Letter to the Health Minister: Your actions are not acceptable!

A good letter: http://www.facebook.com/#!/note.php?note_id=199810286715615&id=703730551.  The Liberal party has stepped up to the plate, what about the Conservatives?  Their responsible has truly been unacceptable.

Inadequate care in Canada after liberation therapy

When will our medical system wake up?  Globe and Mail article.

Doctor weighs in on so-called Liberation Therapy

Here is an interview with Dr. Bill Code about his liberation treatment and results: CBC interview.

It's tax time: Remember to claim your CCSVI treatment

As Chris Alkenbrack says "Keep your receipts from trips for CCSVI treatment and claim it on your taxes"... see the news story from CBC News: http://www.youtube.com/watch?v=89xgH9JEu0c

Please verify your CCSVI testing facility

This is a thread of interest to people like me who are concerned about the possibility that there are some clinics advertising CCSVI testing services conducted by technicians who don't know what they are doing: http://www.thisisms.com/ftopict-15717.html.  It make me shudder to think that some MSers are being given wrong diagnoses because of technicians who are not knowledgeable.  But the question is, who is "certifying" sonographers with respect to CCSVI?

University at Buffalo Launches Clinical Trial Of New MS Treatment

Interesting: http://www.buffalo.edu/news/11500

Post-liberation CCSVI testing in Bangor, Maine

Here's an opportunity for people (perhaps especially for Atlantic Canadians) who have been liberated and need follow-up testing of their veins:

From: Willis, Chris [mailto:cwillis@emh.org]
Sent: February 23, 2011 10:43 AM
Subject: CCVI testing

Good morning Mr. Robak.  I just listened to your message that was left on my voice mail.  I would like to thank you for inquiring about our services here at Eastern Maine Medical Center.  The vascular laboratory has started testing patients who have undergone jugular vein angioplasty through the Rhode Island Vascular Institute.  Our protocol is to look for continued patency of these jugular veins.  Our protocol was designed to meet the needs of Rhode Island Vascular Institute.  We also follow the Zamboni protocol as well.  I would like to emphasize that we are not (currently) performing this exam to screen for CCVI.  We are however, scanning patients who have documented CCVI and who have under gone jugular vein angioplasty.

Just to give you a brief history:  I am currently the only tech that is performing this procedure in this department.  I am a registered vascular technologist who has been in this field for approximately 19 years.  I have literally scanned thousands of jugular veins in my career. 

The protocol that we are performing for CCVI patients who have undergone jugular vein angioplasty is quite extensive.  We scan the patient's jugular vein with the patient in the supine position.  We evaluate the jugular vein via gray scale imaging in transverse and sagittal views looking for areas of narrowing and/or abnormalities. We measure the diameter of the jugular vein in 3 different locations. We identify the jugular valve and check for reflux.  We evaluate the flow in the jugular vein with color duplex as well as spectral waveform analysis. We assess phasicity and direction of blood flow.  We also evaluate the vertebral veins and their blood flow in the supine position.  We always look at both jugular veins and both vertebral veins.  We repeat the entire process stated above with the patient sitting in an upright position.  Our exams are read by only one dedicated vascular physician who has researched normal and abnormal findings. 

The protocol and what to take for pictures is a new process for us however the normal and abnormal anatomy and hemodynamics of blood flow of the jugular/vertebral veins is not.  I have researched several articles and have had several conversations with  Rhode Island Vascular Institute on what to look for.  I feel very confident on my skill level to perform an accurate exam.  I am very excited about this new service we are offering!

I hope this e-mail answers your questions.  Please feel free to e-mail me with any other questions.

Thanks

Chris Willis RVT

Coordinator

Vascular Laboratory

Eastern Maine Medical Center

Bangor, Maine 04401

Phone:  (207) 973-7471

Fax:  (207) 973-7450

Then I asked him: "One question I thought of (and my readers probably will be thinking the same): when you talk of the vertebral veins, you presumably aren't talking about the azygous vein so, without taking too much of your time, could you explain which vertebral veins and whether there is any checking of the azygous.  Or do the vertebrals lead to the azygous and are, therefore, a proxy for finding problems in the azygous?  Thanks in advance for your explanation."

