The God Squad

The Irish Times – Tuesday, November 27, 2012

A diagnoses of cervical dystonia, following a car crash, raised the prospect of a life of Botox injections, writes JULIANNE CLARKE

On April 24th, 2006 a car crashed into the back of my vehicle as I was turning into my local gym.

All I can remember is the loud bang. I came to with my head resting on the steering wheel. My car was now facing the opposite direction on the road. When I moved I was in severe pain in my neck and shoulders.

An ambulance took me to the hospital that evening. I had a suspected broken neck. However, on further examination the attending doctor diagnosed severe soft tissue damage to my neck and back. I did not feel the pain in my back for another 72 hours.

A week later my consultant confirmed the diagnosis. He predicted a two-year recovery period.

I struggled on for another 18 months with no significant improvement despite my best efforts. The worst pain was in my neck and shoulders. I rated the pain as 10-plus on a scale of 1 to 10.

Diagnosis

I sought further medical advice. In September 2007 I was diagnosed with post-traumatic cervical dystonia. I was 42 years old. I had suffered for the previous 18 months with undiagnosed symptoms of dystonia in addition to the soft tissue damage.

The symptoms of dystonia are muscle spasm due to faulty signals coming from the brain and abnormal body posture. Dystonia is not curable and the treatment is Botox injections every eight to 10 weeks for life to manage the condition. These injections reduced my pain on average by about 40 per cent to 60 per cent, with the effects wearing off by week 6 to 7.

In my case, the abnormal posture associated with dystonia was mild, but the pain was severe. My neck and shoulder muscles were in constant spasm, and my left shoulder was raised slightly with my head tilting to the right. I had difficulty turning my head to the right or left.

I live on the west coast of Ireland, 20 miles from the nearest city. Before the accident I was running a few times a week, working full-time and generally living a busy life. I had completed a tough half-marathon in Connemara in early April 2006, a few weeks before the car crash.

I did freelance work for eight years prior to the accident for Government organisations. My work was in community/adult education as a teacher, mentor and facilitator.

After the accident I had difficulty working. Any task that involved moving neck and shoulder muscles even slightly caused severe spasm. For example, I had difficulty with writing, working on the computer, giving presentations, standing for more than 10 minutes and driving.

I found that I was losing my foothold in the contract world. I had no energy to market myself or tender for jobs as is needed when working on a freelance basis.

New life

As I began to realise I was facing a lifetime of Botox injections and serious disability I decided I needed to take control over the direction of my life and research alternative treatments.

A few years after I was diagnosed with cervical dystonia I came across a therapy called Scenar. Neurologist Dr Alexander Revenko was one of the scientists who developed this therapy in Russia.

The therapy is based on the principles of traditional Chinese medicine, acupuncture and zonal contact massage and electrotherapy. Inner acceptance of my injury, daily meditation and visualising well-being brought me to a place where I was ready and open to becoming well.

I worked intensely with Scenar in the first seven months of 2011. I attended a therapist in London, Debra Graham, who is an associate of Dr Revenko and worked in conjunction with him on my case. I had about 25 treatment sessions. A few of these were in Moscow in Russia with Dr Revenko.

I also did home treatment, guided by Dr Revenko. This involved using a healing blanket designed by the Scenar team and a home device. I spent all of my time in the first half of 2011 between home treatments and travelling to treatment sessions.

After the first treatment my neck movement was much freer. I was able to look right and left with ease for the first time since the accident.

Each treatment session cost £50.

It is over a year since I finished the therapy. I have spent the last year getting into good physical shape. I ran the half-marathon in Connemara in April.

I went back to University in September to do a postgraduate diploma in Journalism. My life is taking a new direction and I am looking forward to where it is bringing me.

I know now there is a life beyond Botox.