Understanding dystonia and its treatment. Video on questions & answers

A good knowledge of the dystonia is important for a patient to become actor of its treatment. The Dystonia society UK asked me to answer to the most frequent questions coming from their members. Please follow this link if you want to watch this video posted on the Facebook pageof the Dystonia society.

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The questions were as follow:

What causes dystonia in adults? Can any vaccine, peripheral nerve damage, the menopause or the surgery has any affects? (Time 1.00)

Does dystonia spread? If so, are there any particular parts of the body it spreads to and from? (Time 6.20)

How long do the symptoms carry on getting worse? (Time 7.58)

I understand Botulinum toxin is a type of poison. Is it safe to use? (Time 13.35)

Can Botulinum toxin be used in pregnancy? (Time 13.39)

Is there a way to avoid side effects from Botulinum toxin such as pain at the injection sites, swallowing difficulties, blurred vision? (Time 15.21)

How can I manage pain in dystonia if it is not relieved by Botulinum toxin? Is it OK to take pain medications on long term basis? (Time 18.57)

Why is my Botulinum toxin not working? Might is this because I become immune to the toxin? (Time 20.41)

Is Artane (Trihexyphenidyl) helpful? Is there an age limit for taking it? (Time 31.54)

Can physiotherapy or mind retraining help? (Time 36.50)

Might diet or complementary therapy help to manage dystonia? (Time 39.09)

I hope it will contribute to a better understanding of dystonia by the patients themselves and help them to cope better in their daily life.

Dr MH Marion

British Neurotoxin Network 2013 meeting, Keble college, Oxford

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 The 3rd British Neurotoxin Network annual meeting was hold in Oxford last week; 74 Botulinum toxin injectors gathered for all over UK in the superb location of Keble college. The program covered both practical and scientific aspects of botulinum toxin and dystonia.

 I gave a pre dinner talk on facial expression of emotions, looking on how the concepts have evolved from the 19th century with Charles Bells ‘s anatomical dissection of the facial muscles, to the 21st century with the influence of facial Botox injections on our expression of emotions.The collaboration of Duchenne de Boulogne with his neurophysiology study and Charles Darwin on expression of emotions in man and animals contributes to the present understanding of the universality of expressions and the recognition of basic emotions on a face, which was confirmed by Paul Ekman, an American psychologist.The Botox has been used as a research tool in the 21-st century to understand the relation between emotion and facial expression. Repressing the expression of emotions by too much cosmetic Botox or by neurological conditions such as facial palsy could disturb in return our ability to perceive emotions.

image      Duchenne de Boulogne, 1862

 imageCharles Darwin, 1872

The following morning was dedicated on reviewing the techniques and indications of the treatment of drooling by Ms Helen Witherow, maxillo-facial surgeon in London, the treatment of jaw dystonia by myself and the comparison of 2 techniques of injection: either electromyographic guided or ultra sound guided injection by Dr Sabine Klepsch , neurophysiologist in Bristol. Ms Catharina Pearce, medical student from Cardiff presented the results of a national survey on the use of Botulinum toxin in pregnant women.

In the afternoon the lectures were focusing on new concepts in dystonia and in particular the attempt of defining a new endophenotype (heritable clinical markers) for adult onset focal dystonia by Dr Sean O’riordan from Dublin and Dr Richard Grunewald from Sheffield.

 Outside the Botulinum toxin treatment, Mr Alex Green, neurosurgeon in Oxford, explored the effect of Deep Brain Surgery on dystonia and Mr Richmond Stace physiotherapist in London, the basis for retraining of cervical dystonia.

A video session, where colleagues were presenting video of dystonic patients with unexpected outcome, was animated and the opportunity again to share our individual approach to treatment.

The meeting was also a great opportunity for the secretary Mr Bells to update the UK maps of the service using botulinum toxin for treating neurological conditions. it’s accessible to anybody who is looking for a specialist centre to be treated for dystonia in particular.

 Dr Marie-Helene Marion, chair of the British Neurotoxin Network