New Update & Upcoming Brain Hemispherectomy on Jan. 26th
Our family began a journey last 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.
The Neurologist, Dr. Khalil, believed that Heather's brain had rerouted itself and that her speech had moved over to the right side of her brain. He said he believed this very strongly because the tests show the entire left hemisphere is covered with the disease, yet, she has a remarkable ability to communicate. We know that in 1996, her speech had been controlled by the left side because it was greatly affected after her surgery. It is very uncommon for the brain to move the speech from one side to the other, especially for an older child, teen, or adult. Therefore, removing the left hemisphere is rarely performed in an older child or adult. The majority of left hemispherectomy's are only performed in infants and very young children. This is because younger brains have more plasticity, or the ability for other parts of the brain to take over functions controlled by the side that is removed. The older the brain gets, the ability for the other parts to take over function is lessoned. In order to find out what side of the brain is controlling speech, a Functional MRI or a WADA test has to be performed. Again, because of the VNS Implant the Functional MRI cannot be done...
---THE WADA TEST---
Though the doctor believed Heather's speech was being controlled by her right hemisphere, tests had to be done in order to prove this had indeed happened. So, a WADA test was scheduled and performed in the month of September. Heather was very anxious and worried about this test because she would need to be awake during the procedure. Die is injected through a catheter into the groin area, and then threaded up to the brain in order to put one side of the brain to sleep. Once the medicine puts one side to sleep, the doctor gives simple commands to the patient to see if they can perform them from the side that is awake. Then, the test is repeated for the opposite side of the brain. This test is usually successful in determining where the speech is located. Normally, the patient is able to speak and follow commands when the side controlling speech is awake. However, the results of this test were inconclusive for Heather because she could not speak at all. This, of course was unusual. When we met with the doctor after the test, everyone was disappointed, including the doctor. He suggested that we repeat the test. He said he thought there were several things that happened that possibly interfered with the results of the test. Again, he is the one who believes her speech is being controlled from the right hemisphere. When Dr. Khalil told us about repeating the WADA test, we asked him if he could be present in the operating room with her for the next test, and if one of us, mom or dad, could be in the room as well, and he agreed to both...
A conference was held for the team of Neurology doctors including the Neurosurgeons from Vanderbilt to discuss Heather's case. Dr. Khalil, had spent hours putting together a power point presentation showing her twenty year history as well as results of all tests, etc. for this conference. The power point presentation was presented at this meeting for the team of Neurology for a final recommendation from them for treatment options. The team recommended a MEG test that would measure magnetic field to determine brain function, but once again, here is another test that could not be performed because of the VNS implant. They also greed to have the WADA test repeated. If the test confirmed that the speech is controlled by the right hemisphere, the decision was unanimous that the only treatment for her seizures would be to remove the left hemisphere. It was approved that the doctor and one of us, mom or dad would be in the operating room for the next WADA... So, the next WADA test was scheduled for November 7, 2014....
---THE RESULTS OF THE 2ND WADA TEST---
Through prayer and wisdom, our family had decided that Heather's Dad, Pastor Cape, needed to be the one to go with them for this test. So, Pastor Cape had to put on scrubs and scrub down like everyone else. Before they took him back into the operating room, the nurses told him that Dr. Khalil had already advised everyone that they would only put the left side of the brain to sleep, but if Heather failed to speak the first time, everyone was instructed to do the test a 2nd time. After about 30 minutes, Pastor Cape called and said that Heather had failed the first time they did the test. He asked that we get others to pray because the doctor had noticed that during the test, it appeared on the screen that the medicine was traveling to both sides of Heather's brain. The doctor thought that the medicine was possibly putting both sides of her brain to sleep. So, he voiced his concerns and then asked the Neuro-Vascular Surgeon, who was doing the procedure, if there was a way to put a stint in to block the medicine from traveling to the other side. The surgeon said that he could be sure to get the catheter further into the left hemisphere, but would have to go in through Heather's main artery in her neck. He had never done this before with the WADA, but felt it could be done. If he could not thread the catheter through the groin, he would have to go in through the neck and the risk for a stroke was much greater. The Neuro-Vascular Surgeon explained to Pastor Cape that the risks to do this were more serious and complicated, but also said, "This is the very last test we can do for Heather, and it is very important to try it one more time." PastorCape gave the permission for them to proceed, and then he called and asked the rest of the family to be praying. What happens next when the test is repeated is AMAZING!!!!
Within about 10 minutes or so, Pastor Cape was called back in to the operating room. When he got in there, Heather already had her hands in the air ready to begin. The doctor instructed her to keep her hands in the air and to begin counting as the medicine was injected, and she did. When she got to the number 3, her right arm fell, indicating that the left hemisphere was indeed asleep. What happened next was a true miracle, Praise the Lord! Heather continued counting, 4, 5, 6 and she continued counting until they said it was enough! She was then asked to recognize a few objects, and was able to recognize most of them. Then they asked her if she could sing, and without hesitation, she began singing on her own, "God never moves without purpose of plan, when trying His servant or molding a man"...Ron Hamilton's song, Rejoice in the Lord. The results of this WADA were unbelievable! Everyone in the operating room were shocked!! The WADA test confirmed that the right hemisphere was controlling Heather's speech, therefore making her a candidate for surgery to remove the left hemisphere to prayerfully stop her seizures forever!!!!!!! Isn't it interesting that the first word she sang when asked to sing was, "God." She lay on the table singing of her Saviour whom she loves with all her heart!!!! Pastor Cape said that there were at least 12 people including 4 doctors that were present in the operating room as the procedure was taking place. The room became extremely quiet as they listened to Heather sing about God's grace and how we are to Rejoice in the Lord, because He makes No Mistakes!!!
PLEASE PRAY...
Through much prayer and fasting, Heather has made the decision to have the left side of her brain removed to stop her seizures. Her surgery is scheduled for Monday, Jan. 26, 2015 at Vanderbilt Hospital in Nashville, TN at 7:30 am, CT.
