JANUARY 19, 2015 -

 

     Our family began a journey on February, 2014 to see if the new treatments options that were now available to help control seizures would be able to assist our daughter, Heather. If you will look at the February 2014 update, it will explain the beginning of our investigation.   The first meeting we had in Nashville, TN was with Neuro-surgeon, Dr. Joseph Neimat, who told us at this visit that the only treatment to help Heather would be a hemispherectomy of the left side of her brain. A hemispherectomy is a very rare surgical procedure where half of the brain is removed or disconnected.  We were taken back by his advice because doing surgery to take out portions of her brain never entered our thoughts.  We had met with him to discuss the possiblity of  implanting a Neuropace device, nothing else had been considered.  However, the doctor was willing to order the necessary tests to see if Heather could be a possible candidate for this device to be implanted. 

 

      After several tests were run including an MRI, CT Scan, PET Scan and EEG Video Monitoring, etc., we were disappointed to hear that Heather was not a candidate for the Neuropace.  We also received the disturbing news that her seizures were firing from three different hotspots, all on the left side of her brain confirming continuous seizure activity.  The Neuropace device is only successful if the seizures are coming from one location only.  This meant the device would not work for Heather.  So, with this news came more bad news.  We were also told that her whole left hemisphere is completely covered with the affects of  the Rasmussen's Disease that she was diagnosed with in 1996.  We had no idea that the disease had continued to do her harm, because no one ever monitored or investigated it after her surgery in 1996.  We were under the impression that the disease was taken during this surgery. In 1996,  both the left temporal and left frontal lobes were partially removed to stop the unstoppable seizures that had escalated to over 200 a day. For two months or so after the surgery, Heather was without seizures, but because the disease was still aggressive, her seizures returned.  However, we have since learned that this disease is incurable and continues to deteriorate the one affected by it.  Twenty  years ago the disease was so rare that doctors did not really know how to treat it.  Again, those disturbing words from the doctor, "the only treatment that will give Heather relief from her seizures is to remove the left hemisphere," keeps ringing in our ears.

 

     With the news that a Neuropace will not help her, our question was, "Is there some other procedure that could be done to help her that wasn't as drastic as removing the whole left side of her brain?"  With the results of one test, others had to be ordered, and there were several tests that could not be performed because she has a Vagus Nerve Stimulator implanted.  However, every test that was performed this past year each produced poor results, with the exception of one.  When discussing removing half of a person's brain, especially the left, you must locate which side of the brain is responsible for speech.  Speech includes, language, yes, but it also includes memory, reasoning, etc.  For Ninety-seven percent of us, our speech is controlled by the left side of the brain.  In order to proceed with any surgical options, we needed to locate which side of Heather's  brain was controlling her speech.