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I’m Margaret and was diagnosed with cervical dystonia three years ago. I am fortunate that I have no tremor, and the twisting in my neck only happens when I shut my eyes or lie down. That means it doesn’t affect me much during the day. However it’s really hard to get to sleep when you can’t feel relaxed. At night, the instant my head touched the pillow my head pulled strongly to the left and kept going until it was really painful. When I turned it back to centre it immediately started to turn again, relentlessly. I always woke during the night and then it was almost impossible to get back to sleep. So my main problem was terrible insomnia. Sometimes I would lie in bed and swing my head from side to side, very fast, just to get some relief. Sometimes I could trick my brain by lying on one side and twisting my head right around to the other side, so my brain would be confused and take a while to work out where I was. If I was lucky that gave me maybe 30 -50 seconds to get to sleep! But the twisting also affected many parts of my body. I had a really painful shoulder, my jaw was crooked so I often had pain and sometimes couldn’t chew for a few days. I had a painful foot, my back ached constantly, my knee was really painful and I spent a fortune on physiotherapy to fix things, which always got worse again. I also developed double vision which makes life very complicated.
I react very badly to most medications so I was afraid I would also react badly to botox, and that reaction would last until the botox wore off. So I searched long and hard for an alternative treatment. I spent a small fortune with an alternate dentist and a mouth guard which made no difference. Likewise with osteopathy. Then I found a website in Germany and as I speak a little German could just manage to understand it. I learnt about the “Cross Method” of intensive physiotherapy which has been practised for well over twenty years where hundreds of cervical dystonia patients have been treated successfully with intensive physiotherapy. I made very careful enquiries, rang them, up and they sounded absolutely genuine. Germans can get this treatment through their version of Medicare, so I knew it was safe and genuine.
I went to Germany in May, 2015 for three weeks of intensive physio, with a daily physio session, learning exercises designed specially for me, a daily massage and a session in the heated pool for underwater massage. You also spend time on a couch with a huge hot pack under your back or neck to relax the muscles that are being progressively loosened up. It was wonderful to be in a place where the practitioners know so much about dystonia and how to relieve it. I was told that if I did my exercises at least five days a week, found a good person to give me the right sort of massage on a regular basis and made some changes to the rather frantic lifestyle I was living, then I should get better. Totally. Almost all their patients do. They come back from time to time for a top up and to have their exercises adjusted as their body changes back to being untwisted and normal. I was told that my version of cervical dystonia is particularly hard to resolve and takes longer so I would need to be very very patient and not give up on the exercises.
So now, two years later the twisting has gone from a really powerful pull to a slight one, my head only moves a few centimetres before the “pull” completely loses strength and I can relax my head back straight. I am at last sleeping well and that is sheer heaven. Instead of dreading bedtime I look forward to it again. I’ve just returned from a two week follow-up visit in Germany which was marvellous and I apparently have some more work to do to get rid of every single twist in my spine, before the head turning will stop completely. But my teeth meet together, I have no pain in my jaw, foot, knee, shoulder or my back. So I know I am getting there. It takes determination and I realise it is not for everyone. It is certainly not a ‘quick fix’ but it is entirely without drugs and that suits my body. No side effects to be suffered. The cost – not cheap to fly to Germany but once there the treatment is far cheaper than you would need to pay in Australia for comparative treatment. They also offer accommodation at a very reasonable price.
My neurologist in Sydney told me at first I had spontaneous remission, but now he has changed his mind and is impressed. He says I have made him think and he will look into sending someone to Europe to have a look at what is practised over there. He is Dr Victor Fung from Westmead Hospital and in a good position I think to make that happen. I have told him I will hassle him until he does.
My dream now is that other Australians with cervical dystonia will have the chance to benefit from this marvellous treatment in Australia. Clearly several trips overseas are out of the question for most sufferers because of the cost and the disabling effects of the condition, but a Centre somewhere in Australia would make it possible for many more to benefit. Sadly, they have found in Germany that their method does not work with people who have had a few botox treatments because the nerves are damaged. So far they have had little success with other forms of dystonia either, so they work only with cervical dystonia in all its many forms, and its side effects.