology Doctor Rosa uses is, at this time, unique. If study results warrant it, Doctor Rosa plans on training many additional practitioners in his approach, but until that time the exact techniques being used in this study are generally unavailable except from the few practitioners that have already been trained under Doctor Rosa’s guidance.

Although Doctor Rosa’s study is still underway, initial results appear to be promising. Some patients are reporting symptomatic improvements, but it is still too early to draw any conclusions. My own experience has thus far not been successful, as I have not (yet) derived any benefit from treatment. I’m a very poor example by which to judge, though, since my condition is extremely atypical, and, as I’ve previously written (click here), has defied all efforts at definitive diagnosis. Additionally, my body seems to have trouble holding the AO adjustment. Some patients report staying in alignment for many weeks after adjustment; I’m generally out of adjustment by the time I go back for my weekly visit to Doctor Bender.

Although provocative, the findings and hypotheses of Doctor Rosa and his associates are sure to be controversial, for many of the same reasons that CCSVI shook things up. Both theories fly in the face of traditional MS dogma, and offer explanations for neurodegenerative disease that differ greatly from those proffered by mainstream neurology. Multiple Sclerosis is nothing if not complicated, and its pathogenesis is almost certainly multifactorial. It’s doubtful that any one theory will prove to be THE key to solving the entire MS puzzle, but, given proper attention, some of these “radical” theories may have the potential to unlock the many mysteries held by MS, even if they do so tangentially. Investigations into the widely accepted autoimmune theory have yet to offer up anything approaching a cure, and the exploration of alternative theories, done responsibly, can only benefit patients as researchers broaden their horizons and begin understand MS as not strictly an immune modulated disease confined to the CNS, but a condition involving yet to be understood degenerative mechanisms with systemic implications as well.

As always, hope is on the horizon, and patience is the key. Unfortunately, for those of us suffering from a progressively crippling disease, patience comes at a very high price.
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Sunday, August 12, 2012

Makes No Sense at All


My Uncle Paul was a good man. He was the kind of guy that New York City used to mint by the thousands, before the high finance types took over and used their wads of cash to smooth over the wonderfully hard edges that defined this once gritty city. Paul was a quickwitted, happily blue-collar, salt of the earth man’s man, who exuded a nonthreatening air of self-confident toughness that couldn’t hide his huge heart. He loved people, and was a virtual encyclopedia of jokes and one-liners, which he delighted in telling in staccato fashion, one right after another, until he had you laughing so hard that all the jokes blurred into one, making it impossible to remember any individual jest. He laughed just as heartily as his audience, with a big bright smile so infectious it could have been used to solve the energy crisis.

Paulie, as I called him, was a good husband and provider, and although never a rich man always kept my aunt and their three kids from wanting. An unabashed character, he rode motorcycles back in the 50s and 60s, when they were still emblems of danger and rebellion, and not the instant antidote to a midlife crisis or rideable bling that the wonders of modern marketing have turned them into today. A favorite family legend dates back 50 or 60 years, to a time when horse-drawn carts were still used to sell wares on the streets of the Bronx, where my mom’s side of the family grew up. As the story goes, a horse broke loose from its cart and started galloping down the crowded city streets. Paul, a kid brought up on and by those streets, instinctively jumped on the back of the horse as it ran by, and somehow managed to calm and then stop the beast. I’m sure as he dismounted he entertained the cheering crowd that surrounded him with a series of equine one-liners, a twinkle in his eye and a smile plastered to his face and the faces of all those within earshot.

In 1997, two of Paul’s now adult kids, a daughter and a son, died of AIDS within five months of each other, a tragedy so horrendous my mind still reels when I think about it. How brutally unfair, how sadistically abysmal was this twist of fate, a tragedy that makes a mockery of any na├»ve notions of a just universe. At the time I was living in Florida, and hadn’t seen Paul or my cousins in maybe a decade, and still the news hit me with a blow that bordered on the physical. The emotional storm Paul, my aunt, and their surviving daughter had to weather is, I think, impossible to comprehend, yet when I moved back to New York a few years later and became reacquainted with my Uncle, I was greeted with that familiar fusillade of jokes and that shining bright smile. Still, I could sense the gaping wounds deep inside my Uncle Paul’s soul, the presence of my prematurely deceased cousins always in the air, adding a bittersweet sense of melancholy to each encounter, my uncle’s laughing eyes unable to conceal the hurt beyond healing held within. Still, somehow, Paulie persevered, never publicly displaying any bitterness or despondency, my love and respect for him ever growing.

About six years after I returned to New York, Paul was diagnosed with cancer, and was dead within a year. I was three or four years into my MS diagnosis at the time, and already my mobility was severely hampered, but of course I attended the funeral of this man for whom I harbored such boundless fondness. While standing unsteadily at his gravesite, watching his casket as it was slowly lowered into the earth, I thought about the arc of his life, and couldn’t help but picture Paulie arriving at the pearly gates, breaking up the gatekeepers with some impeccably timed heavenly humor, and then purposefully asking them, “Now, please, please tell me – what the fuck was that all about?”

