Monday, December 14, 2009

PROMISING TO FRUSTRATING!!

There are some strange events happening in the MS world with regards to CCSVI, it seems that somehow the brakes have been slammed on! Something that started off with so much promise and excitement has now ground to a halt and there are certain elements of this deliberate slow down that appear to be very suspicious and disappointing. To begin with I decided to try a different number to the U of A radiology department since the previous contact number has been ignored. I found out that there is no study in the works and the information that Dr. Emery was starting a study in concert with Dr. Haacke was false from the beginning. When I contacted his office back in November they did seem kind of clued out but took my name and number so they could call me when the study was figured out. Maybe it was a mistake to include Emery in the list of participants on ms-mri.com but either way the huge amount of interest that it has generated might make you think they’d set up the study anyway…not going to happen right now.

Next I found out that Dr. Zamboni is now prevented from performing the Liberation procedure in Italy. A new study will be started but in the mean time there is a lot of pressure being put on Italian authorities and government by many MS groups to allow Zamboni to continue treating MS patients. Bottom line is that Zamboni is not currently performing the procedure. This is also a little strange because he just released his study and I didn’t see anything in it that would warrant this action????but it’s suspected to be some sort of bureaucratic problem.

Coincidentally Dr. Dake stopped performing the procedure shortly after Zamboni was stopped. All of a sudden big news was coming out that one person had died from the procedure and another very serious event had occurred. Well as it turns out the death was not as a result of the procedure but this news wasn’t nearly as important and seems to get little attention. The serious event that occurred was a stent slipping from the vein and moving into the artery. I believe the patient required open heart surgery to rectify the problem but he is recovering well. The way Stanford halted the procedure so abruptly was surprising, there were people from around the U.S. that had flown in for the treatment only to find out their procedure had been cancelled. There are a lot of angry people over this but no more procedures will be done. This could very well be a legal issue for Stanford and perhaps the reason for their abrupt stoppage but one never really knows. Dr. Dake will be starting a clinical trial in January so hopefully those people whose procedure was so unexpectedly cancelled will be first in line for his trial.

I had my MRI on Wednesday and stopped into the MS clinic to see if I could get their perspective on things. I spoke with a head nurse and as I suspected her response was cautiously negative. Of course the death and serious event had a large impact, that’s where I learned of the death. So needless to say there aren’t any studies planned around CCSVI and nothing on the horizon. Before my MRI I spoke with the technician and he told me that they can do an MRV but as of yet they don’t have a specific protocol to follow. Hopefully Dr. Haacke’s efforts will be able to change this shortly! I was also told that False Creek Surgical can do the procedure and possibly the Doppler ultrasound but at the time their head doctor hadn’t confirmed this. People have to be cautious in getting tested because it can be useless if not done by the proper protocol needed to move to the next step to correct the blockage and I don’t think we’re there yet.

The Buffalo CCSVI study has been halted until later in January to give researchers a chance to analyze results from the first 500 participants. The study should resume by the end of January but I still haven’t heard of any studies around Calgary. Research proposals are due February 9th but the MS society won’t announce funding decisions until June 14th. The maximum funding amount is only $100,000 so I’m not too sure that we’ll see any significant research from this, we need some serious studies and trials to take place! I think this requires more than the MS society, we need our university research bodies on this and our sceptical MS clinics. I don’t want to wait a year to review the study from Buffalo just to determine we should start doing similar studies here. It seems odd to me that all the initial excitement seems to be fading away except for us MS’ers.

The CCSVI Facebook group was threatened to be shut down! They had to delete some things due to abuse reports that were filed and as long as people aren’t using names and hurting anybody’s reputation or feelings, it will be permitted to stay online. What ever…. Like I said there are some suspicious things going on and conspiracy theories are coming out. Not that I normally pay much attention to that sort of thing but in the end everything comes down to money. Big pharm stands to lose billions of dollars and so do organizations like MS societies and you never really know where influence is coming from. Many people are looking into direct funding opportunities into CCSVI research and diverting their donations to a more specific cause.

I totally agree that we need much more research into Zamboni’s work and we can’t just open the flood gates to everyone with MS to get tested but we can’t take years to get into it. I won’t be seeing my neurologist until January so I really don’t know his position. Once there is an established and accepted protocol for MRV or ultrasound I will be getting a referral post haste, I really want to know if I have blockages! If in fact I do then I’ll really be on a mission to have my veins cleared and allow the blood to flow properly. I really do believe in this theory and Dr. Williams’s hypothesis makes so much sense as well. I never realized that I grinded my teeth but I’ve seen the evidence now and after wearing an aqualizer for less than a week I had it ruined! An aqualizer is a similar to a night guard but quite temporary, it has two pouches filled with water that keep your teeth from touching and I had them burst in no time.
After more research into his hypothesis I’m sure it has an effect, not just causing pressure changes and bleeding in the brain but that the end result actually is a cause of CCSVI. If this is the case then I’ve been unconsciously doing some big damage. Dr. Williams said I have temporal muscles like Arnold Schwarzenegger! I know that I often find myself tensing up; you know how your body and muscles tighten and become stiff when you get cold. I see this response occur quite regularly, not just when I’m cold but to the extreme when I am cold like in the -30° temperature we’ve had in Calgary lately! I know my muscles tense up in my back because like my temporal muscles, my back is totally ripped, I’m sure if I flexed you could identify every muscle. My massage therapist used to tell me that my back muscles were so tensed that it actually hurt her fingers. My layman hypothesis is that this has a similar effect like grinding my teeth or clenching my jaw. Having said that, I’m very eager to get tested for CCSVI.

I still consider myself to be doing quite well but I’ve been experiencing more difficulties lately. At times my eyes are really sore and I’ve been moving around much slower. The winter cold and snow contribute to this but my legs have felt very heavy and I haven’t had a lot of energy or motivation. My balance has deteriorated as well which has been a problem, especially getting around on snow and ice. In the last month I’ve had four falls which is probably more than I’ve had in the last year. I sure don’t feel as young and resilient as I used to.
Anyway this is probably my last blog before the holidays so I wish everyone a MERRY AND BLESSED CHRISTMAS!
LC

3 comments:

Enjoying the Ride said...

Hey Lee,

I just stumbled onto your blog for the first time. I've been watching the CCSVI thing pretty closely for a couple of months. The two steps forward, one step back nature of it is frustrating. But I do believe progress is slowly being made, and I further believe that no attempts to stymie this research will be successful. It just has too much interest from the most important people in the equation- the MS patients.

I have PPMS, and am on the verge of being a total invalid (legs don't work and arms failing), so time is of the essence for me. I find it frustrating when "important people" urge patience. In my little world, time is running out. I need to change the pace of progress, not learn to accept it.

It's not all bad news though. University of BC is setting up a trial, with both diagnosis and treatment. Dr. Dake at Stanford is setting up a trial for both diagnosis and treatment. In a couple of months Buffalo will release their preliminary findings. This will be the first non-Zamboni data to be released. Frankly, it will either kill the momentum, or increase it by a factor of 10!

Kara said...

I just got back to Germany so I am catching up with everything. Checked out your latest post and all I can say is "what the.." Of course I am on Tysabri and they did take that off the market when 2 people died, brought it back on and 30 people have died, but that is kept more quiet now. So I am sure this will be brought back on, but so disappointing to have it stopped so fast. Thanks for the updates.

Randall Doser said...

Thanks for the information, but could you cite some sources? I'd love to know where you dug some of this up so I could read more about it (like Zamboni stopping the Liberation Procedure). Thanks again.