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A Voice for People Affected by MS

Answering the Key Question

Venoplasty Can Relieve many MS Symptoms

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Building an Integrated Pictureb:
There is now significant consensus supported evidence that Percutaneous Venoplasty/Angioplasty (PTA) makes a difference in relieving the symptoms of multiple sclerosis by improving cerebrospinal venous drainage. There is also strong evidence that more than 80% of those with MS likely have underlying vascular irregularities that contribute to disturbed venous drainage. This condition is known as Cerebrospinal Venous Insufficiency (CCSVI) which can be mild, moderate or severe and is not exclusive to MS i.e  Parkinson's and Meniere's diseases.
Benchmarks  In November 2011, Australia’s peak Health Policy Advisory Committee on Technology (HealthPACT) in describing Venoplasty as proven and safe said "the outcomes from randomised, controlled, clinical trials with long-term follow-up of patients will need to be evaluated before this procedure can be widely adopted."
In saying this HealthPACT identified the purpose of such trials as being to answer the key question "Does Percutaneous Venoplasty (PTA) make a difference in relieving the symptoms of multiple sclerosis by improving cerebrospinal venous drainage?''  More broadly, Australia's peak health advisory body, the National Health and Medical Research Council (NHMRC), when commenting on the conduct of clinical trials per se, said 'To determine if the intervention has worked, it needs to be compared to another intervention, non-interventional standard care or a placebo".
Access to Screening and Specialist Guidance is the Number 1 Issue

In June 2016 the incoming Australian Coalition Government, when referring to access to angioplasty to address CCSVI cardiovascular risk factors in MS, said “we believe Australian patients should have timely access to innovative new treatments that have been independently assessed as safe, effective and cost-effective. Medicare benefits are claimable to clinically relevant services. A clinically relevant service is one which is generally accepted by the relevant profession as necessary for the appropriate treatment of the patient.

Notwithstanding this clear commitment, and the wealth of associated supporting evidence, access to CCSVI screening and guidance/treatment in respect of the outcomes thereof, is not yet available through Australia's public health system or specifically claimable through Medicare.
While it is understood that access may be privately available in Melbourne and Sydney the Australian Parliament has an important role in facilitating access to screening/guidance/treatment for all MS patients.  Given the significant benefits to many patients combined with reduced government outlays and  economic benefits something is seriously wrong.

These injustices were highlighted by Kerri Cassidy (a tireless advocate on this topic) being selected as the winner of Australia's 2016 National Award for Excellence in Justice and Rights Protection on this very issue. There are also more than 3,000 signatures on Open Letters/Petitions to key parliamentary decision makers supporting the rights of Australian's to have ready, affordable and ongoing access to potential relief from this significantly disabling vascular disorder.
What has been established ?: Where to Start and What to Expect
Specialised non invasive screening to assist in identifying blood flow problems is often the first step. While subsequent minimally invasive angioplasty, a safe, long established day surgery procedure, frequently corrects this condition it isn't necessarily an immediate or universal solution. More than one procedure may be needed along with annual check ups and attention to lifestyle issues.  Also, angioplasty is not suitable for every problematic vein, and vein specialists need to assess individual veins to determine the appropriate course/s of action (if any).
 Kerri Cassidy's journey and associated video library provide a human face to long term studies that support these understandings. For further (primarily Australian) examples click here.
Establishing a Bloodflow Baseline for every CCSVI patient is critical  

Critical to confirming the efficacy of restoring blood flow in the neck veins of persons with MS is the need for specialists in this area to do the standard test to determine if their ballooning procedure (angioplasty) actually did restore blood flow or not. The accepted procedure for determining blood flow is by calculating a venous hemodynamic insufficiency severity score (VHISS). The lower the VHISS score, the better the flow. Thus, if the angioplasty treatment is effectively done, the VHISS score will significantly drop. If this is not done (before or during the procedure) there is no way of knowing if proper blood flow was re-established and remains adequate over time. Failure to gather such fundamental data seriously compromises the ongoing management of this condition (at an individual level) and negates the outcomes of related clinical trials.

 Patient Centred Perspectives
The activities of the Multiple Sclerosis Network of Care (Australia) are underpinned by a comprehensive range of patient centred, evidence based benchmarks. Among these is a model that reflects the outcomes of large, representative population studies identifying the Issues, Needs and Expectations of families living with MS - especially in Australia. This model enables improvements following CCSVI interventions to be compared with broader MS populations.
Large Population Studies reinforce vascular associations with MS Symptoms

In March 2017 this model enabled comparisons between the outcomes of large population studies by Multiple Sclerosis Research Australia (MSRA) in 2012, the (then) Multiple Society of NSW in 2001 and the Multiple Sclerosis International Federation (MSIF) in 2012, with published research relating to the long term outcomes (2011 to 2015) of successfully treating CCSVI conditions with Angioplasty/Venoplasty.

