MouseDoc on CCSVI

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

MouseDoc on CCSVI

Postby Cece » Sat Dec 28, 2013 12:27 pm

http://multiple-sclerosis-research.blog ... esearch%29
It is clear that the 100% concordance of CCSVI with MS is an unsustainable view. However the criteria applied to detect CCSVI does seem to occur in more MSers than Non-MSers, although some studies find it a vanishingly rare occurrence.

However, it is also the case that CCSVI criteria occurs in non- MSers. CCSVI criteria are more common in older MSers and so it is perhaps consequential and not causal. Therefore the causal link is clearly wrong. Those in support argue that the techniques used that do not show CCSVI are not fit for purpose, but one should argue that the goal posts are being shifted when the hurdle is being not being cleared.

More problematical is that the CCSVI diagnostic criteria are not stable over time and therefore there is clear problem in any clinicial study on this subject. A trial by CCSVI protagonists was stopped because of apparent worsening and whilst other unblinded studies suggest some perceived benefit, it was evident that this was typically short lasting, for a few months. Therefore the chances of success of long term trials lasting years are minimal,

Personally I hope the ongoing trials actually show some benefit, but taking a more dispassionate view I am not expecting this. This whole saga has elements that have reverberated and repeated in MS history....what will be the next treatment option that you can bypass the established medical profession.

Hopefully 2014 will bring even more clarity on this issue.

Opinions on this? This was written by a UK neurologist who maintains an educational MS blog over at http://multiple-sclerosis-research.blogspot.com . Please do not flood them with anything negative, as they are genuine in their efforts to educate and research. I think there is agreement between us and them that the Doppler ultrasound criteria of CCSVI has not been as reliable or clarifying as we would like it to be. He suggests that the CCSVI diagnostic criteria are not stable over time: indeed, someone testing positive for CCSVI on Monday needs to still test positive on Thursday, if hydration status remains the same, or it is not a good test.

Doppler does not seem to be a good test. This is why we got so excited about plethysmography a year or two back, because of the possibility that it would be more reliable. Right now the proposition is that IVUS and catheter ultrasound in the hands of an experienced IR is the gold standard of diagnosing CCSVI. While that might seem to be goalpost shifting, there has been extreme attention on CCSVI at a time when CCSVI is early on in the discovery process and new observations continue to change our understanding of what CCSVI is and what it isn't.

He mentions the same concern that we've addressed here about durability, or if the improvements last over time. I think that optimizing techniques has been one way to address durability.

We are both skeptical that the results of ongoing trials will be positive, but our skepticism is for different reasons: him, in the expectation that CCSVI does not exist as a clinical entity, and me, in the expectation that without optimized techniques or an IR who is past the learning curve, the trial will not be an accurate test of the procedure. We both hope, however, that the trial shows benefit.

He says, "the criteria applied to detect CCSVI does seem to occur in more MSers than Non-MSers..." That is an observational finding that both their camp and our camp agree on, and the meaning of which is unclear. But after four years of controversy, if this is considered to be a fact, then we have at least one fact: CCSVI appears to occur in pwMS more than it does in healthy controls. I think having one agreed-upon fact between their camp and ours is in fact something to celebrate.

At the end of the day, everyone here wants the best for every person with MS. Everyone here has seen what a destructive disease this can be, and everyone here knows what great need there is, and what urgency.
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Advertisement

Re: MouseDoc on CCSVI

Postby 1eye » Sat Dec 28, 2013 1:59 pm

While it seems a good time of year to sum things up, I don't think enough work has, even now, been done to come down solidly on either side. It could be a case of one guy seeing shifting goalposts and another seeing improvements in technique.

I think it has been established that CCSVI procedures have a great likelihood of being safe. Playing piano with baseball mitts on is also safe. So is it effective? I think there has been considerable positive experience, for some people, that has lasted, all anecdotal. For others nothing happens. I think the incredible energy that has had to be spent on attacking/defending the entity CCSVI's effectiveness, safety, and even existence has been a huge waste. Except for one thing: the grudging acknowledgement that improvements in circulation of blood can have a desirable effect on a person, even a person with "MS". We may always disagree on the best way to achieve these improvements.

