Poland: The Movie!

Here's a little montage of the trip to Poland for the Liberation Procedure. It's the last little film with Shelly Telly for a while - we'll be back with another co-production in about a month.

NICE issues draft CCSVI guidance | Multiple Sclerosis Society UK

NICE issues draft CCSVI guidance | Multiple Sclerosis Society UK

The Breakthrough Treatment for MS | View it in your browser.

Effectiveness of CCSVI Treatment CCSVI is undoubtedly one of the major discoveries in medicine this century. To actually define a new medical condition with anatomical abnormalities is a breathtaking development. It is no surprise that it has created considerable controversy in the medical world. How could we have missed something so important and indeed there are some published papers which cast doubt on the very existence of CCSVI? Having observed the lesions on Doppler ultrasound, venogram and with intravascular ultrasound, it is clear that this is a real condition and in time all doubts will be cast aside. The area where there is still some doubt however is whether treating these lesions produces a worthwhile clinical benefit. CCSVI is a great discovery but is it a breakthrough in treatment for patients with MS and other neurovascular conditions? The Bologna conference in March 2011, from the International Society of Neurovascular Disease (ISNVD), was a great platform for the presentation of new research into CCSVI. It was also a good forum for introducing the next generation of studies which are aimed at investigating the effectiveness of CCSVI treatment. The current president of ISNVD is Professor Robert Zivadinov; a consultant neurologist from Buffalo University in New York. His background is in Multiple Sclerosis research mainly into pharmaceutical treatments for the disease. It was very clear from his conference presentations, and in conversation, that he is an academic heavyweight who has concluded that CCSVI is a very important area requiring clinical investigation. He is involved in one of the three randomised controlled trials into CCSVI treatment and has a strong association with Paulo Zamboni and the University of Ferrara. This combined team from these two Universities, Buffalo and Ferrara, have published an early trial on the effectiveness of treatment in the European Journal of Vascular and Endovascular Surgery (1). Although the number of patients was small, fifteen in total, the results are suggestive of a positive effect from CCSVI treatment. There was no control group in the study but the angioplasty treatment was staggered with a group of eight patients treated initially and the other seven treated after a six month delay. One of the traditional study endpoints in MS is the frequency of relapses which was reduced in the early treatment group. Two of the initial group had a relapse in the next six months as opposed to five from the seven who were in the delayed group (had not been treated at that point). Of even greater significance was the fact that the brain volume of the treated group was reduced compared to the untreated group. This would suggest that treatment of the venous outflow from the brain, reduces swelling and inflammation. As Prof Zivadinov suggests, the numbers are too small to make any firm conclusions but the positive outcomes give great encouragement for future research. As part of our ongoing investigative approach to CCSVI treatment in Scotland, we are collecting a large amount of data including an independent assessment of neurological function. Early indications are that our results are very similar to those being published and presented at International conferences. It will be some time before we have the data fully analysed but we are very encouraged by the objective improvements reported both here in the UK and abroad, The largest randomised controlled trial is due to start in Italy , BRAVE DREAMS, is looking at several hundred patients and will hopefully be of a size that can allow more concrete conclusions to be drawn. Another New York based study at Albany University, under the direction of Dr Manish Mehta, is a prospective randomised double blind trial which aims to recruit 600 patients. Initial results were presented at the Second CCSVI Conference in New York in July 2011. 48 patients who had undergone angioplasty treatment were assessed after 4.5 months using the Expanded Disability Severity Score (EDSS). The EDSS is a very difficult score to improve but in these patients there was a statistical improvement in those with relapsing remitting MS and secondary progressive MS. The patients with primary progressive did not improve on EDSS. 79 patients were evaluated with a timed 25 foot walk which showed significant improvements. He also reported that there were improvements in fatigue and quality of life indices for those who had undergone treatment. While these results are far from conclusive, in combination with the excellent safety data which has recently been published, they are very encouraging and suggest that CCSVI is not just a major discovery but may also have opened the way for improved treatments for MS. References : P. Zamboni, R. Galeotti, B. Weinstock-Guttman, C. Kennedy, F. Salvi, R. Zivadinov,  European Journal of Vascular and Endovascular Surgery 12 August 2011 Venous Angioplasty in Patients with Multiple Sclerosis: Results of a Pilot Study

Vein procedure to help those with MS | News | Nursing Times

Vein procedure to help those with MS | News | Nursing Times

The're beginning to take notice; keep feeding them information and results

pa.press.net, Updated: 24/08/2011 04:03

New research into MS gets go-ahead

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A procedure which could relieve symptoms for some people who have MS is to be researched further

The go-ahead has been given for further research into a procedure which could relieve symptoms for some people who have multiple sclerosis.