These population studies encompassed 15,184 people with MS who had not had this treatment. This group included 70% of people diagnosed with multiple sclerosis in NSW, 12% across Australia and 10,090 across the globe. The treatment group involved 2150 examinations across 366 CCSVI affected patients independently monitored over a 4 year time span.

This comparison showed that the symptoms relieved through the successful PTA treatment of CCSVI irregularities (across all MS sub types) corresponded significantly with the top 20 symptoms identified by these highly regarded population studies

This is important. It also paves the way for comparisons as between the benefits of PTA interventions and the range of non vascular/CCSVI treatment options/medications currently recommended for each of these symptoms. Comparisons of this type also assist in translating broader based CCSVI knowledge into the “here and now” world of those living with MS. They also complement more rigorous clinical trials on this topic.
CCSVI Evidence Base
  1.  Dr Bavera's Evaluation Methodology 6.    Profile of Australian MS Symptoms and Issues
  2.  Putting it all together - the Evolving Big Picture 7.    What are the PTA Outcomes According to MS sub types and Mean Ages? - Dr Bavera
  3.  Prioritising Symptoms and Issues - Population Studies 8.    Clinical Trial - Brave Dreams Italy -Completed - Publication Pending July 2017
  4.  What are the Historical MS Symptom Management Guidelines? 9.    Clinical Trial - Alfred Hospital Australia - Continuing
  5.  What about Medications? 10.  Clinical Trial - University of British Columbia Canada  - Premature Findings?
  Consensus Based Research  
  Benefits - Historical Snapshots  
The Sooner the Better

In November 2017 the Journal of Vascular Surgery reported on a study involving 797 consecutive patients with venous outflow anomalies who underwent standardized, operator-independent catheter venography and angioplasty (PTA) of the internal jugular veins.  The aim of the study was to investigate the anatomic factors and patient characteristics that might influence the efficacy of such interventions. PTA resulted in an increased outflow through the IJVs in most patients. However, younger individuals with transverse endoluminal defects and higher pre-PTA flows are more likely to respond well to PTA compared with those who exhibit hypoplasia, stenosis, or longitudinal endoluminal defects.  Researchers observed ''the earlier patients receive CCSVI angioplasty the better''. The study also teased out which types of blood flow problems will respond best

Background - A very useful Methodology
Doctor Pietro M. Bavera, Vascular Surgeon  (and colleagues), significantly contributed to answering the key question when (in 2010) they put in place a Centre at the University of Milano, Italy for the ongoing long term evaluations of MS patients with a confirmed CCSVI diagnosis who have undergone PTA .
While such patients freely choose their Physicians, either Vascular Surgeons or Interventional Radiologists, the evaluations are independently performed at the Centre - all with the same equipment. No stentings were observed.
 The evaluation process includes the identification of the benefits of PTA, both short and long term, by reference to the more frequent and disabling symptoms associated with MS and CCSVI - including workforce participation limitations. It also potentially highlights situations where diminishing PTA effectiveness can be associated with particular aspects of vein irregularities and/MS stages
In October 2015 Dr Bavera published details of this research as it relates to 366 people with MS treated with PTA for CCSVI conditions comprising 264 Relapse Remitting,  62 Secondary Progressive and 40 Primary Progressive. Following is an overview of the key findings. For more detailed information see Doctor Bavera's paper.
It also demonstrates that the conditions referenced by Dr Bavera (in respect of which PTA interventions provide enduring benefits for many) correspond with those experienced by broader MS populations and for which there are currently no other proven and effective long term medical interventions across all stages of MS.
The Big Picture
Figure 1 - Putting it all Together - The Evolving Big Picture re  PTA Effectiveness Outcomes
2150 examinations across 366 CCSVI affected patients Prevalence of each issue in broader MS Populations PTA Effectiveness
Ratings after 4 Years according to stage of MS
abstracts about each issue
Other Interventions about eaxh issue
Overall PTA Effectiveness Rankings after 4 years  Source: 15,384 people with MS over an 11 year time span
264 People 62 People 40 People
The HoriZonsSCAN database references more than 1,500 MS research abstracts National MS Society  Guidelines
1   Vision Issues 49%         
99.2% 79.0% 12.5%
2   Workforce Participation 75%           
98.9% 8.1% 37.5%
3   Headache 24%           
98.6% 48.02% 90.9%
4   Cognition/Concentration 58% - 76%
98.6% 80.6% 87.5%
5   Fatigue 85% - 93%
98.5% 6.5% 5.0%
6   Sleep Quality 40%           
93.2% 89.3% 73.7%
7   Vertigo/Dizzyness 75%            
90.9% 48.1% 56.3%
8   Balance 35% - 59%
88.5% 24.2% 10.0%
9   Lower Limb Mobility 71%           
86.7% 16.1% 5.0%
10  Upper Limb Mobility 44%          
83.3% 56.5% 15.0%
11  Temperature Intolerance 68% - 85%
75.0% 19.4% 12.5%
12  Continence Issues 25%          
75.0% 82.1% 85.0%
RR = Relapsing Remitting MS                                         SP=Secondary Progressive MS                                                PP = Primary Progressive MS
Footnote: In all cases where 4 year improvement levels are highlighted in red the ''start point year 1'' ratings were in the range 96.8% to 100%!!! find out more.

