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I wrote a 'Point of View' for the Annals of Neurolgy and submitted it. Unsurprisingly it was rejected. AoN did not even ask for comments from my reviewers (Profs Zamboni, Sclafani and Pillinger). The article is posted below. Please note that it was submitted to AoN on 2-Nov-10, some of the information is already out of date. For instance I did not use the term CCSVI syndrome. I submitted similar articles to other medical journals but was rejected each time. I will tell you about this in latter posts.

I have a letter awaiting publication in the Multiple Sclerosis Journal, hopefully it will be published soon.

Mark W

ANA 10-1462 (warning it is 3500 words)
------------------------------
2000 Multiple Sclerosis Patients Have Already Chosen A Novel Therapy

Abstract

People with Multiple Sclerosis discuss Chronic CerebroSpinal Venous Insufficiency avidly, using the worldwide web. Over 2000 People with Multiple Sclerosis have already received therapy for Chronic CerebroSpinal Venous Insufficiency.

This point of view addresses:
a) Knowledge and understanding of many Multiple Sclerosis patients concerning Chronic CerebroSpinal Venous Insufficiency.
b) Brief review of many neurologists’ position, and of recent ‘Chronic CerebroSpinal Venous Insufficiency’ investigations lead by Multiple Sclerosis neurologists.
c) Personal reflections on Multiple Sclerosis and this symptomatic therapy.
d) Pointers to views of a group of vocal and politically aware patients.

21st century communication facilities mean that patients can be as informed about Chronic CerebroSpinal Venous Insufficiency as most neurologists. People with Multiple Sclerosis are patients exercising informed choice when undergoing Venoplasty for Venous Insufficiency, not blindly accepting the latest snake oil.

Venoplasty for Venous Insufficiency is available for people with Multiple Sclerosis, with the financial means to procure it, in a rapidly expanding number of centres around the world. I predict that the number of People with Multiple Sclerosis having had Venoplasty for Venous Insufficiency will exceed 5000 cases in 2012. If MS experts do not start to consider the patients’ view, the divide between MS neurologists and many of their patients could well become a chasm.

MS is an unpredictable and poorly understood disease and it is the right of everyone with this life long and progressive disease, to select a safe symptomatic therapy, without interference.

Introduction
People with Multiple Sclerosis (pwMS) discuss Chronic CerebroSpinal Venous Insufficiency (CCSVI) avidly, using the worldwide web. Globally, over 2000 pwMS have already received testing and therapy for CCSVI, Hubbard web interview (1). These actions are in direct opposition to leading MS neurologists and MS Societies in UK, USA, Canada, Germany, among others, who are siding with MS experts.

My point of view addresses:
a) Knowledge and understanding of many MS patients concerning CCSVI.
b) Brief review of many neurologists’ position, and of recent ‘CCSVI’ investigations by MS neurologists.
c) Personal reflections on MS and this symptomatic therapy.
d) Pointers to views of a group of vocal and politically aware patients.

Patients’ Knowledge
Knowledge of CCSVI is moving rapidly for web literate people with MS. A number of patients have read research initiating from a theory by Professor Paolo Zamboni, University of Ferrara, Italy (2, 3). Their next step was to read pilot studies from vascular specialists, in countries as diverse as Jordan (4) and Poland (5). Added to this is the real life clinical experience of over 2000 pwMS, who have undergone balloon venoplasty to de-stenose major veins. This data makes it difficult for most rational pwMS to say that restrictions in major veins are definitely absent from their bodies. Next they need to decide to obtain a diagnosis now or await more research.

It is noted that many pwMS use the term CCSVI for restrictions in major veins, which is the symptom found by vascular specialists. CCSVI is the term Zamboni uses for his hypothesis (2). Sclafani (6) describes the pathology of vein restrictions as fused, reversed, thickened, and other abnormally located and developed valves, with atresias, hypoplasias, duplications, webs, septums, and kinks also occurring. These abnormalities are mostly located centrally near the confluens, Sclafani also reports. Web discussion pwMS report that vein restrictions have been found and treated in left and right internal jugular, azygos, hemi azygos, left and right brachiocephalic veins. Diversity of vein restrictions may relate to the type or severity of MS but there is no conclusive evidence concerning this.

