This Is MS Multiple Sclerosis Community: Knowledge & Support

Okay I'll own the provocative subject line.

Not my words, just another interesting, compelling take on the whole paradigm. While I doubt this will get much airplay, the politics of the moment demand a bit of backtreading, contemplation, review. Since CCSVI is now being relegated into the political spectrum, read: the purity is gone, we talk more about what other people are talking about or saying about it than talking about the disease itself, here's an interesting fresh perspective from a chiropracter. Of course that may turn some off immediately, so be it. For the rest, prepare for an interesting read... Certainly some food for thought, since there is very little tie-in that I've seen so far with the C1 issues that people have reported, as far as any impact on studies (since we are trying to establish the existence and/or predominace of venous issues in PWMS first), as stated, it's probably not going anywhere any time soon, some good food for thought. And of course, the hammer/nail analogy applies, so stipulated...

While the term CCSVI is new, the role of extracranial venous drainage issues in causing neurodegenerative diseases is not. I have been writing about it for well over twenty years now. That’s why I chose a picture of the ventricles and venous drainage system of the brain for the cover of my book. It is precisely what the book is about. In contrast to Zamboni, however, my research began with anthropological studies, and rather than MS, it started with normal pressure hydrocephalus (NPH) and Alzheimer’s. In fact, if you do a Google search for “stenosis Alzheimer’s” you will find an old article I publishied in Dynamic Chiropractic in 1990 calling for epidemiological studies into the role of venous drainage issues in Alzheimer’s. What’s more, MS is just the tip of the iceberg and aging baby boomers, Alzheimer’s and Parkinson’s diseases are the iceberg.

In contrast to Zamboni, Schelling belives that the cause of the lesions seen in MS are due to venous back jets into the brain; that is reverse or inversion flows. He believes the primary source of the back jets to arise from cardiorespiratory waves transmitted to the brain due to incompetant valves in th jugular veins, as well as through the vertebral veins, which unlike most veins, have no valves. He also discusses violent venous back jets from the cord into the brain due to truama as a source. Schelling’s theory of venous back jets explain the hyperintensity signal lesions seen in MS far better than Zamboni’s theory of venous stenosis, but I disagree with Schelling on the primary source coming from cardiorespiratory waves. I studied bats, whales and giraffes precisedly to study extreme inversion flows and found that they have adapted compensatory mechanisms, which I discuss in my book. Humans similarly contend with inversions flows.

In contrast to Schelling, my research began around 1984 while studying the unique designs of the bent base and special joints of the human skull called sutures. The artificially deformed skulls from Peru and Bolivia started me looking into hydrocephalus, which led to normal pressure hydrocephalus and Alzheimer’s disease. That led to Parkinson’s and later multiple sclerosis. When it came to my theory of venous drainage issues in neurodegenerative diseases, I was stumped by MS. It was difficult to explain the location of the supratentorial periventricular hyperintensity lesions seen near the core of the brain and conversely along the flanks of the cord in MS. Schelling provided the answers.

In brief, I agree in part with Zamboni on the theory of CCSVI but I disagree with him that stenosis of jugulars is the primary cause. I agree with Schelling that venous back jets most likely cause the lesions, but I disagree with him that the primary source of the back jets come from cardiorespiratory waves. I have my own theory about the cause of the CCSVI, which I think is better than either Zamboni of Schelling’s theory, but no one has all the answers, at least not yet. Nontheless, the current stir over CCSVI has been a huge leap forward for people afflicted with MS as well as other neurodegenerative diseases.

When it comes to the overall subject of the MS, Schelling is by far the expert and anyone involved in MS research should know everything in his book so that we are all on the same page. More than just describing the lesions and theories regarding their cause, Schelling make it clear what MS is not. According to Schelling and others for that matter, MS is not an immunological disease, nor is it due to inflammatory reactions. Corticosteroids most likely work on MS cases by reducing swelling and pressue, not inflammation, the same as it does in head trauma cases. But corticosteroids cause wasting and weaknesses of muscles and bones, which isn’t good considering MS patients often have problems with leg weakness, balance and falls. The last thing MS patients need is wasted muscles and broken bones. Interferon makes no sense either, since according to Scelling, except for oligoclonal bands in CSF, there is really no solid evidence to indicate that MS is an autoimmune disease.

