I think we finally may be on to something here, in terms of finding an answer that may explain why it has been almost impossible for research results around chronic cerebrospinal venous insufficiency (CCSVI) to be replicated amongst groups. Also, maybe why some people have a huge response to treatment with angioplasty and others don't, and why some people see some relief from their MS symptoms initially, only to experience a return of symptoms a couple of months later.
Maybe everyone is kind of right and kind of wrong here.
Clearly, when you are measuring something like what is happening with the veins that drain blood from the brain, you can't just cut them open and take a look. People just wouldn't like that very much. Instead, you have to use imaging equipment to give you a picture that you then analyze. However, what if something is there, but you can't see it using that equipment.
Dr. Robert Fox's team at Cleveland Clinic figured out a way to look directly at the veins in question without causing too much distress to the patients. They simply waited until those people were dead.
They then cut out the veins, fixed them with silicone and looked at them with their eye. They touched them and cut them open and poked around. And they found some pretty funky stuff, let me tell you.
To sum it up - there were veins from 7 people with MS and 6 people without. When the group measured the thickness of the vein walls - what has been looked at to date, there was no difference in the veins of both groups. Some people in both groups had thickened vein walls, making the venous opening small.
However, when they cut those veins open and looked at them, there were all sorts of bizarre things in the veins of 6 out of 7 of the people with MS. I attended the live presentation at ECTRIMS 2011 and it was a little "graphic," but researchers showed pictures of flaps, and deformed valves and weird membranes - all of which could impede blood flow through these veins. These were only found in one of the people without MS.
Weird, right? Looking at these things, one could see that these are very delicate, tissue-paper thin structures that could not be seen on static images. The only way that one could see how these blocked blood flow would be to watch a dynamic image of the blood flowing. Given the nature of these structures, it is also possible that the way a person is positioned when the test is done could also impact whether the slow or stopped blood flow can even be seen - it might only happen when the person is sitting or standing.
I was astounded. This is news. The session ended and I did not get an opportunity to ask the question that was, to my mind, the logical next thing to ask, so I will put it out to you (and any researchers that want to chime in here):
Doesn't it make sense then, that some of these attempts at treatment of CCSVI with angioplasty (aka "Liberation Therapy") may be destroying some of those structures, while others ones stay intact. Couldn't still other attempts end up adhering these structures to the inner walls of the veins, where they could slowly "peel off" over time, resulting in "restenosis"?
Could this possible explain why people have such varied results to treatment of CCSVI? (Take a look at the comments on a previous blog: Feelings About Restenosis After Liberation Treatment to get an idea of how different people respond.) I'll admit that I don't know exactly why opening veins would work so well to relieve MS symptoms, but there seems to be plenty of anecdotal evidence that it does.
What do you think? What other questions do we need to be asking? Does this sound logical? Does anyone have information that I am missing to either support or shoot down this idea? Leave your questions and thoughts in the comments section below.
For a more complete description of the study, see the blog that I wrote for the National MS Society: CCSVI research: Why are the results so different?
Dr Hewett explains here: http://www.facebook.com/note.php?note_id=485885141183&id=117471578700
that veins are likely to restenose because of their very nature. He concluded that in time a more permanent solution may be found but in the meantime we should expect to be treated repeatedly, which is why in the UK we are pushing for this treatment to be available on the NHS. In the meantime experts in this field and developing a protocol to treat people in the most efficient way possible and new advances and discoveries are being made all the time. All the more reason I think for every country that has a sizeable MS population to carry out these interventions in their own country so that they can make a contribution to the advancement of this treatment.
Wow – Wow Wow – I have a strange question, do veins show inflammation like other body parts?
Yes they can, and this inflammation can lead to thrombosis…
thanks, this all makes a lot of sense to me, I had a blood flow test at Mayo clinic in the 90’s in which they wouldn’t share the results because they said the machine malfunctioned and there was no way the results were correct when I know my head was all wooshy and funny during the test, and it was a feeling I’d been having and still have sometimes to this day (I call it my private vacation because it’s something like waves crashing on the shore) but while it often happens when I lay down it doesn’t always, and it can also happen when upright. The doctor’s said I might be hearing the blood flow, I find this all very interesting in light of this study. I was diagnosed with definite MS later that year, curious and curiouser as Alice would say.
What Dr. Fox saw upon autopsy is exactly what Dr. Zamboni has been describing for the past five years: intraluminal (inside the wall of the vein) truncular venous malformations. Dr. B.B. Lee wrote a paper about CCSVI as truncular venous malformations http://fondazionehilarescere.org/pdf/03-2518-ANGY.pdf
This paper was presented in September 2009 in front of an international panel of phlebologists in Bologna, Italy. At that meeting, phelbologists from 47 nations determined that these venous malformations were what they had been seeing in other venous disease, like Budd Chiari. And other researchers have found this at autopsy, as well.
These types of malformations can be difficult to treat, but the venous experts are working on the best means to address each specific malformation in the jugular and azygos veins. Some may need surgical reconstruction, some may need new valves, many respond to angioplasty. The treatment is in development.
The real breakthrough happened two years ago, when Dr. Zamboni described these malformations, wrote about them in published research, and talked about them in front of international experts in a variety of medical fields, at his first congress in Bologna, Italy. It is now 2011. I hope that the world of MS specialists and neurologists are now ready to listen to him, since they have “rediscovered” what he has been saying all along. People with MS have venous malformations. We need cooperation between vascular and neurological practices. We need convening meetings. But we need the MS world to be open to the knowledge of a new, outside specialty. The phlebologists are the experts on VMs, as neurologists are experts on the brain.
