My name is Diane Bulley; I am 46 years old and was diagnosed with Cervical Dystonia in august 2008. My symptoms first started during 2007 with my husband Peter noticing that I was watching TV out of the corner of my eye. Soon after, friends & relatives started to ask what was wrong with my neck as it appeared to twist to the left.
After visiting my GP, I was referred to a Neurologist who confirmed the diagnosis and then referred to the local Dystonia clinic. During December 2008 I began receiving a course of Botox injections every 3 months. At this point I was informed that all I needed was a course of Botox injections & I would soon be as good as new!. Unfortunately, I had a very poor response to this and at best my neck would only straighten for a maximum of 3 weeks. After trying three different types of Botox, tests showed I have developed anti-bodies to the types used so have to wait until my next injections when they will try a different variant. If this is still unsuccessful, I will have to be without injections for 12 months to allow the anti-bodies to clear.
After struggling to cope with everyday life, by physically having to hold my head straight, I asked about the possibility of wearing some type of collar. After much deliberation, my consultant finally agreed and referred me to the appliance office at a local hospital where a cast was taken from my chin down to my shoulders, and a collar was made. This has had a dramatic effect on my life; I can now do household chores such as cooking and shopping in relative comfort, and have been able to complete a computer course. Unfortunately, I am still unable to drive or function in a workplace as the collar restricts any neck movement.
My consultant has instructed me not to wear my collar for more than 2 hours a day as I will develop a reliance on it & this will lead to weakening of my neck muscles & thus worsen the Torticollis. I have occasionally exceeded this time limit but paid the price by suffering incredible back pain and having the skin rubbed off my chin by the friction of my neck twisting against the collar. I have found that wearing a gel pad between my chin & the collar reduces this.
I was lucky enough to be noticed by Pauline whilst out shopping soon after my diagnosis. She has given me some valuable information and reassurance during a very distressing time in my life. I now know that there is no quick fix and no cure but I would recommend a collar of this type to any sufferer, it may look strange but “hey Presto” it works.
Should you need any more information or I can be of help in any other way, please do not hesitate to contact me at firstname.lastname@example.org
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