Tons more interesting items at the link. http://uprightdoctor.wordpress.com/about-ccsvi/

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Thank you Curious for posting this article !! I've often wondered how Dr Schelling's hypothesis differs from Dr Zamboni's. I assume that these two doctors have discussed these issues. It is strange that Dr Schelling keeps a low profile about CCSVI. Comparative anatomy helps scientists understand how the same set of systems and organs can differ from species to species. I like the idea of looking at giraffes and wondering how their cardiovascular system solves the problem of the brain !!! I know that one of the major issues in human evolution is how our bodies are able to cool such a large brain !! The outflow of venous blood is one of several cooling mechanisms for the brain. Another is sweating. And we are back to the issue of heat intolerance in MS. I know I am rambling but CCSVI delivers more questions than answers.

ozarkcanoer

I'm curious too. While I'm not 100% sure I trust Chiropractic in general to weigh in on MS etc, I did order Flanagan's book from Amazon.

I love the phrase "MS is the tip of the iceberg, Alzheimer's and Parkinson's are the iceberg". Again, while there seem to cases where Parkinson's patients are testing positive for CCSVI, it might be early to make claims there.

Oh, and this is why I ordered his book:



I've been wondering about the IJV thing for a while. If they are the primary drainage only while lying down, where do the sudden improvement in balance issues come from? Can there be important stenoses/compressions in vertebral veins too?

Mark,

Thanks for the link. Dr. Flanagan is very interesting to read. I especially liked where he said


It restores my fragile and bruised faith in doctors to find the ones we have that are investigating all aspects of these horrible diseases. Now how do we get them ALL TOGETHER? They seem to want it too!! Maybe CCSVI Research as it's evolving will be the axis the doctors need. Lets hope they're various ideas can all be pooled together somehow.

Lora

Dr. Zamboni and others have found stenosis in the vertebrals as well, Dr. Bart. Problem is, these veins are too small for current balloons....no way to open them with current technology, so the doctors just aren't going there. Also not easy to see/access while the patient is lying down.

I had a chance to talk to Dr. Schelling about his book, his research on venous back jets, the changes in cardio-thoracic pressure and what he believes is the root cause of CCSVI. He believes we do not have the means to treat them as of yet, and that pwMS will need to be patient. He has been very respectful of Dr. Zamboni, and attended the Bologna conference in support of Dr. Zamboni's research. But he told me that he feels this is not the entire story....only the very beginning. He and Dr. Zamboni respect each other, and agree to disagree. They are amazingly humble and open men. I would not say they are "vs"---the are parallel lines, heading in the same direction.

The Upright doctor has inserted his research into the dialogue, and it is certainly interesting. He started blogging about CCSVI and his opinion on the research in August, and lots of people have been purchasing his book. I recommended to him that he contact the International Society of Neurovascular Disease and work with them. http://www.isnvd.org/ His insight would be very helpful. But he's not a venous expert. His specialty is architecture, not flow. CCSVI study need both.

I believe we just do not have the means to address all of the venous malformations and issues the IRs are finding. There is room for the study of stenosis, flow, architecture, pressure variants, other veins...we're at the beginning.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Amen to all the comments. At first blush, this would appear prima facie to be a "Zamboni's got it all wrong, all you need is a chiropractic adjustment" approach.

Nothing could be further, and his approach is quite refreshing, comments like these in the comments underneath:

Even the best upper cervical care can’t correct drainage capacity issues caused by an undersized internal jugular vein due to genetic design issues. That’s why Dr. Zamboni’s treatment offers hope in many types of cases. We are just scratching at the surface. Much more research needs to be done. In the meantime, it pays to get your upper cervical spine checked to make sure it is not the cause or in anyway contributing to the burden on a backed up drainage system in the brain.

After all, it can be clearly seen on my MRI's the role that C1 was playing in all of this. I've had many issues with my upper cervical since the teen years, along with various blunt force traumas to the head and such. Nothing major, but enough to knock me out cold, twice.

