Dr. Hubbard, Alarming Comment from Seattle

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

Dr. Hubbard, Alarming Comment from Seattle

Postby Rokkit » Sat Feb 05, 2011 8:02 am

CCSVI in Seattle, Part 3 of the Q&A with Dr. Hubbard, around the 6:50 mark.
http://www.youtube.com/watch?v=W-2EAh8n0Os

Dr. Hubbard: "...and so I, myself, and my wife and my daughter, we enrolled ourselves as normal subjects. None of us were normal. We all had some kind of obstructions. So I think that is going to be a challenge, but it doesn't really change the fact that no one should want to have abnormal veins in their neck. If you've got abnormal veins in your neck, this procedure is not dangerous, it's safer than the disease modifying drugs, my feeling is if your veins in your neck are abnormal you should have the right to have it treated."

What the heck? The last thing I want to do is stir the skeptic pot around here, but these remarks can't go unscrutinized.

On one hand, he could just be saying nobody's veins are perfect. On the other hand, he might be saying everyone's veins are screwed up but MS patients should get theirs fixed just because.

Is his observation applicable to the population in general, or is it just a reflection on the Hubbard/Haacke methodology?

If it's just their methodology, might that explain why they're finding CCSVI in ALS and Parkinson's too, when Dr. Zamboni said they wouldn't?

Dr. Hubbard made these comments to much laughter and applause in the room. An odd reaction I thought. It seemed those present weren't really listening to what he was saying, they were just high on hearing "everyone deserves to be treated." I wasn't there, so I should give them the benefit of the doubt. Maybe it's just because time was running short, but it's a shame there were no follow up questions to flesh that comment out a bit.

I could be overreacting but I really think this comment needs significant clarification by Dr. Hubbard.
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Postby Lyon » Sat Feb 05, 2011 8:45 am

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Postby lucky125 » Sat Feb 05, 2011 8:47 am

Interesting question Rokkit. Remember that Hubbard's son Devin was diagnosed with MS. First degree relatives should not be allowed to be used as "normal" subjects. I think it was a little irresponsible for this otherwise awesome doctor to allow himself to be included as a normal subject.

CCSVI has been proven to be a congenital venous malformation. "Normals" should be screened via questionaire and excluded if they have a close relative with MS, ALS, or Parkinsons, IMHO.

Does that help?

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
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Postby Cece » Sat Feb 05, 2011 9:04 am

That is very interesting. I agree that as first degree relatives, they'd have a genetic susceptibility to CCSVI as well. He said only that there was some degree of obstruction, was it significant enough to count as CCSVI? Last summer at the fundraiser he mentioned that his wife had been found to have obstructions and was seeking treatment.

If CCSVI is a promoter of MS, then it doesn't have to be universally that people with CCSVI have MS; it would be one factor among others that promote the development of this terrible disease.
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Postby HappyPoet » Sat Feb 05, 2011 9:08 am

Hi Rokkit,

Arlene Hubbard reads and posts regularly on the Fb page, CCSVI in Multiple Sclerosis, so you would get an answer directly from her if you copy/paste this post over there (or ask a friend to post it for you if you're not a Fb user). Hope this helps.

This is just a wild guess, but could the answer be as simple as the children's venous malformations were inherited from their parents, and the son has a comorbidity with another condition (or suffered a trauma), not shared by other family members, that accelerated his CCSVI/MS?

~Pam
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Postby Rokkit » Sat Feb 05, 2011 9:22 am

Dr. Hubbard said "we all had some kind of obstructions." He and his wife aren't genetically related. Also, I don't think he would have said "this is going to be a challenge" if he thought it was limited to his family or first degree relatives in general - he's a smart man.

I was thinking more in line with Cece as far as one or even more obstructions not necessarily rising to the definition of CCSVI, but since Dr. Hubbard knows that too, I still think it needs to be clarified. I'm just so surprised he tossed that out there in such a flippant manner.

I really just think there needs to be a lot of focus on what normal is. That's been a big unknown from the beginning.

I'm on FB, but I'm keeping my health situation under the radar as long as possible, so someone else will have to post there if they want to.
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Postby Lyon » Sat Feb 05, 2011 9:22 am

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Postby Lyon » Sat Feb 05, 2011 9:25 am

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Re: Dr. Hubbard, Alarming Comment from Seattle

Postby Cece » Sat Feb 05, 2011 9:43 am

Rokkit wrote:Dr. Hubbard: "...and so I, myself, and my wife and my daughter, we enrolled ourselves as normal subjects. None of us were normal. We all had some kind of obstructions. So I think that is going to be a challenge, but it doesn't really change the fact that no one should want to have abnormal veins in their neck. If you've got abnormal veins in your neck, this procedure is not dangerous, it's safer than the disease modifying drugs, my feeling is if your veins in your neck are abnormal you should have the right to have it treated."

