What to do with therapy-resistant epilepsy – Katharina’s way

Katharina is now 14 ½ years old and has been epileptic since the age of three. In the beginning, the epileptic seizures manifested themselves at long intervals and were somewhat under control with medication. However, as she grew up, the seizures became more frequent and intense. Katharina also developed therapy resistance to all the medications we had tried. During this time we went to Prof. Dr. Martha Feucht at the AKH – General Hospital of Vienna.

At the age of 9 she got a vagus nerve stimulator implanted. This helped very well with the absences and also the seizures were less intense.

February 2020 was then really violent – 105 seizures in 10 days. She could not even seize anymore due to exhaustion. As soon as the effect of the emergency medication wore off, the next seizures came.

The medication was changed again – but it didn’t help – and we got an appointment with Prof. Dr. Feucht (AKH) and a neurosurgeon. We were advised to have a callosotomy – a cutting of the cerebral bar (only the front 2/3) that connects the two hemispheres of the brain. The purpose of cutting the corpus callosum (brain bar) is to prevent seizures from spreading from one half of the brain to the other. Prof. Dr. Feucht said that this would be the last option for Katharina to get a mitigation of the seizures.
The decision for this was not easy for us, because the possible complications would have been already very drastic for Katharina.

Then the preventive examinations began – several days of monitoring (hurray she also had some seizures during the recording), physiological control, Ergo control, speech therapy and a conversation with the psychologist regarding developmental status).

In January 2022 the time had come – Katharina was operated, according to the nurses of Dr. Mc Dreamy (do you know Grace Anatomy?). The operation lasted almost 5 hours. We were surprised that Katharina had so little hair shaved off.

On the seventh day, the staples were removed. Katharina did not make a single sound during the process. The surgeon was really gentle in removing the staples.

Katharina was amazing – she recovered so quickly from the surgery, was cheerful and no physiological side effects were apparent. She only had problems eating (chewing was visibly difficult for her or she did not recognize that something was in her mouth). In the meantime, however, this works better again.

The frequency of seizures has improved massively. She is still sensitive to the weather, but we are at a maximum of 12 seizures per month. These seizures now only occur on one side of the body, or sometimes the stupid seizure “moves” to the other side of the brain and she continues to seize on this side. During the seizure, the affected side of the face and the arm twitch – the legs no longer.

She rarely needs recovery sleep afterwards. She always looks puzzled and is apparently just wondering what happened again and continues to play, eat, …

At the end of February 2023 we had the annual control.

Natascha Handler, mom of Katharina

What to do with therapy-resistant epilepsy – Katharina’s way
Scroll to top