My son has been suffering from seizures for 2 years. No meds seem to work. He was recently diagnosed with a new gene mutation called DALGA. Its very new to the point they dont know much about it. It is the cause of my sons seizures.
Now, they are talking about VNS therapy.
If anyone has it i would like to know more about your experience or if you know someone with it. Anything will be helpful. Please & thank you!
You could ask if you are a canidate for RNS (responsive nuerostimulator). It stimulates without needed a magnet to trigger it. It is based off of eeg monitoring from electrodes in your brain. I have one and it has helped a lot!
They want me to have VNS because no medication works for me. One question o would like to ask of anyone can help is if I was on my own and had a seizure want would happen with the VNS. I was told that if there was no one was there to put magnet over they said the VNS would kick in automatically. Can anyone help with this please
Sorry to hear about your son I am on a waiting list 4 VNS therapy device 2 b fitted at Kings Collage Hospital London the device sits just under the skin there is a thin wire that connects to a nerve from the brain I have never heard of this device been fitted to some so young I am 58 years old and have had Epilepsy 4 about 55 years and still do many thanks Alan 🙏