RNS device

Hi Rdb, Thanks so much for posting, it sounds like you all have been through a lot. It’s important that you all continue to follow-up with your son’s healthcare team to express your concerns, as well as, any changes in behaviors, symptoms, side effects or seizure types/frequency. For additional information about RNS Therapy, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation-rns Goals and expectations for surgery will vary for each person. Goals for surgery may include freedom from seizures, fewer or no disabling seizures, stopping or reducing medications, and increasing independence. The role that family members play in the life of a person with epilepsy may change after surgery. Lean more about goals, expectations and things to review with his epilepsy team, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectations Recovering from epilepsy surgery is a journey. For additional resources & information about the recovery process, common themes for people living with epilepsy and family members during their journey through epilepsy surgery, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/recovery-and-life-after-surgeryIt is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as  important to make sure you’re taking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role.For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline

I had the RNS system implanted in June of this year.  I've actually had an increase in seizures which I think had a lot to do with the Norco (hydrocodone) they gave me for pain.  Norco can reduce the seizure threshold.  Since the implant they have done two more brain surgeries.  One was to change some wiring, and just a couple weeks ago I had an infected lead.  So it's hard for me to say just how effective RNS has been.  I read some statements that it's good to think of RNS as a treatment that retrains the brain.  No doctor has explained it to me like this but I believe that doctors know the active areas where the seizures come from, and they also know the less active areas nearby.  By putting stimulation to those less active sites when seizures occur the brain can be trained to change its pattern.  Neuroplasticity is defined as the ability of the brain to form and reorganize synaptic connections, especially in response to learning or experience or following injury.  Such healing takes time but provides more lasting benefits.Mike

Thanks Mike.  I'm sorry to hear of your troubles with the device.  We have heard also, that it takes time.  It's just very hard to watch my son's life decline in his early 20s.  I hang on to much hope that the device will really work.