Many hospitals and doctors practically live on the angioplasty procedure. If you have never had it, you still may, especially if you are old enough. Ballooning veins is getting more popular. There has been, by far, insufficient work and emphasis placed on veins. They are the weak spot in the human circulatory system. Because so much energy is lost in feeding and aerating the body, by the time blood gets back to the heart, it may not have enough pressure and laminar flow to keep its chemistry intact. I think the vein work that has been neglected in medicine can prove very fruitful.

I also think a lot of "MS" can be treated by work on the veins.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2852
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: MouseDoc on CCSVI

Postby EJC » Sat Dec 28, 2013 4:24 pm

I wouldn't lose too much sleep on that article Cece, more than once I've had to politely ask for libelous posts to be removed from that "blog/site". (which were removed upon request).

It is heavily pharma biased and populated by people who claim to be medically trained (posting anon) that also post as MS patients on the UK MS forums.

Take it all with a pinch of salt.

Fundamentally though, what is being asked for is a good thing. We'd all like more clarity and transparency. Some of us would like CCSVI and it's associated theories to be an answer, or part of the answer to the "MS" problem. It appears some would like it disproved.

Motive is the question.

A sufferer/patient wants to be cured and doesn't really care where that cure comes from.

A researcher/doc/scientist that is employed by people who rely on finance from Pharma or Govt that relies on finance from Pharma cares more where that cure comes from.

Not conspiracy, just good old fashioned capitalism and self preservation.
User avatar
EJC
Family Elder
 
Posts: 614
Joined: Tue Apr 20, 2010 3:00 pm
Location: Surrey, UK

Re: MouseDoc on CCSVI

Postby Rogan » Sat Dec 28, 2013 4:58 pm

Thanks for posting this Cece. It's great researchers still want to look outside of their EAE box. If perfusion issues turn out to be MS than one can measure this and help sick folks. Is that what the collar you spoke of does?


As OneEye wrote:

Except for one thing: the grudging acknowledgement that improvements in circulation of blood can have a desirable effect on a person, even a person with "MS". We may always disagree on the best way to achieve these improvements.

Many hospitals and doctors practically live on the angioplasty procedure. If you have never had it, you still may, especially if you are old enough. Ballooning veins is getting more popular. There has been, by far, insufficient work and emphasis placed on veins. They are the weak spot in the human circulatory system. Because so much energy is lost in feeding and aerating the body, by the time blood gets back to the heart, it may not have enough pressure and laminar flow to keep its chemistry intact. I think the vein work that has been neglected in medicine can prove very fruitful.

I also think a lot of "MS" can be treated by work on the veins.


What if one were to take the complete other side of what MouseDoc has claimed and is backing off of and just pretended everything Dr. Zamboni has done is proven fact.

If you take this in for a moment it is quite weird.

Veins are overlooked.
Chronic diseases remain unsolved.
MRI machines have noticed things in people that matter.
Even though the veins on all of our hands are different, some might be ok some might not.
Micro-cellular researchers are re-training to become whole body anatomy experts.
MRI scans notice tons of differences between folks health and sick.
Autoimmune means we don't understand something.
Surgeons taking risks can help people.

What if Dr. Zamboni is 100% correct? What if these same breakthroughs were applied to other incurable diseases? What would happen?

Thank you for your outlook and your contribution to medical knowledge. Thanks OneEye for your deep understanding of hydrodynamics.

Rogan
Rogan
Family Member
 
Posts: 72
Joined: Fri Dec 23, 2011 12:18 pm

Re: MouseDoc on CCSVI

Postby 1eye » Sat Jan 04, 2014 4:23 pm

Rogan wrote:What if Dr. Zamboni is 100% correct? What if these same breakthroughs were applied to other incurable diseases? What would happen?

Thank you for your outlook and your contribution to medical knowledge. Thanks OneEye for your deep understanding of hydrodynamics.

Rogan


I know nothing about any specific discipline other than electronics technology. But I am 60, and have learned a bit of a lot of subjects and gotten more knowledgeable in a few others. I think a good doctor will have a good knowledge of much of science, both in courses in school and in daily practice. One area I would like to have and have had very little experience in is the art of Chronic Patienthood, I would like to be able to say that the only acceptable use of the word "chronic" is the context of weed.

