Vision After Occipital Lobectomy and Related Surgeries_0_0
During Q and A, when you're considering your questions, please understand that Monica Jones is not qualified to provide legal or medical advice. And she's unable to comment on the specific needs of students and children who are not in her care. So please generalize your questions, if you could, for the benefit of everyone present on this call. Make sure your volume is on and turned up.
Some people find external speakers or personal headphones give them the best audio. This event is being recorded and will be available on the Perkins website, including a downloadable version of the presentation. So thank you for joining us for this event. We appreciate your feedback and your topic suggestions. To introduce you to Monica Jones, who is chief executive officer and co-founder of the Brain Recovery Project, an organization that funds research to better understand how to help kids reach their full potential following hemispherectomy surgery.
Over the past few years, the website BrainRecoveryProject.com has become the go to resource for families considering or who have had brain surgery to intervene in their children's seizures. And Monica came to this work, as many of us have in this community-- her first son, Henry, was born with a rare, unilateral brain malformation. And she'll tell you a little bit of that story in her presentation, today.
Monica is a graduate of the University of California Los Angeles and received her Juris Doctorate from the University of Southern California. In 2018, Miss Jones was nominated by her peers as a Rare Champion of Hope, an award given by Global Genes Organization to honor her notable efforts in rare disease advocacy. It's a real honor to have worked with you on this presentation, Monica, and to welcome you to Perkins, today.
Thank you so much. And just a quick correction, we're not just hemispherectomy anymore, but really all epilepsy surgeries, primarily the big ones, where big parts of the brain are removed. So thank you so much for the introduction. I see Linda is on the line. But I'm not sure if she's able to reach us from another phone.
Can you hear me now?
Yes, we can.
OK, well, thank you very much for inviting me to be here with you all. And I just have to say I think everybody should have the opportunity to look at the website to Brain Recovery Project. Because there is a tremendous amount of information on the website that can help parents, physicians, and the teachers and occupational therapists-- whoever on the team is working with the child.
There is not a lot of information on the assessment or rehabilitation of a child who would have a hemispherectomy or other type of epilepsy surgery. So this is a wonderful resource. Also, I know Monica and I would love to hear any feedback you have or any questions. Because it helps us in developing better methods of assessment and intervention to help these children and families.
So feel free to contact either one of us afterwards. Or if I can answer any questions afterwards, I'm available. But thank you very much.
So I'll do the quick overview, and then we'll talk a little bit about the epilepsy surgery. Linda, I think if you could turn off your speaker-- I believe we're getting a little bit of feedback. So we're going to go over, first of all, why, as a parent or as a surgeon, you would choose to remove an occipital lobe of the brain or more, what the resulting visual impairments are, and how they impact a child.
And then we'll briefly review some of the instructional methods, accommodations, modifications, and compensatory mechanisms that will help these kids succeed in school. So why remove an occipital lobe on purpose? In the broad world of epilepsy, about 9,500 children in the US alone are diagnosed with epilepsy each year. For 47% of them, they will be seizure free on the first drug.
For 13% of them, they will be seizure free on the second drug. And then this starts to drop precipitously until 36% of them will not be seizure free on any drug. And so it's after failure of these two medications when parents are generally told that they should start considering epilepsy surgery to stop their child's seizures.
And epilepsy surgery just means any type of brain surgery where part of the brain is removed, disconnected, or provided with input, like with a VNS implant, to stop or slow down the seizure activity. Linda, do you want to take this slide?
Oh, I think I'm unmuted now. This is quite interesting, because the other thing that it is so important is to look at the rise in the numbers over time. So you can see, as far as the number of cases, back in 1997-- now, you look at that the most recent registered cases in 2009, and you can see that the instance of using epilepsy surgery is definitely increasing.
So you, as interventionists, are going to be seeing more of these children out on your caseload. And that's one reason it's so important that you learn how to do the assessment in intervention that'll be described.
So when you do have a surgical evaluation, it would really be under one of three circumstances. The first is if the child has failed at least two anti-epileptic drugs. The second is if the child is diagnosed with a catastrophic epilepsy. And the third is if the child is diagnosed with a condition that is known to be drug resistant. So catastrophic epilepsy is our ohtahara syndrome, infantile spasms, which we'll talk about a bit during this presentation.
