CCSVI
What is CCSVI?
CCSVI or Chronic Cerebrospinal Venous Insufficiency refers to a chronic condition in which there is a narrowing of some
veins in the head and neck. Since these veins drain the spine and brain, the narrowing can restrict the amount of blood
flow back to the heart. This can often cause blood to "reflux" and flow back into the brain. This backflow can then cause
damage to the brain tissue and leave behind toxic iron deposits.
CCSVI and MS
Dr. Paolo Zamboni, a vascular surgeon from Italy, has found a high presence of Chronic Cerebrospinal Venous Insufficiency
in MS patients. These problems were found only in MS patients, not in healthy people, nor in those with other neurological
conditions. He has concluded that there is a strong link between CCSVI and MS. Currently the MS Society of Canada is
planning for more clinical testing to be done in Canada before they make any conclusions.
Treatment
CCSVI has been treated with a procedure similar to an angioplasty. It involves inserting a balloon into a narrowed area of
a vein and then inflating it. The pressure from the balloon causes the vein to open, allowing blood to flow normally.
This treatment has been done for some MS patients and has resulted in increased cognitive and motor activities, and in
some cases, fewer or no MS attacks. While this procedure is not yet being performed in Canada, it is now being offered
in a few clinics in the US and preliminary results have been very promising.
Darcie James her story on CCSVI
I have had MS for 10 years. Life has been a struggle at times, and I have always been looking to fundraise and raise awareness for MS research in the hopes of finding a cure!
In July of 2010, Kevin and I made our way to Mexico to be tested and possibly treated for CCSVI. We researched several different places in the world that were performing the test and surgery. We ended up at a hospital in Mexico. I was tested for CCSVI and was told by the Doctor that my jugulars were only narrowed by 20% and my Azogos vein was clear. We were very disappointed to say the least. We made our way back home.
After we arrived home Kevin received a phone call from False Creek Surgical Center in Vancouver. I had been on a waitlist at the Centre for approximately eight months. We were very excited when they told us we had an appointment for the testing. They do not do the surgery in Canada, but are doing the testing under the "Zamboni Protocol". Dr. Zamboni is the Italian researcher who established the theory of CCSVI. We decided to get a second opinion....so glad we did. The testing done here in Canada was definitely more involved. We later found out that the testing done in Mexico was not the Zamboni protocol. We received a 30 page report on my results from Dr. Haacke in Detroit. It turns out that my left jugular was 80% blocked and my Azogos vein was pan-caked and pinched. I was a prime candidate for the surgery.
After a great deal of research we found a place in New Port Beach, California called "Pacific Interventionalists". We
sent my results to them and booked an appointment for the surgery. I had my CCSVI treatment/surgery done on November 20,
2010 by Dr. Arata. He is a fantastic doctor and the private hospital was great! Not long after I came out of surgery I
had warmth in my hands and feet which I had not had in a long time. The first thing Kevin noticed was I had color in my
chest and face! I have had several small improvements from that day on. My cognitive issues have improved, my balance
has improved as well as my speech. I have not used my cane to walk since the surgery. I used to go to bed with ice on
my head every night because of brain aches; I have not had one since. A headache yes, but a headache is not the same as
a brain ache! I still have MS and still have a lot of struggles day to day. By no means am I cured, but I am so very
happy I had the surgery. Getting back some quality of life is priceless. I want to thank everyone who helped me get the
treatment. It is my hope that in the near future they will be even bigger break throughs in this new treatment for MS
and a cure will be found!
Darcie James
Sherry McGarry her story on CCSVI
I had the CCSVI procedure on December 15, 2010. Since then I can speak with out a severe stutter, I don't sleep for 3 hours a day, my balance is much better. I am hoping that next year I can play soccer again with my team. I do understand that it is not a cure but it is a damn fine "speed Bump"!!! I am going to play at this years Kick for the Cure with my 13 year old daughter which is a dream I never thought would happen!!!!!!
Sherry McGarry