http://www.facebook.com/pages/CCSVI-in- ... 2347471856“Does an MR scan affect iron in the brain?”An MRI would have no effect on iron in the brain that we know.
“Can surgery on the valves affect stenoses distal to the subclavian?”Proximal surgery of valves and return of normal flow and pressure differentials may lead to opening of distal stenoses. This will take more experience but there may be preliminary evidence to this effect.
“When should one operate?”The NASCET trial for carotid endarterectomy recommended 70% stenosis before operating.
“Should MS subjects be imaged before surgery?”Patients need to be imaged to see what fraction of MS patients have CCSVI. Imaging is a non-invasive safe procedure that can help determine the state of the vessels and flow in the veins. Most importantly in how many of them is it so serious that they meet the venous vascular truncation consensus document's criteria for CCSVI.
“Will patients with the most serious form be operated on today?”There is a consensus document signed by professionals from 47 countries that discuss surgery for CCSVI patients. In many cases, the abnormal venous behavior may be referred to as venous truncular malformations. The guidelines given in “Diagnosis and treatment of venous malformations Consensus Document of the International Union of Phlebology (IUP)-2009” by Lee et al in International Angiology 28: 434-451; 2009 discuss how to deal with these truncular venous malformations.
“How can we relate this disease to the conditions of MS?”That research will likely take years and will need proper blinded approaches. Those patients who have been treated will need to be followed neurologically and via imaging to determine what effect if any the treatment has had. All these considerations require an appropriate statistical analysis although the first is likely to be the simplest blinded study with imaging blinded to the patient type and then percentage stenosis seen in normals versus patients quantified after unblinding.
“Should patients contiue their drug treatment regimen?”Treatment may help the MS patient but it is important to understand that even if one stops the disease process that inflammation and other tissue damage is still present. Drug treatments are still likely to be a key component of recovery and you should make sure you follow your doctor’s advice and do not unilaterally stop taking medicine.
“What do the results of the Zivadinov study mean?”The current CCSVIMRI protocol that Dr. Zivadinov reported includes both MRV and flow quantification. MR flow quantification is as good as and perhaps even better than ultrasound. With these two features together, MR can catch a lot of the abnormal vessels. Further, MRI can create full 3D vascular information from the aortic arch to the top of the brain. Doppler is also more operator dependent than the MRI. But ultrasound can image the valves and septum in the veins which MRI can not do. So together they make a good combination with flow acting as a common link between them. In summary, both ultrasound and MRI are very important. As in any technological applications, imaging methods will only get better over time and our ability to diagnose CCSVI will get better. The imaging methods only suggest CCSVI, the final proof of the pudding comes in the angiographic data itself prior to or during surgery (if something is found). There is nothing like direct evidence from the source itself. Finally,MRI is acritical assessment tool, especially from the neurological perspective. We can image the brain pre and post intervention using MRI to measure atrophy, whether or not and how much iron is present, and if the veins are still patent. Please visit
http://www.ms-mri.com for more information on MRI and ultrasound in CCSVI.
“What would be the safest contrast dye because some of us have allergies.”The contrast agent used in MRI is the chemical GdDTPA and there are a number of possible side effects. Please refer to your doctor about this one
“If one trys to ``detox`` (i.e., chelate) the iron out before having the veins widened will that help?”We do not know if iron chelators help or not - but it would be nice to have a measure of what is there prior to surgery so that the iron content can be followed over time. A multi-echo T2 or T2* method can be used to create T2 or T2* maps or the filtered phase from an SWI scan can be used to establish a baseline amount of iron.”
“After 18 months some relapsed ...was it because of continued iron accumulation?”The iron may not be the cause, it may be that the veins restenosed.
“How can I approach my doctors about the developments in CCSVI?”Perhaps we need to stop saying that CCSVI is related to the etiology of MS but rather simply point out that there is another disease out there called CCSVI and many MS patients have it. Please review the following summary and consider the work on carotid endarterectomies andthe NASCET trial. A similar study can be done in time with CCSVI as well. A general comment about this procedure to bear in mind is that CCSVI is a problem in and of itself and need not be related to MS. It just so happens that many more MS patients suffer from this condition. So one has to ask the question, “Would carotid endarterectomy not be used today on an MS patient if they met the 70% stenosis criteria?” Of course it would be. There are similar standards today for venous surgeries. There is a consensus document signed by professionals from 47 countries that discuss surgery for CCSVI patients. In many cases, the abnormal venous behavior may be referred to as venous truncular malformations. The guidelines given in “Diagnosis and treatment of venous malformations Consensus Document of the International Union of Phlebology (IUP)-2009” by Lee et al in International Angiology 28: 434-451; 2009 discuss how to deal with these truncular venous malformations.
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Ik zeg: Hier kunnen we wel wat mee!
Even kortweg samengevat:
- Onderzoek relatie CCSVI & MS gaat nog jaren duren
Artsen aanzetten tot:
- Alle MS'ers testen op hoeveel stenosis
- 70% stenosis -> opereren
- stoppen MS te koppelen aan CCSVI, CCSVI beschouwen als nieuwe ziekte en zonodig behandelen
- er zijn richtlijnen voor opereren
Toch een schub na 18 maanden?
- dat ligt waarschijnlijk niet aan de ijzeropslag in je hersenen maar aan restonosis van de aderen
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