Friday, February 24, 2012

A CCSVI Weekend of Hope

Last weekend I went up to the International Society of Neurovascular Diseases (ISNVD) Patient Day in Orlando, FL. This is their 2nd Annual Conference, the first one being in Bologna, Italy last year. The ISNVD is a new consortium of doctors from around the world who are seeking to learn more about the vascular connection between MS and Chronic Cerebro Spinal Venous Insufficiency(CCSVI).

                                                                 Panel of doctors answering questions 
                                                               from the crowd at the ISNVD conference

If you know me well, you know that CCSVI is the new treatment I had in August 2010, that dramatically improved my MS symptoms and my life. I've also had it another two times since then.

It has been a world wind of activity for me and for the thousands of us who have been helped by this simple angioplasty treatment. Many of our worse and most debilitating symptoms of the terrible disease that we live with each day, MS, have been eased and greatly abated. This has given many of us a whole new lease on life. The CCSVI treatment restores proper blood flow to the body, thus alleviating many of our most annoying MS symptoms such as cog fog, fatigue, balance issues and walking issues.

It has changed my life so much that much of this past 18 months have been spent working with the CCSVI Alliance, a new volunteer organization formed in Feb. 2010 to get the word out about CCSVI. I've been helping in their efforts to bring CCSVI awareness to the over 400,000 people living with MS in the United States.

It all began with my (hair-brained??) idea in October 2010 to have a walk similar to an MS Walk but better. And so I worked with Michelle Brown and other members of the CCSVI Alliance.

We had an educational seminar and the first CCSVI Walk-n-Roll last March in Tampa, FL. on March 4-5, 2010. What a wonderful weekend of education and fun and we were able to raise almost $30,000 for the Alliance to help them spread the news about CCSVI! My procedure and CCSVI had given me a whole new purpose in life. I wanted others to have the same hope that I had felt for the first time in many, many years.

                                            Here is my team, Arslan's Army at the CCSVI Walk-n-Roll

                                       Me and my buddy Michelle~I was so blessed to make this new friend~

I wanted to help MS patients become pro-active about their own health instead of relying on everything their neurologists tell them. Each day there is more and more evidence that MS through CCSVI has a strong vascular connection. I wanted to help MS patients empower themselves to learn more about their disease. And I hope that I have done that through my presence on our CCSVI Florida Facebook page, and through my blog To learn more about CCSVI, visit the CCSVI Alliance website at

So, the past two years have been really crazy and exciting for me and a lot of other MS/CCSVI'ers to say the least. The arrival of a computer and internet access in almost every home, plus the surge in popularity of social media, ala Facebook, Twitter and Youtube has enabled MS patients to communicate with each other like never before. Patients have been posting before and after videos showing how they are doing before their CCSVI procedures and after. We are talking to each other in posts, videos and in private messages about what we are going through and what our treating doctors are and aren't doing. We don't need phones, we're communicating like never before. It is a time like no other time in history of self awareness for MS patients.

So what was all the excitement about this past weekend? The discoverer of CCSVI, Italian vascular surgeon, Dr. Paulo Zamboni, crossed the pond and came to the ISNVD event. He spoke and came to the President's Day reception sponsored by BNAC! There were doctors from different fields, researchers, physicists, and scientists and they shared their brilliant minds to include us in part of their medical forum~ at least for a 6 precious hours. They gave lectures and answered questions. They mingle with us, just like regular folks. It was awesome!

                                                  Dr. Paulo Zamboni addresses the enthusiastic audience

                      Neurologists Dr. David Hubbard and Dr.Jack Burks debating some issues

I think it is quite a huge thing for doctors to actually include a group of patients in their inner sanctum. There was a welcome question and answer session. They were actually asking us about our concerns,  and listening, really listening to us. And event like this is totally unprecedented from what I know? What a lively time we had and one of our own, Marsha Mays, represented all of us with this awesome question for neurologist Dr. Jack Burks. Lots of applause on this one. Listen in~

                                                                  Marsha with Dr. Zamboni

Last weekend was all about HOPE. It was all about seeing people with MS who are moving forward and living their lives with purpose and a positive spirit--instead of heading in the other direction and regressing. It was about meeting new and old friends and connecting with social media friends that we've met online, but never had the pleasure of meeting in person. It was about saying thanks to this growing group of doctors who have given us so much to look forward to for the first time in a long time.

                                                Me and Dr. Arslan with Dr. David Hubbard looking on~

                                             Danielle Rheaume ( and Dr. Kaylee McDonald

It was about seeing us "sick" people actually enjoying ourselves, laughing, smiling and giggling, It was about sharing the excitement of seeing first hand the improvement in the lives of those living with a debilitating chronic progressive disease. It was about hugging and picture taking with our heroes, who are working so very hard to help us get better and feel better. It was about doctors who really "Care" about our quality of life and are trying to help us improve it. It was so much fun~

Jan Norman and Michelle Sciuto enjoy a fun moment
                                Donna Romano, Dr. Mike Dake and Cindi Murrah (the Dake groupies!)

                                                 New CCSVI Board Member Christine Righeimer and family

For the first time in many years, MS patients now have hope. And that is something every human being needs to have. It is a God-given right that we need to hang onto with everything in us.

There are a couple of Bible verses that I have prayed for years in relation to my healing from MS over these past 14 years since my official diagnosis.

Romans 12:12 says "Be joyful in hope, patient in affliction, faithful in prayer." Another powerful verse is from Romans 15:13  "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." I claimed these verses as my own in anticipation of my healing, knowing that my God would come through in His perfect time. And of course He did, through a compassionate and brilliant man who had a wife also suffering with MS, a doctor named Paulo Zamboni. 

For me, Dr. Zamboni and his discovery of CCSVI is simply an answered prayer from the God of the Universe. Dr. Zamboni is a man of science, and as such it is up to science to prove that his theory is valid, but for me, seeing the faces of happiness and joy on the patients of those who have suffered for so long is proof enough for me.

I say a big thank you and God Bless you Dr. Zamboni! Continued thanks to you and all your colleagues who continue to work so vigorously on our behalf. We will never forget your dedication. You have changed our lives forever.

                                              Me and Dr. Zamboni! Darn I wish that picture wasn't blurred!

My verses for today are above in red.

My prayer for today:

Dear Heavenly Father:

Thank you Lord for Dr. Zamboni. Thank you for guiding his research and thank you for his discovery of CCSVI. Thank you for all the doctors who are continuing to work on our behalf, learning more each day about the vascular connection between CCSVI and MS. Thank you for all the wonderful new friends that I have met who have enriched my life so much these past 18 months. Thank you Lord. Please continue to be with their physicians, scientists and researchers as they continue to learn more about CCSVI so that more and more people may be healed.

In Jesus Name I pray,

1 comment:

  1. Sharon Richardson, President, CCSVI AllianceTuesday, March 6, 2012 at 8:44:00 PM EST

    Nicely done Nicki!

    It was a great day for everyone..patients and doctors at their best. Now onto San Francisco - at least I do not have to plan a whole day...only 3 will be a piece of cake compared to last weekend.



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