Tuesday is the Big Day!

Tomorrow, October 17, is the surgery for the final placement of Jenelle's RNS Device.  In pre-op meetings with the doctor, they reitterated that they were confident with the data they got from the SEEG that they will permanently place the probes in the best place for feedback and treatment of Jenelle's seizures (that is the central medium area of the thalamus.)

Because I've been talking and posting so much about the RNS, I've had quite a few ads on my personal social media pages about the system.  This website from Neuropace is well written and explains things easily.  

After the surgery tomorrow, Jenelle will remain in the hospital for a few days for pain management and to make sure her incision is healing.  We hope to be home by Friday.   The next step is that Dr. Steenari will "monitor" the information she gets from device.  I'll know more when we meet with the representative for Neuropace, but its likely we will be given a lap top, or similar device to download weekly readings and send to Dr. Steenari.  After some time, we will meet again for Dr. Steenari to program and turn on the RNS.  The usual time will take 3 months of data, but Dr. Steenari believes with the frequency of Jenelle's daily seizures, it may only take a few weeks to get enough data.  The benefits of the RNS include providing immediate data to Jenelle's doctor about where and how her seizures are presenting, how frequently, and how she responds.  With that information, the doctor will determine how to program the settings for the electric stimulation used to stop her seizures.

We hope this new technology will help Jenelle have fewer seizures a day, without the side effects of medication.  Also, the RNS helps to lower to rate of SUDEP (Sudden Unexpected Death of Someone With Epilepsy.)   The mortality rate of patients with Lennox Gastaut Syndrome is 5%, with LGS patients 24% more likely to die of SUDEP.  Right now, Jenelle is averaging 5 or more seizures a day, with 1 of those daily seizures being tonic clonic (grand mal) usually lasting 2 minutes or more.

We are very hopeful, and very anxious that the surgery goes well tomorrow.  Please keep us in your thoughts and prayer and I will keep you posted!