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.