rns misconception
Thanks for the update Bernard. But to answer your question, yes the battery is placed inside the chip in the brain. That's why I'm not so enthusiastic about getting the Neuro Pace because they'll have to slice my head open every 2 years.
I came across this website and forum board largely by accident, but as a patient in the RNS investigational trial, I have to correct some erroneous information being dicussed.
The battery is located in the stimulator, which is implanted on the surface of the skull, NOT the brain. The only contact between the RNS and the brain comes from the electrodes which deliver stimulation.
While it is true the battery life is proving to be shorter than initally expected, the procedure for replacing it is not neurosurgery. A small incision is made in the scalp, the skin pulled back and the RNS exposed on the skull, the battery is snapped out and a new one placed in.
The procedure never involves removing any of the skull to expose the surace of the brain. Even changing lead points to the electrodes can be done without exposing the surface of the brain.
The description of being "sliced open" is correct to the extent that a slice is made in your scalp, then quickly closed after the battery change. The skull and brain are left alone during the battery repalcement.
The only neurosurgery involved is in the initial implant surgery, and if you have had a craniotomy before, as many RNS patients have, no new holes are drilled in the bone. Particularly compared to having a third of your skull removed for ten days during grid placement surgery, the implant surgery is a breeze. My first question in recovery was why didn't my head hurt.
It is also possible with advances in neuroimaging technology, particularly MRIs, (5t or more), that the epilepsy center you are working with will never have to place intracranial strips or grids.
And consider this- the more battery power you are using, the more stimulation the seizure focus is receiving, at least in theory leading to greater seizure control.
If you had the RNS implanted and received no stimulation, it would be pointless. If the battery wasn't running down, the device wouldn't help. Also, to get really into the weeds of it, solid state batteries which are MRI compatible are being developed specifically for neurostimulation which should dramtically increase battery life.
Any person signing up for a clinical trial of an investigatonal medical device which has not yet recieved final FDA approval is, to a certain extent, a guinea pig. The same would be true if you agreed to try a new AED.
Patients in the study are asked not to discuss the post open-label (five months after implant surgery and beyond) results precisely because this is a clinical trial, and individual definitions of success can vary dramatically.
A good place to start for information is to ask a neurologist or clinical study coordinator for a copy of the consent form, which is both long and imposing. But it also explains, in minute detail, what will be expected of you as a participant in the study. Anecdotal accounts in the media are far less helpfull.
The neuropschyc team we work with calls the Neuropace quality of life questionnaires the "don't worry, be happy" surveys. Don't assume receiving neurostimulation will have a dramtic impact on your life.
And there can be daily frustration with the RNS. Being a RNS patient requires an enormous time commitment for the forseeable future . You will be tethered to the study center where the impalnt surgery took place, and improvement may seem to happen at a glacial place.
True. there is the potential for infection when a cut is made in the hair and skin, but the idea of a battery replacement procedure being the only reason for not pursuing the potential value of responsive neurstimulation is unfortunate.
It is also unfortunate that a clinical trial coordinator would suggest a percentage of success for the RNS. They are not told which patient initially has the device delivering stimulation or not, end even the treating neurologist doesn't have this information. To try and quantify success at this stage is irresponsible.