8 thoughts on “Chronic cerebrospinal venous insufficiency and MS”
I notice you fail to post the 10 Pubmed Articles on CCSVI and MS which have a positive emphasis, published at the same time as your one negatively biased article.Any particular reason for this?Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. Pubmed PMID: 20351666Hemodynamic patterns of chronic cerebrospinal venous insufficiency in multiple sclerosis. Correlation with symptoms at onset and clinical course Pubmed PMID: 20351674 Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis Pubmed PMID: 20351667 The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis Pubmed PMID: 20351668Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls Pubmed PMID: 20351669CSF dynamics and brain volume in multiple sclerosis are associated with extracranial venous flow anomalies: a pilot study Pubmed PMID: 20351670Iron stores and cerebral veins in MS studied by susceptibility weighted imaging Pubmed PMID: 20351671 Chronic cerebrospinal venous insufficiency and iron deposition on susceptibility-weighted imaging in patients with multiple sclerosis: a pilot case-control study Pubmed PMID: 20351672Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study Pubmed PMID: 20351673 Chronic cerebro-spinal venous insufficiency: report of transcranial magnetic stimulation follow-up study in a patient with multiple sclerosis Pubmed PMID: 20351675
When you do a quick search on PubMed using the terms "CCSVI" and "multiple sclerosis" you get 15 articles. Twelve out of 15 of the articles are from the same group or closely linked to the same group. What we now need are the results of a large number of studies being conducted by other independent groups. To prove that something causes MS is a complex science; CCSVI doesn't come close to ticking any of the boxes that are necessary for proving causation. Please watch this space.
What we actally need now (said an intelligent adult who has been diagnosed with MS), is to have governments AND the medical community acknowledge that this treatment is something which 'MS' patients/adults who've been diagnosed with MS have the RIGHT to have this treatment if WE choose.Show us the respect we deserve as equal human beings with RIGHTS!!!
Having been diagnosed 16 years ago, and currently in the secondary progessive stage, the reality of the urgency needed for treatment cannot be ignored. I find it interesting that doctors have no problem with the risks associated with Tysabri, yet are so vehement regarding the risks of angioplasty. Seems to me, angioplasty is safer than Tysabri. I know the placebo effect keeps surfacing among the naysayers, but you CANNOT ignore the patients. We know our own bodies. Unless you have suffered with this disease, you do not understand what it feels like and if you have had a symptom for years, only to have them dissipate after treatment, this should not be taken lightly. I had a spinal chord tumor ignored by at least 3 doctors, who all told me it was the MS. I repeatedly told them it felt different and I knew it was not the MS, only to be ignored for months and months. When I finally had the MRI done of my neck (previous MRI's were done of the brain) I was told I would have been paralyzed without a doubt had this not been found when it was. Again, several specialists told me the symptoms based on the tumour's location did not seem typical or plausible to them. A classic case that illustrates, there is so much that we do not know…All of these specialists were wrong…I knew what my body felt like…This disease is varied and many factors may contribute to various symptoms and maybe different treatment modalities may help some and not others. Because it is a paradigm shift does not mean there may not be validity in the theory. I have been told my migraines appear vascular, as well as the coldness in my feet and hands. Is this a cause or a result of the disease? There is much to learn still, but I would run at the chance for relief, my progression from last year to now has accelerated. I want to be able to make my own choice whether or not to take the risk….
Gavin Giovannoni said… "When you do a quick search on PubMed using the terms "CCSVI" and "multiple sclerosis" you get 15 articles. Twelve out of 15 of the articles are from the same group or closely linked to the same group. What we now need are the results of a large number of studies being conducted by other independent groups. To prove that something causes MS is a complex science; CCSVI doesn't come close to ticking any of the boxes that are necessary for proving causation." HI Gavin,I take it you haven't read (or have ignored) the published peliminary results from the Buffalo study then?Of course more research needs to be done, but to dismiss CCSVI out of hand, inspite of the growing evidence smacks highly of "vested interest". Can we assume that Barts & The Londn will be participating in, or instigating studies into CCSVI?A lot of people with MS have not got the TIME to wait around whilst studies are carried out, and, if they are told of any inherrant riskes, as with any surgical procedure, AND THEY CONSENT who can deny them the CHANCE of an alleviation of their symptoms and the POSSIBLE cessation of further deterioraton?No one is calling this a "cure", but if it can halt progression and bring relief it can do more than any of the current (and forthcoming) medications without any of the serious, and in some cases, life-threatening side effects.
Sad is that one more Colin Rose is trying to rise. I thought we had reached the point that everyone just needs to shut up and realize that the train cannot be stopped. But it seems i was wrong.Please, i urge you, before it is too late and you become a Colin Rose like trol. We MS patients do not need your suggestions. We have a mind of our own. Unless you can offer another vital solution to our nightmare (for which you obviously have no clue about) you should stop making patients afraid. In fact you should try to promote the research further so the "dangers" you talk about will be eventually eliminated.People, please, dont give a shit for anyone who just talks without scientific evidence. Please, let this post be the last in here.
The article you link to appears to be a reasonable call for more research and scientific debate on the topic of CCSVI. It points out the general agreement that this research is needed. What perplexes me is the motivation for your one-line commentary where you refer to this as a "nail in the coffin for CCSVI". Since when is a call for research a nail in a coffin?
