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ABOUT THE NETWORK
Our Vision
Networking
Becoming Involved
Donations
A to Z Master Index
About HoriZonsSCAN
Ask HoriZonsSCAN 
Bookmarks - all
 
 
POPULAR BOOKMARKS
About MS
About CCSVI
Advocacy
Angioplasty
 
Benchmarking 
Blood Brain Barrier
Blood Flow Issues
Brain Microbleeds
Brain Plasticity
Brain's Vasculature
 
Carers
Cardiovascular Issues
Change Management
Chronic Infections
Clinical Trials
Cognitive Issues
 
Demographics
Diet
 
Endothelial Issues
Evaluation 
Exercise   
 
Fatigue
Financial Planning 
Future Directions
 
Genetic Factors
 
Healthy Eating 
Healthy Living
Homecare
Hope
 
Inflammation
Innovation   
Iron Involvement
 
Leadership 
Lifestyle Issues
Lympathetic System
 
Medications
Microbleeds - Brain
Misdiagnosis
Misinformation
 
NDIS 
Nutrition  
Needs and Issues
Neuronal Death
Neurovascular Issues
News Headlines
 
Oxygen Deprivation
 
Pain Management
Parliament's Role
Patient-Centred Care
 
Quality  of Life
 
Rehabilitation
Respite
Road Map
 
Satisfaction Levels
Shortfalls in Support
Sleep Importance
Social Media Impact
Stem Cells
Sunshine
Support Networks
 
Temperature Intolerance
Testimonials
Transport
Trials - clinical
 
Vascular Issues
Vitamin D
 
 
 
HoriZonsSCAN "E x p a n d i n g  the  A to Z  of  MS  Awareness  Horizons"

 

"What concerns me is that here in Australia we have people with Multiple Sclerosis who have vein abnormalities that cannot be publicly treated"

 

Kerri Cassidy's Journey - 2010 to 2017

 
A B C D E F G H I J K L M N O P Q R S T U V W X-Y Z
 
       
   Quick Reference Guide    News Headlines What is Multiple Sclerosis?
   
Kerri Cassidy wins important  Australian Advocacy Award
Judges said ''We are thrilled to announce that CCSVI Australia CEO, Kerri Cassidy, is the winner of Australia's 2016 Award for Excellence in Justice and Rights Protection - for her long-term commitment to promoting justice and rights protection for people with disability. This is a reflection of her work in raising awareness and calling for equitable access to treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI) for people with Multiple Sclerosis. Kerri has demonstrated her determination and commitment to raising awareness about the need for justice and rights protection of people with Multiple Sclerosis (MS) through the equitable access to Chronic Cerebro Spinal Venous Insufficiency (CCSVI) treatment". Kerri's Journey (Video Library)
Obstacles and Opportunities
For those who may appreciate a refresher on some of the background history, leading to Kerri's landmark achievement see the document "United Nations Convention on the Rights of those with Disabilities''. This is an important document for policy makers and government agencies to understand the obstacles faced, and opportunities built upon, by people with Multiple Sclerosis in Australia and the strategic direction to remedy this. To find out more about some of the ways that your voice may be better heard click here
Protecting the Vulnerable
Publicity associated with Kerri's achievement continues to attract significant attention - including requests for additional background information. To address varying requirements across different jurisdictions the Australian MS Network of Care provided the document "CCSVI Journey in Australia - Protecting the Vulnerable Must Always be our First Priority" . This document also serves to address outdated and potentially misleading advice on this topic. 
Clarity of Purpose
On 19 December Kerri responded to a 7 December 2016 CCSVI position statement by MS Research Australia that included the question "Did We Miss Anything?" Kerri's evidence based reply "Yes, yes you did'' sought clarification about the statement's reference to the presence of a ‘global consensus’ that abnormalities in venous drainage of the spinal cord and brain are unlikely to contribute to the development of MS and further investment in this area is not currently warranted". Kerri asked  Who has provided this advice? Which experts have collaborated on this position? Have they considered all available research and conducted a meta analysis?
 
