Community Forum Archive

I have not had Deep Brain Stimulation (DBS), but I've tried Vagus Nerve Stimulation for five years and I've been using Responsive Nerve Stimulation for more than six month.  People ask me if it is helping as if they expect it to bring control in just a few months.  It may not be worth all the surgeries and the daily downloading that I have to do.  I imagine DBS is a long term treatment that has the potential to change seizure over time, but there is one thing that many people don't consider when facing the options in treatment we do--answers.I'm sure your son has not tried every medication out there, but I'm sure he has tried enough to qualify as having "refractory seizures" (seizures that are not and probably will never be controlled by meds).  When seizures continue to happen you wonder if maybe things could be better if... try one more medication... increase the dose, surgery...?  It's too bad that the seizures are not controlled with meds, but hopefully it is comforting that your son doesn't need to be hopeful that the "grass may be greener" if he tried one more pill.  Now it is time to consider and be hopeful about alternative treatments.It's good that you are exploring information on DBS and I hope you get answers from other users.  I hope I don't add confusion by asking if your son has also discussed and compared other treatment options like VNS, RNS, and resection along with DBS with the doctor?  These treatments have no guarantees, but right now your son is faced with weighing seizures, side effects, and surgeries.  How does your son feel about the DBS option and what it would involve?  Mike

Hi, Thank you for posting and we understand your concerns., It is important to remember when preparing for epilepsy surgery that every individual experience and path is different, and efficacy and side effects varies for each individual. Your son’s healthcare team will review what options are possible for him and will help guide you all through the proper evaluation and testing, prior to making a decision about Deep Brain Stimulation.Working together with his epilepsy team is the key to understanding his epilepsy and the best treatment options for him. It’s also important that you express any concerns you all may have and talk with his doctors about his personal goals and expectations for DBS: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsTo learn more about DBS, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/deep-brain-stimulation-dbsIt’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline   Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.