some great posts over on Dr. Arata's facebook page today

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

Re: some great posts over on Dr. Arata's facebook page today

Postby Cece » Sun Feb 10, 2013 9:41 am

CureIous wrote:There's a reason Mike left this venue, he cant take the heat. Or answer the questions that need answering. If he can come on here and explain one good reason for those crappy, mandatory 5 thousand dollar MRV's he charges for, well maybe my opinion will change.

Here was his explanation for the MRVs, given over on CCSVI Locator. This was in 2011 and so his techniques may have evolved since then.
http://ccsvi-ms.ning.com/profiles/blog/ ... 4#comments
Absolutely Haacke [MRV] influences treatment. First there is usually a dominant vessel based on flow. This may not be evident venographically. Addressing this vessel should be a priority. Across the board knowing the Anatomy ahead of time reduced procedure time, contrast and radiation. End result is improved safety.
http://ccsvi-ms.ning.com/profiles/blog/ ... 4#comments
I continue to think it is an unnecessary expense but he is the one in the OR.
I don't want to argue against multimodal imaging. Does a preprocedure MRV count as multimodal imaging? The problem is that patients are self-paying.
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Re: some great posts over on Dr. Arata's facebook page today

Postby Cece » Sun Feb 10, 2013 9:47 am

HappyPoet wrote:Mark, I'd be happy if Dr. Arata has started to use IVUS routinely, especially if he has the equipment:

Somewhere I got the idea that he is now using it on every patient. But I don't have a link for that so it might not be true.

No, I have a link!
Intravascular Ultrasound (IVUS) is used in the evaluation of every patient. It provides the most detailed images of the veins and valves. The combination of IVUS and venography dramatically increases the precision of the diagnostic evaluation when comapred to using venography alone.
http://www.synergyhealthconcepts.com/diagnosis/
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Re: some great posts over on Dr. Arata's facebook page today

Postby HappyPoet » Sun Feb 10, 2013 10:13 am

Thanks, Nigel, for posting the interesting conversation.
Thanks, Mark, for clarifying. Looking forward to learning about this new treatment method.
Thanks, Cece. I wonder what changed Dr. Arata's mind on using IVUS:

Endovasc wrote:IVUS is a useful toll for evaluation of vascular abnormalities. When I first started I used it on almost all cases. It is however an anatomic imaging modality. Specifically it doesn't assess flow

What has become clear is that CCSVI is a disorder of flow. Diagnosis and treatment rest on venographic evaluation of flow. Anatomic data plays a role but what matters is the flow. I will not speak in terms of stenosis when discussing CCSVI and I urge others to follow suite. At least i/3 of patients in our practice with CCSVI, have NO stenosis. FLOW IS THE ISSUE.

IVUS can help find lesions that are impeding flow in challenging cases. I rely on it for them. If IVUS interrogation is a focus of routine CCSVI evaluation then the focus is deviating towards anatomy and away from flow.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17138-30.html#p169962

Endovasc is Dr. Arata.
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Re: some great posts over on Dr. Arata's facebook page today

Postby CureIous » Sun Feb 10, 2013 5:41 pm

HappyPoet wrote:Thanks, Nigel, for posting the interesting conversation.
Thanks, Mark, for clarifying. Looking forward to learning about this new treatment method.
Thanks, Cece. I wonder what changed Dr. Arata's mind on using IVUS:

Endovasc wrote:IVUS is a useful toll for evaluation of vascular abnormalities. When I first started I used it on almost all cases. It is however an anatomic imaging modality. Specifically it doesn't assess flow

What has become clear is that CCSVI is a disorder of flow. Diagnosis and treatment rest on venographic evaluation of flow. Anatomic data plays a role but what matters is the flow. I will not speak in terms of stenosis when discussing CCSVI and I urge others to follow suite. At least i/3 of patients in our practice with CCSVI, have NO stenosis. FLOW IS THE ISSUE.

IVUS can help find lesions that are impeding flow in challenging cases. I rely on it for them. If IVUS interrogation is a focus of routine CCSVI evaluation then the focus is deviating towards anatomy and away from flow.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17138-30.html#p169962

Endovasc is Dr. Arata.


This isn't that difficult, if Dr Arata has such a line on this, he
should have no problem coming in here with some rock solid numbers.

Problem is, he does NO follow up, and has no idea the current nature of his former
patients. I challenge him to post the real numbers. He won't, because he can't.

We are guinea pigs.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: some great posts over on Dr. Arata's facebook page today

Postby CureIous » Wed Feb 13, 2013 12:01 am

HappyPoet wrote:Mark, it's good to see you here again. I applaud you for posting what you believe.

