We have seen the neuro-surgeon. He has confirmed that Ammon is not a candidate for specialized surgery to remove the sparking parts of his brain to control his seizures. There is too much damage in too many places. Oh, our little son.
Ammon will now have a Vagus Nerve Stimulator (VNS) implanted next Tuesday, August 10th. It will not be turned on for two weeks to ensure that the nerve has a chance to repair from the surgery and make sure the wound does not become infected. If it becomes infected the device has to come out. That gives us time to have the implantation, come home for baby Aaliyah's arrival, get the kids back to school and then back to Primary Children Medical Center before the end of the month.
Ammie has four loose teeth and we went in today to have them pulled so that if they have to tube him during surgery the teeth won't get knocked down his throat. As things go with Ammie, he was having none of the lying down and helping the dentist so he has to go in Monday morning for sedation and then trying again.
We are hoping for the best. In 50% of patients the with the VNS they have a 50% reduction in their seizures. Twenty five percent see more than a 50% increase. The last 25% will see no improvement at all. We are keeping our hopes we will be among the successful 75%.
I'm going to paste here a description of what the VNS is and how it will work.
Vagus nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures by sending regular small pulses of electrical energy to the brain via the vagus nerve, a large nerve in the neck.
Vagus Nerve Stimulator
The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagus nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagus nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.
Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past.
