CCSVI Tracking Project Begins to Make Results Available

For the last several months I have been involved in a patient-led online tracking project for those of us who have had the liberation procedure.  Now they have enough participants (over 300, with 200 of these already treated) and number of months of results that they are able to make the information available to anyone who is interested:
www.ccsvi-tracking.com.  There are some fairly striking results, useful to those who are considering having the procedure done, or for those who have had it done, to compare their symptom changes to those of others.  However, in order to view graph results based upon user-defined criteria (for example: people over 40, only people with secondary progressive, only people with 6 months of results, etc) it looks like you need to be a member of the site.

Of course, this begs the question: why isn't the medical establishment and/or the medical research community doing this?

Also, if you have had the treatment and aren't entering your data, what are you waiting for?

Inventor of 'liberation' treatment for MS blasts skeptics in Alberta government

Zamboni makes his feelings known concerning the excuses (and misinformation) the Alberta government is using for a wait and see attitude to CCSVI treatment:  Zamboni Blasts Alberta Government

Komo News (Seattle) Stories about the Liberation Treatment

A well-done series about the CCSVI treatment by a Seattle TV station:

• Part 1 Video
• Part 1 Article
• Part 2 Video
• Part 2 Article

Raw interview with Dr. Andrews on MS

A very informative and balanced interview with an Interventional Radiologist in Seattle who has done some "liberation treatments" (though he doesn't like to call it that - he'd prefer it called venous angioplasty) and would like to do more of them: http://www.komonews.com/home/video/106178788.html?tab=video.  It may not provide much new information for those who have been following things closely, but is a good refresher and helps to provide perspective.  It is also good to hear someone say out loud that venous angioplasty is done every day and is FDA approved, so calling the treatment "experimental" or "risky" is a lie.

Wait for the blast in the last minute or so of the interview, where Dr. Andrews says that the Canadian federal government was absolutely STUPID for declaring that it was too risky to even start doing testing of CCSVI treatment.  Thanks to the MS Society of Canada, an inappropriately-chosen panel, a biased CIHR executive and incompetent federal health minister, the opportunity for Canadian CCSVI treatment is delayed indefinitely.

CCSVI Research: Iron Deposition and Chronic Fatigue

These three stories present research that should be of interest to MSers:

1. Two indicate that physical disability and brain atrophy in MS patients is highly correlated with iron deposition (perhaps caused by CCSVI?): Harvard professor of neurology Dr. Rohit Bakshi speaks on iron in the MS brain and Increased iron concentration and decreased volume of deep-grey matter are associated with increased disability in patients with multiple sclerosis
2. and the last one indicates that fixing venous problems seems to reduce fatigue symptoms: Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study.

Now I'm looking for the long-term research that indicates that we can hope for actual nerve and brain healing over the long term after CCSVI treatment... it would support and explain why I seem to be having additional incremental improvements in my symptoms as I approach the 6-month mark after my procedure.

MS patients claim vein therapy on taxes

You can certainly bet that I'll be claiming this... and fighting them in tax court if they don't accept the claim: CBC story.  I'm glad that I got a referral letter from my GP.

Last night I dreamt...

Last night I dreamed about my improved mobility... that I suddenly realized I was walking better, then I could jog, and then I could run... what a wonderful feeling it was!

Oh, and when I got up in the morning, my left leg was sore, almost as if I HAD been running! :-)

Shutting down treatment in Poland?

I've paraphrased the following that I received from a couple of different sources, and which was based on a TiMS posting (http://www.thisisms.com/ftopicp-139319.html):

A neurologist, Prof. Ryglew, and the director of the medical association of Poland have contacted the Polish ministry of health in an attempt to shut down CCSVI treatment in that country. If you feel that this is wrong, please write e-mails to ryglew@ipin.edu.pl and prezes@hipokrates.org and ask them to stop their attempts and state why you believe that access to CCSVI treatment is needed.  If you've already been treated, tell them of your experience.

Please send Rici (Ryszard Wiercinski, wiercin@gmail.com) a copy of your mail , so that he can collect them and use these messages when he meets with these people next week. Rici was the first person to get the CCSVI procedure done in Katowice (Poland)

I believe that this is a sincere request from someone who wishes to ensure that others have access to the same treatment he has had, but some on TiMS have questioned whether there is evidence to back up the allegation that these people are actually trying to stop the "liberation treatment".  However, just in case there is truly such a movement afoot, I have sent an e-mail that says that, though I hope I have been misinformed, I had heard that this was the case and that, as a person who has been treated for CCSVI in Poland, I believe that others should be allowed the same opportunity.

