This Is MS Multiple Sclerosis Community: Knowledge & Support

Marc - Now we are getting somewhere ....... thanks for putting an actual name ...... to your experts. It was really unfair of you to alway's call into question ......... the validity of the work of " named " medical professionals........ with comments like ...... " I get my information from someone in some organization ..... better than yours " .

That " trump " card style ...... is bad form.

Should be interesting to gauge the reaction Dr. Hubbard has in having his work ...... called into question . Now that we know who the critics are .

These are Dr.Reich and Dr. Cortese ?

I can say with 100 % assurance that Dr.Hubbard is absolutely welcoming in having his research peer reviewed .

That is a common thread among the CCSVI medical professionals ..... starting with Dr. Zamboni ...... they welcome others to duplicate their research results .

Who can ask for more ?




Mr. Success

Is that a good or bad thing?
What question would you have asked us?

.

For the record, I wasn't calling into question Dr. Hubbard's research, only pointing out that the methods used could make his findings difficult to replicate because of the finicky nature of the technology. I find Dr. Hubbard's research intriguing, and as a generally "pro-CCSVI" person, I hardly want to shoot down his positive reports. Actually, the notion that any MS patient is "anti-CCSVI" is asinine, unless they enjoy having MS. I had the opportunity to meet Dr. Hubbard in person yesterday at Dr. Sclafani's symposium, and was fortunate enough to be able to engage him in a lengthy one-on-one conversation. I found him to be quite the erudite gentleman. I certainly was not casting any aspersions on his work.

Additionally, it's not just CCSVI researchers that welcome attempts to replicate their findings; any legitimate researcher understands the necessity of replicated research findings to validate their initial studies.

I don't know if you remember, but back in the early 90s a research group claimed to have achieved "cold fusion", that is, nuclear fusion at relatively low temperatures, a finding which would revolutionize the production of energy worldwide (cold fusion is completely "clean", and has none of the nasty implications associated with the nuclear technology used to generate energy today, which utilizes nuclear fission). This created much hullabaloo and excitement, and was reported breathlessly by all the major news organizations. Unfortunately, the initial research could not be replicated by any reputable lab, and thus the finding was found to be invalid.

In the MS world, the researchers at Vanderbilt University repeatedly publish findings indicating that chlamydia pneumonia is a primary culprit in MS disease etiology. No other research venue has been able to replicate their findings, despite repeated efforts, and thus the Vanderbilt findings, and the treatment regimen the Vanderbilt team developed around them, are still considered on the fringe, except by those that fully embrace antibiotic therapy despite the contrary research findings.

I especially don't appreciate your assertion that I'm using any kind of "trump card" style in posting information. I was merely trying to put some context into the discussion. The names of the actual researchers at the NIH mean nothing to the vast majority of people on this board, or in any context outside of the MS/neuroradiology research communities. The fact that these doctors are working at the NIH does speak to their credentials. They are on the government payroll, and generally are not subject to charges of prejudice due to pharmaceutical or other such sullying associations.

I was also attempting to point out that your astute observation that MRI is 98% accurate has nothing at all to do with other uses for MR technology, such as MRV, MRA, or F MRI, all of which are far less accurate than straight up MRI imaging, and which are all highly operator dependent.

I hope this makes my intentions perfectly clear.

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Marc
www.wheelchairkamikaze.com

It was a bad thing. First of all, all four of you were extremely sharp and had lots of info to convey, so that was a loss. I would have liked to have learned more about each of your individual procedures, especially since between the four of you three different treating physicians were represented. Some used stents, others didn't.

I would have also have liked to have pointed out, in a non-contentious way, that the example of Darwin as an argument against double blinded studies really doesn't hold water, despite it being a good applause line. It would have been impossible for Darwin to conduct a double blinded study, unless he could find another world bursting with life to compare to this one, especially one in much earlier stages of evolution.

The contention that many of the symptoms alleviated by CCSVI treatment are not quantifiable is also interesting, and of course somewhat problematic. While fatigue might not be quantifiable, certainly cognitive functioning is, if pre-and post-neuropsych testing could be done on potential CCSVI treatment candidates. Even your experience with color perception could be tested pre and post-treatment, through the use of a variation of the kind of testing used to identify colorblindness. Indeed, now that we know these issues are among those that seem to be commonly resolved by CCSVI treatment, protocols should be designed to test for them in future double blinded studies.

Not doubting your accounts at all, just saying that most symptoms can be reliably tracked by blinded third-party methods.

Thanks for participating in the discussion, and for your updates on the symposium. Good work.

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Marc
www.wheelchairkamikaze.com

Bob, the voice recognition software has evolved dramatically even in the four years that I've been using it. I imagine whatever was available 10 years ago was a far cry from the sophisticated products available today.

If I force myself to abandon my New York accent, enunciate clearly, and avoid my tendency to mumble, the accuracy rate of the software probably exceeds 95%. If I don't do any of the former, I'd say the accuracy rate still comes in at about 90%.

While the above numbers are impressive, remember that even a 95% accuracy rate means that five words out of 100 will be wrong, which means that proofreading is a must. Unfortunately, I sometimes get lazy, and I've sent out more than a few e-mails with some very embarrassing transcription errors included.

Oops…

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Marc
www.wheelchairkamikaze.com

I agree, it was a bad thing to be cut short.... It was the thought that it could've gone in interesting directions that made me wonder if that would've been good or bad!

I think you and Dr. Haacke, with his question about quantifying the results, both make the point that an anecdote is an anecdote. It's true, my personal experience was what it was, it was not a RCT in and of itself, it can't be held to that standard.