And it's important to note that for each week that infantile spasms are allowed to continue, some research shows that the IQ of the child can drop by as much as four points for each week. So those are a particularly catastrophic form of epilepsy. Dravet syndrome, Lennox-Gastau, Doose syndrome, Sturge-Weber, and Rasmussen's encephalitis are all catastrophic epilepsies.
You would also have a surgical evaluation, if you have a hemispheric malformation. My son was born with hemimegalencephaly, which was a massive, unilateral malformation of the brain. Again, Rasmussen's encephalitis, in utero stroke, or stroke post-operatively, cortical dysplasia, which is malformation of the cortex layer, polymicrogyria-- too many little folds in the brain-- tuberous sclerosis complex, hypothalamic hamartoma, and electrical status epilepticus in sleep.
Remember, for you parents out there, having a surgical evaluation doesn't mean you've decided to have surgery for your child. It just means you've decided to understand all your options-- to have all your options on the table before you move forward with any decision. So we're going to do a quick brain 101 before we jump into the vision issues. So this is your brain.
This is what we're all familiar with. There are other parts to it, but we'll really talk about here, the cerebrum. And then there's the cerebellum on the bottom. Those are the familiar folds, there in the cerebrum. Lots of grooves and lots of folds. And when we look at the functions of the brain, they're generally broken out into four separate lobes on each side of the brain. And vision is primarily processed here, in the occipital lobe, which is at the back.
And you have two occipital lobes, one on each side of the brain. When you take a slice through the brain, you've got gray matter and white matter. And what is that? Gray matter is the outer layer of your cerebrum. And that's what we call the cortex. And it's only about five millimeters deep. And this is where the body of the neuron is.
Your white matter, here, is just axons, which are the long strands of connections that come from the neurons, extend down to the middle of the brain, and eventually, down to the body. So here's your typical neuron. There's your gray matter. There's your cell body. And then your axon is the white matter, there. So if we were to look at the brain-- if you were to take a slice, your cortex is just this very thin layer outside.
And then your white matter, here, are all these connections. And what we see here are bundles of about 1,000 axons per bundle. And you can see how they go all the way down and eventually head into the brain stem. This is a really beautiful image. I encourage you all to go to GregDunn.com. He's an artist who's made these amazing micro-sketchings of the brain.
And here is a representation of about 500,000 neurons. Again, outside layer, here, is your cortex. So any time you hear cortical, you're really only referring to this outer layer, here. And then white matter, or axons, are here. So in epilepsy surgery, what surgeons are doing are either cutting out this whole section, here, or disconnecting these axons, here.
These axons do not grow back. The axons from neuron to neuron in the cortex do. But once you sever these axons, they do not grow back. They do not reconnect. You can have some reorganization here at the cortical level, but not at the white matter level. And you can see also how the occipital lobe is nicely folded up, here. We'll talk about why that's important a little bit later.
We think about the brain as having these lobes, but it's really important to also understand how the lobes are connected to one another. So here are another bundle of white matter tracks that you can now see a different view of the brain. Occipital lobe is back here. Here is the white matter tracts coming from the cortex of the occipital lobe. But now, the vision, the information from that part of the brain, is traveling to other parts of the brain.
And that's how you process vision. So think about the brain as these circuits of information. Vision may start being processed in the occipital lobe, but any kind of damage you have out here or in the parietal lobe even, or in the temporal lobe can also have an effect on how a child processes vision. And real quickly, here are the ventricles of your brain.
You have about a half a teacup full of cerebrospinal fluid flowing through your central nervous system at any given time. And your ventricles are sort of supporting the brain from the inside. Why is this important in vision? Why is it important in surgeries which remove an occipital lobe? Because some children develop hydrocephalus, which is too much fluid in these ventricles.
And what's important to understand is that these ventricles lie within those white matter bundles that I showed you. So any kind of swelling in this area from too much fluid is going to have an impact on the child's vision. So if you're working with a child who's had a surgery which removes the occipital lobe, you really need to understand whether the entire occipital lobe was removed or whether it was only part of it.