Snapshots of Dr Bavera's Long Term Findings according to Stages of MS
Table 1. Patient sub types and Mean Age ranges
  Mean Age Female Male Total
Relapsing Remitting 28.5 179    85 264
Secondary Progressive 47.3    37    25    62
Primary Progressive 43.0    22    18    40
Totals and Overview 33.8 238 128 366
Safety  ''Venous angioplasty appears to be safe, side effects were observed only in seven patients (0.19%) that grew a monolateral Jugular thrombosis but still were regularly controlled and above all didn’t suffer worsening of the disease''. More about safety issues
Overview - The Sooner the Better

The results overwhelmingly confirm the benefits of angioplasty, especially for those with relapsing-remitting MS. Dr Bavera said ''the sooner the better. It is quite evident that the positive results are observed in almost all  of relapsing-remitting populations and appear more persistent''.

While the results for those with progressive forms of MS are quite different some useful considerations and statistically significant data were collected. For example the majority of this group experienced extraordinary benefits immediately after venoplasty. The fact that some of these benefits were not necessarily long lasting requires exploration.

Next - Relapsing Remitting Outcomes
Prevalence CCSVI related vascular irregularities are being observed in more than 80% of MS populations - click here for details

Relapsing Remitting MS.  Table 2 (abridged). Improvements reported by patients (after one or more PTA) expressed as a percentage of the total number of participants (264). Mean age 28. 179 females and 85 males - expanded statistics

MS related Impairment Immediate Improvement Reported Improvements Maintained After 4 Years
1. Diplopia - Double Vision 99.6% 99.2%
2. Working Activity    95.1%  98.9%
3. Concentration 84.0% 98.6%
4. Headache  100.0%  98.6%
5. Fatigue   100.0%   98.5%
6. Quality of Sleep 81.4% 93.2%
7. Vertigo  90.9% 90.9%
8. Balance Coordination 80.8% 88.5%
9. Lower Limb Numbness/Mobility 73.6% 86.7%
10. Upper Limb Numbness/Mobility 83.3% 83.3%
11. Thermic Sensibility  - Temperature Intolerance 100.0% 75.0%

12. Bladder Control

100.0% 66.6%
Next - Secondary Progressive


Vascular Clinicians said:


In this series, symptomatology usually was the reason that lead these patients to submit themselves to venous angioplasty, more than a real attitude against traditional medical therapy. The RR Patient group was the relatively easiest one to follow-up since 201 (76%) underwent to only one angioplasty and 63 (24%) to a second one, while none had a third procedure.


Firstly, after having clearly identified the presence of CCSVI in a considerable majority of patients affected by MS, there seems to be a frequent parallelism between some disturbs and the vein abnormalities: they usually improve or even disappear when the outflow is corrected.


Secondly, both the clinical and blood flow improvements appear to be long lasting when they are not yet so severe and apparently the neurological damage isn’t so widely distributed. This could explain why better and perjuring results appear to occur in the RR group of patients.

Figure 1 cross references these ''enduring relief'' disability categories to related HoriZonsSCAN research abstracts.

 Secondary Progressive MS.  Table 3 (abridged). Improvements reported by patients (after one or more PTA) expressed as a percentage of the total number of participants (62). Mean age 47. 37 females and 25 males - expanded statistics
MS related Impairments Immediate Improvement Reported Improvements Maintained After 4 Years
1. Quality of Sleep 100.0% 89.3%

2. Bladder Control

98.2% 82.1%
3. Concentration 100.0% 80.6%
4. Diplopia - Double Vision 100.0% 79.0%
5. Upper Limb Numbness/Mobility    98.4% 56.5%
6. Vertigo    98.1% 48.1%
7. Headache  100.0%  48.02%
8. Balance Coordination    98.4% 24.2%
9. Thermic Sensibility  - Temperature Intolerance 100.0% 19.4%
10. Lower Limb Numbness/Mobility 100.0% 16.1%
11. Working Activity    100.0%   8.1%
12. Fatigue     96.8%   6.5%
Next - Primary Progressive  
Vascular Clinicians said:

The majority of progressive MS patients experienced, perhaps only for a short period, symptom improvements and for this reason submitted themselves to a second or even third procedure hoping to re-establish them.


