CCSVI, cause or symptom?

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

Re: CCSVI, cause or symptom?

Postby Amir » Thu Jan 05, 2012 2:25 pm

Cece wrote:
Then this philosophy is going to be applied to brains that are heavily compromised in blood flow, oxygenation, and CSF flow.

If CCSVI research continues to gain traction, the standard of care for people with MS will be to first treat for CCSVI if present. This may be only a few years away. Then remyelination drugs, if developed, will indeed be going to brains with healthy blood flow, oxygenation, and CSF flow.


Cece
As usual you do not nit pik but pick up on the most important point.
I certainly hope so. However, it may not be as simple as one expects.
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Re: CCSVI, cause or symptom?

Postby Cece » Thu Jan 05, 2012 2:40 pm

EJC wrote:That's still assuming CCSVI is actually a cause and not a symptom (of other external factors - not a symptom of MS) which has yet to be completely determined.

CCSVI is provided a huge leap in thinking, but we have to be careful not to put all the MS eggs into one train of thought and run the risk of being blinded to others.

(This is a response to the first sentence there but I included the second out of agreement: not good to put all eggs in one basket. It's why I wonder if I should be back on Copaxone, but it has been niiiice to be off.)

Even following the logic that CCSVI were a symptom and might return again, it seems simple enough to go back in and have it ballooned again. Maybe not in the current climate with uncertainty over whether it'd be financially covered or not, and maybe not if reballooning were needed with extreme frequency, but for someone like me who has had sustained improvements following treatment for CCSVI, it makes sense to re-open the veins if they re-closed.

I still wonder why we'd need a thinking-outside-the-veins explanation for restenosis when the vein guys have a within-the-veins explanation. Elastic recoil is a fact of life with blood vessels. It's why stents are common in arterial procedures, since before stents came into use, there was a high incidence of elastic recoil.

Hi Amir! CCSVI is, at its heart, quite simple, and should be easy to prove one way or another. The effects of CCSVI are complex and fascinating, but CCSVI itself is something that can be physically seen, and physically proven, and physically treated. We're already past the hard part, which was looking at the base of the neck for something that could be affecting the brain and the eyes and the spine. Where is Dr. Sclafani to quote that Emerson quote? "People see what they are prepared to see." The seeing took over a century to happen; the proving will be much quicker.
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Re: CCSVI, cause or symptom?

Postby Amir » Thu Jan 05, 2012 2:58 pm

Cece wrote:
Hi Amir! CCSVI is, at its heart, quite simple, and should be easy to prove one way or another. The effects of CCSVI are complex and fascinating, but CCSVI itself is something that can be physically seen, and physically proven, and physically treated. We're already past the hard part, which was looking at the base of the neck for something that could be affecting the brain and the eyes and the spine. Where is Dr. Sclafani to quote that Emerson quote? "People see what they are prepared to see." The seeing took over a century to happen; the proving will be much quicker.


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We only see what we know!
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Re: CCSVI, cause or symptom?

Postby Cece » Fri Jan 06, 2012 6:00 pm

www.ncbi.nlm.nih.gov/pmc/articles/PMC25 ... 8-0085.pdf
Valves are located within veins and lymphatics
to support, assist and direct blood and lymph
flow. A bicuspid valve is located near the termination
of the internaljugular vein as it joins the
subclavian vein to form the brachiocephalic
and innominate veins. A bicuspid valve (anterior
and posterior cusps) is usually located lateral
to opening of the external jugular vein'3. If
external pressure is applied to the upper extremity,
the walls of the draining veins and
lymphatics may compress the valves within.
Surface
veins may be observed to dilate reflecting
lymph and venous blood back up within soft
tissues and nerves. Arterial blood flow is impeded.
This inturn may cause increase in intrathoracic,
intraabdominal, and intravascular
pressures'4.

Not much but I'm trying. External compression can compress the valve of the IJV, according to these guys. Could long-term mild compression lead to shear stress conditions that lead to thickening of the valves?
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Re: CCSVI, cause or symptom?

Postby Amir » Sat Jan 07, 2012 2:10 am

marcstck wrote:
Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?


