The Nerve Center

A seizure is an electrical storm in the brain. A “provoked” seizure might be the result of childhood fever, electrolyte imbalance, or alcohol or drug withdrawal. If an individual has more than two “unprovoked” seizures they are diagnosed with epilepsy. As with other diseases, the person comes first. Once the diagnosis of epilepsy is made, the individual is a “person with epilepsy,” not “an epileptic.”

My cousin, Mary, is a person with epilepsy. She was 2 years old when she had her first seizure. That was just over 40 years ago. She has been on seizure medications ever since. And most of that time she has been taking the “old generation” of meds. They had numerous long-term side-effects, many of which my cousin suffered: problems with gums and teeth (I remember at some point in her childhood, all of her teeth were capped with silver); loss of calcium leading to osteoporosis (she has incredible pain in her hips and lots of mobility issues). She built up a tolerance to the medication and had to take higher doses on a more frequent basis leading to more side effects.

I asked Linda Allen, RN, coordinator of the Epilepsy Program since 1991, what has changed in the last 40 years. The short answer was, “A lot!” The longer answer is extremely interesting and hopeful. She covered medication options, diagnostic tools and surgical interventions.

Brain imaging has dramatically improved. Pictures taken of the brain with strong magnetic capability allow for more slices of the brain to be seen, uncovering lesions that may not have been seen with older imaging.

Any abnormality on an MRI is called a lesion. Lesions in the brain such as tumors, blood vessel abnormalities, stroke and scar tissue may cause epilepsy. Still, two-thirds of epilepsy is of unknown etiology, or cause.

There were eight anti-epileptic drugs 40 years ago that are now called the “old generation.” Today there are 17 more FDA approved “second generation” medications with far fewer and less harmful side effects.

Sometimes lesions can cause uncontrolled seizures even when a person with epilepsy is “on meds.” For these people, surgery would be considered.

Surgery has evolved tremendously. The entire pre-operative protocol is very extensive. When Linda started working here the EEG machines were paper and ink and EEG techs had to fill the ink wells before starting the test. Each EEG produced a one-inch thick ream of 20 x 24 inches of paper. Now they use digitalized computers so record storage isn’t an issue.

Besides the EEG, other equipment that gives precise results are the 3T High-Resolution MRI scans, the fMRI or WADA, the MEG scan, and sometimes a SPECT or PET scan. Those tests along with Neuropsychological testing give a complete picture of whether someone will be a good candidate for surgery.

Most surgeries first require that an invasive set of electrodes be placed on the brain to monitor seizures and function. The first group of tests helps the team to “know the neighborhood” in which they will be working to remove tissue. The results of these electrodes give the exact address. Additionally, the electrodes monitor seizures and function so that only the correct tissue is removed. Occasionally it is required to perform this as “awake surgery” so that the patient’s function can be tested during the operation.

Essentially, the surgery removes the “epileptic zone” of the brain. Here at Froedtert & The Medical College of Wisconsin, we have an incredible surgeon, Dr. Wade Mueller. He has been with the program since its inception in 1991 and has performed many hundreds of epilepsy resections and brain tumor resections. Dr. Manoj Raghavan, the director of the Epilepsy Program, has been with the program since 2003. He is a key team player for decision-making for epilepsy surgery.

For patients who do not want surgery or are not candidates based on the criteria, another option exists. Dr. Mueller also has one of the highest number of Vagus Nerve Stimulation (VNS) procedures in the country. VNS is a pacemaker-like device implanted in the chest with a single wire tunneled to the vagus nerve. Dr. Mueller is assisted in the operating room by the Epilepsy Program medical director, Dr. Manoj Raghavan. The average response rate to this procedure is a 50 percent reduction in seizures or intensity.

More treatment options are coming down the road. Deep brain stimulation, responsive nerve stimulation and transcranial magnetic stimulation are all currently being researched.

Froedtert & The Medical College of Wisconsin offer all of the latest treatment options along with experience and willingness to educate and support patients and families. Linda Allen, along with Froedtert social worker LeeAnn Lathrop facilitate a month epilepsy support group on the fourth Wednesday of each month from 6:30 to 8 p.m. in Conference Room 2NT at the hospital.

There are weekly comprehensive meetings with both the Froedtert staff and the staff of Children’s Hospital of Wisconsin to review the care of individual patients.

It all makes me wish that cousin Mary was 2 years old again.

No one comes to the reception desk in the Neurosciences Center “at the beginning” of their illness or when first presenting symptoms. Many folks have already been to numerous providers to finally arrive at the door of the specialists here that have the ability to make an expert diagnosis and begin a treatment plan. You may be weary. You may be wary. Know that we will welcome you.

And yes, you will have to begin at the beginning. Being a “good historian” is so helpful when first meeting with a physician. If you aren’t one, bring someone who is: a spouse, a child, a close friend. Sending ahead or bringing thorough medical records with you helps provide this history. So do scans and labs, etc.

At that first visit you are a puzzle that the physician has to piece together through observation, information gathering and possibly some new scans and labs. If the doctor seems to be doing more thinking than socializing, that’s OK. These are a group of extremely bright and well-trained physicians. They are the teachers and mentors of the next generation of physicians. When their thinking caps are on, you are the beneficiary.
 
You know the expression, “it’s not brain surgery?” Well here, many times it IS brain surgery ...  or nerve biopsy ... or magnetoenphaography ... or ... Deep Brain Stimulation. Or 100 other diagnostic tools and treatment options, many of which we will discuss in this blog, which I'm calling "The Nerve Center." We will also talk about successful clinic visits and successful communication with your care team.

So, this is my beginning with you here in The Nerve Center. I’m not a physician or a nurse or a social worker. I’m an old English major who has a generalist’s background. That sounds almost military, but I’m not that either. I’ve been lucky to learn enough along the way to be helpful to patients and families in the areas of education and support. I’m hoping that being a “lay person” will allow me to write about the neurosciences in a way that is understandable and helpful.
 
I hope to be able to gather information and stories from our practitioners and our patients that you will find interesting and even enlightening. If you have specific topics you’d like me to research and discuss, let me know.