Letter three: August 2021
Hi All,
I hope you’re having a great summer! I’ve been hesitant to send out an update before now because honestly, it’s been a bit rough going, and besides which I wanted to wait until I had something of note to share. The recovery from the actual surgery was the first month, but then we were confronted with the next hurdle, getting the device turned on.
Little recap: In the hospital before I was discharged my RN came in and went over all of the basics of the new tech in my head and showed me how to use it. Essentially holding something that looks like a bar code scanner to the side of my head where the device is, and download that information into a computer dedicated for this one purpose.
After two plus months of keeping careful notes about my seizure activity, downloading all of the data from my noggin and sending both to the team, I was still no closer to understanding what was needed to be able to turn the device on. But when they still weren’t getting enough activity, they lowered my dose of the most recent medication, and voila! I had a Grand Mal. The good news is that, although I had it at the hairdressers, my hairdresser had already finished the haircut so at least my hair looks good 🙃.
Of course, that was the week my docs were on vacation, and the nurses covering for my RN said they had to wait until she came back before anything could be done. Since it hadn’t been explained to me, I had been under the mistaken impression that they could just turn the device on remotely once I had enough activity, and a Grand Mal kind of seemed like enough. So we were left in limbo, wondering what came next and trying really really hard not to lose it.
Love it or hate it, Facebook came to my rescue. I found a small Facebook group for people that have had, will have, or are contemplating getting one of the three devices available: RNS (what I have), DBS, and VNS. I posted my frustrations with the lack of information I was getting from my Doc’s, and just basically asked for anyone to share their experiences, good, bad, or ugly. Several people responded. I got a number of responses, people that described what it was like for them, that the process took time (most people didn’t get their RNS turned on for three months after the surgery, which would have been awesome to know going in), and was confusing, but every one to a person, said it was the best thing they ever did. They urged me to have patience because it will work.
I was still legitimately getting increasingly upset by the lack of communication though, so when my RN and Doctor came back from vacation I sent a polite and respectful, but strongly worded, email voicing my frustrations. Surprisingly, that resulted in an incredibly compassionate response from my RN, and a phone call from the Doctor, apologizing because I had fallen through the cracks. Apparently, the Neurosurgeons thought that my Neurologists had explained things to me, and my Neuros thought that my Surgeons had, so nobody had really explained what next steps were, and what I could expect. We didn’t know what to expect from the appointment, but it seemed like essentially they’d just discuss all of the things I already found out via my fb group, but to our surprise they turned it on!! Turns out they can't turn it on if I’m not on the premesis as per FDA regulations. We’re starting at a low setting in order to keep trying to ferret out the smaller seizures, so that they can figure out how to target them with the RNS. The Grand Mal’s are clear and obvious, so that’s not a problem. The plan from here on out is that I keep doing everything I was, send them all of the data, and every two months or so we’ll go in to Boston to discuss and adjust the settings until it’s as effective as possible.
Phew! I don’t know about you, but after all of that I think I need a drink. Oh wait, I can’t! 🤣
Don’t feel too bad for me, I have legit medicinal marijuanna.
Love to you all!
Em