I’m excited that you’re excited! The way you felt at ECTRIMS was the way I felt in Bologna, Julie….this is revolutionary! This can help people! Let’s work together. Let’s bring the doctors together. thank you, Joan
Thank you Joan for setting the record straight. I am so pleased of the advancements in the past five years that you have been informing us with. I too am excited that CCSVI is being looked at in a realistic way . Too bad for the opposition from some, but that is to be expected in such a NEW way of looking at veins/MS … and that for over 60 years has not worked in the previous manner.
Yes, Joan, Yes!!!I experienced intense symptoms returns after my procedure, and with my early autopsy report knowledge it puts two and two together. And now more explanation and proof. Just what I was waiting for.
My neurologist appointment, just before my procedure in 2010, was a blown rant on IRs/Phlebology and their stupidity and that it could bring false hope. I gave him a concise reply then, and maybe even now. Let’s think twice and find the real truth after 150 years of research and 40+ years of neurology and the few short years with the Vascular, IR community. Collaboration with and a new field of medicine for the doctors that are ready to treat and save lives!!
YES, YES, YES!!
Here is part of the abstract that discusses these intraluminal defects found in the veins–
“Veins were injected with silicone, dissected en bloc, incised longitudinally to expose the luminal surface, and fixed. All valves and structural abnormalities were characterized and photographed using a stereomicroscope. Marked valvular and other intraluminal abnormalities with potential hemodynamic consequences were identified in 5 of 7 MS patients (7 abnormalities) and in 1 of 6 controls (1 abnormality). These abnormalities included circumferential membranous structures (1 MS and 1 control), longitudinally-oriented membranous structures (3 MS), single valve flap replacing IJV valve (2 MS), and enlarged and malpositioned valve leaflets (1 MS).”
If one goes back and reads Dr. B.B. Lee’s paper I linked in my first post, you will see that these are the exact same types of malformations found in Budd Chiari and other venous disease. In Budd Chiari, these lesions change blood flow and cause liver damage over a period of decades, eventually leading to liver failure. Called truncular venous malformations, they are congenital defects including annulus, webs, hypoplasia and malformed valves. Dr. Lee’s paper has pictures of these malformations from autopsies, as well.
Phlebologists study these malformations. Dr. Byung B. Lee, respected professor at Georgetown University, has spent his career looking at these lesions. He is not a varicose vein doctor—he is a vascular surgeon and performs liver transplants. Just because phlebology has not received respect from the medical field, and varicose vein cracks are made, does not mean that their field is unimportant. Dr. Lee told me that veins are much more important than we realize. Perhaps more important than arteries. There is much to learn, and we are at the beginning stages, but this study is corroborating what BNAC, Dr. Zamboni and others have noted. These malformations change blood flow.
This is a very small unpublished study. We have to await the publication if any to assess it. For example, we do not know if the observers were blinded to the diagnosis of the people whose veins they studied.
At any rate, these deformations in veins are normal variants. There is no way that such deformations could cause any damage to the brain without a large increase in intracranial pressure which has never been observed in patients with MS.
“CCSVI” is junk science and Zamboni`s “liberation” treatment is a cuel hoax, scamming the life savings of desperate people. The anecdotal reports of instantaneous relief of symptoms after “liberation” are classic example of faith healing to which MS patients are particularly susceptible.
See my blog for details.
http://bit.ly/pfabIF
Yes, I had faith healing – vision, energy, balance, strength, memory, and hearing. Thank God for my faith and Dr. Gary Siskin. It was so much better than all the drugs I have been receiving. It is now 10 months since Liberation.
Faith and hope have powerful psychological effects in some MS patients. Psychotherapy should be a major part of the treatment of MS.
Yes, your blog that is based on zero research. How many more decades would you advocate that researchers continue marching down the autoimmune path that has yielded little understanding still of this disease we call MS? How many more billions should be spent on research and medications that have contributed relief to MS sufferers that barely reaches beyond placebo? There is NO room for ideology in science – especially when that science so dearly affects the lives of millions of people. If there is any “cruel hoax” or “scammin the life savings of desperate people” being done it is being done by pharmaceutical companies and their doctor/enablers who sell patients the idea that the horribly expensive/side-effect laden medications they inject themselves with will appreciably change the course of their disease when those medications efficacy barely rises above the rate of placebo, and often makes the patient feel worse.
The “liberation” charlatans are making orders of magnitude more money that the CEO of any drug company selling drugs for MS with proven benefit.
Following venous angioplasty I finally got some improvement in symptoms after 21 years of having MS! If it’s “placebo”, I’ll take it over the “no-help-whatsoever” treatment given to me by neurologists!
Colin: Yes, this is a small study, but it is by a group of serious MS researchers, including Dr Fox. Fox had previously been sceptical about CCSVI, but his research shows that CCSVI is real, and is prevalent in people with MS. And while it has not been “published”. it has been presented at ECTRIMS/ACTRIMS, wth largest gathering of MS researchers in the world.
By the way, the subjects were blinded… they were DEAD!
The researchers really do not need to be blinde3d for this type of study; they are not looking for perceved changes, they could look at actual veins and see the malformations first hand.
Why if these are “normal variants” are they so much more prevalent in people with MS?
You may be a competent doctor in your field, but you are not an expert in MS, so your dismissal of this theory as junk science should just be considered as a “junk opinon”.
I said the OBSERVERS must be blinded to the diagnosis. We tend to see what we want to see and look harder when we want to find something. So the investigators could have looked more diligently in the specimens from MS patients to find “weird” membranes. We have to await the publication before trying assessing this study. Abstracts are notoriously unreliable.
All well-blinded studies of neck veins using various techniques, including that of Zamboni, have failed to find any difference in neck venous anatomy and flow between normal subjects and MS patients.