The possibility of reducing disability progression is a dream of most pwMS. Patients have been informed that vascular comorbidity is associated with a substantially increased risk of disability progression in MS, even though this study did not investigate restrictions in veins, Marrie et al (7). An inquiring pwMS then asks, “Is there are a correlation between MS and restrictions in major veins?” Large-scale research is being conducted at the Buffalo Neuroimaging Analysis Center (BNAC) Buffalo, New York, USA, with 1700 subjects and controls (8). Zivadinov et al presented preliminary results from BNAC at the Annual Meeting of the American Academy of Neurology, in Toronto, Canada in April 2010 (9). This research clearly shows that a correlation exists between vein restrictions and MS in more than 50% of pwMS, but BNAC’s use of relatives of pwMS as controls complicates any interpretation of the control group data. Demands, from pwMS, for testing for possible vascular problems, like restrictions in major veins, naturally followed such results.

Vascular researchers have used a non-invasive screening for vein restrictions in the neck, using Colour Doppler Senography, Simka et al (5). The gold standard for diagnosis uses selective venography. This method and the defects of others are described Hojnacki et al (11). Patients appreciate that the only definitive test for restrictions in major veins uses an invasive selective venogram. Sclafani (6) reiterates that without the selective venography procedure no confirmed or negative diagnosis may be given. Vascular specialists, who undertake selective venography daily, inform pwMS that it and balloon venoplasty are low risk procedures. This makes their choice of invasive venoplasty simpler. Plus the fact that no death has been reported following balloon venoplasty is the unequivocal web message circulating among pwMS. It is noted that one pwMS with a family history of stroke died of a brain haemorrhage while on the anticoagulant warfarin, following stenting for CCSVI (web information). Patients susceptible to brain haemorrhage from clot reduction medication should be prescribed low risk drugs, for example, low molecular weight heparins, instead of oral anticoagulants.

Patients, who understand the risks of ballooning veins, will not wait for proof of a link between MS and restricted major veins. They challenge the need to wait for 5 to 10 years for detailed and expensive research programmes, demanded by some MS neurologists (10). PwMS do not understand why MS neurologists believe they have the right to control symptomatic treatment for pwMS in an area, which is outside their expertise. Consider the use (in the UK) of botulinum toxin (botox) by urologists for pwMS with bladder issues (11). The UK MS Society and many neurologists support this procedure after a trial with 43 patients. Why was this totally different standard used, compared to the extensive double blind, multi-centre clinical trials being demanded for CCSVI? Balloon venoplasty is an available procedure, which simply adapts methods in everyday use (1, 6). This information assists early adopters in their decision to choose venoplasty for venous insufficiency (VVI) treatment.

Brief review of neurologists’ concerns and their ‘CCSVI’ investigations.
The first academic salvo over CCSVI emanated from MS neurologists at Wayne State University in March 2010 (10), followed by a Lancet Neurology editorial reporting opinions of UK ‘leading experts’ to attempt to justify halting any treatment of CCSVI symptoms in pwMS. “Poor judgment in medicine can lead to interventions with fatal consequences. Lives should not be lost before these interventions are halted”, commented Jane Qiu, (12), in May 2010. Some MS neurologists have marshalled additional opposition to Zamboni’s hypothesis, with papers from Germany and Sweden. Doepp et al (13) report that no cerebrocervical venous congestion was found in an extended extra- and transcranial color-coded sonography study in a small sample of 56 MS patients and concluded that Zamboni’s hypothesis that cerebral venous congestion plays a significant role in the pathogenesis of MS is challenged. Sundström et al (14) studied 21 relapsing-remitting multiple sclerosis cases and 20 healthy controls with phase-contrast magnetic resonance imaging. In addition, in pwMS, contrast-enhanced magnetic resonance angiography was performed. The study concluded that no evidence confirming the suggested vascular multiple sclerosis hypothesis was found.