Kerri went on to ask "Have they, with openness, considered the ongoing work of the International Society of Neurovascular Disease who are finding not only CCSVI in MS, but significantly higher levels of cardiovascular disease, cerebral microbleeds and slowed blood and cerebral spinal fluid flow in people with MS? What about the discovery of lymphatic vessels in the brain and their drainage to the venous system?
 
Where it all began. Revisiting a much earlier conversation on this topic
Transcript of a much earlier presentation by Kerri Cassidy at the MS & CCSVI Patient Information on 1 April 2011 as part of the annual scientific meeting of the Australasian College of Phlebology (Melbourne, Australia  29 March to 3 April 2011).  Note: the term 'venoplasty' is the same as 'vein angioplasty')
An Avenue of Hope
I would like to extend our appreciation to the organisers of the Australasian College of Phlebology for providing an opportunity for pwMS to participate in this discussion. It demonstrates a genuine interest and respect for, the people who are most impacted by the decisions and future directions of CCSVI research in Australia. Also to Professor Zamboni. A man who many of us believe has provided us with an avenue of hope and, a man who has unwaveringly stood his ground despite much opposition to see CCSVI rigorously debated and tested worldwide. To Paul Thibault, the various Sonographers and Interventional Radiologists who have had the courage to acknowledge an apparent abnormality in our vascular systems, and have sought to discover why. Thank you
A Short History
The MS online community is ever increasing, spanning the globe through social networking sites such as YouTube, ThisIsMS and more recently Facebook.  It is for the most part an informal, safe place to share experience, opinions and information. A place to find a sense of understanding and support.
It is of little surprise that when reports of Professor Zamboni's CCSVI theory became public in November 2009, the MS community came alight with interest. Why? Because intuitively for many of us - it made sense. Within a matter of weeks a number of my YouTube friends were seeking testing around the world. Most found themselves in the roll of educator, informing their doctors about the new theory and requesting their assistance to test for CCSVI.
This was the start of a global patient intelligence network, where people felt empowered to seek out information and take action for themselves.
It is accurate, I believe, to say that the early takers of this treatment were not desperate and emotional people but informed and intelligent individuals. With a clear understanding of the experimental nature of this theory – that is, that a high number of pwMS appeared to have vein abnormalities and that a venoplasty procedure was an appropriate means to correct them.  Whilst specific improvements or benefits from this treatment were not yet known it seemed reasonable to expect that correcting impaired blood drainage from the brain would lead to positive results regardless of a MS diagnosis.
 
For many of us it was a case of, “we have tried drugs and other traditional methods to control our MS and very little has helped. Surely it is reasonable to 1. Be tested for CCSVI and 2. If diagnosed seek and receive advice from a venous expert.”  This basic logic was my starting point.

What Factors Influenced my Decision to seek Treatment for CCSVI?

Well there were a number. My Neurologist had told me a month earlier that my MS was too active and that my prognosis was not good. Tysabri did not appear to be working. In fact in January last year I was a 34 year old woman wearing a catheter bag, unable to leave the house without a cane, and unable to walk further than 2-300 metres without needing to sit and recover.  Pain and fatigue were causing me significant distress on a daily basis. At this time my Neurologist had also just filled in an application for a disabled parking permit for me.  The final clincher was that I had to fold my Accounting business after 10 years as I could no longer manage the complex tasks required
 
February 2010 I was informed by a friend that testing was being conducted in Melbourne and I made an appointment for an Extra Cranial Doppler Ultrasound. My own GP, when writing the referral said, “Kerri, I don’t know if this is anything to do with MS but it is worth finding out.  It is time for you to take courage.” Oh how true that was!
 

My expectation was that this could lead to one of two paths. Either, something would be found, and I would then pursue treatment. Or that nothing would be found, in which case I could put the whole issue to bed knowing that I had at least given it a go.  

 
I was surprised, to say the least, when the scans revealed that both of my jugular valves were inverted, the veins stenosed and that I had a reversal of blood flow in the main drainage from my brain to my heart. Many of you understand what it is like to be in this position.  Once you know that you have an abnormality that is affecting the blood drainage from your brain, you want it repaired, and as quickly as possible.  This is not an unreasonable or illogical desire. Yet, some of you have been waiting many months.
 
