Posts Tagged ‘VNS’

Since I have had some time on my hands and have had the opportunity to spend some time with my son, I have learned a little bit more about my son’s medical conditions.

My son has not had any seizures for over six months or longer. Up to now it has been difficult to tell because sometimes his non-epileptic seizures look like seizures. I am now pretty confident that the seizures he was having when he was younger are no longer happening. In those days his seizures always started with his eyes and head, and sometimes traveling on to other parts of his body.

Since I was going to be home with him full-time for awhile, I decided to slowly reduce his epilepsy medications. He was on depakote and tranxene. He has now been off both of these medications and has had no seizures. This is big for him. Eliminating these medications removed at least one ball and chain from around his neck.

He still has his VNS, which may be still providing some control over the seizures. We are approaching the time where we will need to change the battery in the VNS. He has had it since 2004 and it is about due for the battery to be dead. It will be a big decision to decide what to do. At times my son wants the VNS out. He doesn’t like the look of it in his chest and at times it will hurt him,which I suspect is from scar tissue. The last time he saw his neurologist he asked if it could be taken out. The doctor said we would talk about that when the time came.

My son also has this concern about having it in his body and that it prevents him from being “normal.” A year ago his someone made a stupid joke that he should be careful before the doctors turn him into a robot. Dumb joke. My son took it very seriously.

On the other hand, my son has mentioned that his VNS has always been with him. He is thirteen now. He questions whether to remove it because it is a part of who he is.

Decisions, decisions. We will see what happens next. It is wonderful having him off the medications. It will be interesting to see if there are improvements in his life as a result of getting away from the side affects of the medications. No more drowsiness. I wonderful how this will impact his learning. He is way behind in most of his classes. Is it possible that some of his learning disabilities were caused by his medications, or at least contributed to his learning difficulties? I guess we will see.

So now what’s next? The neurologist doesn’t know we did this. I am not sure what his reaction will be. I am also curious what my son’s epilepsy status will be labeled. Does he still have epilepsy? Is there a period of time when one is seizure free and one is no longer considered to have epilepsy?

This is a big change for us. When he was younger he was having cluster seizures twenty or more times a day. His seizures were sometimes triggered by bright lights. It had a big impact on all of our lives. And now, it appears to be over. I wonder for how long will I have my guard up? I am always watching, looking for that unusual eye blinking which indicated the start of a seizure. It’s an odd feeling. Waiting. Hoping nothing happens. Watching for any sign. I want to celebrate the moment, but am afraid to, in case it sneaks up on us again. Perhaps with more time this anxiety will go away. Lucky for my son he usually isn’t even thinking about it. Good for him. It s my job as his mom to carry that burden of concern. This way he can just live his life. I am so happy for him. We have plenty of time to celebrate.

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.

Picture provided by Cyperonics at

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.

Picture provided by Cyperonics at

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 . . .

This is a follow-up to my blog called Test after test soon leads to torture.  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 some of the other experiences we had while trying to identify a diagnosis.  This included blood tests, MRI’s, EMT, medications, etc.  

As I mentioned in an earlier post, over the years my son has had  seven or eight long-term video EEGs at two different Children’s Hospitals and at the Cleveland Clinic.  The procedures for  the test were pretty consistent from all of the clinics and included putting on the electrodes, capturing the brain activity via the EEG, being video taped during the test, trying a few different strategies to trigger seizures, and eventually waiting for the results.

The long-term EEGs were torturous.  My son was only 3 1/2 years old when this all started.  He screamed when they marked his head for placement of the electrodes.  He panicked when they brought out the brown glue bottle for adhering the leads to his head.  Then as the test was being conducted and as the days went by he lost patience and did not want to remain on the bed in sight of the video camera.  Cleveland Clinic had a set up where he could momentarily unplug from the EEG and take some time to walk around, which was a big help for getting through the test.  They even had a McDonald’s on site which was a big treat for my son.

During the test my son would complain about the gauze that was wrapped around his head which was used to keep his hands off of the electrodes and as extra support for the electrodes themselves.  He said it was making him hot.  Then after a day or two, he would begin picking and scratching at the electrodes.  He was especially sensitive to the ones that were placed behind his ears or on his forehead.  Picking at the electrodes would sometimes reduce their connectivity and the technicians would re-glue and place the electrodes back on.  Besides itching there were times my son complained they hurt.  When we were done with the test and when we took the electrodes off, his forehead had sores where each lead was glued.

The other big obstacle to overcome, especially in our earlier days, was resting with lights on at all times.  Eventually the technology solved this, but in the beginning the lights in the room had to be on so that the video would clearly capture all of the activity.  It was a struggle to get my son to sleep with the lights on.  After having a couple of long-term EEG’s, I learned that the best way of dealing with this was to lay beside him in the bed which comforted him and then he would fall asleep.  I no longer cared if I was on the videos.   The hospital itself was not concerned with the lack of sleep because sleep deprivation sometimes triggers seizures.  Such was not the case for us.  Besides getting my son to sleep, I, as the parent, got no rest.  A long-term video EEG meant that I would get little or no sleep for four or five days.   It was a struggle, but you endured it.  You had to.  It was a sacrifice that may help your child.  In more recent years there is no longer a need to have the lights on because they use video cameras that work in the dark.  What a relief that was.

As a parent you want to relieve your child from any agony that they may be experiencing.  But as a mom desperate for a diagnosis, I prayed that he would have a seizure.  The frustrating part for us was that during many of these EEG tests we were not having the same experiences with the seizures that we were having at home.  At home my son was having numerous seizures every day.  They always began within twenty minutes of waking in the morning.  It was consistent.  It was so consistent that I had a video camera in place aimed at his favorite sitting place and I was able to tape his seizures.

Over time, we learned that his seizures were triggered by lights, more specifically changes in lights.  Seizures happened as we drove to daycare with bright sunshine.  Or seizures always happened in the grocery store in the fish / seafood section.  My theory for this was that this area of the store always had fluorescent bulbs that were placed lower than the other lighting in the store.  The same happened at restaurants when we sat at a table that had a low hanging light for the table.  He would have seizures when we would come out of a theater after watching a movie.  He also had problems in the winter on those bright sunshine days and the snow has that sparkly effect.  Seizures also happened from car lights when driving at night.  Emergency vehicle lights also trigger a seizure.

So my theory in the hospital during the EEG was that there was not enough change in lighting to trigger the seizure, especially when they had the lights on 24 hours per day.  Flashing a light, such as a strobe, in his face did not do the job.  I eventually convinced the neurologist and the EEG technicians that they needed to let me control the environment, particular the lighting. It wasn’t easy convincing them of this because it was not “normal protocol” for the test.  Each time there was a shift change I had to convince them to let me control the environment.  Finally I had the neurologist put the instructions in my son’s file so that I could refer them.

I knew I had to assimilate the environment to be like it was at home.  The most consistent time when he had seizures was within 20 minutes of waking up in the morning.  He needed to sleep in a dark room and wake to daylight in the morning.  We finally captured the seizure activity within twenty minutes after waking.  My theory was correct.

It was a big relief to have captured the seizures on EEG.  We learned that he was having seizures in the frontal left lobe of the brain.   It was sad to say that I was happy that we had some evidence that we could point at.  It wasn’t good news, but it was information that we didn’t have before, which would bring us much closer to reducing or eliminating the seizures.  This happiness was short-lived because knowing the location of the seizures did not necessarily point the neurologist to what medication to use.   Since medications were not working at first we tried one more thing, a VNS.

In the near future I will share our experiences with the Vagal Nerve Stimulator and its impact on my son’s epilepsy. Watch for the post on Twitter, or come back to check this blog.

To Be Continued . . .

November is National Epilepsy Awareness Month.  The Epilepsy Foundation is launching a nationwide campaign to make 1 million Americans seizure smart this November.  We need you to help us spread the word!

The campaign is called “Get Seizure Smart.”  More information can be found at Take the quiz and see how much you know about epilepsy

For those of you that have followed me either on Twitter or Facebook, this is old news.  For those of you that are new to me Epilepsy is a very important topic in my life.  My son, J.O., has epilepsy, along with a number of other health issues.  He was diagnosed when he was 3 1/2.  It was a terrifying event for both of us.  For the next 4 years we struggled to get any type of  relief from the seizures, which had been occurring multiple time every day.  We saw many specialists and went to multiple clinics for evaluation, including Children’s Hospital in Columbus, OH, Cleveland Clinic, OH, Mayo Clinic, MN and Minnesota Epilepsy Center which is in St. Paul.  The neurologists tried many different antiepileptic drugs for the purpose of gain some control of the seizures.  The drugs were scary and had major side effects.  In 2004 J.O. had surgery to implant a Vagal Nerve Stimulator (VNS) for the purpose of either stopping seizures or lessening their severity.  After a few months it was successful in eliminating his most severe seizures.  Yet he was still having myclonic seizures.  Finally our neurologist found a combination of drugs that almost eliminated the seizures.  Occasionally J.O. will have one, but now the instances are one seizure for every two weeks or so.  What an improvement?

So that is where my passion comes from regarding epilepsy.  For the next month I will share some facts about epilepsy and you can be one of the Americans that are seizure smart.

More to come . . .