Why that's important is because 50% of each occipital lobe is devoted just to your central field of vision, which we'll cover in the future. So the more of the central vision that's affected, the more of an impact it's going to have on their vision. Has the child had hydrocephalus? That's a question to know. And then is it just the occipital lobe that was removed? Or was the occipital lobe, as well as other lobes, removed?
So in a procedure like a hemispherectomy, you either remove all four lobes of one side of the brain, or you disconnect them by cutting those white matter tracts that I showed you in the previous slides. Some kids have what's called a TPO or a posterior quadrantic resection. That's removing the parietal, temporal, and occipital lobe, but leaving the frontal lobe intact.
Or some children just have an occipital lobectomy, maybe with a temporal lobe or just the occipital lobe alone. I hope that makes sense to everybody. So we're going to do a case study. Here's your patient or your kid in your class. You know that he had a c-section at 35 weeks. He was born with hemimegalencephaly, which is a large malformation in one side of the brain.
He had seizures in utero as well as as soon as he was born. He had infantile spasms. So we know that children with infantile spasms have a higher level of cortical vision impairment than others. That's in the literature. He was on five anti-epileptic drugs by three months old. We know from the literature that children who are on anti-epileptic drugs for a long time similarly have vision impairments.
And then he had uncontrolled seizure activity. So here he is in a phenobarbital induced coma when he is three months old. Here's his first surgery at three months old to disconnect most of the left half of his brain. The seizures came back. He had surgery again at two years old. He developed hydrocephalus at some point during this time. Here he is at about brain surgery number seven to reconstruct his skull, in an attempt to make it bigger to allow more fluid in there.
Because his shunts could not process the fluid very well. Here's the brain before hemispherectomy-- both sides. And then here, you can see how the cavity left behind from the hemispherectomy fills up with fluid. They used to put ping pong balls in there, which is pretty crazy. So this kid's had a hemispherectomy plus, I like to call it. Because it's not just removing half the brain, but he's also had some other stuff go on.
So with hemispherectomy, you have a partial paralysis on the opposite side of the body. You've removed a temporal lobe. So you're going to have trouble with auditory processing, because that's the part of the brain that processes sound. Speech-- interestingly, the side of surgery doesn't really matter as much for speech acquisition post-operatively as we think it does. It's time seizing before surgery that really makes a difference.
So we have children who've had left hemispherectomy me as old as age 12 in our community who are bilingual. So again, side doesn't matter as much as how long they were seizing preoperatively. Executive function's going to be affected. Kids have frontal lobe removed or disconnected. So you're going to have impairment, there. Proprioception and touch is affected.
This child had hydrocephalus. So we have to wonder, is there damage to those white matter tracts or the optic nerve from that? Seizure control is 71% in our population. History of medications and an IQ range is very wide. Some children that we have are profoundly affected, while others go to college and graduate school, which is really interesting. On top of the surgery, you're going to have a lot of vision issues.
So a dense homonymous hemianopsia, ocular motor control problems from the way the surgery affected the innervation of the eyeballs. Strabismus, eye wandering in, eye wandering out, nystagmus, and possibly optic nerve damage from hydrocephalus. We see these things as well just with occipital lobectomy and with TPO disconnection. So we're not just talking about hemispherectomy, here.
This is the case study, but think about it also with the vision impairment, especially with any time you remove the occipital lobe. So let's dive into vision. Your left visual field is processed by the right occipital lobe. And the visual cortex-- remember, that very thin 5 millimeter player of the brain-- is back here. So left's visual field processed by the right side.
Right visual field processed by the left side. Real quickly, it's actually processed in quadrants. So here are the quadrants that your brain sees. And if you're working with a kid that's just had a temporal lobectomy, which is actually the most common epilepsy surgery, they may or may not have an upper quadrant loss from the temporal lobectomy.
