More Than Just A Pain In The Neck: Dystonia

Following the appearance of this article in the issue of "Talk Of The North" published today, this is the article about dystonia that was in the publication.


You know how it is. You wake up one morning. You've been lying awkwardly. The neck's stiff. It takes some time to shake off. It can be inconvenient to say the least. Bending your head to wash, turning your head when driving. Awkward, and it nags away until finally it just goes away.

You don't know how it is. You wake up one morning. The neck's stiff, but it's more than stiff. It's agony. And you can't shake it off. The neck has twisted, distorted. It's not going away, because it's permanent and there's no cure.

Julie Sanderson knows how it is. It started to come on in July last year. What she didn't know, initially, and nor did the medics, was that she was suffering from dystonia. And in her case, one of the variants of the complaint - cervical dystonia.

Dystonia is little known and little understood. It can affect anyone, of any age. It can affect different parts of the body, the most severe types being "multifocal" and generalised which affect several muscle groups. Common to all forms of dystonia is the fact that they are neurological disorders, resulting in involuntary movements and abnormalities of posture or even of speech and sight.

Diagnosis of dystonia is not straightforward. At Muro hospital, the medics thought Julie's problem might be a trapped nerve. Two months after the onset of the condition, however, there was no improvement. Indeed it was getting worse, her neck now constantly turned to one side and the pain unrelenting. Julie realised there was more to this than a trapped nerve. "There was no brain-neck connection." Hard as she might have tried to move her head, there was no response.

The breakthrough came in an unexpected way. During a visit to the pediatrician with her elder daughter, it was he who recognised the dystonia, and a suggestion of diagnosis which led to scans and then finally to treatment by the specialist Dr. Francisco Molina at Son Dureta, now at Son Espases. That treatment is one of the few available to dystonia sufferers. It involves the injection of Botox into the muscles every three months.

The Botox in effect weakens the muscles. Combined with muscle relaxants, it does at least allow Julie to lead something of a more normal life and to be able sleep more properly. But everyday activities are still a struggle. Anything from making the beds to reading a book can be difficult. Julie, separated from her husband, has come to rely on her daughters, mother and sister for assistance. And being a part of a family which runs a bar, the Jolly Roger in Puerto Alcúdia, has also not been easy. Not just in terms of the practicalities but also in terms of the "looks" and some of the comments.

"It was really quite upsetting to begin with. People seemed to treat it as a bit of a joke, and there would be all sorts of, well, pretty immature remarks. Mostly of a sexual nature." The initial responses from those who did not understand the condition added to how badly Julie felt, and how depressed the condition made her. It was the very involuntary nature of the neck movements that made it especially tough. The head can suddenly swivel to such a degree that, as Julie says, "you look like you're in 'The Exorcist' ".

"You have to learn to live with it, though. That's all you can do. Take the Botox every three months, and that's about it." She has started to take reassurance from the fact that as time has gone one, she has found out more about dystonia and read about others who suffer similarly. She mentions an article she found in the "Daily Mail" in which someone, two years after contracting dystonia, has now come to terms with it.

There is a more radical treatment than the Botox, and this is deep-brain stimulation. This requires the implanting of an electrode, analogous to a pacemaker, and is a procedure that is also used to treat Parkinson's disease. It is not, though, one that Dr. Molina is inclined to recommend. Chances of success are less than 50%, while the procedure tends to be reserved for patients who develop resistance to the Botox.

With the treatments only limited, there is a not unnatural desire to look for alternatives. Julie has been to two chiropractors, one who decided she was crazy and the other who reckoned the condition could be cured. It just made it worse. Dr. Molina was far from impressed when he was told. Manipulation of the muscles, even through gentle massage, can be harmful and also undo the work of the Botox. Despite the Botox alleviating the pain, ideally Julie would do very little in order not to make the Botox wear off too quickly. As it is, the injections have to be timed exactly. If not, then the neck would twist more and the head droop.

There are reckoned to be around 30 cases of dystonia in Mallorca which are similar to Julie's. Its comparative rareness is what can make it difficult to diagnose and is what means that there is an ignorance of the condition outside of the medical world. Julie wants to try and make people more aware of dystonia and also to reach out to other sufferers. Other than family and friends and the work of Dr. Molina, there is no support network for dystonia. And as with many conditions, this can be of huge psychological importance in coping with what is a cruelly debilitating disorder.

Any comments to andrew@thealcudiaguide.com please.