The Frustrated Voice

The Frustrated Voice
The location of the problem

Tuesday, 20 November 2012

The Frustrated Voice




Introduction
CCSVI is a condition that is often found in people who have the misfortune of having an MS diagnosis. The veins that drain the brain are subject to narrowings which can be treated by balloon angioplasty. Additionally there may also be other aspects of cerebral circulation which need investigating. The balloon angioplasty treatment for narrowed veins has proved to help a significant number of people who have seen their symptoms improve and at times even disappear. Unfortunately if you have an MS diagnosis you can only get angioplasty treatment privately, however if you do not have an MS diagnosis you can expect to be treated in an NHS hospital. What follows is an exploration of the reasons why this might be.
The history of CCSVI in the UK
Since January 2010 a small group of people (MS-CCSVI-UK) have tried to get CCSVI treatment a higher profile in the UK and one of the goals was to make information available to all people suffering from MS symptoms. In that we have singularly failed and recently we have been pondering on this. The extent of our failure came to our attention by a couple of chance events.
The first occurred when one of our members was asked to guest host a chat room for MSRC recently (summer 2012). Very few people came to the room and those who did were not there out of interest, did not understand or were particularly interested in CCSVI and its treatment. It became clear to us as the evening progressed that there was reluctance in actually engaging with the concept of CCSVI and its treatment. 
The second event was a communication from the CCSVI active people in Australia. A summary of the progress they had made in the past three years revealed that people with MS had achieved a lot more than had been achieved elsewhere in the world. It appeared that their voice had been heard, in the medical and political worlds as well as on the social networks. And even Canada which refuses to treat people with MS (pwMS) for CCSVI and will not allow private clinics to carry out these procedures have move forwards towards providing a register, aftercare, clinical trials mainly through the efforts of a couple of MPs and senators.
We have been reflecting on why we have not so far managed to get the message across. Was it the way in which we went about lobbying politicians, doctors, the medical societies? Our initial approach was tempered and reasonable:
·   we sent information on CCSVI to anyone we thought ought to know about it, MS organisations, vascular surgeons, neurologist, Interventional Radiologist, MS groups, MS nurses, the media
·  we talked to our MPs, and wrote to all MPs
·  we sent letters to the Department of Health,
·  we collected 10,000 names for a petition to the Prime    Minister’s Office asking for CCSVI treatment for people with MS.
·  we built a website and a Facebook page
·  we appeared on Radio shows
·  we had articles published in local newspapers
·  we planned a rally outside the MS headquarters
·  we asked to meet an MS Society representative to hand over a letter. They organised a meeting at which we explored the status quo and questioned the information contained in their website
·   we politely reminded them of their obligations by drawing their attention to their constitution
·   we held group planning meetings on the phone and in person
·   we located a private clinic in Scotland who was willing to explore CCSVI
·   we found a vascular surgeon interested in the concept who was willing to work with them
·   we suggested and helped organise a CCSVI conference in Glasgow
·   we sent out weekly press releases for a month before the conference
·  we invited MPs, Doctors and the press to attend, one GP attended but no MPs or press
·   we made informational videos
·   we interviewed people from around the world on Blog Talk Radio
·  we raised a petition in Scotland that was presented and discussed in Holyrood, however the people who raised the petition we not allowed to report to the meeting.
·   we were witness to discussions the National Health and Clinical Excellence (NICE) organisation held in 2011.
Yet in the short term all this effort has come to nothing. The evidence of vascular involvement in Multiple Sclerosis is convincing and verifiable so why is it that CCSVI has not been taken as seriously here as in other parts of the world? In Kuwait for example the health service was charged with treating all people with MS, in Poland the surgeon who was the first to instigate the treatment of CCSVI in Europe outside of Italy was awarded a professorship. Jordan and Serbia are making CCSVI treatment available to MS patients who want it.
Possible reasons for the cold shoulder treatment
Initially, in this country at least, we feel there was an element of arrogance and xenophobia in the reaction to the announcement of Paulo Zamboni’s hypothesis. To a certain extent this is still evident in the blogs authored by Gavin Giovanonni and the Mouse Doctor, whose writing is littered with pictures of a machine used to smooth ice rinks which happens to be called a Zamboni (http://multiple-sclerosis-research.blogspot.co.uk/2012/03/research-ccsvi-monthly-march.html & http://multiple-sclerosis-research.blogspot.co.uk/2011/12/ccsvi-equivacal-results.html). This level of ridicule is unforgiveable. Colin Rose (a cardiologist and assistant professor in the United States) is another person culpable of gross arrogance and disrespect to a scientist who had the audacity to propose an idea that went against the favoured but unproven auto-immune theory. Arrogance is a trait of this man (as witnessed by some of his patients: http://www.ratemds.com/doctor-ratings/1491982/Dr-Colin-Rose-Montreal-QC.html ) so we cannot attach too much importance to his words, however they do influence people who have little knowledge of CCSVI. These research scientist and teachers have good reason of course to disregard the vascular idea, there is not the same level of revenue from surgery as there is from drugs, and pharmaceutical companies have the income which allows them to fund research into the aetiology of MS and find more disease events which might be managed using drugs. Of course this is not the first time this kind of ridicule and studied avoidance of new ideas has happened. The number of innovative scientists who have been ignored for decade, even centuries is very long: John Snow (cholera), James Lind (rickets), Gregor Mendal (genetics), Franz Schelling (vascular MS), Barry Marshall (heliobacter pylori), to name but a few.
