Sunday, September 25, 2011

A cure for MS? These claims are somewhat premature

While this is very interesting and might lead to something worthwhile sometime in the future, I would say it's WAY to early to start making claims about a cure or even treatment: Toronto Sun story.  I'll have to look around to see if someone has done an analysis of the research to see if there is at least working theory as to how the lack of these neurosteroids could cause MS pathology.  The great thing about the CCSVI hypothesis is that the explanation of how CCSVI could initiate and/or worsen MS made sense right from the get-go... so far I don't see anything like that in the description of this research.

If you're interested you can follow the discussion (by knowledgeable lay people) about the research implications here: TiMS discussion.

Friday, September 23, 2011

Monday, September 19, 2011

Notice from Tim Donovan

Here is an announcement about a CCSVI event in Saint John:
Dr. Bill Code is a Canadian doctor (anesthesiologist) who has MS and has been treated with venous angioplasty, and is speaking across Canada... Dr. Code and Tim Donovan will be doing a CCSVI seminar in Saint John N.B. on Saturday Oct 22 from 1 to 4 pm at the Lancaster Legion, 714 Wilson St. . We only have room for 300 so make your plans and come to hear Dr. Code. No charge. Donations for expenses will be accepted.

Thursday, September 15, 2011

Am I restenosing?

Over the last few weeks I've had a few days where I felt tired during the day and had a nap/laydown, even twice one of those days.  Now, I know that's a long way off from what it was like before liberation when I had a deep, devastating fatigue that required me to take at least a couple of naps every day, sometimes as many as four in a day.  However, for a while yesterday I also had a return (for the first time in a year) of that feeling of walking on Jupiter (like huge gravity pulling down on all my limbs), and with the EMMC imaging a few months ago telling me that I still have some indications of CCSVI, I'm beginning to wonder if I need to be retreated.  After 16 months of living a much better quality of life, I don't want to let things go too far downhill again without doing something about it.

If it does appear that I am restenosing, where should I go to be retested and, if appropriate, treated?  Rhode Island, because they're allied with the facility in Bangor?  Somewhere else on the east coast? If anyone out there has advice or can tell me of their experiences, I'd appreciate hearing about it.

Wednesday, September 14, 2011

More about Fluid Dynamics

Dr. Beggs describes the physics and fluid dynamics of blood flow, and how this helps to explain some of the symptoms and progress of MS: Youtube lecture video.  It takes some time (34 minutes), but explains why some of the those papers pooh-poohing possible impacts of CCSVI on MS patients are by people who don't understand the physics of fluid dynamics.

Tuesday, September 13, 2011

New Imaging Technique Evaluates Nerve Damage

Interesting: Science Daily story.  And some of this research was done at Laval University.

Observational Study in Canada

Dr. Sandy McDonald has received approval to do observational studies of MS patients: “An observational study using doppler duplex ultrasound quantifying the occurrence of jugular vein re-stenosis and complications following angioplasty to treat chronic cerebral spinal venous insufficiency (CCSVI)".  His statement can be found at

Wednesday, September 7, 2011

Does CCSVI contribute to other neurological diseases?

Here's an interesting hypothesis, along the lines of those that have been posted in discussion boards regarding possible relationships between CCSVI and neurological diseases, that hypothesizes about a possible way that CCSVI could contribute to ALS:

The risks of CCSVI treatment: where’s the beef?

Here's another good article by Anne Kingston, this time in Macleans, that puts into perspective the "study" that eight Calgary neurologists published that appears to be an exercise in fear-mongering rather than in advancing our knowledge of CCSVI and the impacts its treatment may have: Macleans article.

Monday, September 5, 2011

CCSVI Criteria

Here's a message from Dianne's husband regarding criteria for diagnosing CCSVI that I don't think I've posted previously:

Ted, this is the gist of an email that we received from Chris Willis, RVT, Coordinator of the Vascular Laboratory at the Eastern Maine Medical Center in Bangor, Maine.  He is actually the technician that performed the color Doppler ultrasound on Dianne's IJV's last month.  He also did yours if I am correct.  We asked him to provide the criteria that EMMC use for evaluating the results of the test as they related to CCSVI.  Here is his note:
There are actually 5 criteria for CCSVI:
The 1st criteria is:  Gray scale abnormalities of the proximal internal jugular veins.
The 2nd criteria is:  Postural changes in the cross sectional area of the internal jugular vein.
The 3rd criteria is:  Absence of flow in the internal jugular veins.
The 4th criteria is:  Reflux in the internal jugular and/or vertebral veins
The 5th criteria is:  Asymmetric flow in the deep cerebral veins.  This is done via Transcranial Doppler which we do not do here.
We are not evaluating for CCSVI but checking for patency (definition = The condition of being open, expanded, or unobstructed) of the internal jugular veins.  We just follow the CCSVI protocol.
I believe you need to be positive for 2 or more criteria to be considered to have CCSVI.

Friday, September 2, 2011

One-year update from Dianne

Here is an update sent me by my liberated friend Dianne:
Hi Ted, it has been one year for me since CCSVI angioplasty (aka. MS Liberation Treatment) in Sophia, Bulgaria.  I have been fortunate in that the gains that I made post-angioplasty have only improved over time.  The relief that I got with respect to the vascular issues of MS such as bladder control, fatigue, numbness, choking and swallowing, brain fog, balance, heat tolerance, and all the other nasty symptoms of MS has remained and I consider myself (almost) a normal person in those regards.  I do not take any MS medication but do take vitamins and try to eat as much healthy food as possible.  The vascular issues corrected with the CCSVI angioplasty worked for me and have remained.  If you remember I had 70% blockage left IJV (2 stenosis), 70% right IJV (1 stenosis), and 70% blockage in the Azygos (with 2 stenosis).  I did not have any stents.  I had no complications of any kind resulting from the procedure.
We went to Dr. Sandy MacDonald’s Clinic in Barrie in November for a follow-up Doppler after 3 months.  They saw normal blood flow in both the IJV’s and the VV’s, with normal collapse of the VV’s inferring normalcy in the Azygos.  Great news!  This July we went to the Eastern Maine Vascular Center in Bangor for a one year Doppler follow-up.  Again my veins were normal with full flow and no reflux. More great news!!  Intuitively, we knew that before we went by the way I was feeling….normal!
Now, the neurological issues that I have with mobility have been a struggle.  I am still using the hiking poles outside but the dependency is slightly decreasing as time goes on.  I just feel more comfortable walking with them by my side.  Walking is still a chore if I am out for a while and I get stiff if I stand in one place too long.  I went for physio over the winter primarily for strengthening of my legs and that went well.  Walking normally definitely is my biggest challenge.  
I am doing PNF training (proprioceptive neuromuscular facilitation) for both my left hand and right foot.  This is under the direction of a neuro-physiotherapist who I still continue to see.  This is a type of physical therapy procedure mostly used by stroke patients to re-train their brain.  (  Since I know that the MS lesions in my brain are still there, I am working at re-training my brain to bypass these problem areas.  I know that this is working as the little finger on my left hand has now re-joined the others on that problematic hand.  Before it would wander away from the rest and not participate in the functions of that hand.  My left hand is now normal!  My right foot still needs to improve.  I am not certain exactly where it is without looking down.  That’s the proprioceptive part that I am working on.  It looks, feels and works (almost) normally but again where it is in relation to my other foot is still not normal (yet).
I have an adult tricycle that I drive around the neighbourhood (still haven’t gone on the city trails yet) and do just fine.  I generally go about 1 to 1½ kilometre several times a week.  I have been reading again using an iPad2 and really enjoy that.  (I had stopped reading years ago as wrestling with a book was just too much.)
I have a new doctor of physical medicine (physiatrist) after firing the last one.  He is very supportive and essentially has told me to continue the rehab regime that I am on to continue to improve.  I have not seen (or even heard from) my neurologist since she found out that I went for CCSVI angioplasty (even after repeated phone calls and referrals from my family doctor).  My family doctor is very supportive.
To sum this all up, I feel dramatically improved since Bulgaria.  I consider myself to be (almost) normal in many ways.  Mobility is my issue and I am working every day to make myself stronger, more steady on my feet, and confident especially outdoors on grass and other uneven ground.  I feel good and my life has been given back to me.  I pray that this all stays and that I can participate in my grandchildren’s lives (the first one is on the way!) like a normal Grammy can!
Best regards and good health to all, Dianne.