Why is it only some kids that have an upper quadrant loss? This is because we all have different wiring of what's called our Meyer's loop, which is this loop out here that processes information from an upper quadrant. So I may have a temporal lobectomy and have no upper quadrant loss. Another child or adult may have a temporal lobectomy and have an upper quadrant loss, because their Meyer's loop is different than mine.
So again, really important to have accurate vision assessments when you're working with these kids. Because with temporal lobectomy, you would have different field loss. If you look at your vision as an island of vision, you have your far peripheral on the outside. We're all familiar with their peripheral vision. We have your mid peripheral, here, your near peripheral, and then what's known as your central field.
And this is what really hangs up our community quite a bit. This is because surgeons, especially, will say that removing an occipital lobe results in a peripheral vision loss. For you and I, as lay people, I think of peripheral vision as only being my vision here on the outside. But what peripheral vision really means in the medical world is any vision that's outside of your central field.
So if you remove a left occipital lobe, what's going to happen? You lose all this vision here on the right. But you also lose it straight down the middle through that central field. So what is your central field? Your central field of vision is what you can see when you stick your thumb straight out. Look at your thumbnail. About two times the width of your thumbnail is your entire central field of vision.
And why is that important? Because you only have 100% acuity in your central field. So when you're looking at an object, in order to see it with 100% acuity-- assuming you have 100% acuity-- you have to move your eyeballs to get the object into your central field in order to see it at 100%. Your peripheral vision here on the outside, at about 130 degrees-- this is where if you're looking straight ahead, you're looking straight ahead.
You see movement and changes of vision on the outside. But you're not going to see detail sharp beyond about two to five degrees in the middle. So again, you're looking straight ahead. You can only see detail sharp when you're looking at the object. Same thing from the side view. You see movement or changes below or above. But you only see details sharp when you're looking straight ahead.
So let's do a little test here, again. We're going to look at an airplane, here in our central vision. And we're only going to see it at 100% acuity. How do we do that? You're driving along. You're looking at this airplane, here. Now, don't move your gaze. Don't move your focus from that airplane. Keep your eye on the airplane, and something is going to appear below you.
Now, you saw that appear because it appeared in your mid peripheral or your parafoveal field, where-- what did I say? You can see changes, movement, brightness, some color. So you can look at that airplane and still see that car up here. Stay looking at that airplane. Don't cheat. Something's going to appear on the screen. Don't look at it. I'm going to have you try to guess.
Don't look at it. Look at the airplane. Now, something appeared on your screen. Is it a deer? You can look at it now. It's a fish. So from your peripheral vision, you could see that something was there. But it was not until you took the focus of your eyes and looked at that that you noticed that it was a fish.
So you and I-- this is our field of vision in both eyes. Again, here's our field of vision here. With binocular vision, this field is going to cross over. But here, again, in the middle is where we have 100% acuity. After a right occipital lobectomy or a right hemispherectomy, or a right TPO, you lose all the visual field straight down the middle.
Again, not just the peripheral vision, but half of that central field, as well. And then here's a child with right hemianopsia after left hemispherectomy or left occipital lobectomy. Again, right down the middle, there's no preservation of the central field except for half. I like to think of it as the child having contact lenses over their eyeballs.
Because adults will say, well, look into the field. Or look into the lost field. Can't you see that there? Well, even when they look at it, they can still only see half of it. Because they're missing half of their field of vision. So think of it as something on their eyes like a contact lens. That's the vision that they've lost.
A lot of people ask if the children see black in their lost visual field. What they see is like what you and I see behind us. So I don't see black behind me. I don't see white behind me. I just don't see. I lack vision. So if I think of everything behind me as behind a curtain or a cape-- if I pull that cape in front of my face half way, what a child with hemianopsia sees is really like pulling that cape halfway in front of your face.
It's not that they see black. It's that they totally lack vision. So let's do this exercise again. Now, you're driving along. But with right homonymous hemianopsia, you've lost the entire right field. Now, you look and you see something from the corner of your eye that appears. With a right hemianopsia, now, you're going to shift your gaze with your eyeballs to that thing that you see.