The MS Society’s own adviser, Alastair Compston, himself doing research into drugs and stem cell therapy, famously pronounced in December 2009:
"The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS.
People with MS are unlikely to benefit from treatments that dilate blood vessels."
When we received the disappointing response to our petition from the Prime Minister’s Office we realized from the wording of that reply that the Government was actually taking its lead from the MS Society. So now we were faced not only with a society which asserted that it was speaking for all people with MS symptoms but which also influenced the statements issued by the Government’s Health Department.
In a nutshell we were faced with a confrontational situation from the beginning. Rightly or wrongly I felt and still feel that confrontation is not going to get us anywhere. We need to negotiate, inform and convince, but for that to happen we need the voice of reason to be heard. Not being heard is the continuing theme of our cause. We were not heard at the MS Society meeting in May 2010, the Department of Health, or the meetings arranged by NICE in 2011; we were present and could have enlightened so called experts who quite clearly were not au fait with the basics of CCSVI and its treatment. At the NICE meeting in August, we were witness to a discussion about the safety of the procedure which ended in the conclusion that angioplasty/venoplasty could not be less safe for people with MS than for others. Yet this conclusion was omitted from the Guidance document which NICE eventually published in March 2012; instead much was made of the need for well-constructed double blind clinical trials to ascertain safety and efficacy.
Double standards and vested interests
Another event which took place at the NICE meeting which highlights the double standard which seems to dominate the CCSVI cause was the discussion on another surgical procedure which was reviewed at the same meeting. TAVI is a procedure that uses a catheter to insert a valve in the aorta: NICE (March 2012) “TAVI can be offered routinely as a treatment option to patients with aortic stenosis who cannot have open heart surgery because of poor health or technical difficulties”. This is a highly risky procedure available to a small number of people, yet no double blind clinical trials were held to ascertain its safety or efficacy.
Additionally the one person who could have testified to the effectiveness of the CCSVI procedure, the surgeon who carried out over 100 procedures in Scotland, was prevented from attending the meeting by the Vascular Society, although his reports were made available to the committee.
The Vascular Society had originally been quite open-minded about the theory of CCSVI and the venoplasty treatment, however, sometime between May 2010 and August 2011 their attitude became one of scepticism and doubt. We speculate that some kind of debate might have taken place which prompted the cautious response evidenced in their comments to the NICE consultative process.
Interventional Radiologists, who because of their practice should be best placed to diagnose and treat stenoses were also arrogant and dismissive about CCSVI and its treatment. One practitioner told me in an email communication that he felt quite capable, with his extensive experience of Doppler Ultrasound, of diagnosing reflux in a patient’s Internal Jugular Vein, in his opinion this reflux was non-existent in the pwMS he had examined. Unfortunately it was not until he had persevered for several months that he was eventually able to find this reflux in one of his patient. It is to his credit that he retained an open enough mind throughout this trial and error process, but it highlights the surmise some specialist have that they know everything there is to know about venous flow but may also demonstrates the difficulties attached to this diagnosis.
In fear of hope?
And what of people suffering from MS symptoms? One might think that they would be curious about the theory and the treatment process but it seems that the subject has succumbed to a recognised pattern of uptake of new ideas, ‘the technology adoption sequence’, ‘new’ ideas are assimilated in a predictable sequence which goes like this: 
1. Innovators: the people who think of the idea, about 2.5% of the population
2. Early adopters: 13.5% of the population, maybe a way to describe people active in the CCSVI cause.
3. Early majority: 34%, we are still waiting for this group to manifest. These are the people who are interested but waiting for approval from health services     and government. These could be doctors as well as patients
4. Late majority: 34% won’t come on board until a good few people have been treated and the treatment proves effective for a significant number
5. Laggards: 16% who may never adopt the idea.
It is a bit of mystery to us why not more people are interested in CCSVI. Is it because of the mistaken advice of neurologists, is it because it is not available on the NHS, is it because there have been so many ‘miracle cures’ that have failed people in the past? Admittedly the cost of this procedure takes it outside many people’s reach, but that should not preclude people’s interest and curiosity about the subject.
Neurologists of course hold a central place in the care of people with MS and it is not surprising that patients cling to their every word. It is therefore important that these doctors are educated in the theory and practice of CCSVI. They, however, have been very resistant to the idea of Venodynamic MS. Their career and research depend on the auto-immune theory. There is no doubt that the immune system is involved in the pathogenesis of MS but the cause that triggers it has not yet been pinpointed. In spite of the evidence of the post mortem and MRI studies which show veins at the centre of plaques, there is still a lot of research to be done on the circulation in the brain.
Evidently there are risks attached to surgery, even minimally invasive surgery, however there are real and damaging risks attached to drugs, especially those that aim to modulate the immune system. Is it because of the hype, history and hyperboles that drugs are acceptable to patients? The risks are born by the patient not the doctor who prescribes these medications (POISONS), very few doctors are prosecuted for prescribing a drug recognised as treatment for a particular condition. However much is made in the press and on social media sites of surgeons who have harmed a patient, maybe this is what is instilling fear into pwMS. Proportionally more people have died as a result of taking Tysabri (0.06%) than have died as a result of CCSVI surgery (0.01%).
