Experimental MS treatments and the ethical issues.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Experimental MS treatments and the ethical issues.

Postby concerned » Wed Nov 24, 2010 3:58 pm

CBC Interview: Experimental MS treatments and ethical issues

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Postby Cece » Wed Nov 24, 2010 4:14 pm

Controlled clinical trials are only ethical if there are good reasons to believe a new treatment is as good as -- and perhaps better than -- a standard of care. That way, doctors performing these studies do not violate their duty to advance the best interests of patients who enrol. So in the case of venous angioplasty, trials would be ethical if there is solid evidence that venous insufficiency is a plausible hypothesis. We might get this from large, well-designed observational studies of MS patients. Animal experiments could also be informative. I am not a neurologist, but my understanding is the CCSVI theory is not nailed down, and cannot account for a number of features about the course of MS.

:roll:
bring on the mice!

Seriously, currently the standard of care for venous cerebral outflow obstructions is to treat them through venoplasty. This includes jugular thrombosis, implanted-catheter-caused stenosis, AVM, etc. CCSVI would appear to have much in common with this group for which the standard of care is clear.
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Postby concerned » Wed Nov 24, 2010 4:17 pm

Except in the CCSVI group it is to relieve MS symptoms, which don't appear in any of those other cases. I don't think anyone with MS gets swollen, blue necks, which is something that happens in these other instances where people get venoplasty or stenting that you listed.
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Postby concerned » Wed Nov 24, 2010 4:19 pm

Q: Some Canadian MS patients who have undergone the procedure and experienced complications have complained that doctors here have been unwilling to offer followup treatment. Could you explain the extent of a Canadian doctor's ethical obligation to treat these patients?

Doctors shouldn't ever judge their patients and treat them differently based on how they became injured. If someone gets injured in Mexico and returns to Canada for treatment, it shouldn't matter whether the injuries occurred from cliff diving, charity work or seeking non-validated treatments like venous angioplasty.

Q: Is a Canadian doctor obligated to redo a vein-opening procedure if the patient has complications?

No. A doctor would be obligated to treat the complications. However, if offering the procedure in the first place is ethically suspect, I don't see why a doctor would be obligated to provide the procedure once a patient suffers complications from it.
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Postby Cece » Wed Nov 24, 2010 4:26 pm

superior vena cava syndrome should've been on my list too. It has similar symptoms to CCSVI (cogfog, fatigue) that are relieved immediately after venoplasty.
No. A doctor would be obligated to treat the complications. However, if offering the procedure in the first place is ethically suspect, I don't see why a doctor would be obligated to provide the procedure once a patient suffers complications from it.

Such a narrow line to walk. One of the ways to treat a restenosing or clotting vein is to perform venoplasty.
Except in the CCSVI group it is to relieve MS symptoms, which don't appear in any of those other cases.

No, what I am hoping for when I receive CCSVI venoplasty is a relief of CCSVI symptoms. My worst symptom is terrible "MS" fatigue. Now I know that it may in fact be terrible CCSVI fatigue due to bilateral jugular obstructions that are, thankfully, treatable. :wink:
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Postby concerned » Wed Nov 24, 2010 4:31 pm

Cece wrote:superior vena cava syndrome should've been on my list too. It has similar symptoms to CCSVI (cogfog, fatigue) that are relieved immediately after venoplasty.


And does this cause lesions as seen in MS?
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Postby Cece » Wed Nov 24, 2010 4:33 pm

concerned wrote:
Cece wrote:superior vena cava syndrome should've been on my list too. It has similar symptoms to CCSVI (cogfog, fatigue) that are relieved immediately after venoplasty.


And does this cause lesions as seen in MS?

concerned, I do not understand. IRs are treating CCSVI, not MS. They do not have the expertise to treat MS. Hopefully they will have a neurologist partner, since MS is highly associated with the CCSVI patients they are treating.
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Postby concerned » Wed Nov 24, 2010 4:42 pm

But just to be sure, as in the title of the article, we are talking about an MS treatment, right?
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Postby Cece » Wed Nov 24, 2010 4:52 pm

concerned wrote:But just to be sure, as in the title of the article, we are talking about an MS treatment, right?

What do you think? Can you treat MS by opening veins?

Or can you treat a venous outflow obstruction disorder (highly associated with MS) by opening veins?

The latter rings more true. But less grabby as a headline, so I doubt the journalists will go for it. :wink: :wink:
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Postby concerned » Wed Nov 24, 2010 4:56 pm

Cece wrote:Or can you treat a venous outflow obstruction disorder (highly associated with MS) by opening veins?



I don't think there's a consensus on venous outflow obstructions being highly associated with MS, so I wouldn't go either way.
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Postby Cece » Wed Nov 24, 2010 5:15 pm

concerned wrote:
Cece wrote:Or can you treat a venous outflow obstruction disorder (highly associated with MS) by opening veins?



I don't think there's a consensus on venous outflow obstructions being highly associated with MS, so I wouldn't go either way.

This was the take-away from ECTRIMS. CCSVI venous outflow obstructions were highly associated with MS to the extent that debate shifted to what caused what.
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Postby concerned » Wed Nov 24, 2010 5:26 pm

How many of these studies looked at healthy controls? Isn't it possible that the data indicating that stenosis seems to be a factor in later stages of MS (Zavidanov) might be simply a consequence of aging? Have any of these studies considered age? If everything else starts getting out of whack, might not the veins get out of whack as well?

Also, there was a contingent at ECTRIMS who were saying there was no correlation between venous outflow obstructions and MS, so there was hardly a consensus on this.
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Postby Cece » Wed Nov 24, 2010 5:45 pm

concerned, it is your right to continue to question for yourself, but I am satisfied at the association that has been shown between CCSVI and MS.

All the best to your mom, who by every account is fortunate to have you for a son.
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Postby concerned » Wed Nov 24, 2010 5:50 pm

Cece wrote:concerned, it is your right to continue to question for yourself, but I am satisfied at the association that has been shown between CCSVI and MS.

All the best to your mom, who by every account is fortunate to have you for a son.


Thanks Cece, that really means a lot.

Once again, in no way am I preventing my mother from getting "liberated". If the opportunity should arise, I'd help her do what ever she wanted because she can't do it herself. My mothers choices are her own, regardless of what I think of them, and if she needs help to do the things she chooses, then I'll help her.
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Postby formyruca » Wed Nov 24, 2010 8:25 pm

Concerned,

I feel you are not being proactive enough. Perhaps I am wrong and there are other factors involved. If there are financial factors, I would be willing to help. Please at least see for yourself and get her scanned and then you can consult with a Dr. on how to proceed.

Like I said, I am willing to help with the costs. BTW, I was ballooned today and I am going to be a lot more vocal now that I feel the results for myself. Maybe you could start a fundraiser?

If it was you that had MS, you would do it.

My IR told me about a 71 old that was out of wheelchair after the procedure.

I'm sorry I implied you are not taking care of her... I would hope you are.
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