Emotional Investments vs Objective Testing

November 20th, 2010   by   Andrew

Now that Shannon has had her surgical procedure for CCSVI, I have a lot of questions regarding medical practice when it comes to new or innovative ideas.

The Liberation Treatment is kind of a funny thing. There isn’t really anything new to it at all. Venograms are quite common. Ultrasound is an everyday medical tool for collecting all sorts of information. Angioplasty (ballooning blood vessels) has been a common practice in many treatments for years now.

The only thing that is new is applying these ideas to patients diagnosed with Multiple Sclerosis. Dr. Zamboni, looking at a problem from a perspective outside the usual field of examination, asked a rather curious question: could one system within the body affect another system within the body? Could a circulatory system affect a nervous system?

It’s elegant, to me, in that it’s a kind of derivative work. This is not invention, a bold leap into any unknown areas of knowledge. Instead, it’s piecing together ideas from things already in place, heavily practiced, and highly trusted.

Ok. So that’s a simplified background. Now what I really want to ask is about how the process of proper clinical study or testing was broken down. Dr. Zamboni has not done a thorough clinical study. Attempts are currently being made to organize and publish a professional study but it takes time, it takes planning, and it takes funding. There is a registry, but that’s a slightly different thing and serves a different purpose.

This lack of present clinical testing through proper authoritative channels hasn’t diminished the popularity of this new-found hope for people with Multiple Sclerosis. All the data so far, from literally thousands of MS-diagnosed people that have had the treatment, is still considered anecdotal. And maybe that’s as it should be.

However, what surprises me is that this lack of clinical testing hasn’t stopped doctors and medical practitioners from getting the medical procedure done for themselves or for loved ones!

I think I see a relation here, but I’d like to hear your thoughts on this too. Here is a list of points, admittedly biased, that I want to use.

1. Dr. Zamboni’s wife was diagnosed with MS. He has vocalized his reasons for studying MS and blood flow around the brain. He wanted to help his wife with her condition. And when he saw the initial results of the treatment on people, he wanted to give the treatment to more people and tell people about what was happening.

2. A British doctor living with MS was in the first groups treated under Dr. Zamboni.

3. A neurologist in San Diego has a son diagnosed with MS. Here is a great interview where he explains his views on the diagnosis and the new treatment. Not all neurologists share his views on this new treatment.

4. When the news story first broke out, a local family doctor cautioned one of her regular clients with MS to be patient. Wait until better information comes out. However, within a few months time, the same doctor rushed her own niece (newly diagnosed with MS) and her regular patient to get tested for blockages before a local clinic stopped offering the ultrasound service to people diagnosed with MS. (Note - this story is gossip, but yes I am including it on my list.)

5. A naturopathic doctor with MS underwent the Liberation Treatment just a few days after Shannon. They had a few physio sessions together after their time in the hospital.

In each of these particular cases, there is an emotional investment or empathic attachment or even just a plain old personal desire. Why aren’t these particular people waiting?

Actually living with a diagnosis as debilitating and frustrating as Multiple Sclerosis (in either themselves or in loved ones) seems to change the information, or at least change the processing of the information.

So, here are my questions:

What is it about emotional investments that causes otherwise objective, careful professionals to forgo their usual loyalties to scientific methods and proper procedure? (Ok, yea there is a lot of informed, critical thinking and personal evaluation going into this too, I realize…)

Why do some professionals (and neurologists) use phrases like “be patient”,”use caution” and ”might be a hoax” immediately for something that hasn’t yet been proven effective or ineffective yet (to their standards of testing)?

Since Multiple Sclerosis is a syndrome (symptoms that appear together with an unproven theory about the cause) and not a diagnosis of an understood disease, should the spirit of discovery not lead the medical field to embrace the opportunity to test a new idea?

I find this situation particularly intriguing because it seems to be one of the first situations where social-media spread the new idea  so quickly that it could not be controlled by the usual, patient, western, authoritative institutions. And we have to address this because there will likely be similar breakthroughs and discoveries coming in the next decade or two. What are we prepared for?

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CCSVI, Costa Rica and Liberation

November 15th, 2010   by   Shannon

Where do I even start? 

It has been over five years since I first started noticing weakness in my left leg – what started off as a slight limp became a ‘dead foot’ that I twisted and tripped over so often I eventually had to wear a leg brace to keep it from dragging. 

