Cochrane review of CCSVI research

Folks, I have been asked to help in a Cochrane review of CCSVI research to date. Cochrane reviews are well respected and provide an opportunity to steer the medical community toward adopting new techniques quicker, if warranted, and to identify gaps in current research. I would like our CCSVI community to help by producing a bibliography of relevant research literature concerning CCSVI and its treatment. The people I'm working with probably have most of the important references we might supply, but this way we reduce the risks of gaps. Joan and Marie will help a lot, I hope, but I'm sure that there are others who can help, as well. Please send me a message and I'll e-mail you the draft objectives and initial bibliography. Info about Cochrane reviews can be found at www.Cochrane.org.

Still walking in London

Taking lots of public transport, but still a lot of walking to and from stations and between platforms... a good thing about that is that my left foot swelling is way down.

Lots of walking in London

Our daughter has been taking us around to see lots of the sights around London for the last few days... and giving my legs quite a workout! No blisters yet, though, so I guess I can't complain.

My results back from EMMC

I just received my official "Preliminary Report" results back from the Eastern Maine Medical Centre:

FINDINGS: On the right, the right internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein was 1.79 cm/squared in the supine position and 0.10 cm/squared in the upright position. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was no evidence of reflux in the vertebral vein, both in the supine and in the upright positions. However, there was evidence of reflux in the internal jugular vein in the upright position but no evidence of reflux in the supine position.


On the left, the left internal jugular vein valve was visualized and appeared to be normal. The cross-sectional area of the internal jugular vein valve at the level of the mid-thyroid was 1.02 cm/squared in the supine position and 1.11 cm/squared in the upright positions. Flow was present in the internal jugular vein, both in the supine and in the upright positions. There was evidence of reflux in the internal jugular vein in the supine and in the upright-positions; however, the vertebral vein was competent both in the supine and in the upright positions.


IMPRESSION:
1. On the right, one out of four criteria met for chronic cerebral spinal venous insufficiency.
2. On the left, two out of four criteria met for chronic cerebral spinal venous insufficiency.

So, I still have some evidence of CCSVI... and I'm wondering what that means and what I should do now. Looks like my best source of info (for now) still might be TiMS, though they are supposed to send the images to Barrie, so I might eventually get some answers from Dr. McDonald, as well.

Off to England on Friday

We travel to London on Friday to visit my daughter for a week. She has lots of activities planned for us, so I hope I can keep up, though, I am not as worried about it as I would have been if I hadn't been "liberated".  This will definitely NOT be my last overseas trip.

MS Symptom Improvement Observed After CCSVI Treatment

All, right, we're starting to get results from some of the bigger clinical studies: http://bit.ly/qNPlHP.  While it isn't clear from this medical news report such important things as what the prevalence of stenosis was (i.e., from what size of group were these 125 people chosen), I hope the actual article makes such things clearer.

Progress From MS Societies’ Initial Studies on CCSVI-MS

After reading these summaries, I'm feeling more confident that they are not just shams intended to delay the beginning of CCSVI treatment in Canada: http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=5261. We need to keep vigilant (the MS societies have not been completely honest previously), but these research projects could be very helpful to MSers... I was skeptical, but would be SO happy to be proven wrong.

2nd Canadian dies after MS surgery

The CBC story here: http://bit.ly/nP4tBX.

A second death after 13,000 or 14,000 or 15,000 treatments?  My sincere condolences to the family.  However, thousands of people have been helped by this treatment.  They have all decided to take the risk in hopes of a better quality of life.  If I had to make the decision again, or had to advise a family member in my same situation, my words would be: "Do it!"

CIHR Scientific Expert Working Group Meeting

Here is a summary of the meeting that led the Feds to OK phase 1 and 2 clinical trials on the value and safety of CCSVI treatment of MS patients: http://www.cihr-irsc.gc.ca/e/43952.html.  I have many questions about this, but the first of them is this: Why doesn't the "expert panel" still not contain any experts on CCSVI?

No 'magic bullet' for MS

There was an opinion piece in today's Telegraph Journal (http://telegraphjournal.canadaeast.com/opinion/article/1420576) from a Dr. Colohan, a self-described "pain specialist with an interest in the balanced public reporting of scientific research". In the article he gives the impression that he feels that the CCSVI controversy is much ado about nothing, that there is no science behind it.  In fact there were quite a few errors and misleading statements in the opinion piece, too many for me to respond to given the paper's 1000 character limit for comments.  What I did say was:

I am also interested in the balanced public reporting of scientific research for both professional and personal reasons. Therefore, I would like to point out incorrect and/or misleading statements in Dr. Colohan's opinion piece. Firstly, he states that Zamboni's initial findings were not confirmed in 6 research publications, while neglecting to say these were small studies while much larger studies (such as the one of over 500 people in Buffalo, for example) found very high correlations between CCSVI and MS. Secondly, Dr. Colohan states that 30% of MSers treated for CCSVI have some improvement, making it the same as placebo effect. Where does the 30% come from? The only information available is from self-reported results online and from clinics, all of which report 66 to 80% of treated people had significant improvement. Can these be trusted as accurate? No, but I trust them more than numbers that apparently came from thin air. There's more, but I'm at my 1000 character limit.

Other things I could have mentioned:

1. There are many decades of science behind the theory of vascular theory of MS or MS symptom causation, but these were ignored by much of the medical community who had bought into the autoimmune theory, instead.
2. Many of the explanations for how CCSVI could impact (or even be the initial cause of MS) DO make good common and scientific sense.  Certainly the idea that CCSVI exists and is significantly highly correlated with MS is pretty much gaining wide acceptance by medical researchers, so for the doctor to say that "CCSVI and 'liberation therapy,' in my studied opinion, are concepts which make very little scientific sense" makes you wonder both about his sense and how much he studied the subject.
3. The scientific method is being used by (most of) those who are researching the issue, I would hope, but for a lot of medical researchers this is all new: good clear definitions of what constitutes CCSVI and how to properly diagnose it are still being debated.  Some of the negative research results came from researchers who were not vascular specialists, didn't know what to look for... and still got published in an astounding six weeks in a Neurology journal... hmmmmm.
4. There are several places he says things like "neurologists report that patients who have had this treatment and report subjective symptom improvement (they feel better in some manner) do not demonstrate improvement in their neurological function on physical examination", yet there are no indications who these neurologists are, where this was reported, the scientific basis for these reports, etc.  For some one advocating "balanced, scientific reporting", he certainly doesn't appear to want those rules himself.

New information concerning Albany

Here's an update on my earlier (September) posting concerning the clinic in Albany, New York (posted by lovelyrita to My MS Journey at July 1, 2011 11:18 AM):

You probably know this by now, but there are 2 doctors at this facility performing the CCSVI procedure; Dr. Gary Siskin and Dr. Ken Mandato. Also the address above is incorrect. The procedures are done at:
Capital Region Health Park
711 Troy-Schenectady Road
Latham, New York 12110

I had the procedure in May 2010 with Dr. Mandato and it is a terrific place. Wonderful, caring staff and I had a great result. No stents needed and no re-stenosis over a year later :-) My total cost was $5000.00 but I have heard that the prices have increased since then.