Alyoop
Very helpful member
- Joined
- Jul 5, 2010
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- 1,796
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- DX UMND/PLS
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- NZ
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- NZ
Although the controversy surrounding CCSVI is associated with MS, people with ALS have discussed the possibility of having the treatment to ? Improve their ALS. This is the only reason that I think this discussion is important.
Yesterday at the ECTRIMS conference that I am attending in Goteburg, the Charcot foundation chose this as the topic for the symposium.
Approx. 5000 neurologists attended. I am presenting to you a very brief synopsis of what was discussed.
Dr Zamboni and his team presented his research findings. For those that are not aware of his findings, he found that 100% of MS subjects that he studied, had the ccsvi abnormality. Since the initial study, his team has been unable to come up with the same findings.
The world was extremely interested in the possibility, therefore many countries have copied The original protocol. Dr Doepp from Berlin presented that he could not come up with any evidence of ccsvi in his study. Other study teams have the same findings.
It was found that the Doppler scanning technique was plagued with false positives and was a very poor radiological investigation for ccsvi. Subjects that appear to have ccsvi after Doppler were found to have totally normal venous flow when tested with angiography.
Dr Kahn from USA did a very good talk about the fact that ccsvi would cause venous problems within the brain e.g venous hypertension, optic nerve oedema amoung other things. None of which MS patients have.
He was concerned about the people rushing to have invasive treatment eg implantation of venous stents, with no evidence of ccsvi, or evidence that it will improve any neurological symptoms. It is invasive and dangerous. Stents placed in the venous system have the risk of coming lose and traveling to the heart with fatal consequences .
He said that one of the biggest problems is the unproven hope that it has given many MS sufferers. Much money making has been had from the radiographers etc. He described it as "amputation of hope"
Dr Zamboni emphasized during his talk, that no one should be under going invasive procedures unless they are involved in a clinical trial.
It was agreed that in the interest of patient safety, interventional radiologists should continue their studies to determine the safety and efficacy of this form of treatment.
The chairman congratulated him for this comment at the end and asked him to repeat it.
MS has many disease modifying treatments that are proving effective. It is widely agreed that MS is an autoimmune disease (?cause) therefore disease targeting treatments are improving constantly, with many oral preparations about to come on the market.
For anyone with ALS wanting this unproven treatment, you must research the risks, be aware that no science supports the intervention or the theory at this moment. If you have a Doppler scan telling you you have ccsvi, then it is most probably incorrect and you would need an angiogram to confirm it. If you find a dr willing to do the stent, you need to ask yourself why, as it is not evidence based medicine.
It is also important to realize that many people will of course improve temporarily after a procedure that they think will help, just due to their beliefs. What you need to do is wait until the patients who have undergone the procedure have sustained the improvement. Therefore allowing the placebo effect to dissipate.
The important thing is to look after yourselves and do a lot of evidence based research, listening to both sides of the story. I could provide you with links to information if you require.
Aly
Yesterday at the ECTRIMS conference that I am attending in Goteburg, the Charcot foundation chose this as the topic for the symposium.
Approx. 5000 neurologists attended. I am presenting to you a very brief synopsis of what was discussed.
Dr Zamboni and his team presented his research findings. For those that are not aware of his findings, he found that 100% of MS subjects that he studied, had the ccsvi abnormality. Since the initial study, his team has been unable to come up with the same findings.
The world was extremely interested in the possibility, therefore many countries have copied The original protocol. Dr Doepp from Berlin presented that he could not come up with any evidence of ccsvi in his study. Other study teams have the same findings.
It was found that the Doppler scanning technique was plagued with false positives and was a very poor radiological investigation for ccsvi. Subjects that appear to have ccsvi after Doppler were found to have totally normal venous flow when tested with angiography.
Dr Kahn from USA did a very good talk about the fact that ccsvi would cause venous problems within the brain e.g venous hypertension, optic nerve oedema amoung other things. None of which MS patients have.
He was concerned about the people rushing to have invasive treatment eg implantation of venous stents, with no evidence of ccsvi, or evidence that it will improve any neurological symptoms. It is invasive and dangerous. Stents placed in the venous system have the risk of coming lose and traveling to the heart with fatal consequences .
He said that one of the biggest problems is the unproven hope that it has given many MS sufferers. Much money making has been had from the radiographers etc. He described it as "amputation of hope"
Dr Zamboni emphasized during his talk, that no one should be under going invasive procedures unless they are involved in a clinical trial.
It was agreed that in the interest of patient safety, interventional radiologists should continue their studies to determine the safety and efficacy of this form of treatment.
The chairman congratulated him for this comment at the end and asked him to repeat it.
MS has many disease modifying treatments that are proving effective. It is widely agreed that MS is an autoimmune disease (?cause) therefore disease targeting treatments are improving constantly, with many oral preparations about to come on the market.
For anyone with ALS wanting this unproven treatment, you must research the risks, be aware that no science supports the intervention or the theory at this moment. If you have a Doppler scan telling you you have ccsvi, then it is most probably incorrect and you would need an angiogram to confirm it. If you find a dr willing to do the stent, you need to ask yourself why, as it is not evidence based medicine.
It is also important to realize that many people will of course improve temporarily after a procedure that they think will help, just due to their beliefs. What you need to do is wait until the patients who have undergone the procedure have sustained the improvement. Therefore allowing the placebo effect to dissipate.
The important thing is to look after yourselves and do a lot of evidence based research, listening to both sides of the story. I could provide you with links to information if you require.
Aly
