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Neuropace aka RNS upcoming surgery

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

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

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/re... 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/go..., 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

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

I understand. Thank you.  I

I understand. Thank you.  I was curious about this device developed by the Neuropace biotech firm and wanted to hear first hand accounts of  real outcomes after the RNS surgery since I can't find  testimony or reviews from actual patients anywhere except from the Neuropace corporation.  I do understand each patient is different!  

How frequently did you have

How frequently did you have disabling seizures prior to the RNS? Wondering because my son has been denied insurance coverage for RNS because he hasn't had "3 disabling seizures for the past 3 months" (one of their 5 criteria - he meets the other 4). He has ~ 3 intense tonic-clonic seizures/status epilepticus episodes per year, while taking 3 AEDs. Because he has failed so many medications, his epileptologist said RNS was his best hope for seizure control.

Thank you, again, Michael!  I

Thank you, again, Michael!  I wish you all the best for your continuing recovery! 

Catherine,Prior to my RNS

Catherine,Prior to my RNS implant I was usually having just one seizure with impaired awareness every month and maybe one or two without impaired awareness.  I was desperate to quit the sixteenth medication (Zonegran)  that I was trying.  It didn't stop the seizures and the side effects (anger aggression) were unbearable.Those denials; aggravating!  Prior to surgery I received "denial" papers from my insurance saying I needed to have three disabling seizures per month.  I keep careful record of seizures on my spreadsheet at home, but couldn't prove I had that many.  My thought was that one seizure every six months is enough to prevent me from driving here in Michigan.  And one reason I cannot get a decent job is that employers and doctors won't put up with even a low threat of seizures.  So if a patient needs to have three "disabling" seizures per month to qualify for better treatment, then driving and employment rules should be changed to say something like, "once or twice a month is not serious enough to restrict..."I notified my doctors of the insurance denials.  They already received notifications and were working on appealing them.  I insurance appeals is part of their routine and they know how to do it.  Weeks later I was in the OR.What's more interesting now is that the RNS unit is able to capture and record those subtle, short (1-2 second) spells that I was never sure about.  Doctor has confirmed that I am having more seizures than I thought simply because I could never confirm that is what they were.  Those mild seizures were not in my view "disabling", but a doctor, employer, or state law sure would consider them a threat.Leave it to your son's medical team; it's their job and they have intensives to help him get the RNS treatment.Mike

I agree; I was also very

I agree; I was also very frustrated to not be able to find patient testimony except from Neuropace.  I imagine this may because it was only approved in 2013 and so there are not too many of us out here that receive treatment who were not involved in the clinical studies.  Those who were involved in clinical studies and had good results probably were contacted by Neuropace for opportunities.  The Epilepsy Foundation can provide good medical information on therapies, but it's nice to hear more.One thing I wanted to remind anyone who may be concerned about another person considering RNS or any other surgical opportunities for epilepsy treatment is they need to balance the tough three S's--seizures, side effects, surgery.  Brain surgery has that stigma as the worst possible obligation, "It's not brain surgery."  It is very risky and can have it's serious consequences.  But think of taking medication all your life and putting up with side effects that may impair judgement and feelings.  Not pleasant, but we often can't do without.  In 25-30% of us the seizures continue to happen in spite of the side effects.  That is why I view surgery as a wonderful opportunity that we didn't have too much available thirty years ago.  I don't know if your sister has this positive view about surgery, but carrying a positive attitude I'm sure helps the process, and it would be nice if close friends and family could share the understanding of the three "S's" we must weight.Thank you Jill for your efforts to understand this,Mike 

Michael,Thanks so much for

Michael,Thanks so much for your reply. Denials are indeed very frustrating!I'm not sure if my next question is appropriate or not - and don't answer if it's not - but if you can, would you mind sharing what insurance company covered your surgery? Anthem Blue Cross Blue Shield of Virginia is my son's provider. His epileptologist & neurosurgeon submitted the request for authorization, requested a review when the authorization was denied, and requested a next level review too, which also was denied. All of this occurred before my son, the policy holder, even knew there was a problem - but the doctors' appeals exhausted all of his rights to appeal within Anthem. So his last recourse is a request to the Virginia Bureau of Insurance for an external review.I'm glad the RNS is a device you have found worth doing.Thanks,Cathy

Cathy,No problem.  I am on

Cathy,No problem.  I am on Medicare and Michigan Medicaid which are combined in a program called Mi Health Link where insurance companies combine and manage the two government insurances.  So the company that I'm using to manage my insurance is Aetna.  Aetna is the company who issued the denials on my surgery.Mike

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