I wonder--does Dr. Arata refuse to treat patients who don't want the MRV? He talks about having done 2,000 CCSVI procedures, but none of those were done using IVUS because he didn't want to invest money into acquiring (purchasing or leasing) the equipment. Please correct me if I'm wrong, but doesn't $5,000 x 2,000 = $10,000,000 TEN MILLION DOLLARS??? Seems to me he could easily afford to start to use IVUS. I feel so sorry for all his patients who paid all that money and didn't receive complete procedures.



I have yet to hear of anyone being treated that wasn't mandated to receive the scans, and yes, it is a crapload of money. The second I started asking him probing questions, he stopped responding to my emails, concerning a friends daughter that was seeing him. Not offensive questions, probing questions in a respectful manner. I believe us ccsvi'ers are being done a TREMENDOUS disservice, not just from a financial POV, but in overall treatment, particularly in followup. They aren't being entered into any meaningful database nor registry. just like a bunch of cattle, NEXT! I am beyond disgusted. I hold medical professionals to the highest standards, when they start behaving like this, well I have no problem whatsoever questioning their integrity, or motives.

On a lighter note, getting back to this other Doctor, I had seen him as I said on unrelated matters, my treatment came up as a matter of previous medical history and he's been a ball of fire ever since. Since he heard about this through me, I get all his latest stuff, and it is impressive. He served his bonafides on the battlefields of the Iran Iraq war, with little equipment nor supplies, he saved limbs using novel treatments (and the pictures would blow you away trust me), and never gave up on the most hopeless of cases. He believes he can treat this using non-invasive, non-chiro, has an ultrasound in his office and will be doing a full week of baseline scans on the patient in question before treating, as he believes stenosis to be transitory in nature. He has already submitted a paper to a scientific journal with copious refs. He speaks 3 different languages fluently, which matters because some of the books he uses are in German, and they are pretty impressive to look at. He is a garden variety Internist who's been a lot of places, in research facilities, and treating burn victims, thoroughly inquisitive to a fault.

But he truly does care, a very loving heart for the downtrodden.

But perhaps his new modality will not work, so be it, I will report that too. There will be no adverse affects to the patient, who's angioplasty failed after a few months anyways. (Costa Mesa). I try to keep him grounded in all the latest and greatest, what he especially needs are scans to study, even anonymously. The only help offered so far has been Dr. Dake, the rest he can't even get past the office staff.


Will update as it comes in, but it is very very exciting, if this works, he will turn this mamma jamma upside down, and angioplasties could just become the old way of doing things.


Heady thinking, but hopeful nonetheless...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: some great posts over on Dr. Arata's facebook page today

Postby Cece » Wed Feb 13, 2013 10:01 am

Ok, that is very interesting.
I've seen my jugular stenoses (on ultrasound, on MRV, on venogram, on IVUS). I had thickened valves and, on my left, an extended leaflet that roadblocked the vein completely. I can't think of any method short of venoplasty that could have effectively treated my stenoses. But! Maybe whatever he is doing can be combined with venoplasty to get even better results. Or maybe it will be effective in patients with less severe stenoses than what I had. Or in cases of failed angioplasty (not just undertreatment but failed despite the best treatment). Maybe it could help with muscle compression stenoses. Maybe we just need to get our blood flow up to a certain threshold, it doesn't have to be perfect, it just has to be good enough.

The week of baseline scans is interesting in its own right. If the stenoses appear to change, the question would be if the stenoses are transitory or if there is a lack of intrarater reliability. Ultrasound has not been the most reliable tool.

Kudos to you, Mark, for introducing him to CCSVI.
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Re: some great posts over on Dr. Arata's facebook page today

Postby NZer1 » Wed Feb 13, 2013 11:53 am

"Kudos to you, Mark, for introducing him to CCSVI." Totally agree with this one Mark! Well done!

Cece I personally believe that finding out why your valves thickened, and why any ones walls change and collaterals grow is the baseline of where we need to be looking.

If there is in-depth study of this nature then we move ahead. I have the feeling that PTA is an after the fact attempt at improving a bad situation that has developed into many diseases. The bottom line is an awareness now that the blood flow through the Brain is far more problematic than previously assumed.

The work and study on CCSVI patients that Mark is referring to may not mean instant off the table differences in symptoms like PTA and that may be the answer as well.

Find the cause and work on that! The push for knowledge on treating Lyme and CPn is a good example of at looking at the big picture, and it appears to be part of the Big Picture.

Regards,
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