Epilepsy is one of the most common neurological disorders with a wide range of symptoms. It causes seizures of varying intensity, duration and frequency. While some people can carry on with their daily lives with minor interruptions, for some, it is debilitating. The cortical stimulator machine is used for detecting which parts of the brain are causing epileptic seizures and to see if it is possible to operate on those parts and potentially set the patients free of this life-altering condition. Unfortunately, if sensitive parts of the brain are affected, where surgery could interfere with vital functions, it might not be the solution, but often enough, it could prove helpful. At the very least, the test might set the patients on the right course for treatment or management of the condition. KBC Zagreb had one, and then it broke down in September 2021.
As RTL reported in April 2022, when the old machine broke down, the hospital showed a willingness to get a new one but somehow “got stuck”. In the meantime, the patients have been on hold; their epileptic seizures keep coming one after the other, and the medical staff can’t even give an approximate date on the phone when they can expect an appointment. Until the device is fixed, there will be no diagnoses.
Back then, it was also stated that there were 19 patients on the waiting list for diagnostics using the device, and these patients, according to prim. Dr Novak, in the meantime, also reported for outpatient neurological check-ups at the Centre for Epilepsy.
About 40 thousand people have epilepsy in Croatia. The disease can be controlled in most cases. Still, for about 25 per cent of patients, medicine is not enough, and doctors sometimes decide to remove the parts responsible for epileptic seizures surgically.
One of such patients took to Reddit to plead for the help of the media in sharing his story, desperate that one year later, nothing has changed and that the waiting list of 19 people has not moved. Having waited for over 18 months, he suspects the list might even be longer by now. He experiences partial epileptic seizures daily, medicine alone does not help, and the only hope is the option of surgery, which can only be determined by tests on the machine in question.
And here is where the absurdity lies. Apparently, “KBC Zagreb themselves stated that the funds are available, the father of a patient offered to collect money through donations, and one even allegedly offered to buy a new machine and donate it to KBC, to which he was told that it could not be done that way”. The patients are left wondering and guessing why the delay is happening. Was it Covid setting it all back, maybe private interest that is not being met, something else? Who knows.
The very least we can do is talk about it, share the desperate calls for help, ask those in charge to acknowledge the problem, and maybe even start working on it. Wouldn’t that be a wonder?
If you are one of the patients, their family or friends and would like to share your story; or are in a position to help, advise or direct the patients who still need help, please contact us.
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