I met with a highly experienced Interventional Radiologist who was open to the concept of CCSVI.  He was very clear and said, “I don't know much about MS or whether Venoplasty will change your symptoms.  All we can really do is try a few procedures and see what happens.”  It is important to note that it was made very clear to me at this time that restenosis is not uncommon in veins and that it may take 2-3 procedures before a narrowing will remain open
Why wouldn’t you?
These are the factors that impact a decision to try a new treatment. If nothing else is working, you are getting worse and the procedure is safe... Why wouldn’t you?
Fast
Forward
The Oxford Textbook series is the foremost international textbook of medicine. Unrivalled in its coverage of the scientific aspects and clinical practice of medicine and its subspecialties, it is a diagnostic fixture in the offices and wards of physicians around the world. The 2016 edition of the Oxford Textbook of Vascular Surgery features a full chapter on Chronic Cerebrospinal Venous Insufficiency (CCSVI) that puts to rest early scepticism and misinformation in relation to CCSVI.find out more  
Is CCSVI Treatment Safe?
Venograms and venoplasty procedures in general, are well known, routine and basically safe. The recent Society of Interventional Radiology released this statement 28 March 2011 http://www.sirweb.org/news/newsPDF/3_MS_final.pdf I say this knowing that no treatment is ever totally without risk. However being on Tysabri at the time I was very familiar with treatment risk versus return issues. A routine procedure like this seemed reasonable given the relatively low risks involved - more about safety issues.
My Experience  of Treatment for CCSVI

On the morning of March 11th I found myself being prepped for a Venogram to confirm what the ultrasound had indicated, and if possible, treat the venous abnormalities. A small wire was inserted into a vein in my groin and thread through to the jugular.  Dye was released into the vein to show the stenosis and the direction of blood flow. Then a balloon was inflated to open up the narrowings.  Only a local anaesthetic was required and I was alert through the 45 minute procedure.  Watching the screens and seeing your blood flow in the wrong direction due to a blockage is concerning.  But to then seeing the blockage opened and the blood drain freely and efficiently – that is relieving - watch a video of Kerri's procedure

 
I had no expectations.  At the time I did not know anyone who had managed to get this far. That also meant that any improvements could not be pre-empted.  I gave myself time to recover from the procedure and did not attempt to analyse my symptoms for two days. Initially I had a number of improvements including: vision – sharpness and depth of colour and green in particular, fatigue, head fog and warm feet! Over the next few weeks spasticity in my legs improved and a myoclonic jerk which I had suffered with for over a year slowly eased and eventually disappeared.
 
Functionally I was now going out in public without my cane, I could walk 3 km compared to 300m. My improved stamina meant I could clean my whole house in one day and I could stay awake later than 9.00pm. My concentration levels improved which meant my thoughts were more ordered and talking on the phone was easier. My memory was far more reliable and my children said I was more fun now.  After a couple of months I found my symptoms hard to recognise, and so by June I had stopped taking Keppra, Endep and Baclofen which I had used for symptom management.
 

My MS symptoms remained largely non-existent for the following months.  However a follow up MRV of my veins in June showed I had restenosed.  I underwent a second procedure in July.  At the time my symptoms had shown little regression but I was once again feeling increased fatigue and cold feet. Both of these improved after the second angioplasty.

 
A routine Doppler in December, showed some abnormality and a third procedure was performed in January this year. My valves and veins were open and flowing well and there was only a smaller narrowing identified in my left jugular that was ballooned at this time.
At no time, in the past 13 months, or during the three procedures, did I feel I was doing anything dangerous. It is important to remember that I do not have stents. I will continue to be monitored to ensure my veins stay open and if I have a problem with my veins I will consult my Interventional Radiologist. If I develop any new MS symptoms I will contact my Neurologist.  However, and most excitingly, I have now been 14 months without a relapse and my last MRI showed no active lesions. 
 
Enduring Benefits Hear about Kerri's treatment outcomes after three years - four years - five years. Other interesting discussions by Kerri relate to the role of Hope and her appointment  as CEO of CCSVI Australia.
 
I freely acknowledge that I am no scientist or doctor.  However, I have expert knowledge in relation to how my life has changed over the last 13 months. To me it is somewhat irrelevant as to whether CCSVI is a cause, a trigger or a co-morbid condition of MS. The results in time will clarify its relationship. What concerns me is that here in Australia we have pwMS who have vein abnormalities that cannot be publicly treated.