I may not be an expert in MS but neither is Zamboni. He is a varicose vein surgeon who thought he could cure his wife’s MS by dilating her neck veins, a highly unethical act. I am a cardiologist and cardiovascular physiologist and am astounded at the willful ignorance of cardiovascular physiology of the likes of Zamboni and the other “liberation” charlatans.
Colin, you do not think outside the box…this may because you are too busy collecting your “reward” for pushing drugs that kill eg. tysabri. Why do you not take this drug and THEN come back and voice your opinion, but then again, you may get PML and unable to
CCSVI is junk science and Zamboni’s Liberation treatment is a cruel hoax?? Really Callin?? Go tell that load of crap to Montel Williams as well as the growing numbers of MS patients who have rec’d relief from their symptoms due to this procedure, and not from the toxic drugs that Big Pharma would have us believe are so very effective. These are the same corrupt co’s that alter research results to get their poisons fast tracked for the sake of profit! Commiting unethical acts and scamming the life savings of desperate people is the exclusive domain of pondscum like BP! So, go crawl back to the rock you’ve been living under and keep kissin’ Big Pharma’s a– with their obsession for profits, having long since abandoned any ethics or morals in favor of mammon. While mindless minions may attend your blog, no one here cares to listen to your unsubstantiated blatantly, biased babbling ;( Go away!
So people with MS are idiots then Colin?
I cannot believe that you continue to peddle your anti PWMS rubbish.
Why is someone with MS “particularly susceptible”? Is it a result of our MS, or a symptom? Are we deranged, susceptible, wallowing in superstition, blinded by hope because we have MS? Or maybe in your deranged view, we deserve MS because we are so pathetic? Aaaah, but if you say that, then you would be going down the path of divine intervention, so that cannot be your position.
Until you can prove that there is no such thing as CCSVI, in any person with MS, I think you should go and find yourself a faith healer who may be able to cure you of your hate filled mindset.
Good luck, I don’t think it will be possible. Oh, if you keep on saying this rubbish about our particular susceptibility to all things hopefull, I will look to see whether you are in breach of equality legislation in Canada and with your governing body. You may find yourself praying for some divine intervention of your own if I did that.
When did I ever say I was “anti PWMS”?
I am anti unscrupulous charlatans preying on desperate people.
There is now very good proof from well-blinded imaging studies that “CCSVI” does not exist as a disease.
I will keep on fighting for the primacy of science over pseudo-science and, if that is in breach of The Canadian Human Rights Act, too bad.
Mr Rose I am proof that balloon venoplasty relieves symptoms of Ms i.e Fatique, Bladder urgency, Choking and coughing espicallky when eating or drinking.etc etc
Colin, your probably have access to pubmed so I suggest your read this paper: http://www.ncbi.nlm.nih.gov/pubmed/207127
‘nough said as they say in the UK.
Thanks Julie for being our eyes and ears on the ground at ECTRIMS. Thanks, as always, Joan Beal for your initial introduction of CCSVI to the US, and your ongoing commitment to our community.
Colin, I look forward to the day when you will finally have to admit to yourself that CCSVI is real, and that thousands of us are living productive lives again because we had our disease treated with venoplasty.
Now I’m off to see my daughter in a play, then to go work out. Thank you CCSVI Liberation for this gift!
Yes now over a year after my procedure for CCSVI I continue to sleep better and have much less fatigue – now if only we could have treatment here in Canada. It is such a shame that even vascular surgeons are not enthused, but who would be if all you saw were the few complications from this?
Two critical things explain the different results. The first is a “early” understanding of what CCSVI is. Initially it was thought of as a disorder of blocked veins. The diagnosis was there for dependent in part to identifying narrowings in the veins. We have come to realize it is a flow disorder primarily resulting from abnormal valves. Diagnostic tests looking for abnormal flow will detect on the order of 30% more abnormal cases than tests that use narrowed veins as a criteria.
Perhaps the biggest problem is the perception that CCSVI is MS. It is not MS. CCSVI occurs in people without MS. Let me repeat that CCSVI occurs in people without MS. Finding abnormalities in “normal” subjects is expected!
I will address the comments by Mr Rose. The venous abnormalities do indeed cause symptoms. Not MS mind you but very consistent symptoms that following treatment improve in over 90% of patients. I have witnesses this shame almost 1000 times.
You need to have an understanding of hydrodynamics to see why the flow obstruction in the extra cranial veins leads to an intracranial problem. The skull is a fixed volume. The arterial boils at systole leads to extremely pulsitle flow. Venous drainage must have a comparable flow curve since the skull does not change in volume with each heart beat. It is CSF flow that allows the laws of physics to be preserved. The extra cranial venous obstruction seen in CCSVI leads to alteration of CSF flow. The result is sheer forces acting on the brain with each heart beat.
Thank you, Dr Arata, Thank you! I experienced intense symptoms returns after my procedure. Was, very early, aware of the autopsy report knowledge and it puts two and two together. And now more explanation and proof. Just what I was waiting for. Now how to solve the next important pieces. We’re in anticipation…
Let’s think differently and find the real truth after 150 years of research and 40+ years of neurology and the few short years, but immensely valuable ones with the Vascular, IR community. Collaboration with and a new field of medicine for the doctors that are ready to treat and save lives!!
YES!!
Dr. Arata is one of those “liberators” making $zillions by doing a dangerous, unproven procedure on desperate patients. It is astounding to me that doctors in California are allowed to do so. In Quebec no doctor is permitted to do “liberation” or even do scans looking for “CCSVI” because there is zero scientific evidence that “CCSVI” even exists as a disease that requires treatment. Having patients swooning in praise after a “treatment” can be very intoxicating to a doctor, not to say profitable, and make them conveniently forget what they should have learned about basic physiology in medical school and invent pseudo science to explain their good fortune.
