This past week the world lost a woman I truly admired, Barbara Garcia. I owe her a lot, as do hundreds of other MS patients in the Tampa Bay area who were searching and searching for a way to improve their daily challenge of living with debilitating symptoms of Multiple Sclerosis.
Enter CCSVI, Chronic CerebroSpinal Venous Insufficiency. A venous angioplasty procedure discovered by Dr. Paulo Zamboni,whose own wife was suffering with MS. Dr. Zamboni believed that MS was not an auto-immune disease, but instead a problem with blood flow as it was first described when it was discovered in 1868 by French neurologist Jean-Martin Charcot.
Dr. Paulo Zamboni
Dr. Zamboni's discovery, after years of research, CCSVI, was first performed in the U.S. at Stanford University by Dr. Michael Dake. He was approached by a woman, Joan Beal, who was looking to help her own husband suffering with MS. Joan had done her research and she sought and located Dr. Dake
Dr. Dake agreed and did the procedure with some pretty remarkable results. Shortly thereafter Joan began a Facebook Page CCSVI in MS and the word began to spread around the world. Everyone began asking questions about what this new procedure was, how they could get it, and would and could it really help them too? There was HOPE in the MS world, something that is in short supply in the lives of people living with MS.
The social media giant Facebook was back in it's infancy back then, having only been around a few years, but when you have any news of something that can help people who live with this debilitating disease, news travels fast and let me tell you, it began spreading like wildfire.
I was learning about CCSVI on Facebook through Joan and began talking to people, new friends I met on Facebook. Meanwhile my friend Barb was hot on the trail too. She began searching doctors in the Tampa area that could perform this for her. I remember her telling me that she opened the phone book under interventional radiologists, said a prayer and her hand landed on Arslan. So, she contacted Dr. Bulent Arslan, an accomplished interventional radiologist practicing at Moffitt Cancer Center. She approached him and pleaded her case.
Dr. Arslan did his homework and decided to help Barb and in July 2010 she became the first person in the Tampa Bay area to have the CCSVI venous angioplasty procedure done. Others soon followed. I was patient #4 and others from around the country began flocking to him to try improve their lives. There were other interventional radiologists who began to get involved in the area too. It seemed to us MS patients, that this group of doctors seemed to be the most compassionate of professionals. They actually listened to you and empathized with your problems, something that is sometimes in short supply in the neurological community, at least from my perspective.
CCSVI was a hot topic in the MS community, at least in the tech savy MS community. You certainly weren't going to learn of this from your neurologist. They began to see the interventional radiologists as a bunch of cowboys lassoing their MS patients up and stealing them away. After all, MS is an auto-immune disease, as medical science redirected the disease in the 1950's. right? But for me, and for alot of others, MS seemed to be more of a vascular disease. I for one always had terrible circulation and bad varicose veins, so it made sense that proper blood flow was part of the problem.
And after I did months of research myself and learned about Dr. Arslan, when first CCSVI procedure was done in August 2010, I saw some pretty dramatic results as well. Gone were the bone-crushing, my head in a vice headaches that had plagued me for years. My fatigue level was dramatically reduced,. I used to have to lay down every few hours, but now I was able to have a life, being up and alert for 7-8 hrs at a time. My cognitive function was also dramatically improved. And also gone were those terrible burning ears which had also plagued for so many years. I felt exhilarated to say the least, something I hadn't felt in many, many years.
When Dr. Arslan told me that my jugular veins, the main drainage from my brain were both 70% blocked it made sense. While CCSVI never claimed to be a cure for MS, getting my blood flowing properly out of my brain certainly helped many of my worst MS symptoms.
I knew I had to do something to tell others about this remarkable procedure so I reached out to the CCSVI Alliance, a newly formed organization, whose main purpose was to educate others about CCSVI and it's relation to MS.
I began working with others in the Alliance, Joan Beal being one of the founders, along with Michelle Brown, the first one to have it done in NY and Sharon Richardson, another one of Dr. Dake's early patients.
With Dr. Arslan's full encouragesment, we decided to have an educational seminar and the first ever CCSVI Walk to spread the word. Barbara Garcia was one of our speakers at the well attended seminar telling others about her astounding results and how she was enjoying walking unaided for the first time in years.She said one of her biggest joys was being able to hold her granddaughter on her hip just like a normal healthy grandma. She was also able to travel overseas and enjoy her life like never before. What a blessings that was for her.
In conjunction with the educational seminar we held a fundraising walk called the CCSVI Walk n' Roll. It was held at Lettuce Lake Park in Tampa, with hundred of participants and interested parties. We were able to raise a ton of money for the CCSVI Alliance, which I was very happy about. Here are a couple of wonderful pics from the walk.
Several organizations were born from CCSVI., the ISNVD (International Society for NeuroVascular Diseases) was the most important. It is still very active today. There is still so much to learn about the vascular connection to multiple sclerosis. Actually, Dr. Zamboni has a new book out because he continues to learn more about MS and the venous/vascular system.
