A Christmas MS Miracle?

An interesting thing is happening in the Multiple Sclerosis world that could greatly affect the lives of MS sufferers, but oddly not everyone in the medical field is excited about this new information.

Before I get ahead myself, lets start at the beginning.  Per the National Multiple Sclerosis Society, MS is defined as (red highlights are mine):

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.

MS is Thought to be an Autoimmune Disease

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.

One of the ways I cope with my MS is to inject myself daily with a drug called Copaxone.  Per the drug’s official web site, Copaxone works as follows (again, red highlights are mine):

COPAXONE® is a unique therapy that is thought to work both outside and inside the central nervous system (CNS) to fight damage to the nervous system.  COPAXONE® is believed to change the way your immune system reacts to MS by preventing harmful cells from developing and by stimulating beneficial cells in your body. These “good” COPAXONE®-activated cells then enter the CNS and help reduce damage at the site of lesions.

So right off the bat when given a diagnosis of MS, you’re basically told that the cause is uncertain, the classification of the disease is uncertain, the disease progression is uncertain, and astoundingly, the way in which the drugs that have been approved to treat MS work, is uncertain.  Thus your future is – you got it –  uncertain.  Until recently this uncertainty was the only thing anyone knew for sure about MS.

Keeping the above in mind, you can only imagine the frenzy that erupted when Dr. Paolo Zamboni, a vascular surgeon from Ferrara, Italy made claims that MS is quite possibly a vascular problem with a straightforward fix he’s dubbed, The Liberation Procedure.

Dr. Zamboni began studying MS in 1995 when his wife received her diagnosis.  As he reviewed the medical literature he found references, some over a century old, to excess iron being a possible cause of the disease. Dr. Zamboni being a vascular guy, had been studying how iron build up damages the blood vessels in the legs, so he wondered if maybe the same thing was happening in the brains of MS patients.  Using modern day diagnostic technologies to reexamine these theories of the past, he began to examine the vascular system leading in and out of the brain and made a fascinating discovery.  In more than 90 percent of people with multiple sclerosis that he studied (including his spouse) the veins draining blood from the brain were malformed or blocked. In people without MS, they were not. He coined this defect, Chronic Cerebrospinal Venous Insufficiency or CCSVI.

The Multiple Sclerosis Association of America gives a good explanation of CCSVI on their site:

With CCSVI, the veins located on the outside of the brain (extracranial cerebrospinal veins) – those designed to transport blood from the brain back to the heart – collapse and/or become blocked, a condition known as “stenosis.” As a result, blood leaving the brain must be rerouted through smaller vessels around these primary veins, referred to as “substitute circles.” These ancillary veins, however, cannot transport the blood as quickly or efficiently as those larger ones designed for this purpose. Not only does the blood flow slow down, but the blood may also flow backwards (referred to as “reflux”), and studies suggest that both the reflux of blood as well as a pulsing (back and forth) flow may be unique to individuals with MS.

Studies have shown that when the normal blood flow is altered, especially when the flow of blood is reversed, the body may react with an inflammatory response. Of particular importance is the activation of surface adhesion molecules, which enable damaging immune-system cells (such as macrophages and T-cells) to cross the blood-brain barrier, infiltrate the central nervous system (consisting of the brain and spinal cord), and potentially injure brain tissue, myelin (the protective covering of the nerves), and nerve cells.

The proposed damage from CCSVI also involves an iron overload for individuals with MS. As with certain other neurodegenerative conditions, unusually high levels of iron may be present. Iron levels may be particularly high in the brain and spinal cord of individuals with MS. With CCSVI, where blood flow out of the brain is slowed down and even reversed, extra iron is believed to be deposited and stored in sites near these vessels.

Based on his findings, Dr. Zamboni took his exploration further by performing his Liberation Procedure (i.e., endovascular surgeries) on 65 MS patients with CCSVI to see what would happen if these veins were opened up.