At 31, I was officially diagnosed with Multiple Sclerosis (MS) and by 32, I had to walk with a cane.  This is kind of the condensed version – there were years of frustration and misdiagnosis, years of falling down and years of dealing with a plethora of invisible symptoms (it’s so much easier to talk about the physical stuff than say, the cognitive dysfunction or the crippling fatigue).  I put on a ‘brave face’ and made an effort to stay positive, but in reality that wasn’t the case.  I hated it – I was angry, I was frustrated and I felt like this was my lot in life, to always have to rely on other people to help me – I had lost a good portion of my independence and felt both helpless and hopeless.

Shortly after I turned 33, the now infamous (in MS Society circles) episode of W5 aired, in which Italian Professor Dr. Paolo Zamboni presented his theory that MS may be linked to a condition he calls Chronic Cerebrospinal Venous Insufficiency (CCSVI), in which there are stenosis (narrowing) of the veins responsible for draining the deoxygenated blood from the central nervous system.  This abnormal flow has been found in many MS patients and can be solved by a simple angioplasty that takes about an hour under a general anaesthetic.  Once proper blood flow is restored, many MS patients see improvements in their symptoms.  Again, this is the condensed version – there are so many other things at work, which I’m not going to go into.  I could talk all day and write pages on the subject of CCSVI – not that I am an expert (obviously), and most of it would just be opinion anyway.  But after I saw that, I had hope again for the future – for my future and for my future with Andrew.

So, fast-forward to age 34 – two weeks after my birthday, Andrew and I headed to Costa Rica for my ‘Liberation Treatment’. 

Before I go any further, please let me make it clear that I am not a medical professional, that I am only speaking from my personal experience and I am not in any position to give advice or recommend this procedure for anyone else.  MS symptoms are different for everyone, and the results from this treatment are also very different – some people notice immediate results and some notice small changes over time. Some experience little or no changes after angioplasty and some are found to have no stenosis at all.

The doctors at Hospital Clinica Biblica in San Jose found three blockages – one in my right jugular, one in my left anterior jugular and one in my azygos vein.  All three were ballooned (they follow Dr. Zamboni’s protocol and don’t use stents in Costa Rica) – the whole procedure took less than two hours and I was left with a hole slightly larger than the head of a pin.  I had to lie perfectly still for eight hours following procedure (which was okay because I was pretty groggy from the twilight anesthesia), so I slept most of the time anyway.  The next morning, I woke at 6am and had more energy than I have had in years.  At first, I wasn’t sure if it was the procedure or if it was because I slept for more than 12 hours, but it has been almost 3-weeks now and I’m still feeling as good and just as energized as I did that first day.

I booked my procedure through Passport Medical (PM) – it was such a huge relief to have everything taken care of for me.  I had no experience with dealing with hospitals in other countries, nor was I comfortable with the idea of being completely vulnerable in a country I am not familiar with.  I am not fluent in Spanish, so international patient representatives (Gloriana and Isabel) were on hand at the hospital to translate and help out wherever they could – PM arranged everything.  Aldo was waiting for us when we got off the plane, he drove us to Hotel Bougainvillea, and from the moment we arrived we felt welcomed into the CCSVI family (there were close to 50 couples in the hotel, mostly from Canada, to be treated).  There was a PM office right inside the hotel so Marva, Brigitte or Oscar were always on hand to answer questions and help out in any way they could with whatever we needed.  Nurses (Javier and Monica) were always around as well.

A couple of days after the procedure, I began work with the physiotherapy team.  Andrea, Sophie, Jose and Claudio were wonderful – with only a week of physio, there wasn’t nearly enough time to make an immediate difference, but now that I am home, I know what I need to work on and what exercises I need to do.  It was an amazing experience.  I sound like a salesperson for Passport Medical, but that is not my intention – although I was more than happy with the program they provided.  And Costa Rica is such an amazing country – the scenery was incredible and the people were so beautiful…Andrew and I were making plans for our next visit before we even left.

So that was my experience.  There is a 30-50% possibility that the veins will re-narrow…but there is also a 50-70% chance that they won’t, so if I have to focus on numbers, the latter are the ones I choose to see.  For now, I am focusing on my rehabilitation and doing what is necessary – eating right, exercising, managing my stress and remaining positive – to maintain this new life that I have been given.  If I don’t see anything further, that is fine with me – what I’ve experienced is far greater than what I expected, and I will graciously accept what I have been given.