Many of us MS/CCSVIers were blessed to be able to attend one of the ISNVD conventions that was held in Orlando FlL back in 2012. I met new friends from around the country that had CCSVI done. We were a growing community and remain pretty close knit through social media. Even though now we are scattered across the country and even around the world, if and when new information becomes available, we all pass it along to help keep ourselves and other MS'ers informed.
Barb was so happy to meet Dr. Marion Simka from Poland.
The CCSVI craze has now passed. The neurological community fought hard against this simple vascular procedure that helped so many MS sufferers and sadly, in many ways they won this battle, but the research continues. Thousands of people all over the world had the procedure done, many with long lasting positive effects. Unfortunately, many had their MS symptoms return when their veins closed back up, but for those brief months or maybe years, they were free and were able to live life as an able-bodied person. They were able to experience life as a normal person, maybe if only for a brief while, but for me and for many others, it was worth everything.
So our sweet Barb has left this earth, and is now residing in heaven where she is no longer shackled by the MS that racked her earthly body for most of her life. I'm so saddened for her family, I know it is a tremendous loss. She was only 55 years old. She leaves behind a loving husband, her mother and two daughters and grandchildren. I'm also sorry for those of us who love her and were able to share this CCSVI experience with her. We'll miss being in touch with her. She was a fun gal.
Yes, I am sad, BUT, and this is a big BUT, I am absolutely THRILLED for my friend. She is now dancing in heaven in front of Jesus, her Savior. For the Bible is very clear. In 2 Corinthians 5: it says "We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord."
Barb is now with Jesus! She is no longer in pain or in a wheelchair. All her body parts work perfectly again! She is brand new! I also know she is having the time of her life. Honestly, I have to admit, I'm a little jealous. But I know my time will come to meet my redeemer. Until then, I will carry on spreading the Word of God and trying to help those who are hurting in this world, because I know there are so many.
So farewell my very sweet friend. You may be gone from this earth, but you will never be forgotten.
My verse for today is above in red.
My prayer for today:
Dearest Heavenly Father,
Thank you for the life of my sweet friend, your servant Barbara Garcia. She was such a kind soul and her pioneering spirit helped so many suffering with MS. Thank you for her boldness to forge on and learn about CCSVI so she could share it with the world. Thank you for Dr. Zamboni and his discovery and for Dr. Arslan and so many other doctors who were willing to step out of the box to try something new to help those suffering. I will be forever grateful.
Amen
Barbara with her beloved husband, Robert
Enter CCSVI, Chronic CerebroSpinal Venous Insufficiency. A venous angioplasty procedure discovered by Dr. Paulo Zamboni,whose own wife was suffering with MS. Dr. Zamboni believed that MS was not an auto-immune disease, but instead a problem with blood flow as it was first described when it was discovered in 1868 by French neurologist Jean-Martin Charcot.
Dr. Zamboni's discovery, after years of research, CCSVI, was first performed in the U.S. at Stanford University by Dr. Michael Dake. He was approached by a woman, Joan Beal, who was looking to help her own husband suffering with MS. Joan had done her research and she sought and located Dr. Dake
Dr. Dake agreed and did the procedure with some pretty remarkable results. Shortly thereafter Joan began a Facebook Page CCSVI in MS and the word began to spread around the world. Everyone began asking questions about what this new procedure was, how they could get it, and would and could it really help them too? There was HOPE in the MS world, something that is in short supply in the lives of people living with MS.
The social media giant Facebook was back in it's infancy back then, having only been around a few years, but when you have any news of something that can help people who live with this debilitating disease, news travels fast and let me tell you, it began spreading like wildfire.
I was learning about CCSVI on Facebook through Joan and began talking to people, new friends I met on Facebook. Meanwhile my friend Barb was hot on the trail too. She began searching doctors in the Tampa area that could perform this for her. I remember her telling me that she opened the phone book under interventional radiologists, said a prayer and her hand landed on Arslan. So, she contacted Dr. Bulent Arslan, an accomplished interventional radiologist practicing at Moffitt Cancer Center. She approached him and pleaded her case.
Dr. Arslan did his homework and decided to help Barb and in July 2010 she became the first person in the Tampa Bay area to have the CCSVI venous angioplasty procedure done. Others soon followed. I was patient #4 and others from around the country began flocking to him to try improve their lives. There were other interventional radiologists who began to get involved in the area too. It seemed to us MS patients, that this group of doctors seemed to be the most compassionate of professionals. They actually listened to you and empathized with your problems, something that is sometimes in short supply in the neurological community, at least from my perspective.