Dr. Zamboni’s wife had her procedure a few years ago and has been symptom free ever since.  Other patients have had similar success stories.  In fact, 73% of those that received the surgery have had no symptoms since.  The patient testimonies coming out of Italy are extraordinary.  It’s like that great scene from the movie Awakenings, staring Robert DeNiro and Robin Williams.

Nurse: Dr. Sayer!

Dr. Sayer:  What is it?

Nurse: It’s a fucking miracle!

And then they run down the hall to see all the patients waking up from their comas.

A vascular malformation at the core of a debilitating, progressive neurological disease?  Amazing!  More information that already falls inline to what science knows about iron toxicity and other neurological problems?  Super!  A possible fix from the world of mainstream medicine and not alternative therapy?   Thank God!  I’m mean we’re not talking bee pollen and all that other crazy shit like diet and yoga that folks have been suggesting for years – we’re talking surgery baby!  That’s right up medicine’s alley!  A fucking miracle, right?  Neurologists everywhere must be running down to the vascular lab to catch their MS patients rising from their wheelchairs!

Ummm….well…not so fast.  Take the exuberance down a notch.  You see, prior to Thanksgiving, no one was even talking about this in the United States and frankly, MS patients, myself included, are a little pissed off about that.

In fact, when the frenzy first hit, MS societies and associations out there told people not to be too excited about this information.  Doctors and medical professionals came forward to discredit Zamboni’s research.  Bloggers started bitching and moaning about his research findings. Rather than embracing this information and building upon it, many tried to push it to the side all together.  And that’s when MS patients decided that they had enough.

Dr. Zamboni first proposed a link between iron/inflammation/venous disease/multiple sclerosis in 2006 and his latest publication came out in June of last year (you can read all of his publications here).  Yet had you looked on any official US or Canadian MS web sites you would have found no information.  I started trolling those sites at the end of this summer and never saw anything about CCSVI.  Then in November a Canadian News Channel aired a documentary on CCSVI, Dr. Zamboni and his liberation procedure, and the web has been bursting at the seams ever since.

You see 55,00 – 75, 000 Canadians have MS.  In fact, another new case pops up every three days and Canada has the highest rate of MS in the world.  Now, tell a Canadian that a doctor with the last name, Zamboni, has a possible cure for MS and you should expect an uproar which is exactly what happened. Soon Bloggers, Vloggers, youtube channels, forums, and chat-rooms started buzzing and these usually quiet MS folks, too damn tired from their chronic fatigue, got pissed off and decided not to take it anymore.

Even though this information has been floating around since 2006.  And even though this info ties into what science already knows about iron and the brain.  And even though these are the organizations that are supposed to be on the cutting edge of the disease, the MS Society of Canada didn’t post anything on their web site until after the CTV documentary.  It wasn’t until right before Christmas that the National Multiple Sclerosis Society here in the States made a call for more research concerning CCSVI with the Multiple Sclerosis Association of America getting on board in early December.

When I was diagnosed in August of last year, CCSVI was never mentioned.  I wasn’t given much information at all about MS that wasn’t cryptic or obscure.  In fact, the phrase I don’t know is only tied with We’re not sure as the most popular answer when you ask a question about MS so forgive me for being a little bitchy.  I just assumed that since everything about MS is so damn desperate and uncertain, throwing in another uncertainty that has a positive spin wouldn’t be going against protocol.  I also assumed that I’d hear about news like this from my MD and not some dude with a youtube account.

Now, I get that science needs proof and I’m okay with that. Of course Zamboni’s results need to be replicated on a larger scale.  In fact, at The University of Buffalo they’ve already gotten started.

What I’m not okay with is medicine cherry picking the information that it chooses to withhold.  They’re certainly okay with me injecting meds into my ass that they’re not 100% sure will work.  They’re okay about directing me to the Copaxone web site to watch videos featuring folks having success with this medication.  Yet they don’t want me to get too excited about the results coming out of Italy.  I just don’t understand how a maybe from the world of pharmacology is any better than a maybe from the vascular world.

