November 5, 2020

My Dystonia Patient Story


My name is Emilie and this is the story of my life with dystonia. I’m not quite sure when the first symptoms started to appear, but approximately around 9-10 years of age. I first had pain in my left arm and it felt a little weak. As a child, I remember that I just stopped using my arm. I visited several doctors and went for various examinations without anyone finding an answer. Eventually I became more and more tired and could not perform at school/leisure activities as expected. Around the age of 13, my neck started to become crooked and it became visible to people around me that something was physically wrong. Or could it be psychological? The road from there to diagnosis would still take an additional 4 years, with various medical examinations, X-rays, psychologist appointments and several physiotherapists. No one knew what this could be.

When I first started going for psychomotor treatment I was asked if I had been to a neurologist? I hadn’t.  Finally I entered the office of the neurologist. By then I was a tired girl at the age of 17, with a very crooked and spasmodic neck, and incipient scoliosis.  As soon as we got into the neurologist’s office he turned to me and said; “You have dystonia”.

I got the diagnosis spasmodic torticollis. I cried in relief that I finally received an answer. At the same moment I was informed that there is unfortunately not much treatment to offer.

I started with botulinum toxin injections every 3 months. Eventually the disease developed even further, my neck, back and arm got worse, and I also experienced spasms in my face and pain in my legs.

I was around 19 years old when I was diagnosed with generalised dystonia. The botulinum toxin injections worked poorly and I was afraid of the future without any other treatment available.

At the same time as I got the new diagnosis, there was talk of a new revolutionary treatment. DBS (deep brain stimulation) surgery. And I was eventually asked if this is something I would want to consider?

I had (almost) no doubts, and my answer was yes! There was a waiting list and it was going to take a while.

The following year I met my husband, the year I turned 21. It would be another year before the surgery was performed. In 2006, after I had turned 22, the day had finally come and I had DBS surgery at St. Olav’s hospital in Trondheim. The operation took approximately 12 hours and I woke up to the message that everything went exactly according to plan. After this, we spent a whole year in and out of the hospital to find the right settings for me and my dystonia. Luckily there were two of us in this together, me and my husband, and he went with me to every hospital appointment. We finally found settings that make me have a very good everyday life despite the dystonia and to function as well as possible. I have been very lucky and had a very good result from the DBS surgery. We’ve been blessed with 3 healthy wonderful children, all 3 have been born after the DBS operation and have shared space in the womb with the battery. It has gone completely smoothly. In the beginning, I had to change the battery relatively often, about once a year for the first few years. But in 2014 I had a rechargeable battery inserted and I still have this. Today, in addition, I occasionally have physiotherapy treatment when I feel the need and this helps my sore and tight muscles to loosen up.

It’s not a pain free life, but still, I have a good and happy life 😊 .

Emilie Elnes, Norway