CCSVI was a hot topic in the MS community, at least in the tech savy MS community. You certainly weren't going to learn of this from your neurologist. They began to see the interventional radiologists as a bunch of cowboys lassoing their MS patients up and stealing them away. After all, MS is an auto-immune disease, as medical science redirected the disease in the 1950's. right? But for me, and for alot of others, MS seemed to be more of a vascular disease. I for one always had terrible circulation and bad varicose veins, so it made sense that proper blood flow was part of the problem.
And after I did months of research myself and learned about Dr. Arslan, when first CCSVI procedure was done in August 2010, I saw some pretty dramatic results as well. Gone were the bone-crushing, my head in a vice headaches that had plagued me for years. My fatigue level was dramatically reduced,. I used to have to lay down every few hours, but now I was able to have a life, being up and alert for 7-8 hrs at a time. My cognitive function was also dramatically improved. And also gone were those terrible burning ears which had also plagued for so many years. I felt exhilarated to say the least, something I hadn't felt in many, many years.
When Dr. Arslan told me that my jugular veins, the main drainage from my brain were both 70% blocked it made sense. While CCSVI never claimed to be a cure for MS, getting my blood flowing properly out of my brain certainly helped many of my worst MS symptoms.
I knew I had to do something to tell others about this remarkable procedure so I reached out to the CCSVI Alliance, a newly formed organization, whose main purpose was to educate others about CCSVI and it's relation to MS.
I began working with others in the Alliance, Joan Beal being one of the founders, along with Michelle Brown, the first one to have it done in NY and Sharon Richardson, another one of Dr. Dake's early patients.
With Dr. Arslan's full encouragesment, we decided to have an educational seminar and the first ever CCSVI Walk to spread the word. Barbara Garcia was one of our speakers at the well attended seminar telling others about her astounding results and how she was enjoying walking unaided for the first time in years.She said one of her biggest joys was being able to hold her granddaughter on her hip just like a normal healthy grandma. She was also able to travel overseas and enjoy her life like never before. What a blessings that was for her.
In conjunction with the educational seminar we held a fundraising walk called the CCSVI Walk n' Roll. It was held at Lettuce Lake Park in Tampa, with hundred of participants and interested parties. We were able to raise a ton of money for the CCSVI Alliance, which I was very happy about. Here are a couple of wonderful pics from the walk.
 |
| CCSVI Walk n'Roll, March 5, 2011 Tampa, Fl. |
 |
| Me with Dr. Bulent Arslan and Barbara Garcia |
CCSVI Walk, left to right,
Susie Ulrey, Janet Grieco, me, Michelle Sciuto, Michelle Brown & Marsha Mays
 |
| Latest Frontiers in hemodynamics,imaging and treatment of obstructive venous disease by Dr. Paulo Zamboni |
Several organizations were born from CCSVI., the ISNVD (International Society for NeuroVascular Diseases) was the most important. It is still very active today. There is still so much to learn about the vascular connection to multiple sclerosis. Actually, Dr. Zamboni has a new book out because he continues to learn more about MS and the venous/vascular system.
Many of us MS/CCSVIers were blessed to be able to attend one of the ISNVD conventions that was held in Orlando FlL back in 2012. I met new friends from around the country that had CCSVI done. We were a growing community and remain pretty close knit through social media. Even though now we are scattered across the country and even around the world, if and when new information becomes available, we all pass it along to help keep ourselves and other MS'ers informed.
Barb, Dr. Arslan and I at the ISNVD 2012
 |
| Barbara with Dr. Zamboni at ISNVD 2012 |
So our sweet Barb has left this earth, and is now residing in heaven where she is no longer shackled by the MS that racked her earthly body for most of her life. I'm so saddened for her family, I know it is a tremendous loss. She was only 55 years old. She leaves behind a loving husband, her mother and two daughters and grandchildren. I'm also sorry for those of us who love her and were able to share this CCSVI experience with her. We'll miss being in touch with her. She was a fun gal.
A recent picture of Barb with her family
Yes, I am sad, BUT, and this is a big BUT, I am absolutely THRILLED for my friend. She is now dancing in heaven in front of Jesus, her Savior. For the Bible is very clear. In 2 Corinthians 5: it says "We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord."
Barb is now with Jesus! She is no longer in pain or in a wheelchair. All her body parts work perfectly again! She is brand new! I also know she is having the time of her life. Honestly, I have to admit, I'm a little jealous. But I know my time will come to meet my redeemer. Until then, I will carry on spreading the Word of God and trying to help those who are hurting in this world, because I know there are so many.
So farewell my very sweet friend. You may be gone from this earth, but you will never be forgotten.
My verse for today is above in red.
My prayer for today:
Dearest Heavenly Father,
Thank you for the life of my sweet friend, your servant Barbara Garcia. She was such a kind soul and her pioneering spirit helped so many suffering with MS. Thank you for her boldness to forge on and learn about CCSVI so she could share it with the world. Thank you for Dr. Zamboni and his discovery and for Dr. Arslan and so many other doctors who were willing to step out of the box to try something new to help those suffering. I will be forever grateful.
Amen