And now, you've lost the whole road in front of you. And this is why 50% of the states in the US prohibit driving with homonymous hemianopsia. Because you have such a loss of the visual field in front of you, you're at a tremendously high risk of hitting pedestrians that are coming into a crosswalk or cars in intersections. And there's actually research to show that that risk goes up significantly in simulated driving situations in adults who were drivers that had occipital lobe stroke.
They hit pedestrians coming into the crosswalk and cars coming in the crosswalk. So here's a kid that you're working with. Now, he sees a friend on the playground. And he's put his gaze here, on the child's face. He never sees that ball coming in the first place if he has a right hemianopsia. So you can have issues on the playground with misunderstanding something as basic as that.
Or they just don't want to play, because they're afraid. Again, they've lost half the playground in their field division. And this is when O&M is so important, especially, is with the younger kids. It's really getting them to understand this vision impairment and how to work with it when playing with other children. You're walking down the hallway. The child has right hemianopsia.
This is all that they see. So they lose all that in the hall. If this is a kid with right hemianopsia after left occipital lobectomy, I would say, they should learn to walk along that wall. So most of their visual field is seeing everything that's coming at them from the left side of the hallway. So for orientation and mobility purposes, the challenges these children are going to have in school are bumping into people and objects, tripping and falling down stairs.
Pouring beverages can be really difficult to do. They may have reduced participation in sports and recess, again, because they're not seeing the world like you and I do. They can only see half at any given time. 50% of the states prohibit driving. And then there's something called visual neglect. So in adults who've had stroke, have you ever heard of somebody that only shaves half of their face after a stroke?
This is because, visually, they're totally neglecting the other side of the face. Because the brain isn't even processing that it's there in the first place. So we see this after surgeries which removed the occipital lobe. It's not only that the child doesn't see what's in their lost visual field. The brain isn't even processing that something might be there.
They might eat only half the food on their plate, because the brain, again, isn't processing that the food is there in the first place. Interventions and training network-- and we certainly propose that this occurs throughout the school experience. I think it's really easy to conclude that a kid does real great in this scenario, in this situation at school. But you really want to be assessing them in static environments, dynamic environments like a playground, familiar environments like their classroom, and then unfamiliar environments like other parts of the school campus.
And always assessing them annually, because they may have adapted to what's going on in their classroom or their part of the school. But when you start growing up, and you have to go to different classes, or you have to go downstairs, you can start to have issues. So continuous evaluation and continuous interventions and training with an O&M specialist.
Training them to make saccades into the lost visual field-- so when they're young, get them used to always looking into that lost visual field, so they start to understand what they're missing. We had an O&M presenter at one of our conferences who talked about giving these kids a cane. I like that idea, because it lets the rest of the world know that the child has a vision impairment.
These kids have, really, a vision impairment that nobody can really understand or see. Most don't wear glasses, so it's hard to explain that they're half blind or that they can't see half the world. The issue with some of these surgeries like hemispherectomy, though, is because the child has a hemiparesis and can only use one hand. Using that hand just for a cane is hard to do.
So we don't see a lot of cane use in our community after hemispherectomy. Making sure the furniture is consistently placed in the classroom is another thing that's helpful, especially in those early years. Hemianopsia.net is a great website for this information. And I know Perkins New England also has information on their website, as well, as do we. A little about O&M as you get older.
Let's say this is a kid looking across the street. He sees mom. What he doesn't see is the bus coming. And this is a particular issue, because the children also have auditory processing challenges. And many of them cannot localize sound. They may hear the bus. They can't hear where the bus is coming from. Or they don't understand it. So again, as the child gets older, as they're starting to learn how to gain independence in their community by using the bus or going on field trips-- terribly important to have an O&M involved at all times.
Let's talk a little bit about literacy acquisition. So your central field is also important, because that's the only place where you see text. If I hold out text way out here, I'm not going to see it in my central field at 100% acuity until I get it right in front of me, in my foveal field of vision. So I'm going to have you do a reading experiment, next. I want you to focus only on the red word in this slide.
Please just focus on the red word. Without moving your eyeballs from that red word, try to read the entire paragraph. OK, ready? So the word is here. It's "the." And try to read the whole paragraph without moving your eyeballs from that red word. You might see nurse. You might see Pomfrey. You might see spreading, maybe the word damp. But really, it's impossible to read that whole paragraph without moving your eyeballs to the next word.
