This is a follow-up to my blog called Taking control during a long-term EEG . . . . Read on if you want to know what life is like when your child is first diagnosed with epilepsy. In my previous post I described our experience with long-term video EEG’s and sometimes you need to follow your instincts.
As I mentioned in my previous post regarding epilepsy, we finally had captured my son’s seizures on a video EEG, and the epitologist determined that the seizures were coming from the left frontal part of the brain. With this information, we hoped that it would guide the epitologist with what medications could be effectively used. They also knew that the seizures started out as Simple Partial seizures but on occasion would change to a Complex Partial Seizure.
At the time I thought we had a big win, but then I found out that numerous anti-epileptic drugs were approved with indications for simple partial seizures, but no specific drug recommended. You can imagine my disappointment. We were back in the trial and error process with the medications.
For the next three years my son was prescribed numerous antiepileptic drugs. There was this constant process of weaning him off one drug and slowly building up another. Some of the drugs included: Topomax, Lamictal, Keppra, and Tegretol. The drugs were scary because of the potential side effects, which is the reason they are very careful about putting you on a medication. Sometimes when we were choosing which medication to try next, the deciding factor was to choose the medication with the least dangerous possible side effect.
During that three years there was a nine month stretch of time that my son was on no medications. It was my decision because none of the medications were working. As I may have mentioned before, I really didn’t like using all of these medications. Since the medications weren’t helping I decided we needed to take a break from them. It was also a chance to see if the medications were actually causing some of the seizures. Over that nine months nothing happened. He continued to have seizures. They were no worse or no better without medication. After the nine months our neurologist made one more suggestion and we went back on a anti-epileptic seizure medication.
As you can guess this drug did not have any positive effect and my son’s epilepsy was classified as irretractable epilepsy, also called refactory epilepsy. Irretractable epilepsy is defined as having seizures that do not respond to medications. Thirty percent of people with epilepsy have these kinds of seizures.
At that point the neurologist suggested that we consider getting an implanted vagal nerve stimulator (VNS). The VNS was approved by the FDA in 1997 in combination with seizure medication for partial epilepsy in adults and adolescents. The Epilepsy Foundation provides the following information about the VNS:
Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.
The vagus nerve is part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate. The vagus nerve passes through the neck as it travels between the chest and abdomen and the lower part of the brain.
Cyberonics was the manufacturer of the VNS that my son has implanted. The following information is provided by Cyberonics:
The VNS is implanted via surgery. The device is implanted under the skin on the left side of the chest. A second incision is made on the neck where the wire from the stimulator is wound around the vagus nerve on the left side of the neck. The brain is not involved in the surgery.
The device is a flat, round battery, about the size of a silver dollar—that is, about an inch and a half (4 cm) across—and 10 to 13 millimeters thick. Newer models may be somewhat smaller.
The neurologist programs the strength and timing of the impulses according to each patient’s individual needs. The settings can be programmed and changed without entering the body, just by using a programming wand connected to a laptop computer.
For all patients, the device is programmed to go on for a certain period (for example, 7 seconds or 30 seconds) and then to go off for another period (for example, 14 seconds or 5 minutes). The device runs continuously, usually with 30 seconds of stimulation alternating with 5 minutes of no stimulation. The patient is usually not aware that it’s operating.
Holding a special magnet near the implanted device causes the device to become active outside of the programmed interval. For people with warnings (auras) before their seizures, activating the stimulator with the magnet when the warning occurs may help to stop the seizure. Many patients without auras also experience improved seizure control, however.
The battery for the stimulator lasts approximately 5-10 years.
It was a big decision to go down this path. I did a lot of research. At the time it had been on the market seven years. We were very anxious about the decision because we were putting a medical device inside my son’s body with no guarantees that it would work. Our neurologist indicated my son was ideal for this because he was usually conscious when he had his seizures. Before we made our finally decision we had an opportunity to meet with a person who already had a VNS. This was really nice because we could hear her personal experience, see where the incisions were made, and see how it operated.
As a result of meeting with her, she demonstrated how the VNS affected her voice when it went off. The vagal nerve is located right by the voice box. When it is activated it causes the voice box to vibrate if you are talking. As you get used to it there is no sensation. When we first got it slightly hurt, no more than a small sore throat. As the body adjusted to it the sensation goes away. Plus they slowly increase the current over time so that your body can acclimate to it.
They give you a magnet which you use to activate the device. When you swipe the magnet across the device it will activate the VNS but at a slightly higher rate than when it normally goes off every five minutes. My son uses this if he has the sensation of seizure happening.
In our checkups the neurologist always does a check of the device. He takes this device and just holds it over the VNS and the two devices talk to each other. The neurologist can adjust setting and look at statistics about its usage.
Since my son had the VNS implanted he has not had any more tonic clonic seizures (formerly known as grand mal), and he no longer had these flutter seizures where they would rapidly start and stop. Unfortunately, his most common seizure continued to happen. These seizures were later determined to be myclonic seizures which consisted of a unsually tugging of the eye, and occasionally affecting other parts of his face and body. These continued happening frequently, as much as five or six times a day.
My son now has had the implant for seven years, which is close to the time when the battery will need to be replaced. We will decide if we will be replacing it. There are times my son wishes he didn’t have it. He doesn’t like the bump on his chest. Plus he can’t participate in any contact sports. I suspect we will want them to turn if off and we will see what happens. If he no longer has those seizures we may keep the VNS off or have it removed.
To Be Continued . . .