Reflections on MS and this symptomatic therapy
A cursory analysis of these neurologist lead studies questions why none used published diagnosis methods described by vascular practitioners (5, 6, 8, 11), and why the etiopathogenesis of MS has a “prevailing view” (14) after over 150 years of diverse opinions on MS. The web has generated conspiracy theories as to the reasons behind the purpose and funding of such research. Many rational pwMS feel cast adrift by many MS neurological researchers, who have failed to attempt to address the fundamental questions on vein restrictions and MS, which are:

1 – What proportion of pwMS have restrictions in major veins, when investigated using invasive selective venoplasty?

2 – What happens to the physical health, mental health and general well being of pwMS, if all occurrences of restrictions in major veins are de-stenosed, using balloon venoplasty?

In near future, I hope that some MS researchers appreciate that the definitive diagnosis and therapy, uses venography, an invasive procedure, to conscious patients. Blinding of studies is highly problematic and ethical approval of an invasive procedure to non-MS controls could be difficult. Trial subjects are likely to read web reports saying that balloon venoplasty may be felt, as the subject is conscious throughout the procedure. I am curious to know if real blinding is possible in such trials. Proper studies will require designs, which are markedly different from the placebo-controlled double blind ones used for new MS drugs. These studies should test de-stenosis in combination with the best available MS drug therapy and alone in drug naïve pwMS.

Currently, vascular and MS researchers cannot agree if restrictions in major veins are present in pwMS, let alone how to find this symptom, or what to call it. PwMS will be best served by joint research on the fundamental questions, rather than a turf war, which is occurring currently.

In my personal attempt to gain an overview of MS, over the past 8 years, I have studied many MS papers. With this overview, I suspect that MS will be found to be a disease initiated by genetic traits combining with gestational, immunological, environmental, vascular and other factors. These factors, in non-unique permutations and combinations, provoke some people with genetic susceptibility to develop MS, but not others, even with homozygotic twins (15). This makes Multiple Sclerosis a truly complex multi-factorial disease, and years more research will be needed before the genetics and interactions between relevant factors are fully explained. However, why is this safe symptomatic therapy not permissible in the intervening period?

From anecdotal reports following venoplasty for venous insufficiency (VVI), I suggest that two separate groups of symptom changes may require investigation in future research:
- Early, possibly vascular driven symptom changes.
- Later, possibly neurologically driven symptom changes.

The early improvements described by early MS adopters of VVI include reduced cognitive/brain fog, eased muscle spasm/tone, warmer feet and/or hands and the return of rapid eye movement (REM) sleep. These changes are reported as starting only hours or days after the de-stenosis procedure. I suspect that these changes will be attributed to improved CNS perfusion, gained from better blood flow. The resultant reduced levels of waste products in the cerebrospinal fluid and then in CNS cells is likely to be the more significant factor in the improvement in cell performance, rather than improved oxygen levels. My judgment comes from considering hyperbaric oxygen therapy, which certainly increases oxygen in the CNS and has been used for 25 years in pwMS. Oxygen therapy has had limited success, when compared with the anecdotal reports following VVI. Lack of oxygen could lead to cell damage and death, which are irreversible. Whereas, elevated waste product levels could simply slow performance of CNS cells and is in theory reversible. Further research is needed to determine the mechanism bringing the positive effects but the anecdotal evidence from the large majority of 2000 pwMS, in multi-centres, does not suggest there are sufficient risks to justify waiting for more research. The low risk procedure of VVI appears to alleviate CCSVI in most pwMS. Unfortunately, it is only available for people with sufficient money or insurance to pay for it.

Later and gradual improvements described following VVI include anecdotal reports of changes to most symptoms of MS. These changes are often reported as occurring more than 90 days after de-stenosis therapy. Remarkable changes include a patient who was wheelchair bound but became able to walk again after de-stenosis therapy and an intensive programme of physical therapy. I suspect that remylination is a factor in this type of case but brain plasticity also needs to be investigated, as either or both may occur. Remylination is a slow and usually incomplete process in pwMS; therefore any similarities or differences in the CNS following VVI need to be fully investigated, using the latest scanning techniques.

