What are we doing? Time to rethink?

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

What are we doing? Time to rethink?

Postby NZer1 » Mon Dec 12, 2011 12:29 am

We are a very diverse group of people that have been labelled as having MS.
My question to all is, Do we have MS?
Are we going along a trail that gives us symptom relief and we, as yet don't know why?
Do we need to focus on the malformations found, and treat them and then look at the benefits?
At this point in time the MS Societies, as just one group, Neurology as another, are stunned at what is being found with Vascular involvement in our 'maladies'.

I am beginning to think that there are many who have been caught with their pants down, lower than average teenager, and they are realizing that there short falls in their dx and treatments of us all.

All of us have had varying results for treatments and that alone is reason to question what we have been dx'ed with?

Is PTA enough? Do we have need for a greater understanding of what is going on for all and any of us?

Without a true dx what can we achieve by pushing for treatment?

I hope this gets us all seeing the big picture, I believe that there are IR's all around the world saying much the same thing, you cannot fix what you cannot name,
Nigel
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Re: What are we doing? Time to rethink?

Postby hope410 » Mon Dec 12, 2011 3:06 am

I think this highlights more than ever the heterogeneity of the so-called "MS" group. Cheer's husband, with his reaction to high altitudes, those with discoloured feet - these may be strictly non-MS symptoms that are being included in the same overall category - they may respond more favourably to vascular treatment because they are vascular symptoms, not neurological ones - the category of "MS" has become too broad without properly excluding the differential diagnoses. And while many of us may have CCSVI, many without MS also have it. Treatment effects are also inconsistent; the vascular anomalies may not be the problem for many of us though they exist.

Much more research is needed. We'd get further if doctors were more inclined to start learning and separating out those whom treatment works for, and those it doesn't instead of just making a lot of money off of all of us. I really question the doctors who are not accumulating data from their patients so that we can understand better what's going on and further the science.

Unfortunately, I think this is the kind of mess that happens when treatment precedes the science and clinical study. I fear the losers in it are the lab rats, the patients, the ones who are paying for this big experiment in more ways than one.
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Re: What are we doing? Time to rethink?

Postby ttucker3 » Mon Dec 12, 2011 9:02 am

Nigel

The comment I would make is that the current focus on clinical work to measure what is going on, tends to take attention away from the fundamental phenomena of why it is going on. The scientific literature indicates that what is going on is that cerebral venous reflux causes problems that include cerebral hypoxia, hypoperfusion and perhaps integrity problems with the blood-brain barrier (endothelium?). However, finding scientific literature that addresses the underlieing "why" is hard to find. I perceive that without answers to the why question the phrase "of unknown origins" will probably be with us for a while.

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Re: What are we doing? Time to rethink?

Postby cheerleader » Mon Dec 12, 2011 9:06 am

There is no need to rethink.
This forum started as a discussion of published, peer-reviewed research.
The first paper of Dr. Zamboni described four groups of CCSVI.
http://jnnp.bmj.com/content/80/4/392.full
One, with azygos blockage, was related to those with progressive MS, called Type D.
These were the most progressed patients, who had spinal lesions and high EDSS scores.
PTA ONLY HELPED IN QUALITY OF LIFE SCORES. It did not change their EDSS.
http://csvi-ms.net/en/content/new-zambo ... ment-ccsvi

Hope--Dr. Zamboni always stated that the relief from PTA was in fatigue, cognitive fog and bladder control, which are all neurogenic issues, or the brain-related.
That people should not expect return of motor function due to spinal issues.
What PTA did was give them energy and the verve to pursue physical rehabilitation, a better outlook and desire to live.
He actually said THE SAME THING in his interview I linked just yesterday.
Once taking care of CCSVI, what happens in people with multiple sclerosis?
"MS has ten degrees of severity, ranging from normal to an apparent vegetative state. I can not say to those who are for years in a wheelchair, but surely removing CCSVI the symptom which disappears most, which is chronic fatigue, a fatigue so exhausting before that one cannot take on rehabilitation activities. Moreover, angioplasty strengthens the control of the sphincter. For a disabled person not to pee on himself may be more important than standing. He can return to the interest in life and social relations. "



I said, over and over, my husband was a 1.5 on the EDSS scale, he only had brain lesions that his primary disabilities were in brain fog and fatigue.
He was type C....dual jugular stenosis with no azygos. He responded to PTA the way Dr. Zamboni said he would in his publications.

But this forum took off. Dr. Siskin, Dr. Dake, Dr. Simka and many of the other docs say exactly what Dr. Zamboni has stated in his publications in their own publications. The best responders are those with brain lesions, early in the disease process, and not as much spinal involvement. PTA seems to really help about 33% of pwMS. But again, people report anecdotal things online, and do not read research.

