I had surgery to insert a NeuroPace on March 19. I was released from the hospital on March 21. March 24, I was admitted to the hospital again because of severe pressure in my head.
The doctors removed 50CCs of fluid the first time, 30CCs the second time and were preparing to do a third procedure when the surgeon looked at the area and decided there was not enough fluid to justify draining the area again as the swelling had come down substantially. I was released and sent home with steroids… read more
Hi @A MyEpilepsyTeam Member (hmm, not sure how to do that thing)
Yes, it was a routine upgrade (1.0 to 2.0!) This new device has an 8 year battery, twice the original. She got 3.5 years from the first. 2.0 has a lot more memory, so events shouldn't get written over so much. We lost a lot of sz data due to stuff getting overwritten - we only know this because we still kept a written sz log for the first couple years.
Our only gripe with Neuropace is that we don't have access to the data. It's very annoying that we're locked out of it and can only see what our Neurologist brings up when he logs in. I think patient data should be accessible to the patient! I wrote to them but they were dismissive. Grrr!
The device has made a huge difference for my daughter - from multiple sz a day to just a handful, and most of them no loss of consciousness. Unfortunately, she still has tonic clonic sz periodically and with no warning, so that makes life hard for her, especially work life.
I hope you get great control from the RNS.
Cheers!
Hi, this is likely too late to be of use, but my daughter had exactly what you describe. It was very disconcerting and remained for many weeks, but it did eventually subside and now has completely disappeared. BTW, she just had surgery to upgrade the Neuropace RNS and did not have the swelling this time around. Hope it's all healed for you, too!
@A MyEpilepsyTeam Member I’m not the only one then!.....I’m literally jumping through the hoops with NeuroPace trying to gain access to the data.
I have kept a log of what I do all day since July of 2018. Whenever my nurse practitioner or doctor ask me if I remember what I’m doing on such date and time, I pull up my log and tell them.
I was given a copy of the spike data (7 or 8 days worth) which is what I’m primarily interested in.
I was going through records I received from Kaiser yesterday. The records did not include what the doctor sees.
I am going to Kaisers records retention today to explain to them that if my doctor can access it, I should be able to access it.
If Kaiser will not give me access to those records, I will be filing a HIPPA action.
I would love to talk more about this. Trying to get out the door but will keep you updated.
@A MyEpilepsyTeam Member I’m happy to hear that she didn’t experience it again when they upgraded the RNS. Was the upgrade to replace the battery or was there another reason for the upgrade? I ask only because I like to keep up on what others are experiencing should There be something I need to talk with my epileptologist about.
Hope you and your daughter are doing well.
I haven't experienced anything like that