People with  MS have a far greater incidence of  Vascular Problems.

A recent report published in January 2010 about Vascular comorbidity and MS http://www.neurology.org/content/74/13/1041.abstract came to this conclusion: that “Vascular comorbidity, whether present at symptom onset, diagnosis, or later in the disease course, is associated with a substantially increased risk of disability progression in multiple sclerosis. The impact of treating vascular comorbidities on disease progression deserves investigation.”
 
This indicates to me that even if vascular irregularities are not causing MS, or caused by MS there is a strong correlation with disease progression.  This fact alone provides ample evidence and impetuous, that vascular health of all pwMS should not only be checked, but monitored in an ongoing and regular fashion as part of standard treatment and management protocols.  This is not really new news, my Neurologist mentioned to me a few months ago that pwMS do tend to have a greater incidence of vascular problems.  Given this link it is our right to have our veins tested and if necessary treated, as it would be for any other member of the Australian population. I was fortunate to have gotten in early. Right now in our public hospitals pwMS are being denied a basic right to vascular health care. This is a dangerous place to be in and it is discriminatory.  It flies in the face of the often touted Australian ideal of “A fair go for all.
Why are there Barriers to Treatment for pwMS?
Is it because Neurologists, who currently hold the power and monopoly in treatment of MS, have declared there is no evidence and that there is no relationship between venous blockages and MS?  A clinical trial submission was made nine months ago in this state by an eminent doctor in the field to clarify this concept. Yet, a so called ‘ethics committee’ appear to sit on their hands and painfully prolong the process.  We want to see clinically controlled trials.  We want to get the necessary sound evidence on the safety and effectiveness of CCSVI treatment.  As a group (CCSVI Australia) we have raised $88,000 to show that the patient community value this.  There are 140 people on a waiting list, 140 people doing exactly what the Neurologists and the MS Society recommend, seeking treatment within a clinical trial.  However, there is as yet, no clinical trial. And while we wait, disabling symptoms progress in thousands of Australian people. Subsequent developments.
 
Neurologists have been known to say venoplasty is dangerous.  If you read Sydney Morning Herald http://www.smh.com.au/world/science/the-facebook-treatment-for-ms-20110330-1cgfi.html they are quoted as saying the idea is ‘silly’ or ‘completely ridiculous.’  They say that there is nothing wrong with our veins or that they simply don't believe in CCSVI.  Since when are experts in one field, in this case Vascular Specialists, dictated to by an entirely different discipline? It defies rational belief that I could ask for breast implants tomorrow and no doctor would stand in my way. Yet we are unable to access a routine venoplasty even when a vascular expert considers it beneficial?  Is this over caution, arrogance or a conflict of interest?

 

Important
Guidance
 In November 2011 Australia’s peak Health Policy Advisory Committee on Technology (HealthPACT) confirmed that Percutaneous Venoplasty is an established, routine procedure, with a proven safety and efficacy" and highlighted research that this procedure "significantly reduced chronic fatigue perception at 12 months follow-up, and improved the rate of relapse-free patients, quality of life, and neurological function at 18 months follow-up, in MS patients diagnosed with CCSVI".
 
Both NHMRC and HealthPACT stressed the importance of properly designed clinical trials. The development of a national monitoring system, to capture information to help identify disease patterns and track CCSVI treatments and long-term outcomes for people living with MS was also referenced. More about a wide range of important associated developments
 
Meanwhile we are prescribed potentially dangerous drugs, many of which are poorly understood and ineffective with a variety of nasty side effects. Whilst we the patients, those most affected by these decisions and behaviours, those who often have the least resources physically and emotionally, are the ones trying to get the hard evidence for CCSVI, even in the face of incredible and ongoing opposition..
Addressing the issue of people  ‘dying’ from Venoplasty Procedures.
I believe this is a rather insidious tactic to turn people from investigating CCSVI treatment.  Details have been made readily available of complications that may occur with this treatment.  There have been two deaths associated with it.  You can google these and find a great deal of information on the details.
 
