I was able to attend the annual meeting of the Consortium of Multiple Sclerosis Centers in Orlando last week and am in the process of writing a series of articles about the content of each of the sessions I attended. Here is the one on CCSVI.
CCSVI: Controversy and Reality
Consortium of Multiple Sclerosis Centers Annual Meeting 2013
Faculty: Alex Rae-Grant, MD
Reported by: Cherie C. Binns RN BS MSCN
This is the second in a series of articles reporting on educational sessions I attended at the Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in Orlando Florida between May 29 and June 1, 2013. This presentation was part of a larger discussion on “Complementary and Alternative Medicine: Controversial and Unconventional Therapies”.
Dr. Rae-Grant began by giving dictionary definitions of “controversy” and “reality” then went on to explain that CCSVI (Central Cerebrospinal Vascular Insufficiency) as described by Dr. Zamboni from Italy in 2009 swept the MS Community off its feet with the claim that 100% of all MS was caused by this condition and was treatable (curable) by a simple vascular surgery labeled “Liberation Therapy”. Zamboni was a vascular surgeon whose wife had Multiple Sclerosis. Dr. Rae-Grant explained, “If you are a carpenter, your tools are hammer and nails. If you are a neurologist, your tools are neurological exam and MRI. If you are a vascular surgeon, your tools are Doppler and scalpel”. By saying this, he told us that we each work with the knowledge and tools we are most skilled in working with and most knowledgeable about.
This is exactly what Zamboni did when identifying and treating CCSVI.
Dr. Rae-Grant went on to give a history of vascular theories for Multiple Sclerosis (MS) dating back to the mid-1800s and coming up through the end of the 20th Century. Most of these theories came about from examination of tissue on the autopsy table or under a microscope following brain or spinal cord biopsies. None of these theories, until Zamboni’s was presented in 2009, brought with it any hope of treatment or cure of MS.
With Zamboni’s publication of his theory and subsequent Liberation Therapy, MS patients around the world began to demand that their physicians test them for this condition and treat accordingly. “For a while”, said Rae-Grant, “Drs were doing Liberation Therapies right and left because it was a relatively safe, simple and low cost procedure and there was big money potential in it as well as the probability of curing a large segment of the MS population and reducing health care cost across the board!” Soon, however, they began to see that patients who initially saw improvement were losing that gain within days to weeks and the procedure needed to be repeated…often 3-4 times.
At this point, throughout the United States and Canada as well as other countries across the world, Clinical trials were being initiated to test patients with MS against healthy volunteers to see if the condition could be documented by the methods Zamboni presented. Findings were fairly uniform in that only about half (or as few as 30% in some trials) were found to have this condition and , in some cases, it was found more frequently in healthy volunteers than in the MS population itself. Liberation Therapy did not, as a rule, provide long term improvement to any of those on which it was performed.
The clinical trials pointed out the need for better stenting (a small implantable device placed in a blood vessel to hold it open). Stents currently used are made to be implanted within the muscular wall of an artery which, by the nature of its muscular quality, holds a stent from dislodging. Veins, on the other hand, have flaccid (relaxed) walls with flaps or valves throughout the length of them and they do not hold a traditional stent in place well and bring a risk (with stenting) of dislodging the stent and allowing transfer to the heart, lungs or brain bringing with it the potential for severe injury or death. Researchers, therefore , are beginning to look at redesigning a stent that will work well within the walls of a vein without the risk of dislodging and causing harm.
Currently, most of the Controversy has quieted in the Medical community as researchers have shown that , while CCSVI is real and may be treatable, it does not appear to cause MS, nor, when treated, cure it. Some people with MS (PWMS) do report improvement in symptoms and function for brief periods following Liberation Therapy but for most, this is temporary at best. Because there has been some improvement in a small population, researchers have not swept this theory under the rug but are continuing to look at ways to improve the lives of persons living with this condition. For now, however, it is not considered a viable treatment or cure for PWMS and other methods of disease management need to be considered.
Should anyone wish a copy of the references cited by Dr. Rae-Grant in his presentation, I can provide them upon request. You may go to the home page of MS Views and News and click on the Information Tab at the top of the page then “Ask the MS Nurse” to find my contact information. Or send an email to cheriemscn@gmail.com and I will provide references.
June 4, 2013
Cherie C. Binns RN BS MSCN
References were limited in this presentation and I seem not to be able to attach the one page sheet of them here. If you want them, please PM me with an email address where I can attach a word document with them and get it to you.