I notice you fail to post the 10 Pubmed Articles on CCSVI and MS which have a positive emphasis, published at the same time as your one negatively biased article.Any particular reason for this?Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. Pubmed PMID: 20351666Hemodynamic patterns of chronic cerebrospinal venous insufficiency in multiple sclerosis. Correlation with symptoms at onset and clinical course Pubmed PMID: 20351674 Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis Pubmed PMID: 20351667 The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis Pubmed PMID: 20351668Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls Pubmed PMID: 20351669CSF dynamics and brain volume in multiple sclerosis are associated with extracranial venous flow anomalies: a pilot study Pubmed PMID: 20351670Iron stores and cerebral veins in MS studied by susceptibility weighted imaging Pubmed PMID: 20351671 Chronic cerebrospinal venous insufficiency and iron deposition on susceptibility-weighted imaging in patients with multiple sclerosis: a pilot case-control study Pubmed PMID: 20351672Is chronic fatigue the symptom of venous insufficiency associated with multiple sclerosis? A longitudinal pilot study Pubmed PMID: 20351673 Chronic cerebro-spinal venous insufficiency: report of transcranial magnetic stimulation follow-up study in a patient with multiple sclerosis Pubmed PMID: 20351675
When you do a quick search on PubMed using the terms "CCSVI" and "multiple sclerosis" you get 15 articles. Twelve out of 15 of the articles are from the same group or closely linked to the same group. What we now need are the results of a large number of studies being conducted by other independent groups. To prove that something causes MS is a complex science; CCSVI doesn't come close to ticking any of the boxes that are necessary for proving causation. Please watch this space.
What we actally need now (said an intelligent adult who has been diagnosed with MS), is to have governments AND the medical community acknowledge that this treatment is something which 'MS' patients/adults who've been diagnosed with MS have the RIGHT to have this treatment if WE choose.Show us the respect we deserve as equal human beings with RIGHTS!!!
Having been diagnosed 16 years ago, and currently in the secondary progessive stage, the reality of the urgency needed for treatment cannot be ignored. I find it interesting that doctors have no problem with the risks associated with Tysabri, yet are so vehement regarding the risks of angioplasty. Seems to me, angioplasty is safer than Tysabri. I know the placebo effect keeps surfacing among the naysayers, but you CANNOT ignore the patients. We know our own bodies. Unless you have suffered with this disease, you do not understand what it feels like and if you have had a symptom for years, only to have them dissipate after treatment, this should not be taken lightly. I had a spinal chord tumor ignored by at least 3 doctors, who all told me it was the MS. I repeatedly told them it felt different and I knew it was not the MS, only to be ignored for months and months. When I finally had the MRI done of my neck (previous MRI's were done of the brain) I was told I would have been paralyzed without a doubt had this not been found when it was. Again, several specialists told me the symptoms based on the tumour's location did not seem typical or plausible to them. A classic case that illustrates, there is so much that we do not know…All of these specialists were wrong…I knew what my body felt like…This disease is varied and many factors may contribute to various symptoms and maybe different treatment modalities may help some and not others. Because it is a paradigm shift does not mean there may not be validity in the theory. I have been told my migraines appear vascular, as well as the coldness in my feet and hands. Is this a cause or a result of the disease? There is much to learn still, but I would run at the chance for relief, my progression from last year to now has accelerated. I want to be able to make my own choice whether or not to take the risk….
Gavin Giovannoni said… "When you do a quick search on PubMed using the terms "CCSVI" and "multiple sclerosis" you get 15 articles. Twelve out of 15 of the articles are from the same group or closely linked to the same group. What we now need are the results of a large number of studies being conducted by other independent groups. To prove that something causes MS is a complex science; CCSVI doesn't come close to ticking any of the boxes that are necessary for proving causation." HI Gavin,I take it you haven't read (or have ignored) the published peliminary results from the Buffalo study then?Of course more research needs to be done, but to dismiss CCSVI out of hand, inspite of the growing evidence smacks highly of "vested interest". Can we assume that Barts & The Londn will be participating in, or instigating studies into CCSVI?A lot of people with MS have not got the TIME to wait around whilst studies are carried out, and, if they are told of any inherrant riskes, as with any surgical procedure, AND THEY CONSENT who can deny them the CHANCE of an alleviation of their symptoms and the POSSIBLE cessation of further deterioraton?No one is calling this a "cure", but if it can halt progression and bring relief it can do more than any of the current (and forthcoming) medications without any of the serious, and in some cases, life-threatening side effects.
Sad is that one more Colin Rose is trying to rise. I thought we had reached the point that everyone just needs to shut up and realize that the train cannot be stopped. But it seems i was wrong.Please, i urge you, before it is too late and you become a Colin Rose like trol. We MS patients do not need your suggestions. We have a mind of our own. Unless you can offer another vital solution to our nightmare (for which you obviously have no clue about) you should stop making patients afraid. In fact you should try to promote the research further so the "dangers" you talk about will be eventually eliminated.People, please, dont give a shit for anyone who just talks without scientific evidence. Please, let this post be the last in here.
The article you link to appears to be a reasonable call for more research and scientific debate on the topic of CCSVI. It points out the general agreement that this research is needed. What perplexes me is the motivation for your one-line commentary where you refer to this as a "nail in the coffin for CCSVI". Since when is a call for research a nail in a coffin?
It is a question not a statement.