Follow-up in Halifax?

My friend Louis told me that when he was in Barrie the people there told him that a technician from Halifax is (or is soon going to be) getting training in CCSVI assessment and that we should soon be able to arrange follow-ups there, which will be a great thing for liberated Maritimers.

You can't always get what you want...

But if you try sometimes you might find
You get what you need

Well, I'm almost afraid to say it, but I think I'M EVER so slowly getting some more improvements... a little more strength, more energy, and my walking is a bit better... though that last one may be also due to the new exercises I've been doing to try to build up those muscles that have gotten weak as my walking deteriorated last winter.

Now if my left foot would only stop getting so darn cold at times that I can't fall asleep... *sigh*  I'm envious of those people who immediately noticed warmer feet after their liberation... I guess you can't have everything.

Saskatchewan to invest $5 million in CCSVI clinical trials

Saskatchewan will invest $5 million in "liberation" therapy clinical trials, see this CBC story.  Sort of makes me proud of being (originally) a prairie boy! :-)

Joan Beal's Assessment of research papers at ECTRIMS Conference

CCSVI was the subject of several papers at the conference of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) in Göteborg, Sweden this week.

Joan Beal (a champion for CCSVI research and treatment) has evaluated the various (and seemingly conflicting) research results reported there concerning CCSVI in her Facebook page.  It seems that the research papers arguing against CCSVI being a possible cause of MS were done by people who didn’t follow protocols and even used things like the valsalva maneuver to do their tests even though previous CCSVI research had shown that such results were meaningless.

It’s interesting that now the naysayers are no longer claiming CCSVI doesn’t exist and most seem to have grudgingly accepted that it is highly correlated with MS, but now they are trying to say that MS causes CCSVI… which is highly unbelievable given that CCSVI has been founds to usually be congenital.

Improvements may continue beyond 6 months?

Another Canadian "liberati" (dunkempt) reported on ThisIsMS.com that he was continuing to feel good and that:

We were told that they were seeing continuing improvements to the more "neurological" problems well after the 6-month mark as iron depletes and lesions close up.

I asked him who "they" were (perhaps the people in the clinic in Barrie?) and what evidence they had for it.  It would be great and hopeful news for those of us who have been "fixed" and have been assessed to continue to have normal blood flow.  Here is his answer:

Ted -

Yeah, me too; that is the critical thing, isn't it?

This was from an experienced vascular sonographer who had trained in Italy; my understanding was that this was an observation shared by those who work with liberati, not (yet, at least) the result of formal research. So, a very hopeful thing to hear - and it matches other "informal" comments I have heard from people who should know, but not a proven fact.

But there's probably not 150 people in the that 1-year+ group yet. And probably only, what, about 500 of us in the in the 6-month+ cohort? Still, I'm glad I didn't wait...

(I actually started with, "that's the critical thing, eh?" but then I remembered not everyone here is Canadian.)

-d

Should have waited for the new model?

It's just like when you buy a car or a computer or some other technology: not long afterward the new model comes along and you begin to get "buyer's regret".  Of course, there's no way that I would have wanted to wait for this new model of stent, especially since it is probably years from common use even if it does prove to work:

http://www.dailymail.co.uk/health/article-1319737/Soluble-stent-open-arteries-melt-away.html.  Thanks to Shelley for the link.

MS Society members 'break ranks' and try treatment

This is a real dilemma for some.  While they have put a lot of energy into volunteering for the MS Society and believe MSers still need the organization, these MSSC members are frustrated by its "Go slow!" (or go glacial) approach regarding CCSVI treatment and finally decided that there is too much evidence of symptom improvement to wait any longer: CTV news story and the video that covers the same story is here: http://www.ctv.ca/canadaam/.

Give Thanks... and Get Going

There are a lot of things to be grateful for this Thanksgiving and one of them, of course, is that I've been treated for CCSVI (by the most experienced team in the world) and all my blood seems to be flowing right (according to the clinic in Canada that is most capable of assessing me).  I've had some improvements (much more energy, a bit more strength and balance, a bit more dexterity)... so where do I go from here?