 

And here was Chris' reply:

When a patient is supine, the jugular vein performs the majority of the cerebral venous drainage.  When a patient is sitting upright the vertebral veins performs the majority of the cerebral venous draining.  Each vein has certain size characteristics and flow characteristics when supine and sitting upright.  If there is an occlusion or tight stenosis of a jugular vein the characteristics change and the vertebral vein can compensate for the lack of venous drainage from the jugular vein and vice versa.  In other words we evaluate the cervical vertebral veins more so as a proxy for jugular vein issues. The Azygous vein I believe is not easily identified via duplex ultrasound but is best evaluated by venogram.  Not sure if this answered your questions.

Therefore, this test doesn't really check for restenosis of the azygous, but then the azygous is not as likely to have restenosis, from what I have heard.

I'm looking forward to getting feedback from people who use this service.


In a later response, Amy from Ontario told me:

Chris has done a good job of answering your questions, Ted.  It sounds to me like the azygos isn’t being addressed by the Doppler, and I don’t think it is being addressed by any of the Dopplers.  When I went to Albany, I asked Dr. Mandato if my azygos vein had been addressed. He said there was no indication of a flow problem there. I’m now hearing from Dr. Tariq Sinan, Dr. Arata and Dr. Hewett, that it’s not good enough to just do a venogram of the azygos, but the azygos must be ballooned in order to see problems properly.  Dr. Hewett says if you have mobility, bowel and bladder issues, your azygos must be ballooned.  It looks like this was missed in my case. Thanks for your recount of the conversation, Ted. Great details…and good news for Atlantic Canadians.

Now that makes me wonder whether I may still have some problems with the azygous (or azygos) since in Poland I'm pretty sure they only did a venogram, no ballooning.  I sure hope we start to get some expertise in Canada soon!

Response to hpebbles2

Just so it doesn't get lost in the comments, this is what a visitor to this site said:

I had mine done on 16 jan in egypt. I have had my ms symptoms 4 and half years - bladder urgency and frequency, optic neuritis for 6 months in 2007, and only able to walk 10 min. Think this is because of balance cos when I'm walking with a supermarket trolley I can go way further.
Anyway I am one of those who hasn't had any improvement yet. I went knowing that about 1/3 people experience improvement, hoping I would be in this group, but sadly I wasn't. Anyway I've given it a try. I believe that MS isn't 1 condition anyway. I am sure there are many causes.

I just wanted to say that one month is WAY too soon to be able to tell whether you are going to have a positive impact from being liberated.  My improvements continue to come nine months after liberation, but very slowly, and some people had no change for the first few months.  This is true of people like my friend Louis that I mentioned in an earlier posting. And for me, even NO change, if it stayed that way for a long time, would have been considered wonderful.

Oh, and by the way, it`s 2/3 to 3/4 that show improvement (see www.ccsvi-tracking.com), but perhaps only 1/3 that have quick and dramatic changes.

Lots of good links on CCSVI

If you have some time and haven't seen these before, here are good links that will increase your understanding of CCSVI and its implications, and/or of the reasons why it is causing some to question the stance of some health care professionals concerning this issue:

1. Neurologists' questions about CCSVI and Dr. Zamboni's answers - The Informed Scientists video.
2. Announcement concerning Dr. Bill Code's appearance on CBC's The National tonight - Dr. Bill Code on the National News.
3. Dr. Haacke's presentation in Ottawa - Haacke presentation.
4. Report on CCSVI by the Canadian Agency for Drugs and Technologies in Health - CADTH report.

Louis sees improvements

After months of seeing few changes in his symptoms since liberation, my friend Louis has started to see improvements in his walking and in his balance (as objectively measured by his physiotherapist)... way to go, Louis!

Strange how people's improvements are so variable.  Most see improvements in fatigue symptoms fairly soon, but when it comes to other symptoms (like walking, strength) the changes are all over the map, time-wise: some happen within days, but others don't see anything for months.  There is so much we don't understand!

A Mother and Son Journey ~ Step 1

Worth reading and thinking about: Sandra's story.

Oops, now it appears that the story has been taken off-line... too bad.