There is also a self-defeating process at work with some pwMS and that is the fear of more psychological pain. A majority of people with MS live with constant loss, with every relapse or every progression, with every loss of function they have to go through the grieving process, mourning the death of their previous physical status. Many are unwilling to put themselves through the possibility of dashed hope, to such an extent that they would rather deal with the familiar progression than ‘jump’ through the hoops of the unknown. And who could blame them, there have been so many ‘theories’ and ‘cures’ and ‘drugs’ in the past few years that have born little fruit and disappointed many; the many we only ever hear about as figures or percentages, which does little to reveal the pain and anguish people go through.
Social Media
The social media has been a great asset for people seeking information on the treatment of CCSVI. It has also enabled many people to do the research to satisfy their enquiring minds or answer their questions. And for those unable to do their own research either through physical or mental disability, the internet forums have helped them make contact with people who could explain things to them.
However there are downsides to social media: it is easy enough to misunderstand comments when you are not face to face with people you are conversing with, it is a prime milieu for bullying and it is much more likely that people will verbally abuse others when there is little chance that they will ever meet face to face. One of our members was likened to the devil on one Facebook MS site, and people regularly fall out on CCSVI sites mainly through misunderstandings and personal prejudice.
Another problem about social media, is that to reach an audience you have to describe your aims, either through a domain name or through tags so that search engines can find the site. That often polarises the membership group and the ability of open and friendly dialogue is quickly lost. Early on in the CCSVI story the pro sites were often visited by a particularly vociferous doctor who would vehemently contradict pwMS. It was very tempting to ban him from posting on the sites, however doing so would have limited the frankness of any discussion. If we are to reach a wider audience we must remain open to criticism and the possibility of strong disagreement. We must be able to plead our case with calm deliberation even when faced with strong and unreasonable disagreement.
It is easy to incite anger and frustration in the social media arena, for the same reason as it is easy to insult someone. Frustration is contagious and this can lead to unreasonable and counterproductive attitudes which make it more difficult for the cause to be taken seriously by Government, doctors and the wider MS community.
The result of this negative aspect to discussion on the internet is that people who want to talk seriously or sensitively about a subject do so in closed groups, and that of course precludes anyone who does not know about CCSVI from learning about it. There are many pwMS in our country who do not know about or are frightened of getting treatment for this condition. It is difficult to think of a way round this problem: how can we create a significant open forum if people are too frightened to expose themselves to criticisms.
On power and money
Briefly the bodies who hold the power in our area of concern are principally the Government, the pharmaceutical industry, the media, NICE and the NHS and unbelievably the Federal Drug Agency (FDA) of the USA.
One person with MS told me that “good economics equals bad medicine” and a truer word could not be said. In 2004-05 a parliamentary white paper (http://www.publications.parliament.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf ) was issued regarding the Influence of the Pharmaceutical Industry. The report concluded (p 99) that:
The commercial success of the industry is not in doubt, nor is its ability to produce excellent science and important drugs; however, its ability to put the health of the nation consistently before the needs and expectations of its shareholders may be questioned. The evidence to this inquiry indicated that, in recent years, large pharmaceutical companies have become ever more focused on a marketing-based approach. In our view, this is the source of many of the problems we have identified…
… Our over-riding concerns are about the volume, extent and intensity of the industry’s influence, not only on clinical medicine and research but also on patients, regulators, the media, civil servants and politicians.
We could quote more of the document, it is well worth a read but the above gives a summary of the committee’s findings which is also reflected in the work of Marc-Andre Gagnon who in 2011 said this at a forum at York University in Toronto, Canada on “Capital as Power”:
Since the mid-1980s, a curious paradox is found in the pharmaceutical sector: while the therapeutic innovation is constantly decreasing, the rate of profit for dominant pharmaceutical firms is constantly growing… …A more detailed analysis of Big Pharma’s earning-capacity shows that profits are not related to the production of innovative product, but to the growing corporate control over medical research and medical practice. Producing the right medical discourse through massive promotional campaigns has become central in developing “blockbuster drugs”, even when these drugs are in fact less efficacious than previous ones.
The influence of the pharmaceutical industry is in large part thanks to its financial contribution to the UK exchequer. It appears that they are now the number one contributor to the national purse. No wonder the government might be anxious to keep the boat on an even keel and preserve the market of some very expensive and mostly ineffective drugs used to treat MS patients.
In this extract from the ABPI website, the extent of the industry’s financial contribution is listed: http://www.abpi.org.uk/industry-info/knowledge-hub/uk-economy/Pages/voi.aspx
·   In 2008, the pharmaceutical sector’s contribution to the balance of trade was the greatest of 9 major industrial sectors, up from 5th in 1975 and 3rd in 1990.
·  The pharmaceutical sector has, over the past decade, generated an ever-widening trade surplus (i.e. more exports and therefore money into the country than imports which means money out of the country), reaching almost £7 billion in 2009.
Which strapped for cash government is going to ask awkward question of their best income provider?