 Again, I just want to say that this is only my experience – I am not recommending this treatment for anyone with MS.  All I can advise is to do lots of research and to do what feels right for you.  If you choose to go ahead with this procedure, be sure to ‘manage your expectations’ – that was the key piece of advice that I received.  This is not a miracle cure, nor does it work for everyone.  Some people have had miraculous results, just be aware that this is not the norm.  I personally see my own results as ‘miraculous’, but sometimes personal miracles are all about interpretation, aren’t they? 

Thanks needs to given to Dr. Zamboni, to all of the doctors and hospitals around the world who are exploring this ‘new’ theory (which, incidentally is not really new, just re-introduced in the age of social media and consequently gave a say to MS patients in their own treatment) and giving patients new opportunities.  And thank you to all of those who have ensured that the voices of us MSers who believe in Dr. Zamboni and who believe in this treatment are heard.    

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Letting Things Flow (Please take the Poll!)

October 23rd, 2010   by   Andrew

Some of you nudging readers may know that Shannon and I are going on a medical adventure. Shannon has decided she wants the Liberation Treatment, in which veins are expanded or unblocked to promote better blood flow. The Liberation Treatment has received a lot of attention from people living with Multiple Sclerosis (some news here and here and here). It should not be looked upon as a miracle cure that wipes away all problems, of course. It is instead one more tool that can be used to manage the symptoms and improve the lives of many people  living with MS.

The actual medical procedure is common enough and has been in use for decades now, but is currently available only for patients not diagnosed with Multiple Sclerosis (in our neck of the woods, at least). The use of the treatment for Multiple Sclerosis has not been properly, clinically proven to the satisfaction of our medical authorities or our government. However, it has found approval in several countries around the world.

As noted on the home page, all revenue from sales in the store will be going to help pay for Shannon’s Liberation Treatment. Please show some support. If you do not find anything to your humour then please contact us or leave a comment and we can work together on a creative custom design.

So, for two weeks we will be gone. Shannon will be undergoing the tests and procedures followed by good amounts of physiotherapy. I will do my best to stay out of trouble, I promise. A few blog posts are now automatically scheduled and should appear over the next while,  but I don’t plan on checking in much.  I will be plotting new directions and projects for this website.

I’ll be looking for a new theme to explore in the blogs and would love your help. I’m not sure where I want to take things in the coming months but I have some ideas and would love to change things up a little. Here are three ideas for possible themes. Please make a selection or suggestion in the poll below and help me decide on what else we should explore and discuss.

1. Nearly Lost or Marginalized Worldviews — What ways of looking at the world have we almost lost? Ancient mythologies, aboriginal traditions, and cultures that have faded away.

2. Present-Day Conceptions of God – Nobody even knows how to define the word ‘God’ anymore! But, people still try. Why is that? The Observer had an article recently about how six church leaders look at the word ‘God’. If it is a word in search of a meaning, maybe everyone should be in on the discussion.

3. An Ironic Bible Study – Today it seems as many atheists are reading the Bible as Christians. But, like many Christians, they don’t really know what they are getting into. This is especially strange considering just how many good resources there are out there now for people with internet access. The literal approach to the Bible is nearly dead and with it the authoritative power. Now what can we get from this small group of ancient stories using a literary approach?

4. [Insert your cool idea here]



What do you think?


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The birth of a new community!

February 26th, 2010   by   happynews

I stumbled across 29Gifts.org quite by accident.  I am easily distracted – in toy stores, when something has a sticker on it that says ‘Try Me’, I find it next to impossible to walk by without trying it.  Same goes for links – often when I am searching for something in particular, it takes me on a journey for hours and I often forget what I was searching for in the first place.

This is how I discovered 29 Gifts. The idea itself is so simple – give 29 gifts for 29 days, but there’s a bit of a catch.  You need to be both authentic and mindful of your actions.  Giving is not about what you will receive in return – it’s not about giving to satisfy a sense of obligation, but about giving for giving’s sake.  It’s about making a contribution to the greater goodness of the universe.  Nothing more – and in the end, what you give comes back to you.

The 29 Gifts Challenge movement (and it can be called nothing less) was brought about by Cami Walker, a young woman diagnosed with Multiple Sclerosis.  A rapid deterioration of her health had her sinking deeper and deeper into a state of self-loathing and self-pity.  She sought the help of a friend, Mbali Creazzo – an African medicine woman – who gave her a unique prescription for healing.  Mbali told her to give a gift every day for 29 days, and then see how she felt.