Firstly, one patient died from a brain haemorrhage (in August 2009). However, it has been mentioned by Dr Dake that this was due to an adverse reaction to the prescribed blood thinners.  The family members say that the procedure itself had nothing to do with her death but was due to a genetic condition. Secondly, a Canadian man sought treatment in Costa Rica.  In June 2010 he had a mesh stent inserted in hope that it would keep the vein stenosis open.  After returning to Canada his MS became worse and a blood clot formed around the stent. On presenting at an Ontario hospital he was told they cannot treat him because the procedure was done outside of Canada.  The man returned to Costa Rica and died after doctors used powerful medication in an effort to dissolve the clot.  It is suggested that it triggered internal bleeding.  It has also been suggested that the clinic do not usually use stents but was under pressure to do so as the patient did not want to have to return due to restenosis.
 
The second, I believe, is a consequence of suppressing the treatment for people in their own countries.  Not only that but had this man been treated when he first presented at the Ontario hospital with complications he may not have died
And What about Medical Tourism ?
This is a concern.  I have come across people in Australia and New Zealand planning to (or already have) travelled to Europe, United States and India to have this procedure as they feel it is their last resort.  They are willing to pay out very high fees and take additional risks in hope that it will relieve their condition.  When provision of a good or service is restricted almost immediately a black market rises up.  This is basic economics.  Without a doubt the safest and most cost effective place for people to be treated is in their own areas, where immediate follow up care is available as well as ongoing monitoring.  Many hospitals have Interventional Radiologists who can perform this procedure.  I do not judge people who participate in Medical Tourism, they feel they have no other option and I am thankful I never had to make this decision, however it must be made known that this does increase the risk of any treatment.  Often the high costs lead people to take risks they would not otherwise take such as insist on more aggressive procedures involving very large balloons and stents.
 
You speak to anyone in the online MS community about the amount of spam and advertising that comes across their screens from Medical Tourism agencies.  Providing accurate information is essential to protect our MS community
What about the Studies from Germany and a Sweden that cast doubt over the CCSVI hypothesis?
I recommend you watch this video. www.youtube.com/watch?v=GgqmHimQFY0&feature=channel_video_title Dr Kirsty Duncan is an MP in Canada and discusses the complex story behind how research for CCSVI has become political.  She refers to these two papers at 9:17.  It is important to know that our MS organisations in Australia follow Canada very closely. Basically these studies (abstract for the Doepp study,http://onlinelibrary.wiley.com/doi/10.1002/ana.22085/abstract ) were centred around Doppler ultrasound testing for the conditions that satisfy a CCSVI diagnosis. The problem is that it is heavily dependent on the Doppler ultrasound operator.  It is not like a venogram which is currently the gold standard for CCSVI testing. 
 
As a matter of fact it is worth considering Professor Zamboni’s response to this study.  He said, on reflection of the Doepp report, that it actually proved CCSVI.  “The researchers noted a much larger blood flow volume difference in normal subjects compared to MS patients when the subjects go from a lying down to an upright position.    What Dr. Zamboni is saying is that normal people have a larger blood flow volume change thru their jugulars when going from lying down to sitting up - the Doepp study proved this!  Dr. Zamboni suggests this might be because of webs, stenosis of faulty valves, like the ones he sees all the time in CCSVI.” (quote: Joan Beal, CCSVI in Multiple Sclerosis)
 
The American Society of Neuroradiology published research from BNAC that included the following observation: “We previously reported that the inter-rater variability rate between trained and untrained Doppler sonography operators substantially increased after training was performed. The interobserver agreement between trained operators was much more reliable (  0.80) compared with the agreement between untrained operators ( 0.47). Therefore, the Doppler sonography protocol requires appropriate training before it can be applied.” (Value of MR Venography for Detection of Internal Jugular Vein Anomalies in Multiple Sclerosis: A Pilot Longitudinal Study. R. Zivadinov, R. Galeotti, D. Hojnacki, E. Menegatti, M.G. Dwyer, C. Schirda, A.M Malagoni, K. Marr, C. Kennedy, I. Bartolomei, C. Magnano, F. Salvi, B. Weinstock-Guttman, and P. Zamboni, AJNR Am. J. Neuroradiol., first published on Apr 7, 2011)
As a consequence, we need to be critical observers of all evidence for and against the existence of CCSVI.  Besides, in many ways these two studies are a red herring. They do not answer the real question.  What affect does treatment on vein abnormalities have on MS symptoms?
Our right to be heard and make our own choice
For this is a progressive disease, time is precious, a fact many entrusted with our care seem to have forgotten.  If a patient is seeking a treatment, any treatment, potentially even travelling to access it, it is up to the clinician in charge of their care to seek appropriate knowledge, and demand appropriate research, that they may be able to facilitate (not control) a patient’s health care choices.
Testimonials Read about the first hand CCSVI experiences of some those who have also agreed to 'Tell their Stories' so that others may learn.
 