The media also have a lot to answer for in the way in which CCSVI has been handled in the UK. Many newspaper articles have sensational and overstated headlines. One TV programme, BBC South West Inside Out (reporter Sam Smith) set out with the explicit intention of putting a stop the CCSVI treatment which one private practice was carrying out. And in the end it succeeded in doing just, as the clinic’s insurers hiked their charges to a non-sustainable level.

People take notice of the information they get from the media, even though it might be incorrect or incomplete and sensationalising CCSVI treatment as a “Miracle Cure” or “Dangerous” sets up expectations and fears in the person in the street, something which is very difficult to undo. We were told at one time by a noted reporter in a well-respected Canadian magazine, that big business had control of newspaper groups and that it was in their interest to sensationalise items such as CCSVI in an effort to sell more newspapers and to maintain their grip on health related business.

Before the inception of NICE a doctor in the UK had the freedom to inform him or herself on innovative treatments or scientific discoveries and apply these to their patients if they thought it might be helpful. This is what happened in the case of the original venoplasty procedures. Now NICE issue guidance which doctors feel obliged to adhere to, even in Scotland where NICE has no jurisdiction, this fact alone has contributed to the hesitancy which has characterised the way in which CCSVI treatment has been dealt with.

It was even more surprising to us that the FDA’s influence reached across the water to the extent that it frightened a senior TV doctor in dropping a campaign aimed at informing the general public about CCSVI, not recommending it or putting pressure on the NHS to deliver a safe and well tried procedure to pwMS, but questioning the reasons why it was not being considered.

And what is the risk that the FDA was warning about? Angioplasty is after all a procedure which takes place in all our hospitals daily. The acceptable risk of death attached to this procedure when carried out on people without an MS diagnosis is 1% which is far higher than the 0.06% of people who have died as a result of lack of aftercare post angioplasty in MS diagnosed patients. It has crossed our minds that this was a ring fencing exercise on behalf of neurologists and upon digging a little deeper we did indeed find that the people who alerted the FDA about angioplasty in MS patients was a group of neuroscientists. ( http://bit.ly/RRwj0T )

Conclusion: conflicts of interest
It is our opinion that conflicts of interest are the reasons why CCSVI and its treatment have not be examined seriously in the UK, they are the reason why we do not have a voice here. The Pharmaceutical Industry, Neurologists, MS organisations, government, some politicians, scientists and researchers all have something to lose from a surgical treatment for what we call MS symptoms. Most of them would lose out financially, and a few might lose status and power. It seems as if revenue comes before the welfare of patients who live with this devastating condition. There is ample evidence now that angioplasty for CCSVI works for a significant number of people, there is also evidence to demonstrate that the benefits far outweigh the risks.
We have not been able to sit round a table and talk to people who might be in a position to influence researchers and policy makers in our area of interest. There are opportunities to get involved in local health delivery forums but they are not the place to discuss progressive ideas about the treatment of a neurological condition. What we need is some influential person to become interested in CCSVI and its treatment, someone whose voice is respected and believed. So far we have not found that person but we will carry on looking. Our one glimmer of hope at the moment rests with Private Eye who hopefully will prod a few politicians into action with their forthcoming article. It is time that the voice of people with MS, who want to receive treatment for a condition readily treated in others who do not have the dreaded diagnosis, to be heard.

Monday, 12 September 2011

CCSVI treatment in hindsight: Ella's story

A lot of water has flowed under the bridge since my daughter and I went to Poland in February 2010, many more people have been treated for CCSVI  which is Venous Insufficiency in the neck and torso area. The longer the story gets the more questions are getting answered. But there is a long way to go before we understand the reality of CCSVI treatment for people with the collection of symptoms we call MS.  So what have I learnt in the past 18 months? First of all this is not the miracle that the media would have you believe. It can certainly result in spectacular improvements for some people, (a good example this is the story of Cindy Fulton) but there are also a large number of people who notice only slight improvements in the short run, and there are people who notice no difference at all and whose condition continues to worsen. How can this be explained? There are a number of possible scenarios: the person does not have MS and has some other neurological condition, the person's neurological damage has progressed too far, the person's CNS is still suffering the effects of years of poor blood drainage, and probably many others that I cannot think of.
The prevalence of CCSVI is another recurring set of questions: why do some researchers not see CCSVI in practically all pwMS, why are there people out there with CCSVI and not MS, if you are diagnosed with CCSVI will you develop MS sometime in the future? At this present time we can only guess at the answers but here are some possibilities… From the beginning there have been questions about Doppler operator’s experience: it requires a certain amount of training and an understanding of the problems to be able to diagnose CCSVI and not every operator is either prepared to undergo the training or willing to admit that they do not have the expertise. On the same questions there could also be differences in the gene pool of certain parts of the world. For example the population in Italy may have a different prevalence of CCSVI to the population of Canada. On the question of the prevalence of - MS free CCSVI - in the general population, this could be due to other contributing factors: some people may be more susceptible to neurological damage than others, possibly due to their genetic make-up or possibly due to the lack of vitamin D or even due to an infective agent or a combination of all these factors.
In time, some of these questions will be answered if there is a will to do the research without the promise of great profits at the end of the process. Would it make a difference to the motivation of neurological and vascular researchers to know that the Multiple Sclerosis syndrome is much more prevalent in this country than current estimates suggest? From our early investigation into the numbers of people with MS in the UK it appears that 0.3% of the population has an MS diagnosis. That translates to about 195,000 in the UK. If you want to help with this research, write to your doctor and ask for the number of pwMS in his/her practice and total number of his/her patients and let me know the result. The more data we have the more ammunition we have against apathy. (Here is a link to a letter you could use for this.)
There are also questions aimed at the intervention process itself. Eighteen months ago, things were very different. For instance it was believed that people with RRMS were unlikely to have azygos vein involvement. It was thought that it only occurred in people with PPMS. However, Donald Reid, the surgeon doing UK procedures had noticed and told us at the Glasgow Conference that many RRMS and SPMS patients showed stenosis of the azygos vein which is impossible to diagnose with the Doppler.  So there may be a number of people who were treated earlier on whose azygos vein was not scrutinised for stenoses.  He used an intra-vascular camera called IVUS to shed light on areas that were difficult to make sense of on the X-ray and discovered significant blockages. He was also concerned about removing faulty jugular valves; he thought that there must be a better way of dealing with these malformations than removal. Valves are important to the proper function of circulation, and work is being done to find a way of making them functional rather than removing them.
Many questions have been answered since the treatment started, for example: we are always asked whether this is a safe treatment for people with MS, that question has been answered definitively by several practitioners who have published their data; it has also been answered by the social network feedback. It is estimated that 20,000 people have been treated worldwide and so far 3 people have died after undergoing the procedure. Although this is regrettable all but one could have been avoided. The unavoidable first death was connected to the procedure because the person was being treated with blood thinners and suffered from the effects of a bleed in the brain which could not be stemmed. The reason she had a bleed however, had nothing to do with the treatment, she had a previously undiscovered aneurism in her brain (an area of bulging in one of her blood vessels).
But there are still quite a number of questions to be answered and 10 years down the line the picture will be very different to what we know today. Diagnosis will become routine, there will be alternate ways of diagnosing CCSVI when the Doppler fails to show stenoses. A number of protocols will have been developed to suit the circumstances, using equipment appropriate to the particular problems displayed. The procedure will be carried out in the optimum amount of time to minimize radiation exposure whilst at the same time reviewing the results of the procedure before withdrawing the cannula. The patient will be followed for a set number of months and years and restenosis (which will be less prevalent) will be dealt with as a matter of course.
So what results has my daughter gained from her procedure? Better circulation, she does not display the blue legs from the knee down which first alerted me to the possibility of a circulation problem, no facial oedema, her bladder control is better and her condition has stabilised. She is no longer deteriorating as such a frighteningly rapid pace. She still works the same number of hours as she did before the procedure and rarely has any time off because of her condition. She still drives and goes out socially. Looking back, it seems to me that it took a while for this stabilisation to manifest itself. In the first couple of months following her procedure she had some significant deterioration, but that seems to have stopped. Once again only time will tell whether this stabilisation is permanent or just a temporary relief from the inexorable downward trend of Multiple Sclerosis symptoms.



Monday, 29 March 2010

Do I really want to Limbo through life?

Limbo is a word that has come into my vocabulary quite a few times in the last few days.  After the excitement of a trip to Poland with Ella and delivery of the petition in London, added to that the enormous amount of effort we have all put in since Christmas there has been the expected downturn in mood and energy in the ms-ccsvi-uk group I am part of. 
I was kind of expecting this flat  line period but it is still such a disappointment to see all that energy and enthusiasm slip away.  There is a real sense of loss that comes when something that has taken up your attention for a while comes to a natural conclusion. I do hope that a new cycle starts up after Easter, there is so much more to do.   
Limbo, of course is a dance where the bar is lowered after each attempt and the dancers wriggle their way below it unil they are eliminated by displacing the bar.  What I am hoping is that I will be able to lift the bar after a few days and allow more people to join in the effort to make  all things CCSVI happen in this country. 
I am going to have to write the April newsletter shortly and that might be an opportunity to encourage and enthuse people into a new effort.  I have plenty of material to write about so this month will be easy to write, but how to reach all the potential readers?  I know that G has created some kind of data storage facility but I'm not sure how it works.  Hope to sort that out before too long.
The news on Ella is tentative at the moment, these things take time, but the initial signs are good.

Sunday, 14 March 2010

Ella’s adventures in Katowice. part 1

This is the diary I kept of the first trip to Katowice, Poland.


Monday 15th February:

Waiting now to set off for Poland. Spent the day going through everything to make sure I had not forgotten anything. After all the waiting the time has finally arrived. I remember when I first told Ella about the prospect of Liberation. It was the day of her move into her new flat on the 19th November, I had heard from Dr Simka on the previous evening and he asked me to email again on the 10th December to be given a date. This I did and after a week or so of waiting for a reply I was given the 17th and 18th February. I was extremely lucky to find out about this just a few days before the Canadian TV documentary came out, because after that it was impossible to get a date for the Liberation procedure within 6 months and now the waiting list extends into years. I’m hoping that treatment will be available in this country before the Polish waiting list expires.

One worry that had been with me from the beginning was the matter of payent. It appeared that the
organisation in Katowice was a little haphazard. The doctors were the only people who spoke English
and they were busy, it was difficult to get any information at all. We had heard that we could pay by
card but some people had had difficulty with their bank in that regard, so the alternative was to take 
cash or to arrange a bank transfer (CHAPS).
The price at the time of booking was 4700 Euros for all the tests and up to 2 stents. Fortunately or
unfortunately as the time approached for us to travel they got themselves organised and appointed a
patient co-ordinator who spoke English but at the same time the cost of the procedure went up to
7,000 Euros which included the stay at a hotel and transport to other facilities used for the MRV.
What I had been trying to obtain was details of their bank account so that I could transfer the money
from the UK. I had asked for this information a couple of times but had not received a reply until
about two weeks before we were meant to get there. When I got the account details I organised
with my bank to have a CHAPS transfer done so that the money would reach them in a single day
rather than 4 or 5. You have to pay about £20 for this service but if time is short it is worth it.
The clinic will need details of your account including the IBAN and SWIFT/BIC reference
numbers in case you are due for a refund. You can also purchase the drugs that you might need
from them in local currency for about 200 zloty.

Tuesday 16th February 2010
Left Farnham early, early in the morning and travelled clockwise on the M25 in that awful not really rain type of rain that leaves your windscreen permanently obscured and in need of cleaning. Managed to get to Stansted in good time and without too many problems thanks to my GPS (who goes by the name of Gertie). Everyone at Stansted was very helpful and our journey was uneventful. We arrived at Katowice airport half an hour early, collected our hire car and went on our way to the hotel. If you think our roads are bad, you should come to Poland. I expect it is all that snow that wrecks the roads, so you have to be careful where you drive.