Why? Again, your central field is the only place where you can see text at 100 percent acuity. So the four to five letters in that central field are what you see clearly. Again, you're not moving your eyeballs. You have your fixation point at the same spot. As you move out, those letters start to reduce in acuity. So good ocular motor control, where you move from word to word so that you get it into your central field of vision, is very important.
A child with homonymous hemianopsia would be told to look at this word, but they would only see this. So a teacher of the visually impaired would train the child to look at the other part of the word, get their gaze over to the end of the world, as they're starting to learn to read. Adults who have had left occipital stroke, who were good readers prior to their stroke, describe a tremendous frustration with reading after their stroke.
And this is because-- remember now, we've lost the whole right visual field-- they're reading into nothingness. They don't know where to go in the next line. They don't know where the next word's coming from. And many stop reading altogether, because it's so frustrating. So again, the TBI will train the child to love reading, to love going to the next word, love going to the end of the sentence, love going to the rest of the paragraph.
This is a little tricky here, because we have to get out of the presentation. But I want you to see how you and I read and what our eyeballs do during that time. Hold on. Stop sharing. And then we're going to share my screen. So this is how you and I read. And we make a series of small jerky movements and linger on each word for a quarter of a second.
And by measuring these pauses, we can see exactly how we read and how long it takes us to recognize a word. So our eyeballs move across those words like that. So let me get back to the presentation. And if we could go ahead and get back into the presentation-- it'll just take a few seconds. So ocular motor control is done by the brain, obviously, to six different muscles on the eyeballs.
A lot of these children have trouble with ocular motor control. So they're not able to get their eyeballs on the words as fast as you and I can. The other issue, especially after a left occipital lobectomy, is that parafoveal field, here, is a little bit bigger in persons who read from left to right. So if I'm reading a sentence, I'm going to see not only the word "that," but I know that what's coming up next is a couple of words for me to put my eyeballs on, so that I can get them at 100% acuity and read them.
If you've had a left occipital lobectomy, a left hemispherectomy, that right side of the page is gone. So as a reader, I don't know what word I'm supposed to go to next. Because I don't even know that they're there. So this can be a particular challenge for our children. Again, really important for a teacher of the visually impaired to help train the child to start looking at the rest of the words when they're starting to learn to read in that sentence.
One more time, we're going to jump out of our presentation again. And I want to show you a child who had right hemispherectomy. And he's a great reader.
I thought I went backwards on one line.
So the left half of his visual field is gone.
That's a good return sweep. Some little regressions there. That's a tracking error. They went back to pick it up. He jumped over some information, there. But he got the question regarding-- that's a tracking error, there. And if we could get back to the presentation.
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So you can see how difficult it was for the child missing the left visual field to read smoothly. He had to keep going back and keep rereading. We see a lot of fatigue in our community as the children get older. Again, something really important for the TBI to work with is strategies for that ocular motor control, strategies for helping them read in class, and then for the teachers to recognize that by the end of the day, you're going to have visual fatigue from working on your eyes and getting them to read across the page all day like that.
Some instructional methods and accommodations that we think are helpful-- and this is supported by research. I'm happy to provide you with some information, there. We actually have a paper that keeps getting kicked back from one of the journals, but we're going to talk about quite a bit of those there once it's published. How does a child accommodate? One thing they do is head tilt.
So if I'm missing all of this part of the world-- and my son does this. If he wants to see something, he's going to tilt his head sideways. And now, that visual field is here. So he can bring things into his visual field just by tilting sideways. Another thing he will do is as you get closer, he turns his face like this. Now, I used to think he had autism.
He didn't give me any eye contact. What he was doing, though, is "I can't process what's coming in. I'm getting too much of it lost in my lost visual field. So I'm going to turn my head to the side. And now, I can at least get the gist of the entire visual scene by turning my head to the side." Some kids develop an exotropia or and eye wandering.
