Diagnosis to DBS (A Brief History)

Like many of my fellow patients, my dystonia came out of nowhere.  Over the course of a month my head went from its normal position to the twisted dystonic posture of 90 degrees to the left.  I was lucky enough (as unfortunately there are many people who go years before getting a proper diagnosis) to be immediately diagnosed with cervical dystonia.  

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I started off with Xeomin injections.  While the neurotoxin therapy did help alleviate some pain and moderately lessen the dystonic postures, I still experienced a great deal of functional impairment.  Long story short, my doctors kept increasing the Xeomin doses until I maxed out on 500 units (which I was told is one of the highest doses on record for CD).  We then tried using Dysport, which provided a similar benefit as Xeomin.  During this time, I also tried extensive physical therapy and several oral medications (artane, valium, sinemet, baclofen, tetrabenazine) all to no avail.

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After roughy three years of treatment, I realized, that if I wanted to further reduce my symptoms, I needed to try DBS.   

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One of my doctors put it best when she said, "There is no cure for dystonia. DBS may help lessen the degree of dystonic posture and make it easier to bring your head back into a true neutral position. But make no mistake about it, your dystonia will always be present, and it will not go away."  In my opinion she could not possibly have put it any better.  My experience lines up exactly with what she said.

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While DBS has significantly lessened the force of the dystonic pulling or twisting, my head still constantly wants to move back to the the dystonic posture. Also I still receive neurotoxin injections for complimentary therapy. 

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That all being said, I firmly believe that undergoing DBS was the greatest decision of my life! And like anybody else whom I have ever spoken to about who has had DBS, my only regret is that I did not have it done sooner!  

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