I found this posting by Marcstck (Wheelchair Kamikaze) posted during August 2010 on Dr Sclafani's thread. Perhaps Marc can elaborate about "the muscle bundle pinching his jugular closed".
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Re: CCSVI, cause or symptom?

Postby EJC » Sat Jan 07, 2012 2:31 am

Cece wrote:Not much but I'm trying. External compression can compress the valve of the IJV, according to these guys. Could long-term mild compression lead to shear stress conditions that lead to thickening of the valves?


That was my thought/question. Does a muscular external force effect the valve of a vein in any way?

Would a paralysis of these muscles cause any deformation of the content of the veins?

It could be something incredibly subtle, for instance. The muscle may do no more than "massage" or "stimulate" the vein and keep the valves mobile and operational. Exercise them if you like, what would happen if this exercise or stimulation were stopped as a result of say a whiplash trauma or wisdom teeth procedure?

Couple this lack of stimulation with a compression on the vein (of the now inflamed or deformed muscle) and would that contriubute to CCSVI?
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Re: CCSVI, cause or symptom?

Postby marcstck » Sat Jan 07, 2012 7:02 pm

Amir wrote:
marcstck wrote:
Just playing devils advocate here, as you know that I'm a believer (I should be, with a big muscle bundle pinching my jugular closed), but I also believe in healthy skepticism. In a nutshell, shouldn't signs of CCSVI not require the arcane methods invented by Zamboni to detect them?


I found this posting by Marcstck (Wheelchair Kamikaze) posted during August 2010 on Dr Sclafani's thread. Perhaps Marc can elaborate about "the muscle bundle pinching his jugular closed".

coming to this thread really, really late, but I'll throw my two cents in as well as explain the above quote.

Back in March, 2010, I was one of Dr. Sclafani's first batch of patients treated for CCSVI. During my venoplasty, he discovered a very large, very significant impingement in my right jugular that did not respond to ballooning. At the time, he didn't know what to make of this, but Dr. Sclafani investigated further, consulting with other physicians (including Dr. Zamboni) and determined that the impingement was a muscle external to the vein. Strangely, a CT scan of my jugulars done a few months earlier did not show this anomaly. It's quite likely that this impingement is positional; that is, depending on the angle of my head and neck, the degree of impingement can change. Dr. Zamboni noted that the impingement did not significantly disrupt blood flow, and therefore was not truly problematic. It's important to remember that we're talking about the deleterious effect of venous problems on blood flow, and not all areas of stenosis create significant blood flow disturbance.

As to the question of cause/effect, as I haven't read through this entire thread I may be going over old ground here, and if I am please forgive me, but the argument doesn't simply boil down to whether or not the venous anomalies now called CCSVI are congenital. Certainly, fused valves and anomalous membranes are in all likelihood congenital. However, this by no means indicates that they are THE cause of MS. It's much more likely that they play a role in a multifactorial disease etiology that includes genetic predisposition and exposure to environmental factors.

The ongoing BNAC studies, as well as the recent cadaver study conducted by the Cleveland Clinic, strongly indicate that there are folks with MS who do not have CCSVI, as well as folks with CCSVI who do not have MS. Having congenitally malformed CNS venous structures may predispose a person towards susceptibility to MS (and, perhaps, other neurologic diseases), but does not mean they are assured of developing the affliction.

Certainly, all of us are born with congenital abnormalities throughout our body systems (some within normal variance, some not). A person may be born with congenitally weak or short ligaments in their knees, but this does not guarantee that they will necessarily develop knee problems. If they live their life without encountering environmental conditions that would bring their congenitally abnormal ligaments into play (for example, an impact to the knees), these abnormalities may very likely never be discovered or cause detriment. If they do encounter such environmental factors, the subject's likelihood of sustaining significant damage, or damage more severe than a person without congenitally compromised ligaments, might be quite high.

Likewise, we've all heard the tragic stories of world-class athletes suddenly dying of congenital heart problems either during or immediately following heavy workouts. The irony behind the stories is that if these people had not been world-class athletes, subjecting their hearts to extremes of physical exertion, they very well may have lived long lives without their cardiac abnormalities ever coming into play.