I often think of my Uncle Paul when contemplating the twists and turns of my own life. We humans (I’m assuming everybody reading this is human) have a tremendous need to try to make sense of things, to seek out order amidst the chaos of existence, from seeing giraffes in clouds or holy visages on pieces of toast, to trying to put the whole of our lives into some sort of logical context, mentally spinning and twisting the puzzle pieces of our pasts in an attempt to make them pave discernible paths to our present. This is especially true when we hit periods of misfortune, and now, despite my efforts to stay rooted in the present, I’m left with plenty of time on my hands courtesy of a crippling disease. Despite myself, I find it almost impossible to not look back and try to sort it all out, as if by identifying just where things went south I might somehow mystically resolve my present predicament, or if not fix it then at the very least explain it. Although I do recognize that there are no real answers to be found, at times I’m still compelled to stare deeply into my past, like a voodoo priestess gazing into a bowl of chicken entrails, and try to comprehend how the path of my life led me to this twilight zone existence, a man forced by disease to gradually watch himself disappear.

There are those who live very self-directed lives, who from a young age somehow knew what they wanted and how to make it happen. I was not one of them. Having now been chronically ill for over nine years, I’ve had a chance to observe some of these strange creatures firsthand. Many times, when in a medical setting, I’ve been shocked to discover the young person I’m talking to isn’t a volunteer or some kind of administrator, but an actual MD, doing their residency at an age at which I was still walking around with all the direction of a fart in a windstorm, counting on some tremendous stroke of luck to turn me into a rock star, actor, or writer. As a young man I suffered from an acute case of HUMA (Head Up My Ass) syndrome. Yes, I was the lead singer of punk rock band, and yes, I did do some writing, but I never did the heavy lifting necessary to turn dreams into reality, instead relying on serendipity to deliver me to what I was sure would be a star-studded destiny, one that would bring the recognition I craved along with the ability to live life on my own terms.

In the wee small hours I often can’t help but time trip back to periods of happiness and also to those of turmoil and discontent, wrestling with just how I journeyed from those places to my present reality. My life can quite tidily be divided into several distinct sections, a chronology of locations and circumstances that neatly cleaves along the lines of the decades of my existence. My childhood and adolescence, during the 60s and 70s, were spent in New York City, Boston played host to my college years and Bohemian post college days during the 1980s, the 1990s saw me become an accidental Floridian and then a reasonably responsible adult, and the dawn of the 21st-century found my path taking me back in New York City, where at first things seemed to almost miraculously fall into place, my career blossoming and a wonderful woman agreeing to be my wife, only to hit an unexpected and treacherous detour in the form of a thus far incurable creeping paralysis.

Along the way I went through many changes, experienced triumphs and disasters, and committed deeds worthy of pride and others of regret. I met terrific people, made lifelong friends, and also encountered my share of liars, cheats, and flaming assholes. The precise path that winds through and connects all of the disparate elements of my history is paved with my own willful acts but also generous amounts of luck, both good and bad, a tidal wave of experience cresting to form the person who I am today. I suppose much the same can be said of almost all people’s lives; though the details and exact mix of ingredients may change, we all share the tragedies, victories, banalities, and scintillations of being human.

So, is there any sense to be made of this? Was there anything in Uncle Paul’s life, or my own, that offer any explanations at all? Did anything in my past presage the current troubles in which I find myself? For much of my life I was almost comically hypochondriacal. Was I perhaps not so much neurotic as prescient? Or is this just another example of the preponderance of chance in our lives; give me a room full of 100 hypochondriacs and I can guarantee that eventually almost all of them will find their worst fears realized.

As a young man, full of piss and vinegar, I loudly proclaimed that I would never succumb to the mainstream 9-to-5 workaday world, which I eventually and begrudgingly did, a fact that I never quite reconciled myself to despite my relative success. But MS put an end to my working life, and gave rise to this blog, which in turn has in bizarre fashion turned many of my youthful pretensions into reality. If, when I was 23 years old, a gypsy fortune teller had told me that in 2012 I’d be living in a high-rise apartment building next to Lincoln Center with my beautiful and loving wife, that my words and pictures would be seen and read by people near and far, that I’d sleep and wake to nobody’s schedule but my own, and that my thoughts might actually impact the lives of others, I’d have jumped for joy, believing that all my dreams would come true. Of course that fortune teller would have left out one tiny detail, an asterisk that would transform dreams fulfilled into, well, if not quite nightmares then something treacherously close.

One can drive themselves to madness constantly searching for answers to questions that might not even be questions but simply constructs of that strange human predilection for finding patterns in the sand. In the end, all we have is the present, and the best use to be made of the past is to learn from its hits and misses to how make the most of the moment now occupied. The future, for the sick and healthy alike, has yet to be written. We can exert our influence on it, but inevitably a large part of our fate is out of our hands, and just as it’s a fool’s errand trying to make sense of the present by ruminating over the past, it’s equally unwise to try to foretell the future based on current circumstances. The only sense to be made is that there is no sense; my uncle didn’t deserve his ill fate but neither does the son of a billionaire deserve the silver spoon they are born with. In the end, all of my pondering has led me to one conclusion, that we’re all just gamblers taking part in a giant crapshoot, and the best we can do is try to nudge the odds in our favor, blow on the dice, and let them roll…

POSTSCRIPT: As I was finishing this essay, the Olympic closing ceremonies were on TV in the background, and I suddenly heard this song filtering through. Perhaps there are more things in heaven and earth than are dreamt of in my philosophy…

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