I think we are only at the beginning of our knowledge of CCSVI. For instance is there a variant that does not include 'tortuosity': that is, scrambled networks of misshapen veins? When it does, what causes that? Is it the same as the cause of the stenosis? Does ballooning or the improved oxygenation help wipe out some kind of infection? Those questions, rather than re-hashes of the existence debate, which has been done to death. Dr. Arata may say it is all in the vagus nerve stimulation. Is that somehow involved in the tortuosity? Where does the oxygenation fit in?

There are a lot of questions. One is, what is making me lose weight? With all this not being able to do anything, I should be a fatso like I was. I ate,, but this is the first Christmas I can remember, when I lost weight!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
User avatar
1eye
Family Elder
 
Posts: 2852
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Re: MouseDoc on CCSVI

Postby Amir » Sun Jan 05, 2014 4:59 am

Rogan wrote:Thanks for posting this Cece. It's great researchers still want to look outside of their EAE box. If perfusion issues turn out to be MS than one can measure this and help sick folks. Is that what the collar you spoke of does?

What if Dr. Zamboni is 100% correct? What if these same breakthroughs were applied to other incurable diseases? What would happen?

Rogan


A posting on the website mentioned by Cece:
Multiple Sclerosis Research

CCSVI Saturday

Posted: 27 Dec 2013 11:00 PM PST
Thibault P, Lewis W, Niblett S. Objective duplex ultrasound evaluation of the extracranial circulation in multiple sclerosis patients undergoing venoplasty of internal jugular vein stenoses: A pilot study. Phlebology. 2013 Dec. [Epub ahead of print]


OBJECTIVE Chronic cerebrospinal venous insufficiency (CCSVI) is a condition associated with multiple sclerosis (MS) and manifested by stenoses in the extracranial venous circulation. There is a need for an objective non-invasive assessment of CCSVI that is able to accurately identify the location of stenoses and quantify physiological changes in blood flows following treatment.
METHOD:A duplex ultrasound method, extracranial duplex ultrasound (ECDU), is described where the internal jugular veins (IJVs) and vertebral veins (VVs) were examined in the supine and sitting position before and after venoplasty in eight patients with clinically diagnosed MS. High-resolution B-mode imaging was used to detect obvious stenoses, intra-luminal membranes, valve abnormalities and vein wall thickening. ECDU was then used to assess blood flow including reflux. To assess obstruction, venous blood volume flows (BVFs) were taken bilaterally from the proximal (J1), mid (J2) and distal (J3) segments of the IJVs and the mid cervical VVs. To assess cerebral perfusion, bilateral BVF measurements were taken, in the supine position only, from the proximal internal carotid arteries (ICA) and mid cervical vertebral arteries (VA). The global arterial cerebral blood flow (GACBF) was then calculated as the sum of the ICA and VA measurements.
RESULTS: Pre-venography ECDU detected IJV stenoses or obstruction in all patients. Venography findings were consistent with those of the pre-treatment ECDU with the exception of the detection of bilateral IJV stenoses in two patients diagnosed with unilateral IJV stenosis by ECDU. A significant improvement in GACBF was evident following venoplasty (p < 0.05). A trend to improvement in the post-treatment BVFs of both the IJVs and the mid cervical VVs was also observed. This improvement was most marked in the left VVs (p = 0.052) and the J2 segment of right IJVs (p < 0.05).
CONCLUSION: The ECDU examination described provides a reliable objective assessment of IJV and VV stenoses and, with the use of BVFs, can quantify the degree of obstruction. These results support the use of ECDU as a non-invasive post-operative assessment of the success of venoplasty. The ability of ECDU to measure GACBF provides an additional parameter to monitor vascular pathophysiology in MS patients. The current findings support the view that the early symptomatic benefits observed after venoplasty for stenoses in the extracranial venous circulation may be the result of increased cerebral perfusion. (Emphasis added)
User avatar
Amir
Family Elder
 
Posts: 202
Joined: Sat Nov 21, 2009 4:00 pm
Location: London UK


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users