Arata is the one with a lack of understanding of hemodynamics. Obstruction of extracranial veins has never caused any problem with brain hemodynamics or symptoms in anyone including MS patients. Both internal jugular veins can be removed and sometimes are during cancer surgery with no resultant symptoms and certainly no MS. The emissary veins connecting extra- and intracranial veins allow diversion of internal jugular flow to the paravertebral venous plexus. The bottom line is that any venous obstruction can only cause pathology by raising intracranial pressure and that is normal in MS patients. Arata know this so he resorts to something he calls “sheer forces acting on the brain with each heart beat” to justify his behaviour. I am unaware of any such phenomenon and it is not described in any physiology textbook. Could he please provide a reference to this entity and how it causes pathology?
Acute venous obstruction often gets confused with chronic venous obstruction. Surgical removal or ligation of a vein, including the jugulars results in localized swelling and venous engorgement. These symptoms develop immediately. Chronic venous obstructive symptoms however take decades to develop. Most patients with surgical removal or ligation of the jugular do not live several decades.
Please refer to Clive Beggs for information on cerebral venous hemodynamics.
We KNOW CCSVI WORKS-just find a way to keep the damn things opened so us MS’er’s don’t have to repeat surgery-mine was done almost 1 year ago;results still astounding(know-on-wood,thank God)….How ironic that Vascular Surgeons WILL do the surgery/testing in Canada for patients displaying vascular problems-mention MS, your RIGHTS are ignored, then “tossed into the trash”, because the Vascular Surgeons are NOT PERMITTED to treat this problem if someone is presenting along with MS….what the Hell is wrong with this picture? Hypocratic Oath, anyone? Sometimes, it just scares the hell out of me to be a Canadian~~~~~~~~~
More correctly, “some patients report some improvement some of the time.” That is not the same as “we know it works.” What is the selection criteria for patients that will benefit? Is all MS a candidate, or just certain forms.
I requires more research and more rigorous studies. Science dictates proof. I don’t think we are here yet.
Bob
Maciej Zarębiński, MD, PhD (AMEDS) published a report (2011) on groups that benefit most from CCSVI:
1) Females
2) Relapsing-Remitting type of MS
3) At young age
4) With short disease duration
5) With lower baseline EDSS.
Gees Lyon can’t you just stop your non-sense? You follow the same guys around like kid hangs with the wrong crowd to appear like something he ain’t.
Thanks for explaining all that Michael Arata. All my symptoms have been corrected I am working full time and a month ago I walked in a 10 km walk. As for Colin Rose you should take your head out of your ass.
On Dec 8 it will be my one year anniversary of my Liberation Therapy. I have experienced alot of improvement. I have been very happy that I have gone thru the angioplasty…..to open the gate for others in my family and community. I will be getting tested again in a few months to see if anything has closed again…..(because my dr. is wanting me to see and keep a record). I would do the angioplasty again in a minute if needed. I am praying that someone comes up with new technology to see these veins better in other MSers and that a stent will be developed for veins that will not move. I think that is the answer for permanent repair! I am so glad that you have put this on your site. You reach alot of people!!!!
I am a doctor in Perth Australia. I am treating an MS patient. where did you get your surgery done? I would like to contact your surgeon with a view to have treatment for my patient.
John, is there a way we can communicate out of the public eye. I do know personally the vascular surgeon who is carrying out treatment on people with MS in the UK. I would need to ask him to contact you if he felt he was able to help. You can find me on Facebook.
Michele
I can also put you in touch with someone in Australia who has been treated by an Australian doctor… in case you want someone closer to home to share ideas with.
ONE MORE THING: This CCSVI procedure is a VENOPLASTY——–N O T an ANGIOPLASTY!!! Why oh why can the Media, People, patients everyone everywhere, refuse to use the correct terminolgy? Is it because it has to do with a “Controverisal Procedure” that no one has even bothered to correct this incorrect, albeit very WRONG, terminology? ONE HAS TO DO WITH THE ARTERIES-VENOPLASTY IS FOR THE VIENS IN CCSVI!! Come on everyone, I have said this Multiple times before and still no one seems to care!!! INCORRECT REPORTING SHOULD BE NOT BE TOLERATED IN THE MEDIA!!!!
Angioplasty is the technique of mechanically widening a narrowed or obstructed blood vessel. Angioplasty has come to include all manner of vascular interventions that are typically performed in a minimally invasive or percutaneous method. The vascular system comprises arteries and veins.
dr. Arata, I do not care if there are people with CCSVI and without MS. What interests me is that people with MS have CCSVI.
First, because I do not know if those people get sick of MS in the future, and second because you probably do not yet know why and how you turn on the MS.
P.S. I apologize for my English, but I’m Italian.
I have a question as to “stents for veins”……….would someone need to use a blood thinner for life as it is a foreign object implanted that potentially could become “clogged”? I have not idea and would appreciate any info! May seem silly to everyone, but nowhere (or no one?!) has ever seemed to ask this question that I am aware of! Gracias!~~~~~~~~~
Each center has a different procedure. I have 3 stents and I was on Coumadin for 6 months. I have been off for 3 1/2 months. But I exercise daily (aerobics) and just started weight training again. I am a dietitian and I eat a meditteranean & totally gluten-free diet and take cod liver oil. Clotting is caused by inflammation – so I take anti-oxidants (Tumeric, vitamin C, etc.). I’m going for a second procedure because the first one did not look at the azygous. The center I have chosen for my next procedure wants me to take Pradaxa for 30 days afterward. If I need stents then it will be longer. But this center uses IVUS (intravascular ultrasound) and through it one can see vein abnormalities and estimate baloon size better. I anticipate less damage from the treatment. Some people should wait until they have an experienced center close to their home. Follow-ups are inevitable.