Amongst the anecdotal reports are instances where improvements to MS symptoms only last for a few days. MS symptoms vary greatly over time, so such short-lived benefits could be due to a post procedure boost or placebo effect. Future studies need to be sufficiently long term in order to reduce any criticism of the reporting of such effects and also need to monitor possible re-stenosis in trial subjects.

Research and anecdotal evidence is far from proving a cause or effect relationship between major vein restrictions and MS. However, patients are not concerned if the correlation coefficient between MS and vein restrictions is 0.55 (8), 0.84 (3), 0.9 (4) or 0.9 (2), and they are indifferent if their vein restrictions are a cause or a product of MS. They simply ask:
Do I have the symptom, restricted major veins, or not?
Some PwMS consider that a diagnosis of MS is sufficient for them to demand an invasive catheter venogram in order to identify any venous abnormalities worthy of venoplasty for venous insufficiency (VVI).

MS experts would be prudent to remember that treating symptoms with available therapies, before understanding the whole disease process has been a successful medical and pharmaceutical practice for many decades. PwMS do not intend to deviate from this custom now and are not prepared to wait for an explanation of the science behind the correlation between restrictions in major veins and MS, before correcting any symptoms identified. MS neurologists should step aside and stop obstructing pwMS from obtaining this low risk diagnosis and therapy, or face the anger of politically active pwMS

Vocal and politically aware patients
In the absence of collaboration from most neurological MS experts, pwMS, their families and carers have created a website, www.ccsvialliance.org, to supply balanced information, primarily to United States residents. Additionally, http://csvi-ms.net/en provides background on CCSVI and a comprehensive reference list. In the UK on 12 July 2010, the Daily Telegraph, page 23, titled an article ’It’s a turf war, and we are the losers’. The main article text is available online (16).
21st century communication facilities mean that patients can be as informed about CCSVI as most MS neurologists. The web is brimming with the latest research papers in this area, plus seminars from vascular experts who have performed VVI are available online. No longer is a knowledgeable pwMS forced to wait for pronouncements from their MS neurologist. PwMS are patients exercising informed choice when undergoing VVI, not blindly accepting the latest snake oil on offer.

Conclusion
Professor Zamboni recommends that balloon venoplasty be used alongside disease modifying drug therapy for MS, in monitored situations. Hardly a radical suggestion, while more research is conducted, for patients coping with this life long and disabling disease. Balancing the risks against possible benefits must be entrusted to informed MS patients. People with MS, like me, should be permitted to choose for themselves. In our global village, the de-stenosis procedure or venoplasty for venous insufficiency (VVI) is available for pwMS with the financial means to procure it, in a rapidly expanding number of centres around the world. This gives some pwMS the choice they deserve and I predict that the number of pwMS having had VVI will exceed 5000 cases in 2012, such numbers will make the current position taken by many MS experts untenable. I advise MS experts to start to consider their patients’ view, otherwise the divide between MS neurologists and many of their patients could well become a chasm.

My personal conclusion to my research was to make a trip from Oxford, England to Athens, Greece for a diagnosis. There I was told that I had restrictions in four major veins and I asked to have them de-stenosed, using balloon venoplasty. The diagnosis and procedure was performed successfully by pioneering, consultant vascular surgeon, Mr C Kartkaletsis and team in June 2010.
I fully appreciate that it is too soon to conclude anything about the long-term impact of VVI on my MS. Above all, MS is an unpredictable and poorly understood disease. However, it is my right, and that of all others with this life long and progressive disease, to select a safe symptomatic therapy, without interference or obstruction from experts.

Mark A Walker, Oxford, England.

Author’s names, degrees and affiliations;

Mark A Walker, BPharm, MIPharmM, MRPharmS.
Chair, Oxford Multiple Sclerosis Therapy Centre. www.omstc.org Charity Number 900278

I have no conflicts of interest and I have received no financial support for this article.
References:
(1) www.komonews.com/home/video/106175483.html (accessed 29th October 2010).