The fact that I am now trying to think, just how would Darwin design a double-blinded study, may be an indication that I am up too late.... You make a good point.

I was uncomfortable with seeming to advocate the quitting of DMDs. I don't want to influence anyone on that decision. I am not convinced if it was or wasn't the right choice for me. I am though really enjoying not sticking myself with needles (three weeks of Arixtra excepted).

Yes, with color perception, there is a Farnsworth-Munsell 100-hue test that would do the job. In a discussion with Dr. Sclafani about it, I wondered if it wouldn't matter because color perception is not that big of a deal one way or another, and his thought was that it could serve as a marker.

I am currently settling in on how to tell if I restenose again. Colors are brighter since this second procedure, so they must've dimmed in between the two, but I wasn't very aware of it. One thing that I had after the first procedure, that I lost, that I have back again is the ability to drink a full bottle of water without stopping for a breath of air. It surprised me when I noticed the ability back in February but other than a novelty, I didn't think much of it. I can't remember when but I noticed later on that I no longer could do that. Now I can again. Yes, it is a chugging test...but it might work better than ultrasound for me, considering that my restenosis was missed on ultrasound.

BUT, (and this is something I have not seen addressed by the Hubbard studies), one has to account for LEARNING. A patient will likely do much better the second time he/she has taken the same test, even if the questions are a little different, regardless of what has happened between the first test and the second.

They weren't looking at the task activated networks, they were looking at the default non task activated networks in the brain. (These had been active in pwCCSVI pre-procedure but normal in healthy controls; afterwards these were normal in pw treated CCSVI. The task-activated networks still lit up at the same lower percentage when compared to normals both pre- and post- procedure. The part of brain doing the task used the same amount of brain power/oxygen; it was the idle part of the brain that exhibited a change.)

So my question is if the learning effect can cause these default nontask-activated networks to quiet down like that? I do not know. In my limitless time to research CCSVI, I could dig through google scholar and look for what Marc is saying, that fMRI has been unreliable or unreproducible and is not as exciting as we have been thinking it is.

Not to get back on topic or anything, but: yes the problem is narrowing in veins. The problem is also likely lack of ability to re-narrow dilated veins. There may be some consensus by a few around these parts that it is a problem with the endothelial and (possibly also) autonomic nervous control of vein diameters due to damage caused by hypoxia and hypoglycemic starvation, whether chronic or temporary.

The problem remains of how brain veins do any kind of dilation or constriction if they have no smooth muscle layer. I believe Dr. Beggs has been working on that one, and it may be connected with spinal fluid. But drainage is critically under the control of neck veins, which *must* be in good working order, or as we know, bad things happen. Hypoxia causes the body to go into hyper-production of collateral veins, but they aren't as good, and don't have valves.

The business of using screening tests to prove prevalence is so ho-hum by now, isn't it?

So let's talk solutions. I know there are lots of endothelium-ophiles in the woodwork, but maybe the materials folks can come up with a self-adjusting thermally controlled tube that can do a similar function and change its own diameter just like the veins do... I'm just thinking 'out-loud'; I know it has to be able to respond also to other things besides local blood temperature. The system is a distributed one. I just saw a video showing that kind of thing controlling leg muscles. So why not also temperature and flow, given the precision of Poiseuille’s Law?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

www.ncbi.nlm.nih.gov/pubmed/9623714


There might be something in there. I have not heard of EDHF or EDRF before, or K+ channel opening substance?

Ah, but Cece, those things all have to do with arteries, and I have no idea about the smooth muscle layer in them, in the brain. I expect I have one, because I think that's why my nitro spray gives me such a headache. What I think that author is saying, and I am not even really very sure, is that in the brain we mostly dilate, and don't do much constricting. I guess that makes sense if that's the best possible use of any available heat, oxygen, and sugar.

What I was referring to though, were veins only. I only have one quote, and so far no verification, that there is no smooth muscle layer in brain veins. I don't think it would matter what chemicals you used, the endothelium couldn't do it.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

The focus is always on arteries, never on veins....
It's a good question, I don't know the answer.

I don't know how to emphasize this enough. The absolute flow value is the bottom line, but *by* *far* the thing that affects it the most is vein diameter. Call it radius, call it cross-sectional area, call it whatever you want. Control of it is important. The blood viscosity, the blood pressure, and the length of the vein (meaning a skinny vein might be as good as a fat one if it's short enough) are all equally important, and can linearly multiply or divide the amount of flow. The diameter of the vein, though, is much more important because of the 4th power rule, Poiseuille’s Law

Flow = Pressure ×Diameter × Diameter × Diameter × Diameter
____________________________________________
Viscosity × Length

Restenosis or clotting, as a result of that, can be pretty bad for you.

Chemistry and/or nutrition (I'm thinking of things like pregnancy, viagra, (niacin?) adrenaline--including epinephrine, which is used by your dentist to freeze you--and cortisone) that affects your blood vessel size can be very good or very bad for you for the same reason.

D*D*D*D

A stent will fix the vein's diameter over its length. If all goes well, the vein wall will grow around it. However, in that area, no more D*D*D*D. In that area collateral veins have more control.

Keep your endothelium healthy. Keep your smooth muscle layer healthy too!

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Replying to my own post again; sorry: I will try to do a write-up of my "what I did on my summer vacation" at the patient day, elsewhere. I just wanted to add, that I blame neckties for my CCSVI. The only job I ever had where I had to wear one, and that's when I started to really go downhill. Going to tell No. 1 Son: wear 'em loose or not at all. I got late-onset necktie disease! 4th last job I had. Stopping wearing them didn't help. The damage was done, and in my stupidity I wore them occasionally on purpose.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience