Epilepsy and VNS Therapy

Refractory Epilepsy simply means that seizures (one or more)continue to occur although the patient is being treated with more than two antiepileptic drug (AED) during an 18 month period.

An option for refractory patients is Vagus Nerve Stimulation therapy (VNS).  This is a simple device that is placed in a pocket of tissue in the chest.  A wire leading from it to the left Vagus nerve in the neck is then placed and it sends an electrical impulse to the brain to "reset" it.  It functions similar to a  pacemaker. VNS Therapy is not a drug and does not interact with other medications. The VNS sends periodic stimulations to the brain which help to prevent sychronus neuron firings that cause seizures. Treatment is delivered at regular intervals all day, by settings programmed into the device by your epileptologist. 

Our Caleb had a VNS implanted in May of 2008.  While his response was not as dramatic as we had hoped in stopping his Tonic seizures, he did have his Myoclonic seizure numbers to go from 300+ daily, to around 100 daily.  That in itself was a blessing.

A magnet is worn by a caregiver or by the patient that is able to be placed over the VNS device when a breakthrough seizure occurs.  This "wand" is capable of delivering an elevated stimulation to the brain to try to interrupt the seizure.

I can remember at first making sure and timing every time the VNS would send a stimulation, but eventually Caleb's settings were advanced so that it was "on" more than it was "off".   The most dramatic thing we saw was during one Tonic seizure after he'd first started VNS therapy, while placing the magnet over the device- his seizure stopped.  Although this did not happen regularly for him, even being able to stop one large seizure was a glimmer of hope for improvement.

VNS Therapy should be viewed by the family/patient as a medication.  Although it has no typical side effects that medications can have, it is a treatment that has potential benefit.  Many are concerned that it involves surgery, but I can attest that it is minimally invasive. 

Over 60,000 patients have begun VNS Therapy.  Those who benefit from VNS Therapy can achieve seizure reduction and in some cases eliminate seizures completely.  The positive effects of VNS Therapy actually improve over time, sometimes taking a few months to a year or two to reach optimum performance levels.  Medications may be able to be weaned as a result of positive VNS Therapy.

Many anxieties exist with any surgery.  However, when a patient is refractory, VNS Therapy should be carefully considered.  For more information on VNS Therapy click here :  Cyberonics

Thinking of Caleb, and the many procedures he went through in his short life, I remember his VNS experience as one of hope.

Blessings,

Beth

Epilepsy Awareness

Talking about Epilepsy is easy for me to do.  As a parent of a child who suffered with intractable epilepsy, I wanted anyone who came into contact with our Caleb to understand his seizures.  I always talked to his classmates about seizures and autism.  And most importantly, I trained his teachers, aides, therapists, anyone who helped him through his day, about seizures. 

It is so important to share that you have Epilepsy with others.  If you are an individual with Epilepsy, creating awareness by sharing about your Epilepsy can save your life.  If you are a parent with a child who has Epilepsy, sharing their condition with teachers, administrators, coaches, is vital. 

There are so many misconceptions about Epilepsy, some people may react incorrectly.  You may need DiaStat, sublingual medication or extra medication in an emergency.  Do the people that you have daily contact with know what to do?  Many people with Epilepsy may have a seizure that stops on its' own.  Going to the hospital is most of the time not necessary.  Would those around you "overreact"?  Would they respond correctly? 

Being an advocate for yourself and teaching those around you about appropriate response to your seizures is necessary.  Don't be afraid to talk about Epilepsy.  Your local Epilepsy Foundation can advocate for you and can also educate employers, teachers, therapists, classmates and first responders on proper seizure response.  These programs are free. 

Caleb never finished his Kindergarten year of school.  He became too ill, and contracted illness that exasperated his seizures.  His last day at school, he went into Status Epilepticus (prolonged seizures) and his teacher called me.  She knew that he needed DiaStat and I told her to administer it as I drove to the school.  I had trained her at the beginning of the school year, and she knew just what to do.  Her being able to do that allowed his seizure to slow.  It was a blessing to have trained staff who cared so much about our sweet Caleb. 

Knowledge corrects improper stigmas about Epilepsy.  Knowledge allows proper response.  Knowledge creates compassion.  Teach others about Epilepsy, or ask for a free presentation from your local Epilepsy Foundation for your support team. 

To truly be "aware" of Epilepsy, educating others is important.  If you don't know proper response for Seizures- see the Seizure First Aid blog entry on the right. 

If you or a loved one has Epilepsy - make those around you Aware.