(2) Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Tacconi G, Dall'Ara S, Bartolomei I, and Salvi F:
Vascular Diseases Center, University of Ferrara, Ferrara, Italy.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2009 Apr;80(4):392-9.

(3) Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Gianesini S, Bartolomei I, Mascoli F, and Salvi F:
Vascular Diseases Center, University of Ferrara, Ferrara, Italy.
A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency.
J Vasc Surg. 2009 Dec;50(6):1348-58.e1-3.

(4) Al-Omari MH, and Rousan LA:
Radiology Department, King Abdullah University Hospital, Jordan University of Science and Technology, Jordan.
Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):115-20.

(5) Simka M, Kostecki J, Zaniewski M, Majewski E, and Hartel M:
Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland
Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):109-14..

(6) Sclafani SJ (Commentary by Dake MD and Katzen BT):
Chronic Cerebrospinal Venous Insufficiency: A new paradigm and therapy for multiple sclerosis.
Encovascular Today. July 2010:41-6.

(7) R.A. Marrie, R. Rudick, R. Horwitz, G. Cutter, T. Tyry, Campagnolo, and T. Vollmer
Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis
Neurology. 2010 Mar 30;74(13):1041-7.

(8) Hojnacki D, Zamboni P, Lopez-Soriano A, Galleotti R, Menegatti E, Weinstock-Guttman B, Schirda C, Magnano C, Malagoni AM, Kennedy C, Bartolomei I, Salvi F, and Zivadinov R:
The Jacobs Neurological Institute, State University of New York, Buffalo, NY, USA
Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls.
Int Angiol. 2010 Apr;29(2):127-39.

(9) http://www.buffalo.edu/news/fast-execut ... =105620009
(accessed 22nd June 2010).

(10) Zivadinov R, Marr K, Ramanathan M, Zamboni P, Benedict RRHB, Cutter G, Kennedy C, Elfadil M, Hojnacki D, Munschauer F, Reuther J, Brooks C, Hunt K, Andrews M,
Weinstock-Guttman B:
Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD Study).
Description of the Design and Interim Results of an Epidemiological Study of the Prevalence of Chronic Cerebrospinal Venous Insufficiency in MS and Related Diseases.
AAN Annual Meeting 2010. Toronto, 15 Apr 2010

(10) Khan O, Filippi M, Freedman MS, Barkhof F, Dore-Duffy P, Lassmann H, Trapp B,
Bar-Or A, Zak I, Siegel MJ, and Lisak R:
Multiple Sclerosis Center, Department of Neurology, Wayne State University School of Medicine, Detroit, USA.
Chronic cerebrospinal venous insufficiency and multiple sclerosis.
Ann Neurol. 2010 Mar;67(3):286-90.

(11) http://www.mssociety.org.uk/downloads/M ... 41ed0d.pdf
(accessed 20th October 2010).

(12) Qiu J.
Venous abnormalities and multiple sclerosis: another breakthrough claim?
Lancet Neurol 2010 May;9(5):464-5.

(13) Doepp F, Paul F, Valdueza JM, Schmierer K, Schreiber SJ.
Department of Neurology, University Hospital Charité, Humboldt University, Berlin, Germany.
No cerebrocervical venous congestion in patients with multiple sclerosis.
Ann Neurol. 2010 Aug;68(2):173-83.

(14) Sundström. P, Wåhlin A, Ambarki K, Birgander R, Eklund A, Malm J.
Department of Clinical Neuroscience, Umeå University, Sweden
Venous and cerebrospinal fluid flow in multiple sclerosis: A case-control study.
Ann Neurol. 2010 Aug;68(2):255-9.


