Wednesday, April 20, 2011

C.C.S.V.I. spells Hope!

Chronic Cerebrospinal Venous Insufficiency (CCSVI) is bringing new HOPE to patients living with the devastating effects of the chronic, progressive, and insidious disease, multiple sclerosis.

I got my diagnosis of MS on January 8, 1998, a day I will not soon forget. After having brain surgery for a ring-enhanced brain tumor, having every test known to man, and living in limbo for over a month as I got passed from doctor to doctor in search of what my mystery disease actually was, I finally had a name for all my weird symptoms. I fell on my face before the Lord, thankful I didn't have a brain tumor, or lymphoma (another disease that I was told was a possibility), but I had something called MS. I leaped with joy and hugged the head of neuro oncology. He thought I was nuts, but he had no idea of the emotional roller coaster my husband I had been through the last month. I was sent to a neurologist, because I was told the doctor that MS was a auto-immune disease. Thus began my long, arduous journey with MS. The prayers began for my healing.

Fast forward 12 years to 2010. I've have "survived" with MS all these years through my faith in God and my family and friends who have encouraged me along the way. I survived with the hope that the Lord would answer my prayers in his perfect time and begin my healing.

As we all know, MS is a progressive disease, and I indeed was progressing, especially in the last 3 years. And then, last spring, I heard about a new condition that could possibly be connected to MS. That something, was called CCSVI. Could it be true?Could my MS possibly be connected to my venous system? Could my many prayers for healing finally be answered?

Of course, the vascular connection is not new in the history of the MS, and in it's early origins, over 170 years ago, scientists believed MS to be a vascular disease. It isn't until recent history, the last 40-50 years that the auto-immune theory has emerged.

For me, it made total sense. I've had various veins and terrible leg pain for years, from a very early age, actually. I started following the trail of evidence, learning as much as I could about this new emerging theory in MS, called CCSVI. I learned about Dr. Zamboni, a vascular surgeon, whose wife who had MS. He was a man of God and science, praying, searching and studying, desperately trying to find a venous connection to MS.

When I started researching information back in March of 2010, there weren't many details available on CCSVI in MS. The CCSVI Alliance had just been incorporated a month before by Michelle Brown, Joan Beal, Sharon Richardson, and a few others. Joan's husband, Jeff, was the first person to have the CCSVI procedure done at Stanford by Dr. Michael Dake in 2009. Sharon was #3. Michelle was the first woman to have CCSVI procedure on the east coast by Dr. Sal Sclafani. They had all met on the internet page "This is MS" and began talking, like ladies do! Thank goodness they shared CCSVI with the world!

Because of the social media society that we now live in, with information being available almost instantaneously, CCSVI is something that just will not go away. The days of MS patients feeling powerless to do anything about their advancing, debilitating disease are gone. We are arming ourselves with scientific research and approaching the medical community, asking for answers. For the first time in years, those of us living with the downward spiral of MS, have turned the corner and are headed in the other direction, many against the advice of our closest advocates: our neurologists.

Because of Facebook and Twitter, thousands of people from around the world with MS are talking to each other like they have never done before. There is a huge swell of CCSVI chatter each day on these sites. New and emerging data is being posted almost as soon as it happens.

More and more Facebook groups are forming in the U.S and around the world. There's CCSVI -FL, NC, Seattle, Michigan, Hubbard Foundation and CCSVI, Brockville, Toronto, Alberta, etc - you get the picture. Facebook and Twitter announcements being posted daily to get the information out to the MS population.

Unfortunately, The National MS Society in the U.S. and Canada and most of the neurological community has not endorsed CCSVI, but that is not stopping the people actually living with the disease from learning more about it. We don't care. We are feeling better and we want to tell others suffering with MS. We want their prayers for healing to be answered too!

Over 30,000 people have had the CCSVI surgery worldwide to date and the numbers are growing daily and we are the ones moving the information forward. We are motivated to get the information out because we want to help others suffering with this terrible disease called MS. And we know that for many of us, a simple venoplasty procedure has profoundly changed our lives and we want to help others change their lives too.