Please, read the published research. PTA will help cerebral blood flow and oxygenation. But the spine is more susceptable to injury, and less able to reroute. The brain is more "plastic" and can recover from injury, due to the recruitment of new neuronal material.

Here's a link to the papers:
http://www.ccsvi.org/index.php/advanced ... smaterials

It's not the doctors' fault if the research is not believed-

...and Dr. Tucker, the phlebologists have said from that the "underlying why" in CCSVI is due to intraluminal truncular venous malformations, like the ones noted in autopsies conducted by the Cleveland Clinic. The phlebology publications assert this time and again. So has Dr. Zamboni and Dr. Zivadinov, who note these malformations on doppler US. These webs, septums and malformed valves are know to change blood hemodynamics in other diseases, like Budd Chiari. There may be more ahead, but this is what we have for now.
http://www.avidsymposium.com/pdf/vei/4772.pdf


cheer
Last edited by cheerleader on Mon Dec 12, 2011 9:14 pm, edited 3 times in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: What are we doing? Time to rethink?

Postby Cece » Mon Dec 12, 2011 9:34 am

NZer1 wrote:We are a very diverse group of people that have been labelled as having MS.
My question to all is, Do we have MS?

I was not convinced I had MS until two years or so after my diagnosis, which was in 2006. By then I had learned more about MS, and by golly it fit, but I still struggled with the fact that I had only one stable lesion, no oligoclonal bands, symptoms stretching back to childhood, and heavy fatigue and cogfog without a clear explanation of what was causing heavy fatigue and cogfog when I was otherwise lightly touched by MS. CCSVI fit into what I already knew about MS like an exactly-shaped puzzle piece.

For differential diagnoses, I know Wheelchair Kamikaze has a list of 1000+ somewhere around. Maybe 5% to 10% of pwMS are misdiagnosed. Perhaps the presence of CCSVI symptoms contributes to the MS misdiagnosis, instead of it being more clearly not MS? That could explain higher rates of CCSVI in MS than would be expected when it's known that some MS is misdiagnosed.

Even those who have MS have different types of MS (RR, SP, PP) with different trajectories and symptoms. Different degrees of stenosis in different locations (upper jugular, lower jugular, azygous, renal) may have different impacts in different people.

"Lower than the average teenager" - lol
Is PTA enough?

It's an excellent start. What I got from angioplasty was not something I could have gotten from diet or exercise or supplements. There were near total blockages in both my jugulars, what was I supposed to do about that? It took someone with catheter skills.

NZer, have you been tested for CCSVI? I remember seeing my blockages on my MRV. I'd already been diagnosed from the doppler, but the MRV was picture proof.
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Re: What are we doing? Time to rethink?

Postby NZer1 » Mon Dec 12, 2011 1:24 pm

Cheer, I hear what you are saying about the Zamboni assessment of disease types. The challenge is that outcomes from PTA are not matching this list.

Dr. S and others are stating that there is no rhyme or reason in the results they are collecting. Sure there is people who have had problems missed and had to have multiple PTA to resolve flow issues.

At the end of the day there is no pattern forming that supports the assessments that were theorized earlier for PTA treatment. That's not to say the EBM results will be clear cut either.

There seems to be a gap between the articles, (which are great,) and the outcomes from PTA

I'm not saying PTA is not the answer, what I want to know is why? What is happening because of PTA treatment?

Cece no I haven't been tested for CCSVI yet, I will have to travel for testing, the people who have done Doppler testing so far have been dictated to by Neurology and have to be referred by Neurology for testing, bizarre. I am thinking of going to Australia for testing in the new year, and having an Upright MRI whilst I am there as we don't have one in NZ yet. Want to cover the bases when I do take the next steps.

Regards all,
Nigel
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Re: What are we doing? Time to rethink?

Postby cheerleader » Mon Dec 12, 2011 3:33 pm

Nigel-
that's not true. The peer-reviewed published research showed that those with RRMS and jugular venous stenosis responded to PTA with reduction of fatigue, cognitive fog and lack of relapses, and progressive patients had QOL improvements.

http://csvi-ms.net/en/content/new-zambo ... ment-ccsvi

Dr. Dake has also made the connection to fatigue

Among those conducting CCSVI research is Dr. Michael Dake, a professor of cardiothoracic surgery at Stanford University School of Medicine.
Dake followed 30 people with MS who had stents implanted to open their veins. Two months after surgery, they reported feeling 50 percent less fatigued than before surgery, Dake said. They continued to be less fatigued at the one-year mark, even improving slightly from where they were two months after surgery, he said.

http://health.usnews.com/health-news/ma ... y?PageNr=1

Here is published research:

Chronic fatigue (CF) severely affects patients with multiple sclerosis (MS), but its pathogenesis remains elusive and the effectiveness of available treatments is modest. We aimed to evaluate the effect on CF of the balloon dilatation of stenosing lesions affecting the main extracranial veins configuring the chronic cerebrospinal venous insufficiency (CCSVI), a condition strongly associated with MS.
METHODS:
Thirty-one MS consecutive patients (16 males, age 46.2+/-9.4 years) with associated CCSVI and CF underwent the endovascular procedure. Fatigue was assessed using the Fatigue Severity Scale (FSS) and Modified Fatigue Impact Scale (MFIS) at baseline (T0) and one (T1), six (T6) and twelve (T12) months after the procedure. In ambulatory patients (N.=28), mobility was evaluated using the 6-min walking test at T0 and T1.
RESULTS:
and MFIS scores significantly improved from preoperative values, and the positive trend was maintained at one year (FSS: T0=5.1+/-1.0 to T12=3.5+/-1.8, P<0.001; MFIS-total score: T0=34.9+/-14.8 to T12=22.5+/-13.7, P<0.001; MFIS-Physical subscale: T0=21.2+/-8.0 to T12=13.5+/-9.7 P<0.001; MFIS-Cognitive subscale: T0=9.2+/-9.5 to T12=6.0+/-6.3, P=0.03; MFIS-Psychosocial subscale: T0=4.5+/-2.1 to T12=2.5+/-2.1, P<0.001). Six-min walking distance (6MWD) at T1 improved significantly (332+/-190m to 378+/-200m, P=0.0002). In addition, an inverted correlation between 6MWD and MFIS-physical subscale variations was found in the subgroup of patients (N.=8) with no lower limb motor impairment (r=-0.74, P=0.035).
CONCLUSION:
The reestablishment of cerebral venous return dramatically reduced CF perception in a group of MS patients with associated CCSVI, suggesting that CF is likely the symptom of CCSVI.

http://www.ncbi.nlm.nih.gov/pubmed/20351673

If patients want to wait for more peer-reviewed and published research before being treated for CCSVI, that's certainly advisable.
So is seeking treatment through a clinical trial or IRB study. But claiming the results make no sense, or Dr. Zamboni was incorrect, is only confusing.

The ISNVD is encouraging a variety of specialists from all fields to look at all of the angles of CCSVI. Here is their program. As you can see, the view is expanding....but we need time, research and more published.
http://www.isnvd.org/files/ISNVD%202012 ... 2011-16-11).pdf

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: What are we doing? Time to rethink?

Postby NZer1 » Mon Dec 12, 2011 10:11 pm

Thanks Cheer,
What I would appreciate is Drs like Sclafani, Siskin, Simka, Arata and others to chip in with their experiences and to help identify what is an improvement, as there seems to be specific symptom improvement rather than a broad brush stroke that one could call MS symptoms.
I have no doubt that there are improvements from PTA, no doubt what so ever. What I would like to know is what does that have to do with MS or any other de-generative disease that has these same symptoms.

Are we focusing on a set of symptoms with no name or pigeon hole like Dr. Arata is doing or are we looking at MS specifically for causation?

I don't know where PTA is going, I do know that this effort by you and others is beyond words, the outcomes from PTA is priceless in many cases. I do want to see the momentum continue and increase and I would hope to get the data assessed realistically.

Regards all,
Nigel
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Re: What are we doing? Time to rethink?

Postby Cece » Tue Dec 13, 2011 8:19 am

NZer1 wrote:I have no doubt that there are improvements from PTA, no doubt what so ever. What I would like to know is what does that have to do with MS or any other de-generative disease that has these same symptoms.

I think it's too early to answer such questions with certainty. Not enough research has been done. What comes to mind, though, is the research on post-treatment MRI lesions. I cannot find the study, does anyone have it? It was from not long ago, and it showed that 12 out of 13 patients who had been treated with venoplasty for CCSVI had an abrupt cessation to new MS lesions on their MRIs.

Lesions on the MRI are part of the definition of MS, using the MacDonald criteria, so for CCSVI treatment to impact lesions, that would have a great deal to do with MS.

But I agree with keeping them separate for those treating clinically. There are two disorders present: CCSVI syndrome and multiple sclerosis. Conflating the two into one seems to have slowed down the progress toward getting treated for the first. There was another awful neurologist editorial in the Archives of Neurology, talking about CCSVI venoplasty as an MS treatment, with no regard to the fact that we may benefit from opening our blocked veins regardless of the MS.

http://www.newswise.com/articles/more-r ... tient-care
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Re: What are we doing? Time to rethink?