(15) Baranzini SE, Mudge J, van Velkinburgh JC, Khankhanian P, Khrebtukova I, Miller NA, Zhang L, Farmer AD, Bell CJ, Kim RW, May GD, Woodward JE, Caillier SJ, McElroy JP, Gomez R, Pando MJ, Clendenen LE, Ganusova EE, Schilkey FD, Ramaraj T, Khan OA, Huntley JJ, Luo S, Kwok PY, Wu TD, Schroth GP, Oksenberg JR, Hauser SL, Kingsmore SF.
Genome, epigenome and RNA sequences of monozygotic twins discordant for multiple sclerosis.
Nature. 2010 Apr 29;464(7293):1351-6.


(16) Can a controversial new treatment for multiple sclerosis offer relief? (accessed 13th July 2010).

Key Words:
Chronic Cerebrospinal Venous Insufficiency
Venoplasty for Venous Insufficiency
Multiple Sclerosis
CCSVI
VVI
MS
balloon venoplasty
=============================

Hi Mark,

Sad. When some researchers write a negative article about ccsvi it is pulished in no time! ( http://www.thisisms.com/ftopict-16122-.html )

But, probably here, you've got more readers! Including neurologists I guess!

I was told by an engineer friend, when I was trying to decide whether to get a diploma from a community college, or a degree from a University, that I would run into much discrimination, merely because of the public misconception that someone without a University degree is less qualified, by definition. I should have listened to the Wizard of Oz, about brains. I found out the hard way, the engineer was right.

Society may be right sometimes, in assessing worth based on degrees behind a name. I think in more cases it is wrong. That goes for engineering, mathematics, science, and medicine. Probably many more. That's why I think MarkW's paper, though as good as any I have seen on the subject, will not easily get published.

For the same perhaps invalid, but convenient, reason, Dr. Dake and his colleagues at Stanford are more revered, and command better resources.

Right or, more likely, wrong, sometimes it is not what gets said, but who says it: not who they are so much as what they are not. Sometimes the only thing considered is how much money was spent, or even just appears to have been spent, or not, getting them through school, what may have been a very long time ago.

...

It seems important to consider that attempts to blind and control experiments that involve disease treatment, are fraught with danger of unethical behaviour. Some people, as we have seen, care much more about scientific certainty than they do about good medicine, patient well-being, or even reasonable treatment of experimental subjects. Sometimes, too, truth and ethics both take a back seat to economics, professional protocol, or even ego.

It's a damn good thing us Inter-netters have open minds. I think some of us have learned that the hard way, too.

Hi Mark,

FWIW, I made a note from your article and posted it on Facebook. [Link: Getting published in neurological journals] You'll be able to monitor reaction there from eager, supportive Canadians!

Cheers,

Sandra

Thanks for adding me to facebook, Sandra. Not sure your link works, so I have added it again. I got lots of satisfaction from the Telegraph headline on 7 -Mar -2010 with its swipe at neuros !!

Mark W

Getting published in neurological journals

Thanks for fixing it Mark! I seem to have a problem posting links here sometimes. Very hit or miss.

Apparently, some medical schools are considering adding the type of endovascular training needed to treat CCSVI to their neurology programs. Maybe one day neurologists will be on our side!

Cheers,

~Sandra

An early attempt to get the CCSVI message over to doctors. This was just after a Daily Telegraph piece:
'It's a turf war, and we are the losers' so a current topic then, found at:

Can a controversial new treatment for multiple sclerosis offer relief?
<shortened url>

The medical barriers against CCSVI were going up, already.
MarkW

Submitted To British Medical Journal at the end of July 2010. The BMJ is the journal of the British Medical Association, the representative body for UK doctors.

BMJ2010804799 - (less than 1500 words)

Multiple Sclerosis (MS) Patients Demand Novel Therapy:
How Should a General Practitioner Respond?

Chronic CerebroSpinal Venous Insufficiency (CCSVI) is being discussed avidly as a cause or a symptom of multiple sclerosis, and a wealth of misleading information is being posted on the web and published in learned journals. This article seeks to separate evidence from speculation and opinion. Knowledge of CCSVI is moving rapidly for web literate people with MS (pwMS). Clearly General Practitioners (GPs) need background information on CCSVI in order to respond to patients.

