Neuropace aka RNS upcoming surgery

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My adult sister has an AVM deep in her left temporal lobe so removal surgery is too risky - if the surgery is not successful, she may lose ability to speak or understand speech! She is going to have neuropace implanted in a few weeks. I have been reading here that some people experienced MORE seizures, one person had an infected lead, most have to get the implant "adjusted" every so often? For those who have the RNS surgery - what do you think? 1. How long have you had it? 2. Are you better off, same or worse? 3. Did you have to remove it? Thank you so much in advance for your comments!

Comments

Hi Concerned Sister,Ifor

Submitted by birdman on Fri, 2020-01-17 - 20:35

Hi Concerned Sister,Ifor every patient. t sounds like you may have been reading some of my story, but to be sure I'll go over it again. I had the RNS unit implant just seven months ago. It's hard to measure if I'm better or worse off than before. If your measure is just seizure frequency then it seems like RNS treatment is doing little or no good. It seems like I have had a small increase in seizure frequency, but these seizures are happening without impaired awareness. Just previous to my surgery I was having seizures with impaired awareness pretty much once every month. Now I've been having other smaller seizures which I didn't notice very often before. With the RNS treatment patients are encouraged to use the magnet to mark sensations which even appear to be seizures. Maybe I've become more sensitive to these smaller seizures which I had learned to ignore over the years. Or, maybe these smaller events are the result of seizures which would have left me with impaired awareness in the past but now are being better controlled. I is much too early for me to make this measurement. I do go in for regular visits with my epileptologist where he does do some adjustments on the unit. I've had four visits with the doctor since my implantation. The first was just to review what RNS was recording in two weeks since my operation. What was interesting at that visit was that doctor revealed I had seizures where I did not use the magnet. Days after surgery I was taking pain pills (hydrocodone) and sleeping things off. When I woke up from the naps I was a bit confused, but I figured it was from the meds for pain. With the RNS recordings we were able to make a strong assumption that those groggy states were the result of seizures. I think it was turned on to stimulate and treat at the second visit a couple months after surgery (or maybe it was on to stimulate at the first visit). At each visit now the doctor hands me a "wand" to place over my implanted unit. We do a reading and he is able to make subtle adjustments to many different settings. It's all based on how well the seizures have been controlled. This is not a pacemaker that can be implanted and left to be; each unit must be programmed to perform its best for every patient.My third visit and adjustment came August, and then in September I noticed a small blister on one of my incisions. I snapped a picture and emailed that to my surgeon. Doctor had me in for a look, put on antibiotics, and three weeks later I was in for another operation to remove only the infected lead in my right temporal lobe. That lead was not replaced since it has been noticed that my seizures have been coming from the left temporal lobe only even though they recorded seizures on the right on an EEG in February. The weeks treating the infected lead were not pleasant but since then RNS has revealed some interesting information about my seizures. Mild seizures that I was sure were coming from the right have been recorded on my left. Using the magnet does not alter how the RNS unit treats, but it provides valuable information to patient and doctor about what's going on.RNS is a long term treatment that I'm thankful I am in,Mike

Hi Concerned Sister,Ifor every patient.  t sounds like you may have been reading some of my story, but to be sure I'll go over it again.  I had the RNS unit implant just seven months ago.  It's hard to measure if I'm better or worse off than before.  If your measure is just seizure frequency then it seems like RNS treatment is doing little or no good.  It seems like I have had a small increase in seizure frequency, but these seizures are happening without impaired awareness.  Just previous to my surgery I was having seizures with impaired awareness pretty much once every month.  Now I've been having other smaller seizures which I didn't notice very often before.  With the RNS treatment patients are encouraged to use the magnet to mark sensations which even appear to be seizures.  Maybe I've become more sensitive to these smaller seizures which I had learned to ignore over the years. Or, maybe these smaller events are the result of seizures which would have left me with impaired awareness in the past but now are being better controlled.  I is much too early for me to make this measurement.  I do go in for regular visits with my epileptologist where he does do some adjustments on the unit.  I've had four visits with the doctor since my implantation.  The first was just to review what RNS was recording in two weeks since my operation.  What was interesting at that visit was that doctor revealed I had seizures where I did not use the magnet.  Days after surgery I was taking pain pills (hydrocodone) and sleeping things off.  When I woke up from the naps I was a bit confused, but I figured it was from the meds for pain.  With the RNS recordings we were able to make a strong assumption that those groggy states were the result of seizures.  I think it was turned on to stimulate and treat at the second visit a couple months after surgery (or maybe it was on to stimulate at the first visit).  At each visit now the doctor hands me a "wand" to place over my implanted unit.  We do a reading and he is able to make subtle adjustments to many different settings.  It's all based on how well the seizures have been controlled.  This is not a pacemaker that can be implanted and left to be; each unit must be programmed to perform its best for every patient.My third visit and adjustment came August, and then in September I noticed a small blister on one of my incisions.  I snapped a picture and emailed that to my surgeon.  Doctor had me in for a look, put on antibiotics, and three weeks later I was in for another operation to remove only the infected lead in my right temporal lobe.  That lead was not replaced since it has been noticed that my seizures have been coming from the left temporal lobe only even though they recorded seizures on the right on an EEG in February.  The weeks treating the infected lead were not pleasant but since then RNS has revealed some interesting information about my seizures.  Mild seizures that I was sure were coming from the right have been recorded on my left.  Using the magnet does not alter how the RNS unit treats, but it provides valuable information to patient and doctor about what's going on.RNS is a long term treatment that I'm thankful I am in,Mike