I had my first procedure on August 19th, 2010 and my life has totally changed for the better. So, getting the information out to the world about CCSVI is for me, and so many, many others, a labor of love. We are NOT being paid a dime, but there are thousands of us devoting countless hours answering questions, talking to people, sending information out, writing blogs, referring fellow MS'ers to doctors, and posting scientific articles. We are making youtube videos so others can see us do cartwheels, jump and get up out of their wheelchairs, or just walk better and feel better than we have in a long time :) We're excited and we want the world to know about CCSVI!

There are CCSVI educational seminars and roundtables being held in different cities around the country. The Inaugural Opening Minds for CCSVI Walk-n-Roll, held in Tampa 2011, was an unqualified success. In Seattle in May 2011, CCSVI'ers showed up at the MS Walk with brochures and talked to people about what the CCSVI surgery had done for them. The CCSVI Alliance has held doctors roundtable discussions in Chicago, San Francisco and Las Vegas. The Word is getting out.

In May of 2011 and 2012, the Hubbard Foundation of San Diego, has held other CCSVI conferences. Dr. David Hubbard, a neurologist, came on board with CCSVI in 2010, when his son Devin was diagnosed with MS. Prompted by his wife Arlene to look into Dr. Zamboni's new theory about MS being a vascular problem, he took his son to be tested. Devin had the CCSVI procedure and has been symptom free since. Dr. Hubbard's whole family is now devoted to CCSVI research and awareness.

In Canada, where the procedure is banned after only 5 procedures were done, there is an outcry from MS patients. Canada has the largest MS population in the world and they want help. They are rallying, they are protesting, they are walking, they are going to parliament, they are petitioning. They are motivated and they are angry, and they will likely not stop until CCSVI is made available to all Canadians. Many of them are unfortunately, practicing medical tourism to the U.S., Mexico, Bulgaria, Poland, and Italy to have the "Liberation Procedure" performed. Why are they doing this? Because CCSVI works. It is changing lives and MS patients are desperate for help. The National CCSVI Society was formed and is a driving force to make CCSVI available for their citizens suffering from MS.

Now that the CCSVI procedure has been around for a few years and more has been learned from the many, many procedures that have been done around the world, some of the initial excitement has died down and CCSVI has become commonplace in many hospitals and clinics and is still being done with great success around the world.

Interventional Radiologists, the gurus of the angioplasty treatment that is helping so many with CCSVI in MS, are a committed, compassionate and driven group of doctors. They are out there, in the lead. They are learning, innovating and improving techniques for this new procedure as they move along. They are attending seminars and symposiums with MS patients. They are talking to the media when asked. They are engaging, interested and excited about the wonderful results that they are seeing from their surgeries. They want to help us. They seem empathic toward the suffering of MS patients which, for me, is a new phenomenon.

Sad to say, but I think that neurologists have become a bit hard hearted towards their MS patients. Do they really care about our quality of life? I think they want to push the latest drug on us, and see us in 3 months. They are so used to NOT being able to do much to help us and they want the status quo. By and large, most of them want to keep their heads in the sand about CCSVI. But you know what? They can only stay that way for so long. Because thousands of us are having the procedure done, we are talking and we are motivated like never before. This isn't the bee sting therapy, this really works friends.

CCSVI is just a new condition that can be treated. It is helping many of the debilitating symptoms of this disease that we live with called MS. Is there a connection? I think it's highly likely, but the researchers and scientists have much work to do. For now, there is excitement and healing and hope for many of us suffering with MS, and I, for one, will be eternally thankful to God Almighty!

CCSVI does spell Hope and I will be eternally thankful to God.

My verse for today is from Hebrews 11:1

Now faith is being sure of what we hope for and certain of what we do not see."

My prayer for today:

Lord Jesus:

Thank you for CCSVI! Thank you for doctors who are stepping out of the box to help those of us, suffering  with MS. Thank you for all the thousands of MS patients worldwide who are spreading the CCSVI news, one person at a time. Thank you for your faithfulness and answered prayers. I live with a thankful heart.

In Jesus Name I pray,

No comments:

Post a Comment

I would love to hear your comments on my blog. Please leave them here and God Bless you~