The Frustrated Voice

The Frustrated Voice
The location of the problem

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.


Peter2009 said...

Thank you for your story. I can recognize my own story in it. I had angio in Belgium and only light changes. I think might have a restenosis.

Jenny said...

Thanks Michelle , a well written account . I have posted your blog onto my blog, with acknowledgement- just to spread the word. There's alot to explain to alot of people, so thank you.

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