Thursday, October 22, 2009

GOOD NEWS ON THE RESEARCH FRONT

It’s been a long time since I’ve been this excited about new research findings. Yesterday I received a phone call from a woman who became aware of me and my quest for a cure through the W-Five documentary and was somehow able to locate my phone number as many others have done but this call was special. She was extremely excited to tell me about new developments that have recently surfaced indicating that a cause for MS has been discovered as well as a treatment that almost sounds like a cure. The causes of the disease have puzzled doctors and researchers for years and no concrete answer has ever been proven as far as I’m aware, until now that is.
CCSVI (Chronic Cardiospinal Venous Insufficiency) is a condition that is not new but has only recently been proven to have a causal link to the development of MS. CCSVI is a chronic condition where blood from the brain and spine has trouble getting back to the heart. It is caused by a narrowing of the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain, spine and tissue surrounding the spinal column resulting in demyelinating lesions on the spine causing paralysis, balance and bladder problems. Dr. Zamboni is a vascular surgeon from the University of Ferrara in Italy who has been studying this condition since 1987 but until recently very little has been published. Most people have not heard of CCSVI and its link to MS until research started to be presented in 2009.
Dr. Zamboni’s work along with others has shown that removing blockages in the veins by angioplasty procedures similar to removing blockages in the arteries in cardiovascular disease have shown a decrease in the number of relapses, reduction in the number of active brain and spinal lesions and great improvement in patient quality of life. One year after the procedure the rate of relapse and probability of acute attack decreased more than 4-fold and demonstrated improvements in mental status and chronic fatigue! Dr. Zamboni has been testing the procedure on his Italian patients for 2 years and found that many have greatly reduced symptoms and are showing signs of healing. He also tested the procedure on 18 people who were in the hospital due to a bad relapse and found that after opening the blocked vein with the balloon procedure, the relapse symptoms stopped and were reversed in 4 hours to 4 days without the usual use of steroids.
The interesting part of this discovery is that 100% of MS patients tested have had CCSVI whereas none of the normal patients (control group) had it and none of the patients with other neurological diseases had it, only people with MS! In a related study by Dr. Salvi, head neurologist at the University of Bologna, out of 500 MS patients tested, 100% had CCSVI. A further study is underway at the Jacobs Institute at New York State University that will include 1000 patients. Specific tests to determine if CCSVI is present are done by what’s known as a Doppler ultrasound or magnetic resonance venography, which require a doctor who specializes in radiology rather than neurology. I don’t believe these tests are readily available but before that even happens it’s critical to get our MS clinics and research bodies engaged in this treatment. The only doctor I know of thus far who is testing this concept is Dr. Drake, Chief of Cardiovascular and Interventional Radiology at Stanford University. I think he has used the procedure on about 18 people so far and is enlisting more patients to take part but apparently it is very difficult to be accepted. I have not seen any results from his work but news on this procedure is developing almost by the hour. Even though this breakthrough is new to me and most others, there is an incredible amount of information available on the internet and a Facebook group focused on this subject.
Given the history of caution demonstrated by Health Canada and other organisations like the MS Society, availability of this procedure will likely take over five years. In the mean time I am all over this new development and if it takes getting into a clinical trial to gain acceptance, I’ll be first in line. I have heard that the procedure will be available, likely in the US but is extremely expensive so perhaps I’ll have to keep my eye out for foreign clinics offering the treatment. Either way, this is the most exciting news I’ve heard on multiple sclerosis since being diagnosed over 13 years ago. A huge thank you goes out to Debra for making the effort to find my number and call me with this amazing news!
Stay posted for further developments,
LC

2 comments:

TK said...

That is awesome news to hear! :)

Loobie said...

Hey Lee, Dr. Dake is up over 50 treated now and is plugging along. He actually has put his cardio-thoracic stuff on hold and is working solely on this now. He's also part of the same foundation that Zamboni has created. You can find more information at http://www.fondazionehilarescere.org/eng/index.html

They are looking at lots of diseases with poorly understood etiology like ALS and the like.