I think we will find in the future, that not only will there be these differing types of stenosis already categorized by Zamboni into 4 (?) types of presentations, but the more structural issues of the atlas and other areas, especially collarbones, both of which we've seen in quite a few people already, will split those categories up even further. We'll have MS trauma induced, MS congenital venous malformations induced, missing, undersized veins and all that. Some will be a straight up, simply "fixed" and totally correctable, easily caught early on malformation, and some of course will be a bit more complex, and all points in between.

I like this guy's approach.

In case nobody noticed, our own costumenational was on there getting help, after his CCSVI treatment failed to help. Perhaps there are subsets now of the "CCSVI treatment didn't work" people who have other options. With a disease like MS, having options is good. Being told the end of the road has been reached and just do your drugs and do your time is not an enviable position.

Quote costume:
costume national says:
September 10, 2010 at 7:08 am
Dear Dr Flanagan,
i am happy to report that your predictions could not be closer to the truth. The doctor you sent me to, found a serious misalignment of my C2 which has probably occured due to a motorbike accident back in 2000.
I dont know match of course but the xray didn’t leave any doubts even to my untrained eyes and he told me that this was the second most serious problem of this kind he has ever seen until now.
He suspects that it might put pressure to the brainstem but before going ahead with adjusting the damn thing (which is giving me pain every know and then if you can believe this) he want to consult with Dr Conicello in Italy.
He is most caring and descent and i must say that i got a good feeling about this.
It may turn out as wishful thinking but i feel that spot in my body as the core of my problems for some reason. Hopefully i ll be helped somehow.

I will definitely keep you posted and so will my doctor.
There are really no words to express my gratitude here.

ps: i am afraid to have my upper cervical spine adjusted.


This is all very fascinating.

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

One of the CCSVI criteria is that there is an unusual change of the use of jugulars.


From Dr. Sclafani:


Why would the delta be negative? If the csa went up when you were upright, relative to its value when you are lying down. This might be because of gravity. There is abnormal need for the IJVs, when you are upright, and instead of collapsing when you are upright, like they normally do, they are bigger than when you are lying down. In the absence of gravity, and with narrowing somewhere, they don't fill up as much as they do when you are upright. I don't know how far the model really goes (are the two jugulars averaged, or taken only separately?), but it would seem there is a reason for their use when standing up. Like too much resistance elsewhere (stenosed vertebrals?). Or it could be that something is keeping them from collapsing when upright, as well as preventing the normal flow when prone.

The implication, though, is that drainage through the IJVs in the upright posture definitely takes place (they are in use) in the abnormal, CCSVI case. You might be experiencing reflux when upright, and this might clear up when the normal non-use of the IJVs (upright) is restored, due to the stenosis being cleared. Reflux no longer occurs (because flow is redirected) when upright, and flow is much greater, swamping reflux, when prone.

I think the transition from prone to upright, in flow resistance of the IJVs, added to the parallel use of these veins with others, and the presence or absence of valves, makes the whole system extremely complex. It can fail in many different ways. The result is that when it is repaired, and depending on how, various changes may occur, which gives us a wide variety of improvements.

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

Cheer, Joan have you heard if Dr. F has made contact? Replied?
I asked Dr.S about his views on Dr. F 's work and he said that it is a specialty he knows nothing of. I think that he heard the word Chiropractor and switched off, he didn't hear the anthropologists 25years plus of work on this issue. I pmed Ashton Embry about Dr. F's work and no reply at all. George Jelinek is interested to hear about Dr. F's work.
I have not as yet had a reply from Dr.F on his Blog from my comments and questions.
I am concerned that human nature will get in the way of Dr. F becoming an active part of the CCSVI movement. He has some very real answers in his book, as I have said elsewhere it is worth getting a copy, and it would be interesting to know what Zamboni thinks of Dr. F's work. To me it seems vital that these guys get together and work on this in a united way and direct the knowledge curve happening under their guidance.
Another thing that Dr. F spoke of was an upright MRI has been designed and this will impact the knowledge on CCSVI and CSF flows as well.
Regards Nigel

Yeah I was just reading that part too when you posted (about the upright MRI).