Among the 100,000 pwMS in the UK, a number of Internet knowledgeable patients will present their GP with research initiating from a theory from Professor Paolo Zamboni, University of Ferrara, Italy. (1,2). Pilot studies from vascular specialists, in countries as diverse as Jordan (3) and Poland (4), make it difficult for most GPs or impartial observers to adopt a completely anti-CCSVI position.

Some MS neurologists have launched academic missives against vascular specialists and CCSVI, citing the spectre of patient death (5). No death has been reported following balloon venoplasty for CCSVI. It is noted that one patient with a family history of stroke died of a brain haemorrhage while on the anticoagulant warfarin, following stenting for CCSVI (web communication). Jane Qui (6), collected opinions to attempt to justify halting any treatment of CCSVI symptoms, in pwMS. Professor Alastair Compston, stated, "People with MS are unlikely to benefit from treatments that dilate blood vessels." (7). Why have some leading MS neurologists and the UK MS Society adopted this rigid stance opposing CCSVI?
The possibility of reducing disability progression is a dream of pwMS. Patients have been informed that vascular comorbidity is associated with a substantially increased risk of disability progression in MS, Marrie et al (8), even though this study did not investigate CCSVI. Naturally, demands for testing for possible vascular problems, like restricted major veins, followed.

Vascular researchers have used a non-invasive screening for CCSVI in the neck, using Colour Doppler Senography, Simka et al (4). In addition, the gold standard for diagnosing CCSVI using selective venography, Hojnacki et al (9), is performed. Vascular specialists, who undertake selective venography daily, indicate that the tests and balloon venoplasty are low risk.

Patients, who understand the risks of ballooning of veins, will not wait for an explanation of the links between MS and CCSVI, before seeking to correct their symptoms. These patients demand the freedom to choose vein de-stenosis using balloon venoplasty. Many pwMS who are being denied local testing and treatment will travel significant distances and self-fund private therapy; they will not wait 5 to 10 years for detailed research programmes, as demanded by some MS neurologists (5).

Large-scale research on the correlation between CCSVI and MS is being conducted at the Buffalo Neuroimaging Analysis Center (BNAC) Buffalo, New York, USA, with 1700 subjects and controls (10). Preliminary results from BNAC were presented at the Annual Meeting of the American Academy of Neurology, in Toronto, Canada by Zivadinov et al (11). Research clearly shows that a correlation exists between CCSVI and MS in more than 50% of pwMS. This is far from proving a cause or effect relationship between CCSVI and MS. However, patients are not concerned if the correlation coefficient between CCSVI and MS is 0.55 (10), 0.84 (3), 0.9 (1) or 0.9 (4), and are indifferent if CCSVI is a cause or a product of MS. They simply wish to know if any of their major veins are restricted.

GPs will be asked: Is there a reason for not allowing private testing in the UK? Are British interventional radiologists and vascular surgeons unable or not allowed to perform these tests? Do vascular specialists recommend leaving major veins restricted or do they insist on a complete understanding behind the correlation between CCSVI and MS, before offering a safe symptomatic treatment to private patients?

For some pwMS treating CCSVI symptoms is simply ‘worth a try’. They listen to Professor Zamboni, who recommends that balloon venoplasty be used alongside disease modifying drug therapy. Hardly a radical suggestion for patients suffering a life long and disabling disease. In the 21st century, pwMS expect to be allowed to choose private diagnostic tests and therapy for themselves, seeking advice, testing and procedures from the most knowledgeable medical specialist for this vascular issue. It is unreasonable of MS neurologists to stand in the way of patients, when pwMS request private tests and can finance them.

Worldwide a group of vocal and politically aware patients, approximately 1000 pwMS, have received testing and therapy for CCSVI (web communication). They were perfectly capable of questioning vascular specialists on the chances of death or injury from a procedure to de-stenose major veins using balloons. In this day and age, risk assessment is, quite correctly, no longer the sole preserve of medical specialists.

