VNS or Vagus Nerve Stimulation is a treatment for epilepsy.  It was recently suggested to us by Lizzie’s neurosurgeon, and is something we are considering trying.  With this treatment, a small device, (like a pace maker) is implanted into the chest and has wires that wrap around the vagus nerve; a nerve in the neck that goes into the brain.  With stimulation from the device, seizures either stop, or can be slowed down.  Some people actually report no seizures or a significant reduction in the occurrence of seizures.  The device can work on its own, or it can be activated by a magnet swiped over the chest at the onset of the seizure.

If medications continue to not work for Lizzie this may be an option, but it does scare me.  This is a serious decision, as it is surgically inserted and gives shocks to the nerve to stop seizures.  I am nervous about the magnetic factor of the VNS, as Lizzie’s shunt is also controlled by magnets.  I read online that there was a study conducted in which 100 trials were performed and 78 times the VNS messed up a programmable shunt’s settings.  Highly discouraging.  This means that we could get the seizures under control and go into shunt failure.  I definitely need to call the neurosurgeon on Monday to ask about this.

I also read that the VNS is not recommended for those with heart issues.  Lizzie’s heart is fine, but her aortic valve is bicuspid (having only two parts) instead of tricuspid (having 3 parts, as it should), this means that her valve works harder than most people’s to get the same job done.  Bicuspid aortic valves, as it has been explained to me, can over time become weak or stiff from the overwork.  They can fail or leak and require surgery or replacement.  Or you can live with it forever with no issue.  We have Lizzie’s monitored once a year by her cardiologist, and so far it has been fine.  My question now is can the electrical impulse from a VNS cause issues with this specific heart issue?  I guess I will also be calling our cardiologist on Monday.

It’s a lot to think about.  I really want Lizzie’s seizures under control, but what risks are worth taking to achieve that goal.  I would also like to reduce the amount of medication she takes for her seizures, as this seems to cause delays in her skills and development.  But again, what is it worth?  I definitely have to do my research on this one.  I find that the older Lizzie gets, the harder some of these decisions are getting.  She is physically stronger, and these procedures and treatments are not life or death but rather quality of life, and that makes it much harder to decide.  The question of risk versus benefit becomes much harder when both sides are close to equal.  Those earlier surgeries were easy to decide because it was surgery or she could die.  Easy decision.  But this one, implant the device – risk the shunt or heart, or stay on meds that don’t work 100% and risk holding back her abilities and having seizures.  Although we could implant the device, and still have seizures, if it doesn’t work for Lizzie.  Tough call.

We will be taking our time with this one.

Advertisements