The SP Patient group resulted the most articulated and complicated since only 3 (5%) stopped after one angioplasty while 51 (82%) underwent to a second one and 8 (13%) to a third procedure.


Most of the improvements in this group of patients unfortunately lasted for a short lapse of time, between two weeks and three months. Veins and valve leaflets most probably recovered a sort of memory effect and this gradually overtook the venous angioplasty. See also comments re primary progressive group

Figure 1 cross references these ''enduring relief'' disability categories to related HoriZonsSCAN research abstracts

 Primary Progressive MS. Table 4 (abridged). Improvements reported by patients (after one or more PTA) expressed as a percentage of the total number of participants (40)  Mean age 43 - expanded statistics

MS related Impairments Immediate Improvement Reported Improvements Maintained After 4 Years
1. Headache  100% 90.9%
2. Concentration 100% 87.5%

3. Bladder Control

100% 85.0%
4. Quality of Sleep 100% 73.7%
5. Vertigo    97% 56.3%
6. Working Activity    93% 37.5%
7. Upper Limb Numbness/Mobility 100% 15.0%
8. Diplopia - Double Vision 100% 12.5%
9. Thermic Sensibility  - Temperature Intolerance 100% 12.5%
10. Balance Coordination 100% 10.0%
11. Fatigue   95%    5.0%
12. Lower Limb Numbness/Mobility 100%     5.0%

Vascular Clinicians said:


Peculiarity of the majority of this group was an extraordinary benefit that came in reduced symptoms (99.27%) immediately after venoplasty. The majority of progressive MS patients experienced, perhaps only for a short period, symptom improvements and for this reason submitted themselves to a second or even third procedure hoping to re-establish them.


In the PP Patient group none (100%) stopped after the first angioplasty and 37 (92%) had a second one while only 3 (8%) had a third procedure.


Most of the improvements in this group of patients unfortunately lasted for a short lapse of time, between two weeks and three months. Veins and valve leaflets most probably recovered a sort of memory effect and this gradually overtook the venous angioplasty.


In the progressive groups, mostly primarily progressive, the presence of external vein compression appears to influence the PTA and seems principally to occur with males.


Figure 1 cross references these ''enduring relief'' disability categories to related HoriZonsSCAN research abstracts
Frequency Observations
Venous outflow problems re-occur most frequently in the SP and PP patients, usually found at the brachial cephalic junction and, most commonly, on the left side (72%) otherwise bilaterally (21%) while apparently less frequent is the monolateral right side alone (7%). Valve leaflet restenosis alone appear to be more frequent in RR patients (91%), while conjunct valve defects and vein stenosis mostly occur with SP(63%) and PP (87%) patients. More about more complex problems.
Moreover a general poor mobility and tremendous muscular stress required to keep sufficient balance during ambulation, usually with the help of devices, gradually developed and could be in some cases the cause of muscular hypertrophy of the neck and consequent extrinsic vein compression. More about external vein compression

Figure 2  Important Population Studies (A Default Control Group)
  Scope of Study Population Source
* A 2001 study identified the 20 most frequent disabilities experienced by 70% (2618) of all people then living with MS at that time in NSW. Titled ‘Living With Multiple Sclerosis in New South Wales at the Beginning of the 21st Century’. 87% of respondents identified extreme as their number 1 issue. 2,618 Multiple Sclerosis Society of NSW
* Some 11 years later a 2012 Analysis of 2676 Australians with MS (from all States and Territories) reinforced the 2001 outcomes with 55% of respondents describing their symptoms as moderate to severe. Of 22 symptoms surveyed the major symptoms included fatigue (93%), heat intolerance (85%), muscle weakness (78%), memory difficulties (76%) and walking difficulties (59%). 2,676 Deakin University in collaboration with MS Research Australia.
* Also in 2012 the results of a survey of 10,090 people with MS in 101 countries became available . This research specifically focused upon the incidence and impact of MS related fatigue which 86% of respondents identified  as one of their three main symptoms of MS. Of these, a significant majority (89%) identified fatigue as having a medium to high impact on activities of daily living. These outcomes replicate and expand upon the aforementioned Australian studies. 10,090 Multiple Sclerosis International Federation (MSIF).
    Find out more about MS Needs, Issues and Expectations.
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