Qute “I was astounded. This is news.”
This is what I said when Zamboni paper came out in Nov 2009.
Julie, what were You wring about then? Oh yes, MS drugs.
So now when a neurologist is looking at veins CCSVI is worth reporting.
You totally lack credibility.
As for Mr Rose—oh please, come on, come on, you are not an MS expert nor research because you seem so confused and misinformed about what you are talking about …and am surprised considering the negative opinions you have on CCSVI that you are even bothering to comment on this page at all.
Sadly you are what we would call an “interrogator” some one who is constantly finding fault with someone, criticizes, probes negatively aggressive, one with a control drama who likes to be intimidating to say the least!
I don’t usually waste my energy or time addressing people of this nature…but couldn’t resist this one time
On a positive note: Glad to see there is more and more encouragin findings surfacing on this very interesting subject of CCSVI research and treatment!
Colin, please spend the time and read the article again. You will read the word “Autopsy” the subjects examined are dead, you can’t have a blinded study on dead people. These people who have died with there disease of MS are providing real positive benefits to researching the mysteries of MS than your negative comments, my daughter has had CCSVI treatment after 10 years on drugs and the results are amazing, No More Cane, No More Cog Fog, No More vertigo, No More Numbness. I would recommend you get your veins examined because their appears a serious blockage in your brain.
Check Out My CCSVI Peeps Representing!
We are no cult Mr. Rose… We are informed, educated, and rational individuals who at a minimum don’t care for (in my case disdain) your status quo. How can a Drug Pusher call CCSVI junk science? Your little pin pricks and pills are the real snake oil in this scenario. How is that you can deride testing and a procedure as a means to milk money from the sick and not see the outlandish irony? Your beloved pharmaceutical’s results don’t stand up to scrutiny or the test of time, yet big pharma see’s it fit to charge more then the annual income of many healthy people for a year’s worth of their hoax in a syringe.
At Julie – glad your finally coming around.
Plumbing Issue
Not meaning to be crass, but I feel that MS is the result of a “Plumbing Problem.”
If the brain cannot drain properly, it is easy to understand that problems would remain in the brain and cause problems.
CCSVI is an excellent step.
The next leap needs to come from the greater medical community.
Most neurologist reject CCSVI before they listen. Because it runs counter to med school, no need to expand until published in New England Journal of Medicine.
Check out my CCSVI Peeps Representin’!
@ Mr Rose – We are no cult. We are rational, educated, and determined individuals who are no longer willing to idly except the status quo. Who are you to call CCSVI junk science? Personally I think you’re just trying to make a name for yourself at what ever cost. If history should look upon you at all, it will be only as a misinformed, rabble rousing, ne’er do well. How can you deride testing of, and treatment for inadequate venous return (and all that entails) as an attempt to “scam the life savings of desperate people” when the results of the blinded pharmaceutical studies you so champion don’t hold up to real scrutiny, nor the test of time? Big Pharma and the drug pushers who represent them are the Real Snake Oil Salesmen in this situation. Charging the annual income of an average “Healthy” person in the US for a years prescription of their Hoax in a Syringe. Tell me again sir, who is preying upon the hopes of the hopeless in this instance?
@ Dr. Stackowiak, to this point I have written this about.com MS guide off as doing nothing more then paying lip service to CCSVI, much the same as the NMSS does. While I applaud your’s and Dr. Fox’s epiphany, and understand that you were astounded, this in no way is “news”. It was “news” back in ‘09 when the CTV segment aired, but there have been many, many studies and collaborators who have come to essentially the same conclusion as Dr. Zamboni since then. Why the Dr. Fox study resonated with you over all of the others is curious to me. Never the less, I will pay more attention to this site now in hopes that you begin to champion this new paradigm of MS etiology.
No well-blinded imaging study of neck veins has shown “inadequate venous return” in MS patients or anyone else.
I have no connection to any drug company financial or otherwise. I am just a cardiovascular physiologist trying to save individuals and governments from wasting money on the “CCSVI” scam.
Some drugs targeting the immune system have been proven in blinded randomized trials to slow progression of plaques. Neither Zamboni nor any of the other charlatans making $millions from the “liberation” scam has never done a blinded randomized trial of “liberation”.
That does not say that autoimmunity is the primary cause of MS only that the immune system has role in the pathophysiology of the disease.
“That does not say that autoimmunity is the primary cause of MS only that the immune system has role in the pathophysiology of the disease.” You say Mr.Rose
Of course this is true, probably as true as the veins have a role to play in aggravating the symptoms of MS.
Now, come to me and I might want to do an experiment with you. I will pay Dr.Arata to block your jugulars ( one completely and the other at 2/3 for 6 months and we will look at what will happen with you. It is on me. I might need an IRB for that though. Let me check this out. What do you think ? Maybe you will not develop MS but I garantee that you will feel bad. You might just end- up like those horses in St-Hyacinthe who were once participating in horse races but who can no longer do that because they can hardly run because they have thrombosis in their jugulars. It would be interesting to scan them to see if they developped brain lesions. Cheers.
Bring on more raserch for CCSVI! To think we see these abnormalities in other parts of the body that cause problems and to say it can not happen in the CNS is the unthinkable to me.
Venous abnormalities can only cause organ damage by raising venous and intra-organ pressure. Intracranial pressure in MS patients is normal so there is no way that “CCSVI”, if it exists as a disease, could cause brain pathology.
