Hamilton - CCSVI Workshop - Summary

Summary Comments on the CCSVI Workshop in Hamilton February 2010
E. Mark Haacke

Does an MR scan affect iron in the brain?
An MRI would have no effect on iron in the brain that we know. OLYMPUS DIGITAL CAMERA

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 asand 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 HYPERLINK “http://www.ms-mri.com” \o “http://www.ms-mri.com/www.ms-mri.comfor 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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  • Margohamilton
    I experience my first MS attach when I was 10 years old, which was 48 years ago. I had attacks every 5 years until the lat 1980', diagnosed in 1992 with secondary progressive MS. I am willing to do whatever it takes to get a diagnoses of CCSVI and obtain the Liberation Treatment - whatever the cost. I want the chance to regain my life.

    Margo Hamilton margohamilton@shaw.ca
  • Marlene
    I am being seen by a neurologist at St. Joseph's Health Centre, Hamilton, On. I would like to be placed on a trial or study re the CCSVI treatment. I would be willing to pay for the treatment when it becomes available. Living with MS is not living.
  • Ashley
    Also wanted to make note that my brother, perfectly healthy 32 year old has had 2 blood clots with no origin known. Both developed in his jugular vein. He is on blood thinners for the rest of his life, I wonder if there would be some connection there.
  • Ashley
    I have a few questions that I can't seem to find answers to. I have been seeing an MS neurologist for almost 5 years, I have been having increased symtoms with very few remissions that my Dr. believes at some point should eventually point to MS as the culprit. The problem is that there is increasing damage being done to my body, tremor, hyper-reflexes, pupillary reflex issues, mobility issues with some attacks and on and on. Problem is the MRI's show no plaques!! Is it possible that it could be CCSVI? We are at a loss. I just had an MRI the other night...again. Would CCVSI show up or would they have to be looking for that specifically?
  • Geraldine Boyd
    Michele Findlay
    Can you tell me where you daughter had the CCSVI procedure done.
  • Michele Findlay
    Re Imaging of MS patients, it might be of interest to note that even more than one imaging method may not reveal stenosis in neck veins. My daughter who has just undergone surgery for CCSVI had a MRV and a colour doppler done before the LIBERATION procedure and although her tests showed some anomalies there was no sign of where it was located beyond the fact that it was on the right of her neck. During the venogram however the surgeons were able to see where the problem was and perform a PTA. Without the experience and forsesight of Dr Simka, she would have gone home untreated. Which would have been a shame since she is now making a steady recovery.
  • Victoria793
    Where did she have the procedure performed?
  • K01philip
    My friend had the same problem. He had MRV and Doppler ultrasound done and they reported only 30% closure in two of his veins (not sure of names) when he decided to go with the liberation treatment as his only hope of getting back on his feet, they discovered that he had more clogged veins, and the two were somewhere around 75% and 85% closed. Another friend with the same story that I know of. They both got rid of numbness, fatigue, bladder problems, and heat intolerance

    Although the scans indicated closure, they were not absolutely correct. I have decided to get scanned, but might pursue catheterization as well since it seems to be the only means for accurate information
  • Gerianne Harper
    I have ppms and am really interested in being placed in a trial or study having this ccvsi treatment done.
    thank you gharps@shaw.ca Gerianne Harper
  • Maxine
    This excellent summary answers a lot of questions and poses new ones. The question for me was which is the best method to diagnose CCSVI ( which is now classified as a disease in itself) both ultrasound and MRI are very important. MRI can create full 3D vascular information 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.
    An important message is to continue with your MS therapy. The only reason I am not on a therapy is because there are no further options for disease modifying drug therapies and I had an adverse reaction to gabapentin which is meant to manage symptoms.
    The next step as I think you being the author has said before, we should ask to be referred to a Vascular surgeon, be examined for CCSVI and if that is possible have the procedure that repairs that which is already being performed in Canadian hospitals now.
    Do the hospitals have the correct equipment in this case and would it have to be diagnosed a little bit differently if you had MS?
  • Dale Woolsey
    Very interesting. What diseases other than MS are related to CCSVI? This is the first time I heard of CCSVI. I suspect it could be related to heart & circulation problems as well as MS. No mention until Dr. Zamboni referred to MS
    Dale
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