Thanks to everyone who has prayed, messaged, text, and called to find out how our follow-up visit for Cheyenne went today. If I didn't answer or respond, please know that I truly appreciate you thinking about us. It's just that the news and plan was very overwhelming and I lacked the energy to tell the story multiple times.
After their review of all of Cheyenne's Stereo EEG data, brain mapping and biopsy results, the Epilepsy team has determined that at this time, Cheyenne is not a good candidate for brain surgery. Here's why:
The EEG data showed that two electrodes were firing simultaneously when Cheyenne has a seizure. However, these two electrodes are on opposite ends of the left hemisphere and therefore there is not one specific area that can be removed to prevent seizures. Also, the results showed that her EEG data is always abnormal - even when she is not having a seizure. In fact, her neurologist said that he believes the only chance she has to becoming completely seizure free is to have a complete hemispherectomy. That is where they completely disconnect the two halves of the brain. That of course would have very significant permanent side effects. It is because of the permanent damage that such a large procedure would cause that the surgery team is not willing to do it until we have exhausted all other possibilities.
We have been fighting the medication battle for over a year and a half. We have been through multiple medications and even if/when the medication works, the side effects are terrible. Some have caused aggression, some have caused extreme fatigue and all cause cognitive delays. Also, currently she is taking two different meds and her seizures are still increasing in frequency and intensity. We NEED to do something different. So for now, there answer is to implant a device called a Vegus Nerve Stimulator (VNS). The VNS functions like a pace maker for the brain. It gets implanted in the chest and an electrode wire gets wrapped around the Vegus nerve. It will send electrical impulses to the brain at intermittent times and durations based on how the doctor programs it. The science behind it is that these electrical pulses cause just enough disruption in the brain waves to prevent seizure neurons from gathering and firing. Statistically, the VNS has reduced seizures by 50% in over 50% of the cases. Also, another benefit is that if/when a seizure does occur, you can use a special "magnet" to swipe over the device and instantly stop the seizure. The hope is that we can eventually decrease her meds and alleviate a lot of her cognitive delays by eliminating a lot of her seizures.
The doctors want us to try the VNS for about a year to two years to see if it helps. If it does, great. But if it doesn't, then we will need to seriously consider the major surgery. The VNS can take anywhere from 3-6 months to become "therapeutic" enough to work. So in the meantime, we will be changing her meds (again) and also adding CBD oil (medical marijuana). And before you ask - No, you can't have some, and No, we're not taking it too? đŸ˜‰Besides, when I made a joke about taking it too, the Doctor said to me, "Unfortunately, the chemists have found a way to suck all the fun out of it!" LOL. But seriously, the doctor said with kids the CBD oils either work miracles or do nothing but there's no real side effects, so it's worth trying because it won't cause any harm and we may get lucky and be on the positive side of the fence.
Cheyenne will have the VNS implanted on 2/28. The surgery is pretty simple and a lot of times is done as an outpatient procedure. But Childrens wants her to stay overnight one night for IV antibiotics and to ensure she doesn't have any complications. She will have to spend one night in the hospital and miss about two weeks of school just to give the incisions time to heal and prevent risk of infection.
After their review of all of Cheyenne's Stereo EEG data, brain mapping and biopsy results, the Epilepsy team has determined that at this time, Cheyenne is not a good candidate for brain surgery. Here's why:
The EEG data showed that two electrodes were firing simultaneously when Cheyenne has a seizure. However, these two electrodes are on opposite ends of the left hemisphere and therefore there is not one specific area that can be removed to prevent seizures. Also, the results showed that her EEG data is always abnormal - even when she is not having a seizure. In fact, her neurologist said that he believes the only chance she has to becoming completely seizure free is to have a complete hemispherectomy. That is where they completely disconnect the two halves of the brain. That of course would have very significant permanent side effects. It is because of the permanent damage that such a large procedure would cause that the surgery team is not willing to do it until we have exhausted all other possibilities.
We have been fighting the medication battle for over a year and a half. We have been through multiple medications and even if/when the medication works, the side effects are terrible. Some have caused aggression, some have caused extreme fatigue and all cause cognitive delays. Also, currently she is taking two different meds and her seizures are still increasing in frequency and intensity. We NEED to do something different. So for now, there answer is to implant a device called a Vegus Nerve Stimulator (VNS). The VNS functions like a pace maker for the brain. It gets implanted in the chest and an electrode wire gets wrapped around the Vegus nerve. It will send electrical impulses to the brain at intermittent times and durations based on how the doctor programs it. The science behind it is that these electrical pulses cause just enough disruption in the brain waves to prevent seizure neurons from gathering and firing. Statistically, the VNS has reduced seizures by 50% in over 50% of the cases. Also, another benefit is that if/when a seizure does occur, you can use a special "magnet" to swipe over the device and instantly stop the seizure. The hope is that we can eventually decrease her meds and alleviate a lot of her cognitive delays by eliminating a lot of her seizures.
The doctors want us to try the VNS for about a year to two years to see if it helps. If it does, great. But if it doesn't, then we will need to seriously consider the major surgery. The VNS can take anywhere from 3-6 months to become "therapeutic" enough to work. So in the meantime, we will be changing her meds (again) and also adding CBD oil (medical marijuana). And before you ask - No, you can't have some, and No, we're not taking it too? đŸ˜‰Besides, when I made a joke about taking it too, the Doctor said to me, "Unfortunately, the chemists have found a way to suck all the fun out of it!" LOL. But seriously, the doctor said with kids the CBD oils either work miracles or do nothing but there's no real side effects, so it's worth trying because it won't cause any harm and we may get lucky and be on the positive side of the fence.
Cheyenne will have the VNS implanted on 2/28. The surgery is pretty simple and a lot of times is done as an outpatient procedure. But Childrens wants her to stay overnight one night for IV antibiotics and to ensure she doesn't have any complications. She will have to spend one night in the hospital and miss about two weeks of school just to give the incisions time to heal and prevent risk of infection.
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