Of course, there are some congenital abnormalities that create problems without outside influences. However, the presence of MS clusters, patterns of MS prevalence among migratory populations, the near universal infection of MS patients with EBV (usually two strains of the bug), the increasingly clear role of specific genotypes, and the heterogeneity of disease presentation from patient to patient, along with other factors, strongly point to MS being a multifactorial disease that requires an unfortunate confluence of physical predisposition and environmental factors to set off the disease process.

I'm quite sure that CCSVI does play a role in the development and/or the severity of MS in most but not all patients, but to my mind it's becoming increasingly clear it's not the whole enchilada. I think this is further borne out by the wide variance in effectiveness of CCSVI treatment.

Again, if this has been a rehash of discussions conducted previously in this thread, my apologies…
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Re: CCSVI, cause or symptom?

Postby cheerleader » Sat Jan 07, 2012 7:46 pm

All great points, Marc. As usual. And it wasn't a rehash in the least.
Physical predisposition + environment is a good equation.

To further Marc's heart analogy---
We may have a congenital heart valve problem, like mitral valve prolapse, but that does not mean we'll have a heart attack or stroke.
5-10% of us walk around with mitral valve prolapse, and don't even know it.
People can go their whole lives, undiagnosed, and die in their sleep at 97.
But if they smoke, eat fatty foods, don't exercise, are stressed---the risk of heart attack or stroke increases.

That's the impact of environment.
Which is what first led me to the endothelium, or the lining of the blood vessels.
Our vessels and blood are affected by how we live and what we eat.
Coagulation, vasodilation and the immune system are all regulated by nitric oxide--which can be changed by a myriad of environmental influences. Including EBV and other viruses and bacterial infections, smoking and saturated fats. Low vitamin D, low vitamin and processed foods. Lack of exercise and sunshine. All of these affect the lining of our blood vessels and our vascular health. All of these have also been linked to MS. Some things we can control, some are beyond are control. Modern living is just plain hard on our endotheliums...endothelii? Whatever.

If CCSVI is about a truncular venous malformation (which are congenital), like a malformed valve in the jugular vein or a flap in the azygos vein...there may be people walking around that never are affected with jugular venous reflux or cerebral venous congestion. But there may be others who are. The difference may be severity of malformation, injury or environmental.

Jeff responded quite well to venoplasty. He was newly diagnosed, RRMS, mostly cerebral lesions and he made some serious lifestyle changes including diet, supplements and regular exercise. So far, so good. Endothelial health program for four years, venoplasty almost three this spring. No new MS lesions, no relapses or progression, symptom relief and reversal of gray matter atrophy. He's incredibly thankful, and perhaps incredibly fortunate.
Here's the program for those who haven't seen it-
http://www.ccsvi.org/index.php/helping- ... ial-health

Normals may have stenotic jugulars, normals may have malformed veins....but they may not have had the same environmental factors, and that may well be the difference. Dr. Zamboni says normals do not have refluxive flow unrelated to postural changes...we'll see what that means when more science is in. But for my family, this is real.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: CCSVI, cause or symptom?

Postby EJC » Sun Jan 08, 2012 3:30 am

marcstck wrote:
I'm quite sure that CCSVI does play a role in the development and/or the severity of MS in most but not all patients, but to my mind it's becoming increasingly clear it's not the whole enchilada. I think this is further borne out by the wide variance in effectiveness of CCSVI treatment.


No rehashing at all Marc, nice post and very constructive.

I agree with your conclusion above after Emma had CCSVI treatment, showed improvement which then, on the whole, regressed. That's what lead us down the path with Amir.

You've got to find that correct combination for each patient. CCSVI was a huge step in showing us that and getting the thinking away from Autoimmune and drugs only to take in the MS picture globally.
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Re: CCSVI, cause or symptom?

Postby cervocuit » Sun Jan 08, 2012 5:04 am

Hi,

I want to share my thoughts on this thread.

I have been for a long time a CCSVI believer. I have seen Dr Franceschi in France for the first time 2 years ago, and he told me that I had a correct flow, but malformed valves and moderate reflux, but all this was almost normal and was very variable. He also told me that he usually saw more severe flow impairements in more advanced MS and that it could be a consequence.