Hi Concerned Sister,Ifor every patient. t sounds like you may have been reading some of my story, but to be sure I'll go over it again. I had the RNS unit implant just seven months ago. It's hard to measure if I'm better or worse off than before. If your measure is just seizure frequency then it seems like RNS treatment is doing little or no good. It seems like I have had a small increase in seizure frequency, but these seizures are happening without impaired awareness. Just previous to my surgery I was having seizures with impaired awareness pretty much once every month. Now I've been having other smaller seizures which I didn't notice very often before. With the RNS treatment patients are encouraged to use the magnet to mark sensations which even appear to be seizures. Maybe I've become more sensitive to these smaller seizures which I had learned to ignore over the years. Or, maybe these smaller events are the result of seizures which would have left me with impaired awareness in the past but now are being better controlled. I is much too early for me to make this measurement. I do go in for regular visits with my epileptologist where he does do some adjustments on the unit. I've had four visits with the doctor since my implantation. The first was just to review what RNS was recording in two weeks since my operation. What was interesting at that visit was that doctor revealed I had seizures where I did not use the magnet. Days after surgery I was taking pain pills (hydrocodone) and sleeping things off. When I woke up from the naps I was a bit confused, but I figured it was from the meds for pain. With the RNS recordings we were able to make a strong assumption that those groggy states were the result of seizures. I think it was turned on to stimulate and treat at the second visit a couple months after surgery (or maybe it was on to stimulate at the first visit). At each visit now the doctor hands me a "wand" to place over my implanted unit. We do a reading and he is able to make subtle adjustments to many different settings. It's all based on how well the seizures have been controlled. This is not a pacemaker that can be implanted and left to be; each unit must be programmed to perform its best for every patient.My third visit and adjustment came August, and then in September I noticed a small blister on one of my incisions. I snapped a picture and emailed that to my surgeon. Doctor had me in for a look, put on antibiotics, and three weeks later I was in for another operation to remove only the infected lead in my right temporal lobe. That lead was not replaced since it has been noticed that my seizures have been coming from the left temporal lobe only even though they recorded seizures on the right on an EEG in February. The weeks treating the infected lead were not pleasant but since then RNS has revealed some interesting information about my seizures. Mild seizures that I was sure were coming from the right have been recorded on my left. Using the magnet does not alter how the RNS unit treats, but it provides valuable information to patient and doctor about what's going on.RNS is a long term treatment that I'm thankful I am in,Mike

Hi, Thank you for posting and

Submitted by Anonymous on Tue, 2020-01-21 - 06:00

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. As Michael shared with his experience with the RNS device, the efficacy and side effects varies for each individual. Your sister’s healthcare team will review what options are possible for her and will help guide you all through the proper evaluation and testing, prior to making a decision about surgery. Working together with her epilepsy team is the key to understanding her epilepsy and the best treatment options for her. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery, here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryTo learn more about the RNS device please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation-rns It’s also important that you and your sister expresses any concerns you both may have and talk with her doctors about her personal goals and expectations for epilepsy surgery. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources.. epilepsy.com/helplineOr contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Thank you for your generous

Submitted by ConcernedSister_5e22264cef15c on Tue, 2020-01-21 - 13:39

Thank you for your generous and detailed response! If I may ask, after the surgery, were you able to taper off your medications?