December 10, 2010
We deeply appreciate your interest in CCSVI Alliance. Since our inception nine months ago, we have striven to become a respected patient resource for the exploration of CCSVI. Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition characterized by abnormalities in the veins that drain blood from the brain and spinal cord. Research has linked this condition to MS. A pilot treatment study indicated that CCSVI could be corrected for many patients with an angioplasty procedure, and that once corrected, MS symptoms and relapse rates may significantly decrease for many patients.
MS patients such as Susan, who was diagnosed with MS ten years ago at the age of 40.
“The diagnosis was devastating, but at the same time I was relieved to finally learn that the severe vertigo, dizziness, nausea, heat and cold sensitivity, overwhelming fatigue, and numbness from my waist down had a name.” In 2010 Susan learned about CCSVI and decided to have her veins evaluated. She learned she had two areas of stenoses (narrowing) in her left jugular vein and one in her right jugular. Susan had her jugulars and azygos veins treated. “Alone in my kitchen, finally I tested the waters with my new blood flow. First I tried walking heel to toe, something I have not been able to do for over ten years. I did it with ease!!! I tried balancing on one foot and then the other. No problem! As the days continued I noticed my energy level was greatly improved. I had decreased neck stiffness, was able to turn my head with ease, and my cog fog was gone. I was able to maintain a thought pattern and carry on a conversation. My heat intolerance was also greatly improved. I went outside in 100º weather and didn’t get dizzy or fatigued. Today, four months after treatment, I am able to accomplish 3-6 daily tasks as opposed to 2-3. The other day I got to the top of the stairs and stopped, realizing that something was different. Then I figured it out. I had run up the stairs, like I used to! The improvements seem to keep on coming. Now, when someone compliments me on how good I look, I can honestly say, “I feel GREAT!” something I haven’t been able to say in over 10 years.”
CCSVI Alliance is working to assist patients like Susan and their families, and support the physicians interested in helping them. The Alliance provides a comprehensive website, www.ccsvi.org, with clear and objective discussions of CCSVI research, diagnosis, and treatment. All medical content has been reviewed by a world-class team of medical professionals. The website also offers resources to assist patients in discussing CCSVI with their medical team, as well as patient perspectives like Susan’s and FAQs. It provides a database of research abstracts, links to all IRB and N.I.H. approved CCSVI clinical trials and a growing catalogue of exclusive video interviews with some of the world’s leading CCSVI scientists and treating physicians.
CCSVI Alliance works with scientists, interventional radiologists, vascular surgeons, and neurologists, to foster a multi-disciplined collaboration. CCSVI Alliance is a member of the Endovascular Forum, www.endovascular.org, where it hosts a CCSVI group for the professional and medical community. Recently, the Alliance was recognized by the National Multiple Sclerosis Society (NMSS) as a valuable, balanced, and accurate resource for people affected by MS, who are seeking information on CCSVI and related treatment. As a result, ccsvi.org is the first CCSVI organization linked to by the NMSS. In January 2011, CCSVI Alliance will make a presentation at the International Society of Endovascular Therapy medical conference. www.iset2011.org.
Through these efforts CCSVI Alliance helps drive an urgent but coordinated effort to advance CCSVI knowledge and unravel the mystery of its link to MS. Help us find out more about CCSVI and its promising treatment, which may be helpful for many MS patients, by contributing today!
Donations may be made at www.ccsvi.org under the “Donate” tab or by mailing a check payable to “CCSVI Alliance” to:
CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472
Your giving will bring help and hope to people like Susan and others in great need, living with MS. Thank you for your generosity and kindness.
Sincerely,
Sharon Richardson, President
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