So I decided to wait and as I saw more and more people getting treated and doing well on internet, I finally came to an IR (Dr Greiner) who treated me. She won’t have treated me if I was not so desperate to have « the liberation procedure ». I had malformed valves on both jugular. Here is the picture of the right one before and after balooning.
Image
I expected nothing immediatelly on symptom relief and that is certainly why nothing happened.
Finally this procedure was not a big deal. Doctors told me that many people have malformed valves or no valves, flow impairements, or collateral veins. The brain is the most protected organ of the body and there is always a path to the blood to get out. I think valves in jugulars are useless artefacts of evolution since we stand most of the time on our 2 feet. But maybe some MS patient have a real CCSVI and an angioplasty is usefull for symptoms that they usually link to their MS.

I think that Dr Zamboni is a good man, but maybe too much convinced. Doctors told me that they warned Zamboni 7 years ago to be very careful of what he was going to publish. « The Big Idea : … » what a flashy title ! « the liberation treatment », « brave breams », 100% vs 0%, never seen in medeine. He tried too much to get attention and it worked, thanks to internet and desperate patients who have no other choice.

I personally think that I have other choice now, because I’m fully convinced in the role of the immune system, food allergies, and leaky gut and that nutrition and lifestyle is, not a cure for MS, but a way to not have MS.

Sorry for thoses bad thoughts and this bad English, but I had to say that.
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Re: CCSVI, cause or symptom?

Postby Amir » Sun Jan 08, 2012 5:10 am

Marc
Thank you for your excellent contribution. Your website is also outstanding.
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Re: CCSVI, cause or symptom?

Postby Amir » Sun Jan 08, 2012 5:13 am

cheerleader wrote:All great points, Marc. As usual. And it wasn't a rehash in the least.
Physical predisposition + environment is a good equation.


Here's the program for those who haven't seen it-
http://www.ccsvi.org/index.php/helping- ... ial-health


Wonderful article. Thank you for sharing it.
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Re: CCSVI, cause or symptom?

Postby Cece » Sun Jan 08, 2012 7:47 am

http://medical-dictionary.thefreedictio ... ndothelium
en·do·the·li·um (nd-thl-m)
n. pl. en·do·the·li·a (-l-)
A thin layer of flat epithelial cells that lines serous cavities, lymph vessels, and blood vessels.

The plural would be endothelia. :)

The ongoing BNAC studies, as well as the recent cadaver study conducted by the Cleveland Clinic, strongly indicate that there are folks with MS who do not have CCSVI, as well as folks with CCSVI who do not have MS.

I couldn't remember, so I checked the cleveland clinic study, and yes, it's 5 out of 7 MS patients who exhibited CCSVI. Dr. Sclafani mentioned that the act of fixing autopsy samples makes them solid or stiff, and that might interfere with indentifying stenoses. (The study showed fewer abnormal valves than I suspected and more abnormal septums. Another possibility is that, in live patients, some septums are misidentified as valves.)
http://registration.akm.ch/einsicht.php ... KEN_ID=900

I think MS is multifactorial, but as factors go, CCSVI seems to be a large one. The variance in people's outcomes is muddied by the fact that some people have their veins close up and some people have greater degrees of neurological damage that can't be fixed by restoring blood flow. Until we see large-scale prospective multi-center university randomized controlled trials, there remains much we don't know or are trying to piece together from reports from people with different types of MS and different presentations of CCSVI who had the procedure done by different doctors with different techniques with or without access to follow-up care.
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Re: CCSVI, cause or symptom?

Postby MarkW » Sun Jan 08, 2012 8:56 am

marcstck wrote:
Amir wrote:
marcstck wrote:As to the question of cause/effect, as I haven't read through this entire thread I may be going over old ground here, and if I am please forgive me, but the argument doesn't simply boil down to whether or not the venous anomalies now called CCSVI are congenital. Certainly, fused valves and anomalous membranes are in all likelihood congenital. However, this by no means indicates that they are THE cause of MS. It's much more likely that they play a role in a multifactorial disease etiology that includes genetic predisposition and exposure to environmental factors.