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“Healing doesn’t happen in a vacuum, but through our interactions with other people,” Mbali said.  “By giving, you are focusing on what you have to offer others, inviting more abundance into your life.  Giving of any kind is taking a positive action that begins the process of change.  It will shift your energy for life.”

Cami eventually went on to write a book about her own journey (which includes an epilogue that goes on to say that she has just completed 365 days of giving instead of 29).  And the website, 29Gifts.org, is a community of giving.  When you sign up, you are provided with a blog page to keep track of your journey – there are a series of forums where ideas can be found, various causes that are either supported by or have been created by members – while similar to Facebook or other social networking sites, it is unique in that it is made up of people who are simply trying to make a difference in their world and the world around them.

To sign up or just to have a look around, visit www.29Gifts.org.

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HOPE – Multiple Sclerosis and Dr. Zamboni

February 10th, 2010   by   Shannon

This first post for the Happy News is written by Shannon. It is a message of of innovation and hope.

This past weekend, North America was introduced to Dr. Paolo Zamboni, a professor at the University of Ferrara in northern Italy.  In recent months, he has caused quite a stir in the Multiple Sclerosis (MS) community with the introduction of his findings among a small trial group of MS patients in Italy.

He has discovered that Chronic Cerebrospinal Venous Insufficiency (CCSVI), a narrowing of the veins in the neck and chest, is prevalent in MS patients.  CCSVI causes insufficient blood drainage from the brain which results in iron deposits in the brain and spinal cord.

The treatment, aptly named “the Liberation Treatment” involves a relatively minor procedure, a balloon angioplasty or the placement of a stent to open up the affected vein(s) to allow for proper blood flow.  And while he doesn’t claim that it is a cure for MS, it has been proven effective in the treatment of that small trial group.  And an effective treatment is much more than what is available now.

There are still some hurdles to overcome, some scepticism that comes with all groundbreaking ideas that go against popular belief – but overall, the reaction has been promising.  Two facilities in Canada (University of British Columbia and McMaster University [neat videos here] ) are embarking on trial studies, as are facilities south of the border.

This promising new treatment has given a new found sense of hope to those affected by MS – there are only so many times we can hear the words “We are getting closer to finding a cure.”  Even with the challenges still being faced by Dr. Zamboni, he has managed to breathe new life into all of us.  It is amazing what this glimmer can do – and every step towards that light of hope is a step in the right direction.

For more information on CCSVI, the articles and videos from W5 would be a good place to start.

Here is an interview with someone that has undergone the ccsvi treatment.

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Posted in Happy News, innovation, medical | 1 Comment »


HOPE – Multiple Sclerosis and Doctor Zamboni

February 10th, 2010   by   Andrew

Special thanks goes out to Shannon for putting this piece together.

This past weekend, North America was introduced to Dr. Paolo Zamboni, a professor at the University of Ferrara in northern Italy.  In recent months, he has caused quite a stir in the Multiple Sclerosis (MS) community with the introduction of his findings among a small trial group of MS patients in Italy.

He has discovered that Chronic Cerebrospinal Venous Insufficiency (CCSVI), a narrowing of the veins in the neck and chest, is prevalent in MS patients.  CCSVI causes insufficient blood drainage from the brain which results in iron deposits in the brain and spinal cord.

The treatment, aptly named “the Liberation Treatment” involves a relatively minor procedure, a balloon angioplasty or the placement of a stent to open up the affected vein(s) to allow for proper blood flow.  And while he doesn’t claim that it is a cure for MS, it has been proven effective in the treatment of that small trial group.  And an effective treatment is much more than what is available now.

There are still some hurdles to overcome, some scepticism that comes with all groundbreaking ideas that go against popular belief – but overall, the reaction has been promising.  Two facilities in Canada (University of British Columbia and McMaster University) are embarking on trial studies, as are facilities south of the border.

This promising new treatment has given a new found sense of hope to those affected by MS – there are only so many times we can hear the words “We are getting closer to finding a cure.”  Even with the challenges still being faced by Dr. Zamboni, he has managed to breathe new life into all of us.  It is amazing what this glimmer can do – and every step towards that light of hope is a step in the right direction.

The news program W5 did a piece on this story in November, and their videos are an excellent start for learning more.

I’m also posting this in our new companion blog Happy News which will be specifically for good news of great people and deeds that we feel should be celebrated.

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