The methodology of measuring intracranial pressure varies between studies. This would make a great panel debate at a conference. There is so much more to learn.
1) Newman, N. J., Selzer, K. A., & Bell, R. A. (January 01, 1994). Association of multiple sclerosis and intracranial hypertension. Newman, N. J., Selzer, K. A., & Bell, R. A. (January 01, 1994). Journal of Neuro-Ophthalmology : the Official Journal of the North American Neuro-Ophthalmology Society, 14, 4, 189-92.
Case studies measured opening pressure on lumbar puncture.
2) Skormets AA, et al. Efferent method of the treatment of cerebrospinal fluid hypertension in exacerbation of multiple sclerosis. Zh Nevrapatol Psikhiatr 1991;91:23-26.
Russian case study measured opening pressure on lumbar puncture in 33 patients.
2)Intracranial venous pressure is normal in patients with multiple sclerosis. Meyer-Schwickerath, R., Haug, C., Hacker, A., Fink, F., Seidel, D., Hartung, H. P., & Haupts, M. R. (January 01, 2011). Multiple Sclerosis (houndmills, Basingstoke, England), 17, 5, 637-8.
Intraocular venous occlusion pressure was measured by ophthalmodynamometry.
One question I would like to ask, and I know some people will shoot me down for this, but does this mean that until we know what is actually going on, are we being premature in getting treated for CCSVI?
Could we be damaging the veins even more by constant interference – we do not know the long term effects yet?
I am also appalled that the MSS here made no mention of this presentation in their recent MS Matters. I find that bordering on negligence.
Should we be pushing for bigger and bigger trials, similar to the one this presentation covered, because until we know the full picture, we are stabbing in the dark and possibly doing long term harm?
Do we need to know exactly what is required rather than getting continually treated. As you say, veins are delicate and maybe they don’t take too well to continual intervention?
We do know the full picture. No well-blinded imaging study has been able to demonstrate any difference in neck venous anatomy or flow between normal subjects and MS patients. “CCSVI” does not exist as a disease and “liberation” is futile and potentially fatal. There is no justification for trials of “liberation.”
Can only wish there was as much energy to totally understand the affect of using any of the ABCRT drugs that is used rather than taking shots at something new in CCSVI. Instead we blindly “stick” ourselves with one of the many MS drugs available hoping it may slow the progression of the disease. For once let’s hope we find the proper resource and support in finding the true answer to this disease be it CCSVI or any other new discovery. In my opinion, we and our doctors are being played by the many drug companies that claim to have the answer in helping people with MS. By the way, after taking three different MS drugs during my first 16 years with having MS, I stopped cold turkey taking any of these silly drugs two years ago and feel absolutely great about my decision to stop the nonsense of taking these crazy MS drugs. Only wish I would have NEVER started taking these MS drugs per my docs orders many, many years ago.
For those of us who are affected by MS we believe that there is plenty of justification for extensive trials until “liberation” is the standard treatment for MS. “Placebo effect” my a$$. Thirteen months after her CCSVI treatment, my wife’s MS symptoms have been greatly diminished or completely disappeared. Colon, what is your real motivation for your vociferous attacks? Ego? You’ll never be as famous as Zamboni.
My son was diagnosed with MS three years ago after losing his vision. He was told to choose which drugs he would like. He was told that the cost to the National Health Service would vary between £10k and £20k per year,but the decision was his. He refused the drugs offered and started taking LDN. He has a busy job, but was struggling with memory, tiredness and numbness in his legs. I found out about CCSVI treatment in Scotland. He was tested and treated in August and had an immediate improvement in all his symptoms. He is returning to Scotland in January for follow up tests that are designed to demonstrated these improvements – memory tests, dexterity tests and so on. He is full of hope and joy and has just had a baby girl and even better has saved the NHS £20k a year. I do wonder who it is who is making the money. It is not the people offering CCSVI, who carry out a detailed operation at a reasonable price for the care, expertise and service they provide.
this is a very interesting debate. but for many people it goes beyond the philosophy behind using untested, extreme, or non traditional treatments; it goes for many people to the question of symptom relief. i have had ms for 11 years and had a killer relapse last fall from which i have not yet bounced back. i’m currently taking rebif which has not helped one drop with my symptoms and makes me terribly ill with side effects. am i planning to let someone open a vein in my head? not yet, but i can see the appeal. something that gives relief, even at great risk, might be in my future. most ms patients are adults and have the right to choose the best treatments for themselves on a case by case basis. more power to anyone who makes this choice. thanks to all who encourage more research and more options.
Hi. I was diagnosed almost 2 months ago – Aug 31st. I just started Rebif 4 days ago. I realize every case is different but your experience is not encouraging (to me). How long have you been on Rebif and during that time have you had new lesions form? Thanks.
@ colin Rose : “There is no way that such deformations could cause any damage to the brain without a large increase in intracranial pressure which has never been observed in patients with MS. ” You say.