CCSVI: Controversy and Reality
Consortium of Multiple Sclerosis Centers Annual Meeting 2013
Faculty: Alex Rae-Grant, MD
Reported by: Cherie C. Binns RN BS MSCN
This is the second in a series of articles reporting on educational sessions I attended at the Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in Orlando Florida between May 29 and June 1, 2013. This presentation was part of a larger discussion on “Complementary and Alternative Medicine: Controversial and Unconventional Therapies”.
Dr. Rae-Grant began by giving dictionary definitions of “controversy” and “reality” then went on to explain that CCSVI (Central Cerebrospinal Vascular Insufficiency) as described by Dr. Zamboni from Italy in 2009 swept the MS Community off its feet with the claim that 100% of all MS was caused by this condition and was treatable (curable) by a simple vascular surgery labeled “Liberation Therapy”. Zamboni was a vascular surgeon whose wife had Multiple Sclerosis. Dr. Rae-Grant explained, “If you are a carpenter, your tools are hammer and nails. If you are a neurologist, your tools are neurological exam and MRI. If you are a vascular surgeon, your tools are Doppler and scalpel”. By saying this, he told us that we each work with the knowledge and tools we are most skilled in working with and most knowledgeable about.
This is exactly what Zamboni did when identifying and treating CCSVI.
Dr. Rae-Grant went on to give a history of vascular theories for Multiple Sclerosis (MS) dating back to the mid-1800s and coming up through the end of the 20th Century. Most of these theories came about from examination of tissue on the autopsy table or under a microscope following brain or spinal cord biopsies. None of these theories, until Zamboni’s was presented in 2009, brought with it any hope of treatment or cure of MS.
With Zamboni’s publication of his theory and subsequent Liberation Therapy, MS patients around the world began to demand that their physicians test them for this condition and treat accordingly. “For a while”, said Rae-Grant, “Drs were doing Liberation Therapies right and left because it was a relatively safe, simple and low cost procedure and there was big money potential in it as well as the probability of curing a large segment of the MS population and reducing health care cost across the board!” Soon, however, they began to see that patients who initially saw improvement were losing that gain within days to weeks and the procedure needed to be repeated…often 3-4 times.
At this point, throughout the United States and Canada as well as other countries across the world, Clinical trials were being initiated to test patients with MS against healthy volunteers to see if the condition could be documented by the methods Zamboni presented. Findings were fairly uniform in that only about half (or as few as 30% in some trials) were found to have this condition and , in some cases, it was found more frequently in healthy volunteers than in the MS population itself. Liberation Therapy did not, as a rule, provide long term improvement to any of those on which it was performed.
The clinical trials pointed out the need for better stenting (a small implantable device placed in a blood vessel to hold it open). Stents currently used are made to be implanted within the muscular wall of an artery which, by the nature of its muscular quality, holds a stent from dislodging. Veins, on the other hand, have flaccid (relaxed) walls with flaps or valves throughout the length of them and they do not hold a traditional stent in place well and bring a risk (with stenting) of dislodging the stent and allowing transfer to the heart, lungs or brain bringing with it the potential for severe injury or death. Researchers, therefore , are beginning to look at redesigning a stent that will work well within the walls of a vein without the risk of dislodging and causing harm.
Currently, most of the Controversy has quieted in the Medical community as researchers have shown that , while CCSVI is real and may be treatable, it does not appear to cause MS, nor, when treated, cure it. Some people with MS (PWMS) do report improvement in symptoms and function for brief periods following Liberation Therapy but for most, this is temporary at best. Because there has been some improvement in a small population, researchers have not swept this theory under the rug but are continuing to look at ways to improve the lives of persons living with this condition. For now, however, it is not considered a viable treatment or cure for PWMS and other methods of disease management need to be considered.
Should anyone wish a copy of the references cited by Dr. Rae-Grant in his presentation, I can provide them upon request. You may go to the home page of MS Views and News and click on the Information Tab at the top of the page then “Ask the MS Nurse” to find my contact information. Or send an email to cheriemscn@gmail.com and I will provide references.
June 4, 2013
Cherie C. Binns RN BS MSCN
References were limited in this presentation and I seem not to be able to attach the one page sheet of them here. If you want them, please PM me with an email address where I can attach a word document with them and get it to you.
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