I haven't yet listened to it in context, but it would seem that the challenge is in separating out normal from abnormal.

Genetically too if I have a slight susceptibility and I marry someone else with a slight susceptibility, the offspring can get the worst of both and end up with a big susceptibility. We are back to luck of the draw again.

Has anything else been found that runs in MS families? That would be of interest right there, if it turns out that CCSVI is more common among families that have at least one member with MS as opposed to families without any MS expressed.
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Postby cheerleader » Sat Feb 05, 2011 10:07 am

OK...let's get some context. Dr. Hubbard's point is that MRVs of architecture alone is not enough. You need to understand flow, which the Haakce protocol quantifies. This is what Zamboni has been saying since the beginning. "It is not architecture, it is flow." This is what the Zivadinov MRV study was showing.

This is why once the 3D time of flight FLOW was quantified by Dr. Haacke, Dr. Hubbard and his family did not show CCSVI. They had abnormalities, but it hadn't created MS. Dr. Hubbard and Arlene do not have CCSVI, but Devin does, after the FLOW quantifications were analyzed by Dr. Haacke. The Hubbards have venous issues that have not manifested in CCSVI or MS...and yes, genetics could certainly be at play in Devin's case. I've spoke with both Dr. Hubbard and Dr. Haacke about this very situation in San Diego, when I interviewed both of them. The video interview I shot can be seen here:

link
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby HappyPoet » Sat Feb 05, 2011 10:35 am

Obviously the parents are not genetically related, but, speaking simply again, isn't it possible the son inherited his venous malformations (VMFs) from both parents? If he did, indeed, receive his VMFs from both parents, instead of just one parent, perhaps such a double-gift (I'm having trouble finding the proper words) could explain why he became symptomatic at an early age, with a possible comorbidity making his situation even worse. And perhaps his sister received her VMFs from only one parent which could help explain why she hasn't become symptomatic (yet).

Edit: I type so slow that Cece and cheer posted before I was able to post. Thanks, ladies, for helping to clarify the genetic issues.
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Postby patientx » Sat Feb 05, 2011 11:33 am

This statement caught my eye:
If you've got abnormal veins in your neck, this procedure is not dangerous, it's safer than the disease modifying drugs,

What disease modifying drugs is he talking about? The CRABs? Is he really saying that angioplasty, with the possible complications of thrombosis, is really safer than one of the standard injectibles?
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Postby concerned » Sat Feb 05, 2011 11:36 am

patientx wrote:This statement caught my eye:
If you've got abnormal veins in your neck, this procedure is not dangerous, it's safer than the disease modifying drugs,

What disease modifying drugs is he talking about? The CRABs? Is he really saying that angioplasty, with the possible complications of thrombosis, is really safer than one of the standard injectibles?


And according to the new party line, CCSVI is unrelated to MS anyway so why would he be comparing "Liberation" to MS drugs?
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Postby patientx » Sat Feb 05, 2011 11:44 am

cheerleader wrote:This is why once the 3D time of flight FLOW was quantified by Dr. Haacke,


I'm a little confused by this, since time-of-flight does not quantify flow dynamics. It is exploited to image the vascular structure. To evaluate blood flow dynamics, phase-contrast angiography is used. I don't know if PC-MRA is part of Dr. Haacke's protocol, but is is a pretty established method, as was done in this study:

http://jnnp.bmj.com/content/early/2010/ ... 3479.short
link to full study
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Postby MrSuccess » Sat Feb 05, 2011 12:25 pm

first thing - note who is '' all over this '' . The usual suspects .

second thing - read ..... reread .... read again , if you must ... Cheerleaders post ...... it is FLOW that is the issue . FLOW

To illustrate : When one is flying ..... we see bodies of water in various shapes and dimensions . Twists ... turns ...... narrowing ..... great widths.....
from such a distance can FLOW be determined ?

Is the water shallow ? Is it deep ? It may be 50 feet wide .... but a mere 6 inch's deep ...... and thus almost stagnant .

Or . A body of water may be 5 feet wide .... but deep and raging .

:idea: MRV's are probably the high elevation evaluation ........

:arrow: :arrow: One must get up close ..... to measure and evaluate the FLOW Rate. :!: :!:

And THAT is what Dr. Zamboni and his colleagues are doing .





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