Hemispherectomy for Intractable Epilepsy

When the word Hemispherectomy first became a part of my life, my daughter was only one week old. Shortly after she was born, she was transferred from our small town hospital to a larger one because she had been diagnosed with epilepsy. She was in the NICU, in a medically induced coma because that was the only way her seizures could be controlled. Many tests were performed in order to diagnose what was wrong. There were MRI's, EEG's, CAT scans, PET's, SPECT's, bloodwork, bloodwork, and more bloodwork. Waiting for answers was always the hardest part. What was causing the seizures? When could she go home? Was she going to be ok?

During this time, my parents gave me a book titled "Gifted Hands" by Dr. Benjamin Carson, a pediatric neurosurgeon from Johns Hopkins. I read it and was amazed by the chapters on hemispherectomy and how Dr. Ben Carson perfected this brain surgery that saved lives and dramatically increased the quality of those lives by removing a diseased or dysfunctional half of a patients brain. To qualify for a hemispherectomy the patient had to have seizures in only one half of the brain that decreased their quality of life and did not respond to medications. But that would not be us. While I found this surgical procedure to be a miracle for those with intractable epilepsy, I knew it was not my daughter's future. I was convinced that medication would be the answer and we would take her home and life would be normal. I was wrong.

My daughter did go home when she was 17 days old. She went home awake, on medication and while the medication did not stop the seizures, she did develop normally.....for a while. As she grew, the seizures became more frequent and we also learned a new phrase...cortical dysplasia. This bascially meant that there was disorganization of the neurons in the right hemisphere of my daughters brain. This was causing the seizures and as medication was not working, brain surgery was the next option. This meant more tests and in the meantime, regression had begun and my daughter lost her smile.

Her Dr.'s decided to remove what looked like a small mass in my daughter's right hemisphere and her first brain surgery was scheduled. It was a nine hour surgery but it seemed much longer. The results were good. The seizures had stopped, she started regaining her milestones, and most importantly, her smile was back. Life was good for a while but a short time later, the seizures returned. This meant that once again she would have to have more tests, bloodwork, and no chance of weaning off seizure medications. This was when her neurosurgeon used the word, "hemispherectomy".

You're going to do what to my daughter's brain? Although I did know what a hemispherectomy was, it was one thing to read about it and another to listen to a neurosurgeon talk about performing this uncommon form of brain surgery on my child. I did not want to listen. I did not want to see another hospital. I did not want to put my daughter through any more tests so my irrational thought was to pick her up and run away. I didn't do it, but I wanted to.

Her second brain surgery was scheduled and again, it was another anxiety filled nine or ten hours of waiting. Again, all went well and the hemispherectomy was a success. My daughter was seizure free and functioning totally on her left hemisphere. She spent a few weeks in the hospital and then we went home. She was still on medications and would stay one them for a year or so. If she remained seizure free, we would wean her off of them.

While the hemispherectomy was a life saving brain surgery for my daughter, it did come with its side effects. Loss of some funtion on the left side of her body called hemiplegia or hemiparesis, no left peripheral vision in either eye, delayed development, and mood instability. All of this meant a lot of therapy. She had speech therapy, physical therapy, occupational therapy, and develomental therapy along with visits to an orthopaedic doctor to have her fit for a leg brace as her muscles on the left side were very tight. She also had a hand splint to wear a few hours a day and she was very sensitive to loud sounds and textures. The positives were that her development took on a faster pace. She played with her toys, she loved her books, and she loved her music. The best part was....no more seizures.

What did the future hold for my daughter after her hemispherectomy? While it has been a long road that has been filled with major ups and downs, she remained seizure free for 16 years. At 17 years old, she was diagnosed with temporal lobe epilepsy because of damage in the left hemisphere, in the form of scar tissue, due to having had so many seizures as a baby. Medication seems to be doing the trick this time. She still has hemiplegia, the loss of left peripheral vision, and still struggles with mood. Otherwise, she is a healthy 18 year old who will graduate with her class in 2012. College may not be in her immediate future and she will need a lot of support to be as independent as possible. She keeps making gains and that is what is important.

All of the photos used in this lens are of my daughter, including the MRI picture in the introduction module.