Tuesday, March 29, 2011

How doctors think (or don’t think) about CCSVI

This is a few months old, but I don't think I've seen it before, so perhaps some others haven't either: CTV article by Dr. Brandes.

"Government must approve liberation therapy" says MSer

Another story about a remarkable recovery after liberation: http://stcroixcourier.ca/fullnews.php?view=518.

Tax Deduction for Liberation Treatment

Here is some advice (from the MS Society of Canada!) about getting a tax deduction for the CCSVI treatment: http://mssociety.ca/en/information/taxTips_medicalcredoutsidecan.htm. I have a referral from my GP. Theoretically you shouldn't need that (according top the info in those guidelines), but be careful to have all the info needed by CRA so there is less chance they'll put up a fight about it.  It might be an idea to get a post-procedure letter from a doctor saying why you needed to try the procedure, in case CRA balks.

Sunday, March 27, 2011

A song for the times...

Since I'm just back from band practice, I've got music on my mind. How about this for the start of a new song (with apologies to Gordie Lightfoot):

The Great CCSVI Controversy
There was a time in this great land when the veins they did not run,
And the great, all-knowing MS Society stood alone against the sun...

Any budding songwriters want to make a try at adding to that?

MS Society Member says: "We are sorry"

Darrel Gregory, a member of the Alberta chapter of the MSSC who apologizes for the Society's reaction to the CCSVI controversy, seems sincere in what he says (CTV Edmonton story).  But is he truly speaking for the MS Society of Canada?  If so, they apparently still don't have all of their choir singing from the same hymnbook, because much of the information coming from the MSSC headquarters still seems to be very negative towards CCSVI, and if the organization is pressuring governments to start clinical trials, that's news to me.

Friday, March 25, 2011

Feds Announce New Monitoring System for Multiple Sclerosis

Oh, whooppee: http://www.phac-aspc.gc.ca/media/nr-rp/2011/2011_0323-eng.php.  But why am I concerned that this monitoring system is going to be set up in collaboration with the MS Society of Canada and the Canadian Network of MS Clinics?  Is it because I'm not convinced that the MS Society wants to monitor people after CCSVI treatment and when you click on the Contact Us button on the Canadian Network of MS Clinics website you get Dr. "CCSVI is a hoax" Freedman contact information? A monitoring system could be great, but not if it's controlled by groups that don't appear to take your best interests to heart.

Oh, and though there are many other reasons (policies, ethics, democracy deficit, etc), this is another reason for me to vote ABC - anyone but conservatives (or the "Harper regime").

Monday, March 21, 2011

Out of the fog

A common enough story to MSers following progress on CCSVI treatment: London Free Press story today, but it again shows that our governments' responses are WAY too slow... and where is the MS Society when you need them?

Saturday, March 19, 2011

Great Findings at the ISNVD Conference

Now a great amount of good research that supports Zamboni's theory is being presented at an important international conference: http://www.scribd.com/doc/51066155/CCSVI-MacLeans-Magazine-March-18-2011.  The evidence keeps piling up!

Friday, March 18, 2011

Major gift to the New Hope for MS tour

This just gets better and better: Announcement in Facebook. First an SUV, now a travel trailer... Great work, Tim!  And there are many more announcements to come!  And thanks to all the caring donors.

Wednesday, March 16, 2011

New Hope for Multiple Sclerosis

Keeping watching the site http://www.newhopeforms.ca/... we are going to have lots of good news to share about sponsorships for this tour soon.  Tim is doing a great job!  This Canada-wide tour is sure to raise awareness about CCSVI and make it a lot harder to keep denying Canadian MSers access to a treatment that is showing great results for reducing MS symptoms... and maybe the progression of the disease.

On the CCSVI Tracking Website

A few interesting stats, in case you haven't been checking www.ccsvi-tracking.com lately or aren't sure how to get the most out of it:
  1. There are results from 427 patients and 518 treatments on the graphs right now (ie, some patients have had more than one liberation treatment).
  2. Of the patients reporting their results, 135 are Canadians.  There is only one Canadian reporting 10 months or more of results: that's me.
  3. When you look at the time-line graphs for all patients, they are generally reporting continual improvement in most major symptoms except for the month 10 cohort, where there seems to be a spike in the symptoms.
  4. For the Canadians, the average results show continuous improvements for all months except for a slight spike in the symptoms of the 8 month cohort.

Tuesday, March 15, 2011

Official Press Release from ISNVD Annual Meeting

This is very interesting reading: Press Release on Facebook. It's worth spending a few minutes reading it... great to think how far things have progressed in only one year!

Friday, March 11, 2011

Watch CTV Tonight

For folks in the Maritimes, you might want to watch CTV news tonight as there will be an interview with Tim Donovan who is organizing a "New Hope for Multiple Sclerosis" cross-Canada tour to raise awareness about CCSVI and it's treatment in Canada - or, rather, the lack of it.  A large group of volunteers (including me) are helping Tim with this.  Tim is getting lots of great sponsorships and we hope his tour will start in St. Johns in early May.  The website is still a work in progress, but I recommend that all Canadians interested in CCSVI check it out on a regular basis and, if appropriate, let the organizers know that you are willing to help: http://newhopeforms.ca/.

Monday, March 7, 2011

Liberated MSer gets follow-up in Maine

Here is a report from someone who talked to John, a New Brunswicker who had been liberated in Rhode Island and who was getting his follow-up done at EMMC in Bangor, Maine:
He went 2 weeks ago to the Maine Medical Center. In the beginning, John's left jugular was blocked 55%..now it is still clear; the right jugular was blocked 80%..now has restenosed to 85%. They did the color Doppler Ultrasound. They also picked up a growth in the thyroid..left side. He has an appointment with doctor to see what needs to be done with this. John had his procedure done in Rhode lsland on Nov 18-10. He is feeling quite a lot better, but feels that probably some symptoms he is still feeling could be caused by this growth in the thyroid. John highly recommends the Maine clinic, he said that Sandy-who provides information and Chris-who is the technician, are both very informative and pleasant people to be working with you.
Sounds like this may be a worthwhile place for Atlantic Canadians to go for follow-up.

Thursday, March 3, 2011

Wednesday, March 2, 2011

A neurologist wrote to his patient

In the TiMS discussion I mentioned in my last posting, Dr. Sclafani mentions that a Canadian neurologist wrote to his patients that were contemplating liberation:
"Since death is also a risk, then I ask those individuals to strongly consider advising their family of an advanced directive for an autopsy. We should maximize every learning opportunity"
and a Canadian TiMSer named Blaze responded with:
Outrageous! Statements like that and the way some Canadian neurologists are speaking to their patients makes me ashamed to call myself Canadian. But, I think Dr. Hubbard also said something about being embarrassed to call himself a neurologist right now. So, maybe it's the profession and not the country--except that neurologists are wielding too much power on this issue in Canada.
I feel the same way as Blaze, except I would have used some profanity to express my opinion about a neurologist like that!

Tuesday, March 1, 2011

Ensuring The Best Possible Care For MS Patients

An interesting initiative from the Ontario government: Ontario press release.  And here's a link to a TiMS discussion where people are expressing worries that this will just be another sham "expert panel": http://www.thisisms.com/ftopict-15751.html.  There is also information about the panel and lots of angry words on the CCSVI Facebook discussion about the topic: Facebook discussion about Ontario press release.


Hmmm... looks like Zamboni is applying for a patent: http://www.wipo.int/pctdb/en/wo.jsp?WO=2009107152