The following is an excellent overview of the CCSVI-MS issue by 1eye, a Canadian MS patient who has undergone angioplasty. He posted this on September 18, 2017 under the question « Is Dr. Sclafani still around ? » on the ThisisMS website www.thisisms.com/
Dr. Sclafani , an Interventional Radiologist located in Brooklyn New York, is renowned for having pioneered venoplasty treatment of CCSVI stenosed veins in MS patients. For years he answered patient questions under the ThisisMS.com thread « Dr. Sclafani answers your questions. » The Administrator NHE with the assistance of Cece (see below) collected his CCSVI case studies on November 14, 2013 at the time of the one millionth view of his thread. The studies run from November 17, 2010 through May 14, 2014. (Dr. Sclafani began posting on TIMS March 13, 2010.) Dr. Sclafani continues to treat CCSVI for MS patients, though he makes no claims relating to MS. Rather, he frees obstructed blood flow in stenosed veins which has brought relief to many MS patients.
Jjpink wrote on September 6, 2017
Jjpink wrote:
I can say Dr S. Is absolutely still around. I spoke with him a couple of moths ago. Now the thing I need from all of you who may be reading is, is this REAL!! I've been watching and reading about this since the I can jump video. I've read everything including the stuff I didn't understand. People in my life tell me it's not medically proven and it won't help me. But I've seen all the people get better and I'm still waiting for someone to verify it. Which could take forever. And I'm still here getting worse. All you guys out there, please tell me, is all I see here true? Including Dr S being a good safe doctor? I beg anyone to answer me.
Cece wrote on Sept 17, 2017
For me I had real and lasting results (but I had no mobility issues so nothing to change there). I was treated by Dr. Sclafani, I consider him a very good and safe doctor. Yes, the wait to verify has been years and years at this point. Seven years since I first heard of it, six years since I was treated. Angioplasty however has been around for thirty years and is considered a safe and proven technique for clearing blocked blood vessels. For me, I was diagnosed by ultrasound and by MRI and by 2 different doctors (Dr. Sclafani and Dr. Cumming in Minneapolis). The MRI (actually MRV, an MRI of the veins) was particularly easy to see where the flow in my veins just ended, on both sides. So I would say CCSVI is very real, it's a condition of its own that impacts neurological health and seems to have a correlation with multiple sclerosis, and there's a treatment for it.
1eye wrote on September 18, 2017
I will find it terribly ironic if some neurologists ever start acknowledging that the central vein sign is the defacto means of diagnosing MS. I think the former "time and space" criteria are nothing but a way to get more MRIs done, and delay diagnosis, which is cruel. Radiologists are quite familiar with the central vein sign.
Delaying diagnosis does only one thing for the patient. With a diagnosis of MS, you may automatically lose insureability, so it may delay that unfortunate aspect. MS, when it is in the so-called Relapsing-Remitting phase, is very expensive to treat, given the extreme pricing of oral and injectable drugs. So you delay that expense.
Once you are diagnosed (in writing) you have what insurance companies like to call a "pre-existing condition". You are then not insureable by the US government, depending on if Trump manages to get rid of Obamacare. In Canada, it is a pre-existing condition. But, if the diagnosis was made after the insurance policy starts, you are still insured. Pre-existing conditions in one country may start at the time of diagnosis, while in another, they may have legally "existed" before diagnosis (even while still unknown). I doubt if Donald Trump understands this distinction, but it is a real one.
You see how standards of diagnosis may in some cases have legal and economic consequences?
Dr. Sclafani is a good safe doctor who uses IVUS (intra-vascular ultrasound) to examine the veins from the inside. This is the standard of care for CCSVI. He is also a professor at SUNY. He taught interventional radiologists.
The FDA has tried to make CCSVI treatments illegal, but that is completely up to the doctor doing the treatment, so there is nothing illegal about it. There are several doctors in the US who do it. In the US they will usually not offer stenting. That is because the pressure is low and flows towards the heart (stents in these conditions tend to come loose and move "downstream"). In Canada a patient died because the procedure was not done in Canada, so the medical system here abandoned him (even worse, made him fly out-of-country), even though he was experiencing complications.
Blood treatments used in the weeks following a CCSVI procedure (I was on Plavix for 12 months) may thin the blood. That has resulted in one US patient's death. The complication in that case may have been air travel while on blood thinners. Ask the doctor about blood treatments, and possibilites for follow-up examinations. Remember that travel to get this procedure complicates things. My follow-up was an ultrasound given in Barrie, Ontario. All my travel post-treatment was by car. I was already on Plavix for a heart stent, and I flew to Syracuse for the procedure. Just lucky, I guess, or the right cabin pressure, or something.
Don't be surprised if there are medical, legal, and political roadblocks. But don't be surprised either if it doesn't make you improve, or if improvements don't last. About 1/3 see improvements. Mine didn't all last, but some did. "I never promised you a rose garden."
_________________
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
1eye opens his post by mentioning the central vein sign which is the subject of my previous blog post on Sept 15, 2017.
Joan Beal’s definition : We've known for over a century that MS lesions are perivenous, meaning lesions form around a vein. There is a vein in the center of almost every cerebral MS lesion, and this makes the MS lesion unique.
Personal Note : My mother has just returned home to Washington State after visiting me in France which explains why my recent posts have featured primarily quotes of others’ work. Time now to get back to work on MSCureEnigmas.