Well, nobody has ever measured the increased blood flow resistance in my capillaries , in my small and larger intracranial veins nor measure the increased pressure resulting of it. In fact, nobody has ever measured anything in my case. I am not a statistic. I am alive. Test me with the best technology and expertise and then you can make your conclusion. Until then, an anecdotal evidence is better that an assumption like you stated as far as my case is concerned. Thank you.
question to Colin Rose is why did you go to my doctors surgery and say that you was the owner to me and travel all the way from Canada .You make no sense and have obsessions thats obnormal
You must be confusing me with someone else. I haven`t been in the UK in the last 10 years and have no idea who is your doctor.
your are telling lies again .I find that you always have done.You went out of your way and how you found me is wrong .Many know youre a bad man .I am not confused at all
I knew you woud deny it , youre a very bad man who lies .You know full well about things and youre trying to cover your back I find you a real BAD man as many thousands also do ,youre trying to cover your back .Always knew you was up to no good and knows why
@ Colin Rose. I suggest you read this :
Zamboni wrote in the discussion section: “ Second, regarding the causative role of CCSVI in MS, our review of the literature revealed descriptions of associations between the extracranial venous obstructive malformations described herein and disabling neurological pictures however, the latter were defined by these authors generically as myelopathies, without a precise diagnosis and any mention of MS” referring to Leriche H, Aubin ML, and Aboulker J. (1976 in France ) and Tsuladze II. (1999 in Russia)
http://www.unilim.fr/sfnc-test/IMG/pdf/Book.pdf
(2006)
Réunion annuelle de la Société Française de Neurochirurgie
Joint Meeting of the French and Russian Societies of Neurosurgery
March 29 – April 1, 2006 Caen, France
SURGERY OF THE JUGULAR VEIN SYSTEMS IN THE TREATMENT OF THE MYELOPATHIES OF
VENOUS ORIGIN
Tsuladze II.
RMAPE, Moscow, Russia
As considered J.Aboulker intraspinal venous hypertension may be responsible for the myelopathy.It arised by excessive flow into the internal vertebral venous plexus or impairment of outflow,resulting in numerous cases of unnown spastic paraplegia or tetraplegia.These hypertension in the intravertebral plexus can be caused by association of multiple abnormalities of the major path-ways of the caval and azygos systems (atresia, stenosis, compression, thrombosis) and could be demonstrated by selective phlebography.The most
frequent reasons are localized at the neck level and we would like to report our experience of eighteen operations on the major branches of the veina cava superior were made in 17 patients. In 12 cases-internal jugular veins were involved into pathological process,and others–left Brachiocephalic trunc one.
The main phlebographic signs were stenosis and compressions. Angiolysis and decompression were performed. Neurological improvement was observed in 14 cases.
To my knowledge no one has measured venous pressures in the intravertebral venous plexus and there is no proof that any myelopathy is caused by vein obstructions. That would be highly unlikely given the redundancy of the venous plexus. If you have any references proving the existence of such pathology please give us the links.
This is an interesting read: http://www.biomedcentral.com/1471-2377/11/128
“The jury is out” on the CCSVI issue and Colin Rose would have been disqualified as a jury member at an early stage due to being biased. It seems to me that he hates Italians, hate any progress in remedies for ms and he seems to hate the world in general.
Opposition is always a good thing, but ego tripped fanatics we can be without. If now Colin Rose is so awfully clever, why doesn´t he prove that CCSVI is a hoax? Wel …. he can´t.
Is there an”expert” in psychology out there who can explain to me why naysayers such as Colin Rose feel their “opinions” need to be heard? I might care to listen if he had any real understanding of what it feels like to have MS for over 21 years with absolutely no treatment available, like me, but he doesn’t.
I can’t understand why he feels he has to voice such negativity about CCSVI when it really has nothing to do with his life. Or does he have some vested interest in denying people suffering from a debilitating medical condition some hope in retrieving some of the quality of life they’ve had ripped away?
Are you implying that only doctors who suffer from a disease themselves are qualified to diagnose and treat that disease?
In such were the case very few patients would have a doctor. But even those doctors are unqualified to treat patients because doctors with a disease or with loved ones with a disease, like Zamboni, are the least qualified to treat that disease because their professional judgement in impaired.
See the AMA’s statement on self-treatment or treatment of close family members:
http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion819.page
You are not diagnosing or treating anything. Your “denialism” is tiresome.
Julie this is a great article. You seem to have been waiting for something to really hang your hat on about CCSVI. The autopsy findings are really something special because it is observable pathology and there are pictures for people to see and judge.
I REALLY like the way your reasoned how these flaps and webs might be causing restenosis–I agree with the idea that some may get mashed on the side of the vein for a month or a few then go free again to cause fresh blood flow issues, or possibly these fragile bits of tissue may be missed altogether as they are movable and not necessarily visible on MRV, venogram, or even doppler if not trained to see them.
and I know that both Dr Simka and Dr Zamboni are looking at the possibility that open surgery is the best approach for some of these anomalies. I also know that because these intraluminal defects are really hard to see even with venograms and this has been an achilles heel for the diagnostics, particularly in the face of demands for “blinded controlled trials” People assuming they can just get in there and test it out are mistaken.
for Colin- If people don’t know how to reliably see these with non invasive diagnostics in a completely reproducible way, what is the value of skeptics blindly looking and declaring that they saw nothing? Is that “science” just because it was blinded or is it self-deception?
Julie I am glad you reported your experience–wish I’d been there too.
I wrote a book on CCSVI that discusses the ins and outs of the theory called “CCSVI as the cause of Multiple Sclerosis: The Science behind the controversial theory”
(The publisher picked the title.)
it explains the Zamboni model, current research, historical research that supports the model, and concerns people must know if they are considering getting into a trial or treatment, etc.
Published by McFarland in their health topics series, 10% of my royalty goes to research of CCSVI. Marie Rhodes RN
Julie this is a great article. You seem to have been waiting for something to really hang your hat on about CCSVI. The autopsy findings are really something special because it is observable pathology and there are pictures for people to see and judge.