The procedure, called percutaneous venoplasty, aims to improve blood flow from the brain by using a small inflatable balloon or stent to widen narrowed veins in the neck which carry oxygen-depleted blood.

Multiple sclerosis is the most common disabling neurological condition affecting young adults. Around 100,000 people in the UK have MS.

The National Institute for Health and Clinical Excellence (Nice) is proposing in its draft guidance that the procedure should be used in the context of research only, so further evidence on its safety and clinical efficacy can be developed.

It has been suggested that there could be a link between narrowed veins - called chronic cerebrospinal venous insufficiency, or CCSVI - and the progression of MS.

Professor Bruce Campbell, chairman of the independent committee that develops Nice's interventional procedures guidance, said: "Multiple sclerosis can be a distressing and disabling condition with a lack of effective treatments.

"This means that it is really important to find out whether percutaneous venoplasty is clinically effective and safe for use in the NHS.

"Based on the existing evidence, we believe that clinicians should only consider offering percutaneous venoplasty as a treatment option for people with MS who fit the diagnostic criteria for CCSVI, as part of structured clinical trials.

"In particular, we would welcome controlled research comparing percutaneous venoplasty against 'sham venoplasty', in the same way that drug treatments are compared to a placebo.

"This is so that we can learn more about whether venoplasty works and for how long. Further research could also improve the understanding of the relationship between MS and CCSVI, as this is very unclear at present."

Mobilty pre-Poland: A retrospective blog

This little film shows you a series of clips Dugald and I filmed in the days before we set off on the 2nd August.
A record of the 'state of play' is important to me, just in case I forget how things were.  If I  improve or worsen is almost secondary to my wish that  the  correction of CCSVI has positive effect on MS. In the mean time a 'getting on with it 'approach helps.

Hopes for Liberation Procedure : my retrospective thoughts late one evening in July

Shell and I have started to meet again to edit the footage Dugald took of the Poland trip. This first little film is of me recording my hopes for the trip, last week in July, a week before we set off. 

2 weeks post angioplasty procedure.

Its been 2 weeks since the angioplasty in Poland. The question I'm asked endlessly; any improvements. Yes and No , I mention before that there has been no Damacene moment, I did not expect it but I believe there have been changes by degrees. Bearing in mind I am in the group of  pw MS who respond the least , ie PPMS , EDSS score of 6.5 and having been diagnosed for about 20 years: I wasn't expecting much.

However I am pleased to relate I have felt better by degrees, clearer thinking, creative juices flowing, increased  motivated,  more energy.
I choke less and have fewer naps although I still need these periodically.
These are things I notice and by the people I am most close too. That in itself is heartening . CCSVI just feels so right , far more than just the  auto immune theory which I believe plays a part in this complex disease.

It will be more realistic and there -fore telling when I finish my annual leave and I'm back to work. I work 4 days , 5 hours a day as a antenatal and postnatal  midwife. I will blog again in 2 weeks and then hopefully with a video too.

 I'm looking forward to my follow-up in Poland in February to check my veins and a repeat MRI scan .  Until then  I will bathe in the belief that I have a future and that the end of the line is not inevitable through MS.

http://www.flickr.com/photos/ccsvitoronto/4858055233/in/set-72157624532159859/lightbox/

Some very inspirational quotes on offer from some very insightful people.
Read and share.

You may need to cut and paste the link on to your browser to view.  If any body knows correctly please email me. I'm willing to learn. Jenny

My liberation surgery; CCSVI became a synonym for hope

My liberation surgery by Ingeborg Boyens

he Breakthrough Treatment for MS | View it in your browser.