Fascinating, all of it. I guess we'll find out where the truly open minds are eventually, time will tell...



I'll take a scan in that thing vs a tube any day but Sunday...

_________________
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

Hi Nigel,
I’m sure they all know each other and they are working already pretty hard to fix the problem.
Best Arne

p.s. ...no need for George & Co.

Joan wrote some times ago:

ISNVD ‎- "The founders of the new society: http://www.isnvd.org/about met at Salvatore Sclafani's lovely home in a pretty part of Brooklyn overlooking a park. Salvatore was wearing a paint-splattered t-shirt and a wool knit skull cap on his head. The next day he was wearing a... suit and I almost didn't recognize him. The rest of the "founding fathers" were all there or on the phone. Mark Haacke whom I already knew was preoccupied with the phone connections to Zamboni in Italy and Schelling in Austria and BB Lee at Georgetown and Zahed in Detroit. Mark Godley is the anesthesiologist who runs the Falls Creek private hospital in Vancouver. He was very friendly and helpful and was charged with keeping the minutes. The two Italian neurologists Fabrizio Salvi and Ilaria Bartolomei who work closely with Zamboni were also there and were friendly but spoke little. Robert Zivadinov I had met briefly in Hamiton so I recognized him. As I remembered he has a gruff manner, but over the next two hours I came to respect his judgement and admire his courage. He has been a leading big pharma researcher of the various MS immunosuppressants and since he began studying CCSVI big pharma has been shunning him. Mark led us efficiently thru the creation of the new Society, the International Society for Neurovascular Disease, I am the treasurer, Zamboni the first president, Zividinov the next, Sandy McDonald, Mike Dake, Ashton Embry, Franz Schelling, and several others will be the founding officers. It felt like I was witnessing John Adams and Thomas Jefferson at the declaration of independence.

The next day was Sal's conference for interventional radiologists. I spoke about fMRI as a measure of venous drainage from the cerebral cortex. Haacke gave his usual exhaustive review of MR in MS. Salvi gave a thorough summary of the status of MS research. Sclafani was clearly the grandfather of the IRs and kept the meeting moving. Sinan from Kuwait, Petrov from Bulgaria, Sisken from Albany and another IR whom I didn't recognize summarized their experience doing venoplasties. This was what the audience came for and it was a very animated discussion of catheter strategies, balloon sizes and styles ("cutting" vs "kissing") and pressures and how aggressive to be. Petrov does stents in half his patients and is also more aggressive about treating the upper jugular. Michelle Brown gave a short talk about "patient advocacy" and announced Joan Beal's "CCSVI Alliance." Another advocacy group was also there "Angioplasty for All" championed by Diana Price although she was not there, accompanied by their attorney Edward Conway; they plan a class action law suit in Ottawa. There were also a few neurologists in the audience but no hostile questions from them. In fact no questions at all. The general consensus was that there would be a rapid learning curve on the best techniques to open the veins and keep them open, but that CCSVI was the most important advance in MS research in 50 years, maybe ever. I began my talk by saying "I'm a neurologist and for the first time am a bit embarrassed about it."
copied and pasted from David's entry on PLM
David Hubbard MD

Source" http://www.facebook.com/notes/ccsvi-in- ... 9325257210

This really is the core of the sad story. There are experts who know there are many things that warrant, no that deserve more research, and there are non-experts (resp. experts of another field) that tell them it's all just rubbish.

It's like some artists struggle to paint the most beautiful picture possible, and some blind men tell them it's just ugly.

_________________
"There is only one good, knowledge, and one evil, ignorance." Socrates

Early on in the TIMS discussion of CCSVI, (2009) we posted the following articles by Flanigan.

http://www.dynamicchiropractic.com/mpac ... hp?id=9049
http://www.dynamicchiropractic.com/mpac ... hp?id=9148

Sharon

Thanks Sharon, I hope that people will look at these articles.
They are important to complementing the work being done on CCSVI, filling gaps in the work of Angioplasty.
Nigel