Unless of course it’s the 8.2 billion in sales per year in the US of MS drugs and the 20,000 MS prescriptions that will be written this week that are playing into this.  So yea, I expect big pharma to be a pain in the ass on this one, but I also expect doctors to do their damn job, give me ALL the information that’s out there and work with me to help me best understand, fight and control this shitty disease.

There’s a new drug, Laquinimod, that has been fast tracked by the FDA and if all goes well will hit the market in 2011.  Per the Medical News Today web site (you guessed it, red highlights are mine):

Laquinimod is a novel once-daily, orally administered immunomodulatory compound that is being developed as a disease-modifying treatment for RRMS. Active Biotech developed laquinimod and licensed it to Teva Pharmaceutical Industries, Ltd. in June 2004. Results from a Phase IIb study in 306 patients were published in June 2008 in The Lancet and reported that an oral 0.6 mg dose of laquinimod, administered daily, significantly reduced MRI disease activity by a median of 60 percent (51 percent mean reduction) versus placebo in RRMS patients. In addition, the study showed a favorable trend toward reducing annual relapse rates and in the number of relapse-free patients compared with placebo. Treatment was well tolerated, with some transient and dose-dependent increases in liver enzymes reported, without clinically-evident liver damage.

So let me get this straight.  A drug gets fast tracked based on the results of research involving 306 patients, yet Zamboni’s research involving 300 people is poo-pooed by many in the medical community?  And why isn’t Zamboni’s 73% rate of improvement by those that have undergone his Liberation Procedure as impressive as a 51% reduction of symptoms by a medication?

Yet ironically, after I was diagnosed, this oral drug was brought to my attention, but I was never once told about Zamboni’s research.

I go back for a check up at the end of the month.  I’m curious to see what information I’m going to receive at this next visit.  In the meantime I’m going to keep investigating this and typing up what I find as a way to not only help others, but to make sense of it all for myself.  As always, I’ll keep you posted.


7 responses to “A Christmas MS Miracle?

  1. I totally agree with you! I’ve been diagnosed 30 years, did betaseron for 12 years, tried copaxone, then gave up on all injectable drugs ~ certainly not worth the cost! I’m probably too old for the liberation treatment, 70 this month, but I for damn sure should have been given the option!

  2. I hear you Heidi. If the average yearly cost of Copaxone is $30,000, I’m averaging about $82 per shot – or more specifically, $82 per milliliter of medicine each day.

    I’m fortunate. I have insurance. But if I didn’t I’d have to ask myself would I warrant that kind of expenditure for a maybe? I’ve got 2 daughters which means, 2 college educations and possibly 2 weddings to pay for – I don’t think I’d be able to justify the expense.

    God bless you for fighting this disease for 30 years. I hope this message finds you well physically, mentally and emotionally. I’ve been fighting it for less than 6 months with few symptoms, most of which I can control by staying out of the heat.

    I just want to have all options available to me – not only the ones that require a prescription.

    And regardless of your age – I think you deserve all the options as well. In fact, if there’s a line forming – I say you get to go to the front of it.

  3. Looking forward to more posts

  4. Pingback: Time For Me To Fly « Enter The Circle

  5. Thank you Dr. Zamboni for being such a caring husband & a brilliant man. The world needs more people like you!

    I hope & pray that all of us with MS will completely recover just as your wife & many others have. Dr. Zamboni gives so many of us hope.

    Living w/ MS can be exhausting & devasting. I’m very optimistic that MS will soon be a disease of the past.

  6. Hi,
    I had read this post some months back and thought of you when I read this article. You may, of course, have already seen it.
    Anyway, I’m hoping some legit trials happen so they can determine how good of an option Zamboni’s treatment offers. Wishing you the best…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s