CCSVI.org Interview of Zamboni and Burks

Good interview, and look for Zamboni's description of a previously unpublished result of his original research - the immediate improvement in 18 RRMS patients who were in the middle of relapses when they were `liberated`: http://www.ccsvi.org/.  By the way, if the video doesn`t start with your browser, try another browser.  I had to go through three browsers (Firefox, Chrome and EI) before I found one that worked (EI).

CCSVI Testing (Doppler ultrasound) for Maritimers

My friend Ann, who has been liberated but is not seeing benefits, just sent me this message:

Hi Ted,   I didn't know if you had heard about this.   Eastern Maine Medical Center (EMMC) is taking bookings for Doppler ultrasounds.   Bangor Maine.   I have heard it is $225.00 and follows Zamboni Protocol.   Call Sandy  (207)973-7471 for appt. The guy I know is going Feb 25 for his appt.    I will probably look into this as a check...

Ann  

I would appreciate hearing if these people have been trained to recognize CCSVI by someone knowledgeable, or did they just learn it "out of a book"?

U.S. specialists in competition for Canadian MS patients

I guess that there was a lot of good information provided to federal MPs who attended the special information session for them.  Maybe we will finally get some action and our own medical system will provide us with the testing and treatment we need: Canada.com story.

CCSVI and the medical hierarchy

Here's some evidence that explains why the autoimmune theory "won" over the vascular theory as the cause of MS in the 1980s: much of it may have been as much due to the hierarchies in the medical community as due to scientific evidence.  Read the original paper, and then read Joan Beal's summary.  Again, remember that this happened over twenty years ago, so the CCSVI controversy (though it wasn't called CCSVI at the time) is not so new after all.

CCSVI Treatment Study in Newfoundland

Here is more information about the study that N&L will be conducting on people who have been liberated: Newfoundland study.

CCSVI Evolving---thoughts from Marie

More useful information for people who are trying to understand CCSVI testing problems and implications: thoughts from Marie.

PNF training exercises

My friend Dianne has been getting great results from doing PNF (proprioceptive neuromuscular facilitation) exercises since her liberation.  A local physiotherapist is very excited about the potential for this exercise regime for MSers - he apparently often uses it to rehabilitate stroke patients.  Have other MSers (liberated or unliberated) tried PNF?  What were the results?

Little things that add up

Although I haven't had any big improvements in a long time, I'm realizing that a lot of little things are v-e-r-y g-r-a-d-u-a-l-l-y getting better:

1. More and more often I take quite a few steps before my drop-foot kicks in.
2. My energy level seems to have improved a bit again.
3. I notice a little more strength on my left side when I work out.

Something that continues is the mild spasticity I get in my legs when I get up after sitting for a while or have been kneeling down bent over something.  But I'm beginning to wonder if that symptom may be related to my osteoarthritis... I'm going to be talking to my GP about it in a couple of weeks because I'd hate to be putting it down to MS if I really should be treating it as an osteoarthritis symptom.

A New Disease Model for MS

Another thought-provoking article from Ashton Embry: http://www.thisisms.com/ftopict-15511.html

No evidence of CCSVI at multiple sclerosis onset

This study seems to show that there is low incidence of CCSVI in people with clinically isolated syndrome (CIS), which is suggestive of the onset of MS: PubMed abstract.  While this is only an abstract and it is not clear what protocols were followed, it does raise doubts about CCSVI as an initial cause of MS.  There is a TiMS discussion thread about this study and its possible implications: TiMS discussion.

Liberals Blast Tories Over MS Treatment

Good for the Liberals: Global story.  Thanks to Ujjal Dosanjh and Kirsty Duncan for keeping up the pressure.

What the MS Society of Canada Hides About their Finances

Another sad story: so much money produced by so many great volunteers, so little spent effectively.  Here's a long investigative piece from Ashton Embry: What the MS Society of Canada Does Not Want You to Know About their Finances

Correcting misinformation about stents

This is interesting: Venous Stenting and CCSVI ~ Dr. Hewett presentation January 29, 2011 (Seattle)

More and more and more...

I keep hearing about and meeting more and more Canadians who have been "liberated".  You'd think that our federal government and/or the MS Society would be tracking these numbers and the progress of the people who have been treated.  Of course, that presupposes that they actually give a darn about MSers.