More CCSVI success

I was delighted today to meet with one of my friends who has been out to Bulgaria for the liberation procedure. For the first time in a long time she was able to walk across from the car without the use of a stick. The grins on her face and that of her husband said it all really.

Prior to going out there, she used a wheelchair or mobility scooter for any distance, and  a cane (plus husband) or two canes for short walks. She had gone from working full time to a couple of days a week and even that was getting too much. Two weeks on from her operation and she goes back to work tomorrow.

Like most people I speak to, her feet are now warm, much to her husband's delight. Her balance is back, although her legs are still weak after so long. She has visited a supermarket, again for the first time and goes for walks. Her back pain has resolved

She spent two hours in the operating theatre, LJV 90%, RJV 80% Azygous 70% blocked. Unlike me, she was not sedated during the procedure and felt a definite "whooshing" as the blockages were cleared. A lifelong lump behind her right ear, which had been described as a fluid filled cyst, has now vanished. The CDs of her operation make fascinating viewing.

 Another friend, who was much further along with MS, can now put gloves on hands that were virtually useless, and move her legs in bed.

The evidence of benefit from this approach is building all the time and the grins are spreading.

Language barriers

I have been spending some time thinking about the difference in mind set between the neurologist and the person with MS, and have come to the conclusion that part of the problem is the difference in language used by the two groups to describe the same thing.

As the MS patient we describe the loss of a function, the loss of something we had or were able to do before. Loss is associated with grief and anger, and hope that we may find it again. Loss affects us on a very deep level,  particularly when it is cumulative as in MS. Each time we must try to acclimatise ourselves to a new normal, while grieving for the one we left behind. The language we use is emotive as we describe our personal story.

For the neurologists, there are diseases and descriptions such as ataxia, aphasia; files and notes,  to develop a case history. Which is not the story of Joe and his battle with his daily life. There is no narrative. Instead it is a catalogue of deficits and disorders. Deliberately depersonalised, the medical professions use language to maintain objectivity and distance from their patients. Emotion is excluded.

For anyone who has studied a foreign language, they will appreciate that it is not just a matter of memorising vocabulary and the rules of grammar. It both expresses and directs the way we think. This has been reflected in the removal from everyday use of words with negative connotations, particularly those used in the past to describe race, colour or beliefs.

So perhaps it is no surprise that we find ourselves on different sides in the debate over CCSVI, staring at the opposition in a form of despairing bafflement. Why can they not understand our position?

The importance of follow-up studies.

I know I have written about this before, but I cannot over-emphasise the importance of recording data on patients having the liberation procedure and what happens to them subsequently.

Kuwait is recording data, and the clinic I went to in Poland is doing 6-month and 12-month follow-up with their patients, but because so many MS patients are travelling long distances at considerable personal expense to have the treatment done, how many will attend their check-ups?

If we are to get a true picture of the effectiveness or otherwise of CCSVI treatment, then, in my view, longitudinal prospective studies (Studies in which individuals are followed up over time to assess who develops a certain outcome)are the way to go.

Double blind studies may be the gold standard for drugs, where it is important to separate benefits seen from the effects of the drug, and those seen from the effect of just being in a study. But I am not convinced that this is appropriate for a surgical procedure. Would you do this for a heart transplant to assess the long term result on the patient? I don't see that it is ethical.

But a longitudinal study of those on whom the procedure has been carried out, detailing change in symptoms over time, and over a large enough patient population, should give a true picture of the value and effectiveness. Although the progress of MS in an individual patient is erratic and virtually impossible to predict, there is sufficient data available to indicate the prognosis for a large patient population and to provide averages to compare predicted outcomes over time, and those actually experienced. (For example this paper)


Some other patient populations ,such as those on Tysabri, are being very carefully monitored, because of the known and very real risk of PML, an often fatal brain infection. As this is currently the most effective drug therapy in slowing progression and reducing relapses in MS, they could provide a useful comparison group.

In the meantime, what can we do? Pressure on our medical and MS societies, certainly. But please, if you are planning or have had the angioplasty, please record your information on CCSVI Tracking. Negative results are as important, if not more so than positive ones, to gain some understanding of this disease we live with.

By using the power of the web, we have the potential to carry out possibly the largest study ever. So take part.

Emotional incontinence

Just as I spoke about improvement in my emotional control following my procedure, it seems that a new drug has been approved by the FDA to reduce the effects of  Pseudobulbar Affect (PBA) which can lead to uncontrollable and sometimes inappropriate laughing and crying..It is a combination of dextromethorphan, usually used as a cough suppressant, and quinidine, used to control the heart.

Nuedexta as it is called  was approved on 30th October , and the company, Avenir, expects it to be available by prescription first quarter 2011 in the USA. UK patients don't hold your breath.

Interestingly, if you Google for Nuedexta, the first item is "Avanir Pharma shares double on FDA drug approval".

Gilenya, the new oral  disease modifying drug for MS, is also to be available on prescription shortly. Whilst anything that does not involve sticking yourself with a needle on a regular basis is to be applauded, I for one will be watching to see the level of side effects once it reaches a wider population. Because I take Cordyceps, from which it was developed, I tried unsucessfully to join one of the drug trials.

I shall be tracking and comparing reported side effects with those reported as a consequence of the Liberation Procedure.I shall try to keep my personal thoughts and emotions out of it.

