Tamara’s story

It all started in February of 2006. My first symptoms appeared when I was very tired. I remember that I went to get something to drink. When I returned and lay down to rest I felt a muscle contraction in my face, as if one tip of my mouth was drooping. I thought it was due to stress and that it would pass away. But it didn’t. I remember that I showed the signs to my mom. I don’t know why but she immediately knew it had to be a neurological disorder.

So I started visiting neurologists

who made different diagnoses. Now I realize that in my case dystonia was recognised quite early. It was diagnosed after 2 months from the occurrence of the initial symptoms. At the time I learned to flex other muscles in a way which stopped the contractions and I still can do it. I should be grateful to my neurologist Doctor Budrewicz who identified the disease so quickly. He prescribed botulinum toxin to me but I hesitated to take it for the next two months. In the meantime I also consulted a psychiatrist but it did not help. When I finally agreed to take the toxin I did not experience any improvement. After the second dose, in addition to contractions in my face, my neck began to twist. I received a higher dose of botulinum toxin through EMG guided injections but they did not work either. The first effects came only after the administration of two vials. Unfortunately, due to limited financial resources, the clinic could not offer botulinum injections at the required frequency. Today, I  still don’t know whether it was good or bad for me and whether my condition aggravated because of that.

After 8 years of the disease onset,

my dystonia progressed considerably.  I had strong symptoms in the neck, shoulder jerking and contractions of facial muscles. I was not able to continue working and I had to go on a medical leave. Toxin injections were less and less effective. Each injection worked only for a month I  felt I could not cope anymore. My doctor was helpless. Administration of botulin had become a real challenge for the medical staff. Three people had to hold my head back to make the injection and I was not able to move my head in any direction, even one millimetre. Walking has become very difficult. I had a two-year therapy with a psychologist and two years of trigger points therapy followed by craniosacral therapy. But none of that relieved my pain. In the meantime I developed epilepsy. Another big problem was that I did have proper support from my family which is crucial in the case of dystonia. I know that they were ashamed of me a lot. I think that only now, after 11 years, they are beginning to understand my disease better. Finally I decided that I had no other choice.

I tried everything

and the only option left was  deep brain stimulation (DBS).  In the past, I did not even want to consider this procedure. and treated it as the very last resort. But with time I realised that I cannot give up and. I needed help because I could not  live like that any longer! I visited a neurosurgeon. Doctor Tabakow did not give me too much time to think and proceeded quickly. After two months from my first visit concerning DBS I was in the operation theatre. My determination was stronger than the fear of the invasive procedure. My surgery was very long as it lasted 8 hours and I had only regional anaesthesia. Maybe it was so long because I was the first dystonia patient in my town. Earlier the procedure was made only to treat patients with Parkinson disease and tremor.

Everything went well

In order to carry out the surgery and make the necessary examinations doctors had to administer botulinum in advance to me. Without it, the procedure could not be performed under local anaesthesia due to the severity of my dystonia. DBS has changed my life. I came back to work and learned to part of the society again. At last I did not need the toxin and my muscles were not paralysed. Unfortunately, it recently turned out that my dystonia developed further and I started experiencing muscle contractions in one foot but the symptoms have been successfully managed through stimulation. My doctors are very happy and somewhat surprised – I think – with the results. They were also concerned initially whether the stimulation would not aggravate my epilepsy but so far everything has been fine.

I would like to tell other patients to look for all possible therapeutic options, even the invasive. And don’t be afraid of DBS. You will survive the surgery and the wounds will heal quite quickly. The important thing is to strictly follow doctors’ recommendations. And the hair regrows  in no time too.  When I was making up my mind I received help from the dystonia patients’ support group in Poland. Now I am offering support to people who are considering DBS and have to make the difficult decision, by sharing my personal experience.

Best regards, Tamara

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