CCSVI Update A clear understanding of Multiple sclerosis has proved elusive for generations of doctors and scientists. The first suggestion that there could be a vascular component to the disease dates back 180 years to Sir Robert Carswell from Glasgow. He was drawing an image of a post mortem sample of brain tissue from an MS patient and commented that "there appears to be vascular lesions here". Dr Franz Schelling from Austria has been a lone voice for many years in promoting this theory and I spent an intriguing half hour with Franz as he drew the various venous sinuses on napkins at the CCSVI conference in Poland this year. It was Franz who convinced Paulo Zamboni to explore this field and the results of that collaboration has changed the world of medicine. The recent discovery of the importance of CCSVI has filled in many of the gaps in our understanding of the disease. At the International Society of Neurovascular Diseasemeeting in Bologna in March this year, Dr David Hubbard, a consultant neurologist from San Diego, gave the clearest description of MS that I have ever heard. He described how leakage of blood products across the blood brain barrier caused the initial damage in the brain tissue. The immune system became aware of this damage and was triggered to respond as a secondary event. I sought him out later to congratulate him on his presentation and particularly the clarity of his description of how the vascular and immune parts of the disease interact. This made sense on many levels and explained why most current treatments are only partially effective as they are aimed at the secondary and not the primary driver of the disease. This new paradigm does not exclude the immune system and immune modulating drugs as part of a treatment regime but this new understanding gives new possibilities for treatment with the possibility of improved outcomes. Treating venous pressure by means of angioplasty could be a relatively safe and easy way of improving outcomes in MS if this theory is proven to be correct. A recent study by Ivo Petrov from Bulgaria, presented a series of over 461 CCSVI procedures carried out in Sofia, showed no major complications which confirmed the safety of angioplasty in MS (1). A new paper published in the Journal 'Brain' in June 2011 appears to support this new paradigm (2). A research team from Vienna examined post mortem samples of 30 MS patients and 25 controls who died of other causes. For the first time, they have shown that the most recent MS lesions were associated with oxidative stress damage consistent with leakage across the blood brain barrier. Older lesions showed the T lymphocyte infiltration typical of an immune response. A good demonstration of the damage that blood products can produce is in cellulitis in legs associated with varicose veins. As the veins enlarge, the increased pressure in the vessel causes the junction between endothelial cells lining the vein to widen allowing blood products to leak into the leg tissues. This causes inflammation in the tissues with the classic inflammatory signs of redness, heat, swelling and pain as seen in this image. The brain has the relative protection of the blood brain barrier but this is simply a tighter connection between endothelial cells, thirty proteins joining the cells as opposed to the usual ten. Increased venous pressure in the deep veins of the brain will eventually loosen even these tight junctions and when the blood products leak into brain tissue the damage will be similar to that seen in leg cellulitis. The secondary immune response is triggered to try in an attempt to limit this damage but in itself, this response can increase inflammation. After seven years of successfully using LDN in the management of MS, I knew that the immune system was an important factor in all types of the disease. Paulo Zamboni, Franz Schnelling, David Hubbard and others are helping us to understand the complex interplay between the immune system and the venous system in MS. A combined approach to the management of the disease is a logical way forward. Like any new paradigm, this will take some time to be accepted by all of those involved in treating and raising the awareness of this condition but as the research stacks up, it will become clear that a major step towards understanding and successfully treating MS has taken place. There is still much to learn and many unanswered questions but CCSVI has taken us a long way towards better understanding and treatment of this complex condition. References : Petrov I, Grozdinski L, Kaninski G, Iliev N, Iloska M, Radev A. J Endovasc Ther. 2011 Jun;18(3):314-23. Safety profile of endovascular treatment for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Haider et al. Oxidative damage in Multiple Sclerosis Lesions. Brain 7th june 2011

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POST ANGIOPLASTY BLOG

The angioplasty is done after the venography confirmed reduce jugular venous flow and significant reflux.  The balloon angioplasty cleared most of what was possible and normalised the flow of blood from my head.

What a relief it is done! What will happen from now is anybody’s guess. Personally I am hoping for a stop in  the progression of the disease and any improvements that it might afford.  Whether CCSVI believers are right  or wrong, it is so relieving that an interest is being taken in this peculiar disease; information about rehabilitation; and positive words like regaining strength and function and improvement in quality of life; rather than sad shake of the head at our misfortune and a mental writing-off.  It’s all very positive that we might dare to hope, and hope we must.

It’s far too early to start listing gains and losses, hopes and fears, except that I will report a reduction in fatigue and brain fussiness. I believe my thinking is clearer, my husband might disagree. [Not at all – fully agree: husband]  Whilst we are on the subject of husbands, it would be impossible without Dugalds 100% support and encouragement, for which I shall be eternally grateful. Bless you my boy.

I recommend the Ameds Centrum clinic in Grodzick Mazowieski, near Warsaw, Poland. It was extremely professional and well organised with obvious skill, experience and a transparent wish to make things better for people who have previously been hopeless.  They work with integrity, investigating you thoroughly and only doing what is appropriate and safe for you.

 By the way if you mention the source of the recommendation you get a 5% discount (i.e. me). This translates into a good bottle of champagne to celebrate!