Neuropace aka RNS upcoming surgery

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 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 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