I REALLY like the way your reasoned how these flaps and webs might be causing restenosis–I agree with the idea that some may get mashed on the side of the vein for a month or a few then go free again to cause fresh blood flow issues, or possibly these fragile bits of tissue may be missed altogether as they are movable and not necessarily visible on MRV, venogram, or even doppler if not trained to see them.
and I know that both Dr Simka and Dr Zamboni are looking at the possibility that open surgery is the best approach for some of these anomalies. I also know that because these intraluminal defects are really hard to see even with venograms and this has been an achilles heel for the diagnostics, particularly in the face of demands for “blinded controlled trials” People assuming they can just get in there and test it out are mistaken.
for Colin- If people don’t know how to reliably see these with non invasive diagnostics in a completely reproducible way, what is the value of skeptics blindly looking and declaring that they saw nothing? Is that “science” just because it was blinded or is it self-deception?
Julie I am glad you reported your experience–wish I’d been there too.
I wrote a book on CCSVI that discusses the ins and outs of the theory called “CCSVI as the cause of Multiple Sclerosis: The Science behind the controversial theory”
(The publisher picked the title.)
it explains the Zamboni model, current research, historical research that supports the model, and concerns people must know if they are considering getting into a trial or treatment, etc.
Published by McFarland in their health topics series, 10% of my royalty goes to research of CCSVI. Marie Rhodes RN
Where goes the other 90% of your royality?
Never mind, that are just crumbs from the CCSVI table.
You are just helping big players to pick a cream and the cake.
M.
Julie, thanks so much for the information from the conference and particularly on CCSVI! I am so impressed with the range of participants in the discussion from every part of the world, all with a little different take on the subject!
Bob
When I had CCSVI treatment, I had defective valves and the treament was what is being used in the Kuwaiti studies – destruction of the valves which doesn’t entail a balloon and has a very low rate of restenosis.. Was it the best thing to do? I don’t know but it seemed better than having to undergo the treatment time after time with possible unpleasant results.
First – thank you Marie Rhodes and Mike Arata for your contributions to the study and treatment of CCSVI. As Joan Beal stated, this Dr. Fox study confirms Dr. Zamboni’s findings so it is not new to us but the more evidence we have, the better.
Next – please stop responding to Colin Rose. It simply feeds his ego and his obsession with knocking down the CCSVI theory as it relates to MS. If we ignore him maybe he’ll eventually go away. I’ve ignored him for 2 years now and will never respond to his unreliable posts. Saying something over and over again doesn’t make it true – just ignore him like a naughty child and he will finally stop when he doesn’t get attention.
Hello,
Wonderful article and fine comments, except this one dude – who blaims to be doctor. Im confident he is just troll, probably some pimple face teenager, just fooling around. Real doctors has some basic intelligence to understand current situation.
My wife had her operation 16 months ago and her symptoms are now gone. She had fatique, balance issues, weakness and spasticy. MS medication (rebif) didn’t do any good, quite opposite – just made her symptoms worse.
- Ernst
its easy to see what COLIN ROSE is up to and why and he has been in UK the last 10 years proof is on his flicker page of photos he constantly lies he needs help for his mind
I agree with Colin Rose’s position on CCSVI. I have MS. I am also a skeptic of treatments that are not backed by sound scientific data. I have argued many times against liberation therapy, not because I am cruel and obstructing the rights of patients. I argue against it for the pure and simple ethics the procedure violates.
I do think that not only MS sufferers are ignorant of the scientific process, but the general public is ignorant of the scientific process and the philosophy of science.
I feel Colin Rose’s frustration. It goes beyond CCSVI. It is truly about the defense of science.
I personally don’t care if anyone says they were healed. If this were HIV, the so called cured would be spreading it to each of their partners. Since this is MS, the so called cured get emotional support that presses them further to defend the procedure.
I DONT CARE attitude is one of someone who is very cruel indeed very.NO one has ever said its a CURE ever learn read and hope that you are never ever ill one day.These words will come back at you ,you have just done.
What has been lost in this back and forth is the information Julie first posted.
SCIENTIFIC evidence of truncular venous malformations in jugular and azygos veins of people w/MS, as documented by researchers and presented (to much excitement) at ECTRIMS.
This is what was detected in my husband’s jugular veins almost 3 years ago at Stanford University. His malformations were treated (he was NOT treated for MS, but for central venous stenosis and a stenotic dural sinus.) Coincidently his MS has not progressed since. He is back to full time work, and has had major symptom relief in heat intolerence, cognitive fog and fatigue. His gray matter atrophy has reversed and he has no new lesions, as shown on MRI.
If people w/MS do not want to be tested and/or treated for truncular venous malformations creating central venous stenosis and impaired cerebral blood flow, that is certainly their right. But if pwMS DO want to be tested and treated, that should be their right, as well.
For more information on the science, not opinion, please visit http://www.ccsvi.org
I was treated 1 year ago in Albany by a fine fine person and a good doc (Dr. Siskin). It did wonders for me! No more choking episodes, no constant yawning, no more biting my tongue, much better bladder control, improved energy, and the big one for me—> no more vertigo!!!!!
My sister really had MAJOR improvements. B 4 ballooning she could walk about 50′………………….After treatment she now walks 2.5 miles daily and other cool things.
This C. Rose character sounds like a person that has ZERO friends so he spews out old fashioned BS. IF YOU CAN’T SAY ANYTHING NICE THEN DON’T ANYTHING AT ALL is something he might like to incorporate into his responses. One other thing: He is living proof why some mothers eat their young.
You ask: “I’ll admit that I don’t know exactly why opening veins would work so well to relieve MS symptoms, but there seems to be plenty of anecdotal evidence that it does.”
Isn’t the answer that these “MS” symptoms are in fact CCSVI symptoms and as a result, respond to treatment of CCSVI.
At the same time, the fact that they have been long thought to be symptoms of MS suggests that MS is in fact related to CCSVI.
Michele Findlay – I can’t find you on facebook. Could you please pm me.
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