GPs should expect MS ‘expert patients’ with a sheaf of Internet papers to visit their surgeries in the coming months. After explaining that CCSVI tests are not available from the NHS, will GPs propagate unhelpful information from MS specialists, or refer their patients to private testing and venoplasty therapy, which is available abroad and could reach UK private practice later in 2010? (12).

Without doubt, balancing the risk of an early symptomatic therapy against MS progression must be left to informed MS patients. People with MS, like me, should be permitted to balance risks of therapy for themselves. On discovering that I had restrictions in four major veins, I decided to have them de-stenosed. This was performed using balloon venoplasty by a consultant vascular surgeon in Athens, Greece in late June 2010. I appreciate that it will be too early to say anything about the impact of this therapy until the end of this year.

Mark A Walker, BPharm, MIPharmM, MRPharmS.
Oxford, England.

References:

(1) Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Tacconi G, Dall'Ara S, Bartolomei I, and Salvi F:
Vascular Diseases Center, University of Ferrara, Ferrara, Italy.
Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.
J Neurol Neurosurg Psychiatry. 2009 Apr;80(4):392-9. Epub 2008 Dec 5. PMID 19060024

(2) Zamboni P, Galeotti R, Menegatti E, Malagoni AM, Gianesini S, Bartolomei I, Mascoli F, and Salvi F:
Vascular Diseases Center, University of Ferrara, Ferrara, Italy.
A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency.
J Vasc Surg. 2009 Dec;50(6):1348-58.e1-3. PMID 19958985

(3) Al-Omari MH, and Rousan LA:
Radiology Department, King Abdullah University Hospital, Jordan University of Science and Technology, Jordan.
Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):115-20. PMID 20351667.

(4) Simka M, Kostecki J, Zaniewski M, Majewski E, and Hartel M:
Department of Angiology, Private Healthcare Institution SANA, Pszczyna, Poland
Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):109-14. PMID 20351666.

(5) Khan O, Filippi M, Freedman MS, Barkhof F, Dore-Duffy P, Lassmann H, Trapp B,
Bar-Or A, Zak I, Siegel MJ, and Lisak R:
Multiple Sclerosis Center, Department of Neurology, Wayne State University School of Medicine, Detroit, USA.
Chronic cerebrospinal venous insufficiency and multiple sclerosis.
Ann Neurol. 2010 Mar;67(3):286-90. PMID 20373339

(6) Qiu J.
Venous abnormalities and multiple sclerosis: another breakthrough claim?
Lancet Neurol. 2010 May;9(5):464-5.

(7) http://www.mssociety.org.uk/news_events ... dvice.html

(8) R.A. Marrie, R. Rudick, R. Horwitz, G. Cutter, T. Tyry, Campagnolo, and T. Vollmer
Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis
Neurology. 2010 Mar 30;74(13):1041-7. PMID: 20426824

(9) Hojnacki D, Zamboni P, Lopez-Soriano A, Galleotti R, Menegatti E, Weinstock-Guttman B, Schirda C, Magnano C, Malagoni AM, Kennedy C, Bartolomei I, Salvi F, and Zivadinov R:
The Jacobs Neurological Institute, State University of New York, Buffalo, NY, USA
Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls.
Int Angiol. 2010 Apr;29(2):127-39. PMID 20351669

(10) http://www.buffalo.edu/news/fast-execut ... =105620009

(11) Zivadinov R, Marr K, Ramanathan M, Zamboni P, Benedict RRHB, Cutter G, Kennedy C, Elfadil M, Hojnacki D, Munschauer F, Reuther J, Brooks C, Hunt K, Andrews M, Weinstock-Guttman B:
Combined Transcranial and Extracranial Venous Doppler Evaluation (CTEVD Study). Description of the Design and Interim Results of an Epidemiological Study of the Prevalence of Chronic Cerebrospinal Venous Insufficiency in MS and Related Diseases.
AAN Annual Meeting 2010. Toronto, 15 Apr 2010

(12) http://www.essentialhealthclinic.com/we ... ccsvi.html