Talking of emotional incontinence, I was reminded today by someone that it can be hard to deal with the exuberence of the successful for those who tried CCSVI treatent and got no benefit.Yes there are some out there. It can be hard to remember those less lucky when it feels like a miracle in your own life.

The guy in question is still an advocate of CCSVI via the CCSVI Alliance. Kudos to him, it must be difficult sometimes. The site offers some excellent information, so go visit.

Odds and ends

A few things have been crossing my mind lately, that I thought I would like to share. Firstly, my older MS symptoms (intention tremor in my left hand, MS hug, weird optical effects when tired being the main ones) are still hanging around, although much less severe than before my procedure. Later ones have almost gone, noticeable only to those who know me well. This would sit well with the theory that the damage in my CNS is related to the venous circulation, as older damage is likely to be more profound and more difficult to recover from, but more recently affected areas would recover more quickly, following an improvement in that circulation.

The main symptom I have left is trigeminal and/or occipital neuralgia, for which I take carbamazepine. Compared to the cut my head off please severity of the pain I had even a few months ago, the pain is relatively mild and of short duration. Little is known about the causes of this horrendous condition, but interestingly many cases are related to an abnormality where the nerve comes out of the skull from the brain, or where a blood vessel presses on the nerve.  I wonder if there is a structural relationship with CCSVI?

I am not, nor have I been, taking any of the disease modifying drugs. The nearest I have taken to an immune modulator is Cordyceps sinensis capsules. I took them primarily because they reduced my fatigue levels. For those familiar with the spoon theory of chronic disease, they gave me an extra spoon. Along with vitamins D and B12, that is my main supplement, although I'm finding it hard to maintain any motivation for taking supplements at the moment.

As I said in a previous post, I have two friends undergoing the procedure at the moment. Both were found to have significant (greater than 70%)  blockage of the jugular and azygous veins. Regardless of any direct causal link with MS, this must reduce function in the brain and spinal chord. I am waiting to hear their results.

Finally, many people have remarked on the restoration of my personality since the operation. I had not been aware of it myself, but I suppose chronic pain and reduction in quality of life could have been responsible , but I am amazed how many say that I have my old self back. The scientific arguments continue, but we who have undergone this life-changing operation are its greatest argument for making it widely available.

Awakenings

Does anyone remember the 1990 film Awakenings starring Robert DeNiro and Robin Williams? It was about a group of patients who were in a catatonic state after an epidemic infection, but who were revived after being given a new drug.

This film has been on my mind much recently, not just because I too feel like I have been reawakened to life, but because of the second half of the film, where the effects of the treatment start to wear off, and they return to their sleeping state. I suppose it is one of the risks of being an early patient, that you don't really know what is the likely long term outlook.

I have been asked by people ,who have seen my dramatic improvement, what is the prognosis, but I don't really know. The surgeon who did my procedure was delighted with the results he got, particularly on my right jugular, and said he didn't think I would re-stenose. But it is a risk.

So there is an edge to my delight in my relatively symptom free existence at the moment. Whereas before, on waking , I would do a body check to see what else had gone wrong today, what other joys the MonSter had in store for me, now I find myself on almost constant alert, looking for the merest hint that MS was getting the upper hand again and the effects of my treatment are beginning to wear off.

Meanwhile, I see people going off to try their luck with Liberation. As I write, two of my friends are in Bulgaria, and others are investigating the possibility for themselves.

And so the movie weighs heavily on my mind. Its tag line: There is no such thing as a simple miracle.

CCSVI - the debate continues

I have had the procedure and got good results, so it doesn't take much working out which side of the CCSVI debate I'm on. But that doesn't stop me reading and listening to everything both sides have to say. Most of the time the discussion is fairly rational, if a little heated on occasion.

Any new theory, whether or not it proves to be found true in the longer term, is expected to be greeted with a little healthy scepticism in the beginning. Equally those in favour can be quite disparaging of those unwilling to embrace the new concept. As an MS patient it can be distressing to see this, not knowing for sure which side is correct.

It is therefore doubly distressing when when highly emotive language is used. Describing supporters of the theory as acolytes and pilgrims and Dr Zamboni's findings as a figment of the imagination does nothing to further rational debate on the issue. Accusing all naysayers of being in the pockets of the large drug companies also blinds many potential supporters and makes them harden their position.

Recent small sample studies in Holland using MRV rather than Doppler ultrasound have failed to confirm Dr Zamboni's findings. Is this due to differences in technique, the sample size used or a genuine refutation of the theory?

I don't know.

Nor do I know how much the anecdotal reports of MS patients and the declared results of the large number of centres around the world offering angioplasty support the theory.

All I know for sure is that I had the operation and my symptoms reduced dramatically almost immediately afterwards.

Ignaz Semmelweis in 1847 demonstrated that "childbed fever" could be dramtically reduced by the simple introduction of hand washing by medical staff between patients. He lectured and published books, but the reception by the medical community was somewhat hostile. It was not until after his death in 1865, ironically of blood poisoning, that his work was finally vindicated. He is now recognised as a pioneer or the use of antiseptics to control infection.

The link between hand washing and reduction in deaths in the maternity units took nearly 20 years to be made. Some of us don't have 20 years to wait.