The hotel Zaleze is really nice, but it is located in a rather run down area of Katowice, where all the shop windows are protected by grills. The car is safely parked in a locked compound though so we felt confident it would come to no harm. I would have no hesitation in recommending it to people who do not need a wheelchair, as the staff is very helpful, the facilities are really good and the cost reasonable. There are however quite a few changes of level in the place as it appears to have been two buildings at one time which makes it more difficult to handle with a wheelchair.

We ate in the restaurant in the evening and the food was good, and at about £25 fed three, including drinks and coffee which we thought very reasonable.


I don’t think that people going to Poland for Liberation will have the same dilemmas as I did as they are now offering a complete package for visitors which includes Hotels and Transport, but if you do book your hotel yourself then before confirming your booking have a look at it through Google earth and look at the pictures of the surrounding area that visitors before you will have posted. It gives you a flavour of what to expect.

Wednesday 17th February
Drove 20 minutes or so to Zabrze hospital to have the MRV done. If you go there by taxi you will most probably be dropped off in front of a gate. Once inside the courtyard turn left and more or less in front of you and slightly to the left you will see the Radiology department. Go up the ramp or stairs through the double doors and along the corridor, making two left turns before being faced by a longer corridor. Half way down that corridor on the left is the Voxel facility where you need to register. A doctor there speaks English and will explain the forms that you will need to fill in and later give you instructions about the MRV itself. The whole process will take an hour or so. You will be given an image of relevant parts of your head, neck and chest and two CDs, one for you and one for Dr Simka. If you are driving allow extra time to find somewhere to park, especially in the winter as snow tends to be piled on the road side and takes up space usually available for parking. There might well be a hospital car park but I did not find it in spite of driving round the block.

Thursday 18th Feb

Ella had MRV on Wednesday and from my inexpert eye I could see on one of the pictures of a slice through her neck that there was one vein/artery not showing (4 on the left, 3 on the right) so I knew that there was something amiss, could not see where on the frontal pictures but in view of the eventual location that is not surprising as there is so much tissue/bone in that high up area.

On Thursday Dr Simka did the doppler and there was obviously some turbulence on the right hand side, but not much in the areas he was able to look at, from what he saw he thought that this turbulence might have something to do with the Azygos vein, although when he came back to check with Ella about her condition he seemed puzzled that she was not PPMS. In the event he was puzzled enough to go to the next stage which was to examine her under x-ray with opaque die flowing through her veins. This is where he found what he called a severe stenosis of the R Jug, right next to her ear/jaw. So professor Z conclusions about the correlation between the types of MS and the veins affected were vindicated once more. When I talked to Dr Simka later he remarked that Ella's case was a good example of why the results at Buffalo were not as good as the Zamboni results. They did not go on to treat the patients, or they might have found the problem in places that could not be seen with the doppler or the mrv.

I feel sorry for those patients who were sent away with a negative result.


Friday 19th February, Ella looks relaxed and unworried and everyone is having a good look at her bruises. They are quite spectacular, it may be because she has been given extra blood thinners… Tomorrow I have to find a chemist that sells the blood thinners she has to inject for the next few days. The local chemist did not have these, not surprising really as they must be quite specialised drugs. I know there are several chemists near the hospital and they are bound to have it there so will go look. Lunchtime we went hunting for a pizza hut, thank god for Gertie, Dan was a happy bunny and got the biggest pizza you have ever seen. It was so big that they dragged a stool over to stand it on… He could not finish it all, but he gave it a good go.


Ate in the restaurant again, the food is really nice and very reasonably priced and it is fun trying to understand the Polish menu with the help of the waitress that only speaks a bit of German… But everyone in the hotel is really nice and helpful.


Saturday 20th February, Ella decided that she wanted to go to Krakow. So after we have been to get the drugs we will drive the 50 km or so to the capital of the region. No problem at the chemist, they are obviously used to us English speaking people turning up to buy drugs, she nodded her head when she saw the prescription and disappeared into the back room, came back with the 7 syringes and rang them up on the till so I could see how much to hand over… That is one thing that I have found difficult to get the hand of, numbers I will have to study that a bit when I get home.


We drove to Krakow and the further we went the worse the weather got… by the time we got there it was snowing and foggy. Gertie Garmin (the GPS) was totally confused in the small streets so stopped parked up and decided to walk, but the weather was really unpleasant and when we had found out way to a park we decided to turn back as the fog was so dense we could not see the other end of it. Still we could say we had been to visit…

The doctors were saying that it would be 5 days before Ella would see any indication of improvement, and that will be the day after we get home…


Sunday 21st February. Sun shining, but still very cold, the tall chimney beside my window is smoking black smoke, I’m not sure what it is for and it is attached to a small building and only smokes for an hour at a time. Could it be a washroom? Very strange. Later today we are going to investigate the Imax to see what there is there.