Postby NZer1 » Tue Dec 13, 2011 12:15 pm

Cece the article on MS lesions gives a new picture on MS. It also asks what the MacDonald criteria is based on, white matter or grey matter lesions.
This is another reason why I question the dx of MS as there are many conditions that have white matter lesions (the positions may vary).
'Mini' Strokes and MS have been said to occur in patients, as one example, not caused by each other but do occur. So does this mean that more effort needs to be made in defining what has caused a lesion? Or where a lesion is found and its cause?
Lesion counting has had discussions over time. They often do not have a connection to symptoms, so could that mean that lesions may have more to do with flow issues? Time lapse MRI's over months show that lesions come and go all the time. Many PwMS have numerous lesions and little disability when they are on the brain, yet when a lesion is on the cord there is almost always disability and the lesion does not 'go away'. So does that mean that brain lesions and cord lesions could have a different causation?
Neurologists need to think about what they have to say from here on as they need to introduce some new meaning to their rhetoric. I believe they would do well to acknowledging that the current knowledge of MS has some major holes, and Vascular Specialists are driving Buses through those holes.
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Re: What are we doing? Time to rethink?

Postby Cece » Tue Dec 13, 2011 2:27 pm

NZer1 wrote: I believe they would do well to acknowledging that the current knowledge of MS has some major holes, and Vascular Specialists are driving Buses through those holes.

It is hard to think that anyone could not acknowledge that the autoimmune theory of MS has holes. No antigen. Lesions forming in the absence of inflammation. Lesions on gray cortical matter or in the retinal sheath that has no myelin. Lesions with a vein in the center.

I wish that all the right circumstances that are happening now, with the discovery and investigation of CCSVI, had happened a decade or two or three ago.

I wish there was more funding so that whenever someone in a neurology editorial says that the endovascular treatment of CCSVI needs more research, there would be all the money and collaborative relationships between fields such as neurology and interventional radiology making that happen.

You mention going to Australia for CCSVI doppler testing and also upright MRI. The upright MRI wouldn't be for CCSVI, but for UCC, right? It would not be an upright MRV for CCSVI? Dr. Haacke should get an upright MRI. He would have a very good argument for its usefulness in measuring jugulars, in which flow is different when upright than when lying down. And wasn't Dr. Zamboni talking about a machine that could do an MRI at the same time doppler was being done? Then you could have the combined data.
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Re: What are we doing? Time to rethink?

Postby NZer1 » Tue Dec 13, 2011 3:50 pm

Agreed Cece,
The Upright MRI is to rule in or out Chiari Zone or One Malformations. My symptoms 'fit' more with Chiari than MS and I have been requesting for three years to see a Neuro and have a follow up MRI since my spine and brain lesions were found after two earlier MRI's were clear. Want to know what has happened over time as my symptoms are progressive without relapse from day one.
I am of the opinion that I will also be checking for CCSVI next, but first rule in or out Chiari.
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Re: What are we doing? Time to rethink?

Postby ozwannabe » Tue Dec 13, 2011 4:16 pm

Hi,
my MRI post procedure showed no enhancing lesions, no new lesions and evidence of shrinkage or some. This is including two very active lesions, one a black hole. I have been having six monthly surveillance MRI because of very active disease. The only thing to change was return of decent flow to one of my jugulars. Has to be a link. I would be interested to see if there is any difference to lesion appearance on upright view. Does current blood flow affect imaging? Maybe one day someone will shed some light.
Cheers,
Vicki
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Re: What are we doing? Time to rethink?

Postby blossom » Tue Dec 13, 2011 8:39 pm

nigel, i get your drift totally on your way of thinking. the upright mri is the way to go. think most of us are in an upright posture whether standing or sitting for the biggest part of the day and our lives. so, to me you'd think the neuro's, the ir's and even in certain other fields of med. would want to take a good look at what is going on in us while we are in an upright position. it just makes sence.

i have too many unanswered questions also. and for sure the way they have been diagnosing and treating all these yrs. is bad and sad for all of us.

ccsvi has opened a new door--let's hope the door is open enough that all the possible causes and treatments are allowed in.

the best to you in your search for answers.
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Re: What are we doing? Time to rethink?

Postby NZer1 » Tue Dec 13, 2011 10:30 pm

Thanks Blossom,
I will be happiest when medico's start noticing that CSF and its purposes has a huge part to play in all these diseases. Hopefully the work of Dr F and the Fronar team will motivate interest in technology to assess what is happening in a natural body position, a position we spend most of our physical life in. And again it will allow imaging in postures that cause problems for us, such a osteophite and spur issues. ;)
Best of luck with your treatment and recovery when the time comes, (after all these years), and now that technology and methods have caught up.

It will be good when the heat of vascular problems is understood and focus can go to CSF flow variations in our diseases.
It will open some eyes and minds!

Take care,
Nigel
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