Tags : CCSVI, MS, central vein sign, Dr. Sclafani
Dr. Sclafani , an Interventional Radiologist located in Brooklyn New York, is renowned for having pioneered venoplasty treatment of CCSVI stenosed veins in MS patients. For years he answered patient questions under the ThisisMS.com thread « Dr. Sclafani answers your questions. » The Administrator NHE with the assistance of Cece (see below) collected his CCSVI case studies on November 14, 2013 at the time of the one millionth view of his thread. The studies run from November 17, 2010 through May 14, 2014. (Dr. Sclafani began posting on TIMS March 13, 2010.) Dr. Sclafani continues to treat CCSVI for MS patients, though he makes no claims relating to MS. Rather, he frees obstructed blood flow in stenosed veins which has brought relief to many MS patients.
Jjpink wrote on September 6, 2017
Jjpink wrote:
I can say Dr S. Is absolutely still around. I spoke with him a couple of moths ago. Now the thing I need from all of you who may be reading is, is this REAL!! I've been watching and reading about this since the I can jump video. I've read everything including the stuff I didn't understand. People in my life tell me it's not medically proven and it won't help me. But I've seen all the people get better and I'm still waiting for someone to verify it. Which could take forever. And I'm still here getting worse. All you guys out there, please tell me, is all I see here true? Including Dr S being a good safe doctor? I beg anyone to answer me.
Cece wrote on Sept 17, 2017
For me I had real and lasting results (but I had no mobility issues so nothing to change there). I was treated by Dr. Sclafani, I consider him a very good and safe doctor. Yes, the wait to verify has been years and years at this point. Seven years since I first heard of it, six years since I was treated. Angioplasty however has been around for thirty years and is considered a safe and proven technique for clearing blocked blood vessels. For me, I was diagnosed by ultrasound and by MRI and by 2 different doctors (Dr. Sclafani and Dr. Cumming in Minneapolis). The MRI (actually MRV, an MRI of the veins) was particularly easy to see where the flow in my veins just ended, on both sides. So I would say CCSVI is very real, it's a condition of its own that impacts neurological health and seems to have a correlation with multiple sclerosis, and there's a treatment for it.
1eye wrote on September 18, 2017
I will find it terribly ironic if some neurologists ever start acknowledging that the central vein sign is the defacto means of diagnosing MS. I think the former "time and space" criteria are nothing but a way to get more MRIs done, and delay diagnosis, which is cruel. Radiologists are quite familiar with the central vein sign.
Delaying diagnosis does only one thing for the patient. With a diagnosis of MS, you may automatically lose insureability, so it may delay that unfortunate aspect. MS, when it is in the so-called Relapsing-Remitting phase, is very expensive to treat, given the extreme pricing of oral and injectable drugs. So you delay that expense.
Once you are diagnosed (in writing) you have what insurance companies like to call a "pre-existing condition". You are then not insureable by the US government, depending on if Trump manages to get rid of Obamacare. In Canada, it is a pre-existing condition. But, if the diagnosis was made after the insurance policy starts, you are still insured. Pre-existing conditions in one country may start at the time of diagnosis, while in another, they may have legally "existed" before diagnosis (even while still unknown). I doubt if Donald Trump understands this distinction, but it is a real one.
You see how standards of diagnosis may in some cases have legal and economic consequences?
Dr. Sclafani is a good safe doctor who uses IVUS (intra-vascular ultrasound) to examine the veins from the inside. This is the standard of care for CCSVI. He is also a professor at SUNY. He taught interventional radiologists.
The FDA has tried to make CCSVI treatments illegal, but that is completely up to the doctor doing the treatment, so there is nothing illegal about it. There are several doctors in the US who do it. In the US they will usually not offer stenting. That is because the pressure is low and flows towards the heart (stents in these conditions tend to come loose and move "downstream"). In Canada a patient died because the procedure was not done in Canada, so the medical system here abandoned him (even worse, made him fly out-of-country), even though he was experiencing complications.
Blood treatments used in the weeks following a CCSVI procedure (I was on Plavix for 12 months) may thin the blood. That has resulted in one US patient's death. The complication in that case may have been air travel while on blood thinners. Ask the doctor about blood treatments, and possibilites for follow-up examinations. Remember that travel to get this procedure complicates things. My follow-up was an ultrasound given in Barrie, Ontario. All my travel post-treatment was by car. I was already on Plavix for a heart stent, and I flew to Syracuse for the procedure. Just lucky, I guess, or the right cabin pressure, or something.
Don't be surprised if there are medical, legal, and political roadblocks. But don't be surprised either if it doesn't make you improve, or if improvements don't last. About 1/3 see improvements. Mine didn't all last, but some did. "I never promised you a rose garden."
_________________
This unit of entertainment not brought to you by FREMULON.
Not a doctor.
1eye opens his post by mentioning the central vein sign which is the subject of my previous blog post on Sept 15, 2017.
Joan Beal’s definition : We've known for over a century that MS lesions are perivenous, meaning lesions form around a vein. There is a vein in the center of almost every cerebral MS lesion, and this makes the MS lesion unique.
Personal Note : My mother has just returned home to Washington State after visiting me in France which explains why my recent posts have featured primarily quotes of others’ work. Time now to get back to work on MSCureEnigmas.
Tags : CCSVI, MS, central vein sign, Dr. Sclafani
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