The Imax is a great resource, probably the best thing about the area the hotel is in. Cinemas with lots of screens, restaurants, coffee bars, video arcade games, bowling, snooker and a crèche. We ate pizza again and watched Sherlock Holmes with Robert Downey Jr and Jude Law. Great film, we really enjoyed it and it brought a new dimension to the character.


When we got back to the hotel I asked how much it would be to make sure I had enough cash. The young woman got the bills out and added them up, it came to 3280 zlotys. Which was about 400 zlotys more than they quoted… But I was not going to argue… I have enough money here.


Monday 22nd February We have to leave our rooms at 11am and have decided to go back to the Imax to spend the day there as we don’t have to be at the airport until 18.00. When we got there Dan challenged me to a game of bowling and Ella accepted on my behalf. He won but I got a couple of strikes and given a bit more practice I could be competitive again. It has been a long time since I played.


We also went to the pictures again and watched Ghost writer, good acting but not good story… The book apparently is very good, but the film did not translate that. It lacked depth.


When we got out we drove to the airport via a sizeable detour to find a petrol station to fill the tank up, and lo and behold when we got to the airport there was a petrol station. All travel arrangements worked very well, Ella was in good form and when we arrived at Stansted Dan’s mum was there to pick them up.


I drove home and got in about 00.30 on Tuesday. Ella went to work that day… and for the next few days made some gradual improvements. Able to walk further than she had for some months, less fatigued and stronger in voice. Unfortunately some 10 days after getting home in the space of a couple days all her improvement faded away. And we are planning another trip to Poland exactly a month after the first one.






Liberation from CCSVI - intervention produced steroids

After Ella's liberation she experienced ten days of improvements similar to being on high dose steroids and it occured to me that the improvements she experienced may have been due to the steroids that the body produces naturally after a surgical intervention. I've done a bit of research and consulted a knowledgeable friend, and it turns out that the steroids produced are unlikely to make the kind of difference that high dose steroids do.  

Firstly the amounts produced are minuscule and secondly the intervention was minimally invasive with little surgical trauma. 

So the improvements were not due to steroids so the only conclusion I can come to is restenosis, and when I look back on my time with her in Poland I noticed that the only indicator I had of her CCSVI condition was the thread vein on her cheek.  It was quite obvious to me that after the procedure the vein was less angry and less prominent, but I noticed on the day before our return that her vein had taken on its previous prominent state.

The conclusion I draw from this is that the restenosis probably happened within 5 days of the liberation but that the positive effects of the short term more normal circulation did not manifest until after that period.  Hopefully we will get confirmation of this in the next ten days.

Saturday, 13 March 2010

Getting used to stepping out of myself

Such turmoil in my life, my daughter and her CCSVI and MS, the cause I am working for, the feeling of having to cope on my own with the planning of trips abroad, the difficult situation at home with mother in law and her dementia, and a husband that spends most of his time out of the house, leaving me to cope with the endless repetition of useless questions and the recurring anxiety attacks that the poor woman suffers.  And on top of all that the turmoil in my heart...

So every so often I step out of myself and look at me and my situation... and am surprised at this new person I have become, at what I have achieved both for myself and for others.  I am surprised at the energy I have displayed and at the resources I have found within myself. I am surprised at the things I have done, thought, felt and want all of this to continue.  This new person with the strong voice, the ability to make decisions, to change my mind, to let go of being right, to look at myself differently and let go of old restrictions and rules I have made for myself.  The few I was still hanging on to that is.  I want to keep this new person, I don't want to go back to the conciliatory person I used to be, I like the warrior me, even if at times I have to contain the aggression, so as not to frighten people off.  I like the easy courage I have found within myself that means I can face most tasks on my own and can ask for the things I need over and over again if necessary.

Would it not be good for this person to endure? I think it would.

Thursday, 11 March 2010

I'm a ccsvi whimp!

I'm a whimp... or maybe I'm tired or even just a tired whimp. Things don't seem quite so overwhelming in the mornings do they? After all it is not me who suffers from CCSVI and MS.
Sometimes I wish it was. It would be easier to cope with I think. Let my daughter have a full and productive life, let me who has had a full and interesting experience be confined to a wheelchair. Still enough winging, on with the next part of the adventure
I'm all set for Poland now, and if the last experience is anything to go by it will all go without a hitch. I've done my homework, I've paid my dues, I've organised, double checked, pinned down the last detail... The rest is in the lap of the Gods as they say.
I suppose the extra worry I am carrying just now, is the fact that Ella is worse now than she was before our first trip to Poland, why would that be? Were the improvements she saw down to natural steroids produced by the body after the surgical intervention? Has the vein restenosed? We will find out next week. There are still so many unanswered questions.