Dystonia, a condition that causes excessive muscle contractions in the body, is not well-known by the general public. Many people have never even heard of this disease, despite it being more common than believed. Some patients spend years searching for the cause of their spasms. One of these patients is Ayşe Özhan Kocakabak, a 62-year-old pharmacist from Manisa. Ayşe experienced spasms in her left leg and abdomen five years ago, which gradually intensified over time. She visited numerous doctors but remained unaware of her condition for years. The severe pain turned her life into a nightmare. She initially struggled to carry out daily tasks and eventually had to quit her profession. Through her research, she came across Medipol University Parkinson’s Disease and Movement Disorders Center (PARMER) and met with the neurosurgeon, Assoc. Ptof. Dr. Ali Zırh. After undergoing deep brain stimulation (DBS) treatment, Kocakabak’s involuntary spasms came to an end.
Dr. Zırh explains that dystonia is a condition characterized by excessive muscle contractions in a specific part or throughout the body. He states, “In this disease, there are involuntary movements, and patients try to carry on their lives with extraordinary spasms. The disease can affect the face, neck, vocal cords, arms, legs, or have a widespread distribution. The severity of muscle contractions in dystonia patients varies from individual to individual. While some patients can live independently, others may require assistance in their daily lives.”
“I had no idea what kind of illness dystonia was”
Ayşe Özhan Kocakabak described her illness process with the following words: “This illness manifested itself with pain in the urinary tract five years ago. At first, I thought it was just kidney stones. When I went to the doctor, they diagnosed it as interstitial cystitis and performed hyaluronic acid treatment. The discomfort didn’t go away, so they recommended me to see a gynecologist as well. The severe pains occurred once a week, sometimes every fifteen days, but they were so intense that no painkiller had any effect. Only morphine could relieve my pain. Then I started receiving treatment in the gynecology department for a year. I even suggested getting my uterus removed. I went to many doctors in Ankara, Izmir, and Istanbul, but they said nothing was wrong with me. These investigations lasted for years, yet I couldn’t find out what was wrong with me. Finally, I was referred to a psychologist. The psychologist I went to also directed me to neurology. I had spasms on my face, stomach, and left leg. I couldn’t cook or I would get tired while eating. I couldn’t even go to the pharmacy where I worked and eventually reached the point where I couldn’t move from one place to another even inside the house. A neurologist friend of mine told me that I had dystonia. I didn’t know what kind of illness it was; I had never heard of it before. I tried many medications, and I received botulinum toxin injections for a year. For Deep Brain Stimulation surgery I contacted my nephew, who is a brain surgeon. He referred me to Dr. Ali Zırh. Dr. Ali told me that I was suitable for brain stimulator therapy, and thus my surgical process began. During the surgery, I had a video call with my son, who is a final year medical student in Hungary. I can say that I was born again on the day of the operation. Now I can walk, ride a bicycle, and do everything that I couldn’t do because of my illness. I hadn’t been able to read books for 2 years, but now I can read comfortably. My house was right across the pharmacy, and I couldn’t work actively for the past 2 years, but now I continue working. I never expected to feel this good with this treatment; I recommend it to everyone.”
Excessive muscle contractions in Dystonia are treated with Deep Brain Stimulation
Neurosurgeon Assoc. Prof. Dr. Ali Zırh who successfully performs Deep Brain Stimulation surgery At Medipol University Parkinson’s Disease and Movement Disorders Center (PARMER), stated: “As with all movement disorders, the initial treatment for dystonia is medication, and we try to cure patients with medication. In cases where medical treatment is insufficient, the application of Botulinum toxin (Botox) therapy can be attempted. Since the effect of Botox wears off after a few months, repeated treatment is necessary. In cases where medication and Botox therapy are inadequate, and severe contractions increase and negatively affect daily life, Deep Brain Stimulation treatment can provide significant benefits in patients with dystonia. When we provide electrical current to specific regions of the brain using brain stimulation, we can reduce or correct excessive contractions in dystonia. Dystonia patients generally respond to the electrical current given over a longer period of time compared to Parkinson’s patients. Therefore, following the surgery, with the adjustments made to the stimulator settings within a period of several weeks, we aim to bring patients closer to their previous healthy days.”
Deep Brain Stimulators last for 20-25 years
Dr. Zırh, who also touched upon the lifespan of DBS neurostimulators used in dystonia patients, continued as follows: “DBS neurostimulators used to be non-rechargeable, they had a limited lifespan. For Parkinson’s patients, this duration was around 4 to 6 years, depending on the electrical current provided. However, for dystonia patients, since we needed to administer a higher dose of electrical current, the lifespan of the neurostimulators could decrease to 2-3 years. At the end of this period, a half-hour operation was required to replace the neurostimulator. Nowadays, we are using enternasyonal rechargeable neurostimulators. These neurostimulators claimed to have a lifespan of approximately 20-25 years and need to be charged weekly or every two weeks according to the patient’s needs and preferences. Thus, the patient does not require a neurostimulator replacement operation for a long period of time.”