In my opinion, the best thing for me to do is to continue working hard with my physiotherapist and my exercise program in order to make the most I can of what I have.  Some of my muscles have atrophied quite a bit over the last few years as my mobility went downhill, and I'm going to work hard to try to build them up again.  Will it work?  Nobody knows, but it's highly unlikely that I'll improve much (if any) if I don't work at it.

That's true of anyone who is getting "liberated": having the treatment will, hopefully, stop the damage from proceeding, but we don't know if the neural damage will ever reverse itself and the treatment certainly will not, by itself, undo muscle atrophy.

Time to start the long, slow process of rehabilitation.

Who is selling snake oil?

It is too soon to tell how treatment of CCSVI will affect MS patients over the long term, but here is Joan Beal's rebuttal (on the CCSVI in MS Facebook site) to those who are characterizing CCSVI treatment a "just more snake oil":

We're seeing many neurologists and MS specialists responding to CCSVI research reflexively.  The common attack is
"This CCSVI angioplasty is no different than bee stings!  It is simply snake oil."
I think it's important for patients and caregivers to understand history when trying to respond to this claim.  You know me and history....(Rindfliesch, Putnam, Swank...)  I LOVE history.
http://www.facebook.com/note.php?note_id=234671112210

The term snake oil comes from the late 19th and early 20th century in the US, when you could actually purchase real snake oil to help your health.  Snake oil was claimed to have many healing properties and was sold by traveling salesmen, who put on shows with feverish sales pitches, hystercial claims, and miraculous healings which rivaled religious rivival meetings.  But these products didn't really do much for one's health, and soon the public caught on to the quackery and the term snake oil became associated with false medical claims.

When Dr. Zamboni discovered Chronic Cerebrospinal Venous Insufficiency (CCSVI)  he actually discovered a new disease.  Other researchers were noting how jugular vein valve malfunctions were related to transient global amnesia and hypoxia, but he found a connection to MS.   He came across this discovery quite by accident, while trying out new ultrasound equipment and scanning the neck of an MS patient--he noted venous reflux.  Something that was not normal, and had not been detected before.  He spent the next five years conducting blinded studies, writing research, bringing other doctors on board and learning all he could about this disease mechanism. He tried to address the blockages he found only in MS patients' veins with angioplasty.  It helped his patients.  And then he published his research, and I read it--along with patients, caretakers and doctors around the globe.

Angioplasty to relieve CCSVI is not a product.  It is not sold as a cure.  It is not quackery.  Angioplasty is used to relieve venous congestion and stenosis in many known diseases, including Budd-Chiari, heart disease, kidney disease and jugular insufficiency in dialysis patients.

Maybe we want to turn the question around to these doctors-- what is snake oil?   A product that makes unsubstantiated claims to heal, without a known mechanism.   I suggest that they themselves are the snake oil salesmen---telling their patients to take disease modifying drugs while they admit the cause of MS is STILL UNKNOWN.  Perhaps the CRABS are the snake oil?

In any event---over the years there have been procedures and treatments used to relieve MS symptoms and many have been touted as curative and called snake oil--they are not cures, BUT they have helped pwMS achieve symptom relief.  

What do bee stings, hyperbaric oxygen treatment and many other "alternative" treatments have in common?  They all address the VASCULAR SYSTEM.  Bee stings are vasodilators (via histamine release) and help blood travel throughout the body.  Venom from scorpions and other animals also does the same, and has been linked to relief in pwMS by many scientists.  Hyperbaric oxygen is easy to understand within the CCSVI paradigm...it is delivering much needed oxygen to a brain that is suffering from diffuse cerebral hypoxia.  Diet has long been touted as a relief for MS symptoms.  in fact Dr. Roy Swank completed many studies that were never deemed "acceptable" to the MS researchers.  But he showed long term remission in his MS patients, using diet and good nutrition alone.  I believe the connection to all of the above is found in the endothelium, the lining of our blood vessels.  You can check out my research on endothelial health at www.ccsvi.org under "helping myself."

So, when a doctor uses the snake oil phrase to describe Dr. Zamboni's research...ask he or she if they understand the irony of that comment.  

Who is selling the snake oil....really?