This surgery, mostly now done as a Functional Hemispherectomy, is when a surgeon "disconnects" the side of the brain that is causing seizures. Through the Corpus Callosum, a broad band of nerve fibers joining the two hemispheres, the surgeon "unplugs" the damaged brain hemisphere, giving the patient an 80% cure rate for seizures. This surgery was brought back into regular use by Doctor Ben Carson in the 1980s (a famous presidential candidate) in his former incarnation as prominent neuro-surgeon at Johns Hopkins. At that time they were doing Anatomical Hemispherectomies, where they actually removed the brain tissue itself, but this is not often done anymore.
Because Byron had a stroke pre birth, his right hemisphere looks like this. This is his actual MRI when he was an infant. You can see that there is very little brain matter on the right side. The seizures are emanating from the scar tissue in that white area.
After we discussed the possibility of this surgery with Dr. Akman, she asked me how I had heard of the surgery. I told her that I had heard from other mothers of children who had Byron's condition and online groups. She was very upset that I had not heard about it from any doctor or Byron's former neurologist. She told us that there is still such a stigma about this surgery that many families and even doctors, though it can provide a cure, will not consider it.
I told her that if all goes well with Byron, if he has the surgery, I would be happy to talk to other parents or even doctors about our experience. She looked very moved and she said "You can be my voice!" So in keeping with that promise, I thought i would make this post a little more detailed than usual.
After Byron's endless video EEG and MRI, the Chief of Pediatric Neurosurgery at Columbia, Dr. Feldstein, told us that Byron is an exceptionally good candidate for this surgery. The right hemisphere, being the non-dominant hemisphere, has fewer side effects upon disconnection e.g. no loss of speech. (The speech center is usually on the left side). And Byron has so little brain matter on that side anyway, he felt that it is very unlikely that Byron is using much of it for normal functioning.
But there are several next steps. We heard that after we left the hospital, they presented Byron's case to the Nuerology team, as is the typical protocol. During that meeting, other Eleptologists felt that we hadn't tried enough pharmaceuticals yet to warrant a surgical intervention.
So, first we have to exhaust another course of pharmaceuticals, and this is not our first choice. Dr. Akman has prescribed an evening dose of Diazepam (Valium), in addition to his Trileptal, to see if this will calm the night spiking. She admitted that she does not think this will work but it needs to be tried. The almost constant night spiking that Byron has, ESES, is nearly impossible to cure without heavy, and potentially toxic doses of medicine. Fortunately she is not asking us to go to that extreme route. (ESES can happen, and does for many children, on both sides of the brain, and these children do not have a potential cure as Byron does.)
Then, at the end of January, he will go in for another shorter video EEG, and if the subclinical spiking is still present, we move forward towards surgery.
Byron also needs a Functional MRI, to check which parts of his brain do what, but that can be done in this time frame as well.
A word about CBD oil. Many people have reached out to me about Cannabis Oil. We have researched this extensively, and discussed it with Dr. Akman. She does not recommend it for Byron and from what I have researched, when the seizures emanate from a known infarct, the injury to the brain, the CBD oil does not help much at all. And when speaking to other mothers who are in the same boat as we are, the CBD oil was not helpful.
Surgery is our best option at this juncture. If the constant subclinical spiking is gone at the end of January, then YAY! But if not, we move towards this scary but necessary option.
Of course we asked what the outcome would be. The surgery takes about 8 hours. Best case scenario, Byron wakes up with minimal side effects, is gone from the hospital after two or three days, and is back in school in a month. His seizures and subclinical spiking go away, he has a clean EEG, and we ween him off of all medicines for good.
This is the outcome we pray and ask for blessings for. And we know it is possible. Byron's recovery from his Selective Dorsal Rhizotomy was the quickest they had ever seen in the hospital. But even if it is not that quick or complete, we can work with that too.
And as always, I will keep this blog updated about Byron and his wonderful world!
This link takes you to a very sweet video of a man in Wyoming who lights a tree for every child in the world who has had a hemispherectomy. It started when Ben Carson operated on his granddaughter. Now he has lit hundreds of trees. It is the Hemi-Lighted Forest of Hope.
http://www.kgwn.tv/content/news/Hemi-Lighted-Forest-of-Hope-406163345.html