Peter Sullivan, Co-ordinator of the MS Network of Care in Northern Rivers has prepared an excellent discussion paper on CCSVI, Innovation and Quality of Life. He suggests that our perception of Quality of Life is not just about health issues but also about highlighting innovations that enable the 'voice of people affected by MS'  to be heard and respected. Knowledge sharing, mutual respect, inclusion and participation are key ingredients for developing collaborative relationships with and between pwMS and health care professionals.
Advocacy not Judgement and Roadblocks
PwMS need advocates not judgement and roadblocks. We need to be empowered to know our own bodies and to be confident in managing our own health care with a variety of consulting specialists. We need to have a voice, initiate and influence what research is done, what risks are acceptable and what services are offered to us. PwMS are free people, we are not owned, we do not become property by virtue of developing a specific disease.  Nor should we be ostracised for asking fair and reasonable questions.
Monitoring Treatment Outcomes
My hope is a complete cure for us all but while we wait the least we deserve is freedom of choice of treatment. Many of my friends and I have found CCSVI to be a reality and venoplasty the best treatment for our symptoms that we have experienced to date. We would like to see unbiased, investigation of CCSVI treatment outcomes as a matter of urgency because, frankly, we are worth it - more about treatment outcomes.

RM3400MS
 

Footnotes
Since May 2011 the Australian MS community has actively sought the support of Multiple Sclerosis Australia (MSA), Multiple Sclerosis Ltd (MS Ltd), Multiple Sclerosis Research Australia (MSRA), Medical Professionals, Australian parliamentary representatives and the broader MS community in obtaining medical recognition and treatment for CCSVI conditions. In conjunction with World MS Day 2011, Janelle Saffin, the Federal Member for Page in the Northern Rivers region of NSW, launched this campaign in an address to the Australian Parliament - read about Janelle's address
Protecting the Vulnerable is the First Priority
The campaign has experienced a wide range off road blocks and opportunities. For those who may appreciate a refresher on some of this background and history, including Kerri Cassidy's landmark achievement in winning the 2016 Australian Government National Award for "Excellence in Justice and Rights Protection"  see the document "United Nations Convention on the Rights of those with Disabilities''. This is an important document for policy makers and government agencies to understand the obstacles faced by people with Multiple Sclerosis in Australia and the strategic direction to remedy this. Another important reference is the document CCSVI Journey in Australia Protecting the Vulnerable must Always be our First Priority

 

 

 

Several hundred Australians have been fortunate in accessing CCSVI screening and treatment (example) - many of these have also completed national petitions on this topic aimed at helping all Australians with MS to access such screening.  These petitions are very important because they enable the voices of people affected by MS to be better heard and their frustrations understood. The petitions collectively carry over 3,000 signatures from all Australian States and Territories, encompassing nearly all 150 Federal electorates. The non Australian content is around 15%. Considering that the Australian MS population is around 24,000 this is a significant indicator of the wishes of the electorate on this matter. These numbers increase as awareness of CCSVI issues becomes more generally known.

 

How you might have your say and also keep in touch

 

If you have not yet completed a petition and are in any way involved with living with MS, or caring for, or supporting those who are, or would just like to support families living with MS, your signature and possible short comment, is a small but important way of helping the voice of people affected by MS to be better heard. You will also receive periodic email updates about ongoing developments - example. Another very effective way of contributing is via the CCSVI Australia Face Book site

  

 
   
     
 

 
 
 
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