I'm quite sure that CCSVI does play a role in the development and/or the severity of MS in most but not all patients, but to my mind it's becoming increasingly clear it's not the whole enchilada. I think this is further borne out by the wide variance in effectiveness of CCSVI treatment.


Hello Marc,
I agree, both on multifactorial MS and that CCSVI is not the whole enchilada.
I have been thinking about the term congential for valve malformations. Most readers will think this means that the defect is visible at birth. However, it could mean that the defect develops later in life. For example, some genetic diseases do not materialise until puberty. It would be interesting to know when malformed valves appear in pwMS. That needs long term (decades) longitudinal studies which I cannot envisage anyone financing.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: CCSVI, cause or symptom?

Postby civickiller » Sun Jan 08, 2012 11:53 am

Cece wrote:If the benefits of jaw or atlas aligning cannot be proven, then it must remain an alternative option, and we are indeed a patient population that is willing to try all reasonable options.


Upright mri part 1
http://www.fonar.com/news/100511.htm
upright mri part 2

http://www.sfgate.com/cgi-bin/article.c ... 929674.DTL
im thinking of the upright mri post saying 7 out of 8 had a previous trauma and all had low csf flow with the csf being blocked in the upper sine, i think they said upper spine.
the 2nd part of that mri study with an upper cervical care adjustment which of course was only 1 patient but then the study the HappyPoet was in showing that a UCC adjustment resulted in a noticable increase in csf flow.

also dr flanagan said dr rosa satd that every ms patient they saw had a chiari 1 malformation
uprightdoc wrote:Dr. Rosa says he hasn't seen and MS patient yet that didn't have a Chiari 1. He does, however, handle many trauma cases.

It is not necessary to have reflux for MS lesion formation. Lesions can form due to poor cerebral perfusion pressure and ischemia.

Anything that disturbs blood flow in the brain affects CSF flow. The low side of the CSF pressure gradient is in the IJs and vertebral venous plexus. If PTA improves Chiari signs and symptoms it is most likely due to it impact on blood and CSF pressure gradients. I doubt, however, that PTA will correct a Chiari or tethered cord. In fact, as I mentioned at the start of this thread it could cause overdrainage of the brain in certain cases. Overdrainage occurs when CSF drainage exceeds CSF production.

I mention in my book that researchers have shown that MS can start in the nerve first before myelin and you don't need inflammation to cause demyelination. In addition ischemia, myelin can get injured from overstretching due to edema.

I haven't heard from any Chiari cases that did well following PTA but if they did it would be due to increased blood flow. Yes poor responders to PTA may have a Chiari.

I just reviewed eleven interesting cases yesterday. They were scanned supine and weren't checked for Chiari so there is no way of knowing whether they do or don't but they all had significant cervical spondylosis. Spondylosis causes stenosis of the vertebral veins. The vertebral veins are the primary drainage routes of the brain during upright posture. Spondylosis and osteophytes can also cause tethering of the cord and functional Chiari.

Classic MS is associated with multple scars in the supratentorial, periventricular and perivenular areas of the brain. The problem is that some people don't have multiple scars and some people have scars in the wrong places. Compared to Europeans, Asians and Africans have a much lower incidence of classic MS scars in the brain but they do get optic neuritis and they do get transverse myelitis. I suspect it has to do with the design of the posterior fossa. The other problem is many cases of possible and probable MS aren't MS.

Blossom is a good case in point. She almost has MS, which is called probable because she doen's have classic lesions, and she almost has compressive cervical spondylotic myelopathy (CSM), but the bone spurs aren't quite touching the cord yet. Technically she doesn't have MS or CSM but has signs and symptoms of both.



does ccsvi restore blocked csf flow ?

thats why i strongly urge every single person, not just ms, to get checked out by a ucc dr to see if they could benefit from ucc.

alot of ms'ers say theyll do anything to fix their ms but i have yet to see it as most of those go straight to ccsvi without giving ucc a seconds thought but hey theyll do anything to fix their ms, right. :roll:
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