We don't know if that's a compensatory mechanism or if it's more related to the loss of innervation of those muscles in the eye. At this point, we don't understand why the eye does that. Some doctors will say it's a compensatory mechanism. I'm not sure we understand whether that's true. But the risk there is that you lose binocular vision when you have exotropia.
So we do encourage surgery to get the eyes aligned so that the child has binocular vision, which you all know is so important. Making text smaller-- I think a lot of times, we think that making text bigger for a child with a vision impairment is important. But really, when you've lost half that central field of vision, if you have large text, you're going to lose most of that word.
Because the letter's too big, right? You can only see part of that L. If the text is smaller though, see how I get a gist of the word better when the text is smaller. So again, evaluating the child properly, but think outside of the box. Really, training says make text bigger for kids with neurological vision impairment. That may not be the case for kids with hemianopsia.
You may want to make it smaller so that more of that is in the lost visual field. Presenting text obliquely so that they at least get the gist of the entire line of text, so that they know where to put their eyes-- something called last letter cancellation therapy. So this would be for a child with the right hemianopsia after a left occipital lobectomy.
Training them to know where the word ends, training them to know where the sentence ends, and then you would do the opposite. If it was a left hemianopsia after right occipital lobectomy, doing the first letter and training them to understand where the sentence begins or where the paragraph begins. Presenting text in a column rather than a line.
Again, if I can get the gist that most of these words are here, it's much easier if they're across. And I've lost half the sentence already just by looking at it. And then these nifty things that I think everybody has in their tool box so that they're just focusing on the sentence. Teaching the child to scan the whole page first before they're reading. So look at the page.
See how many lines there are on the page, how many words, and then start reading. Putting your finger underneath the text so that they know to follow each word, training them to do that. And then, seating them in a classroom closer to that wall-- so again, if I have a right hemianopsia, I'm going to be seated way off to the right of the classroom, preferably up against the wall.
Because then the entire classes in my left visual field. And I'm not losing anything from being there, so close to the right side of the wall. And again, opposite for a left hemianopsia. Just quickly, for TBIs and O&Ms, a diagnosis alone is not enough to trigger services under the IDEA. In order to be identified as a child with a vision impairment, the child must require specialized instruction.
So if you're in an IEP meeting, and you have a child with homonymous hemianopsia, and you say, "I don't know what to do with this kid. I've never been trained on it. I never took a class on it as a TBI. Nobody ever showed me this." And we have had this happen many times in our community. Then technically, the child does not qualify as visually impaired, because no service exists for this child.
So we've now given you the tools and some great ideas to show that there are services available. So when you're in that IEP meeting, you have to articulate that these are the services that would be provided to the child. And then that meets the criteria of the IDEA to have them identified as visually impaired under that law. This is a great paper on what they call hemianopic dyslexia.
And it really gives some of these strategies. It's by Susanne Schuette out of the UK. I highly encourage everybody to read that if you're working with a child acquiring literacy who has a hemianopsia. Just broadly talking about other neurological vision impairments, I will go to my grave saying, "please, can we change cortical vision impairment to neurological vision impairment?"
And I'll tell you why. It's because, like I shared, the cortex is really just the outer layer of the brain-- the outer 5 millimeters. You can have vision impairment that is caused by problems with the axons, or problems with the optic nerve, or other issues. So the CVI is a little bit limiting. I think I'm the only one really shouting that I want that to happen. So we'll see if that'll be changed.
Is hemianopsia cortical vision impairment? Technically, yes. You've cut out that cortex there in an epilepsy surgery or disconnected it. So yes, it's a cortical vision impairment. You can also have additional cortical vision impairment before the surgery, because of the way those axons may have been damaged from the seizures or from the brain malformation.
And then post surgical complications like infection, hemorrhage, hydrocephalus-- for my son has been worse in all of his brain surgeries-- can further damage those visual pathways, causing a neurological vision impairment. So again, if you're assessing a child post-operatively, don't just look at the surgery itself, but all of these other layers of complications-- epilepsy, medications, et cetera, that have happened that can also have an impact on vision.
We talked about how the occipital lobe of the brain is where vision goes first, right? But then it goes out. And this is called the dorsal ventral stream. The ventral stream down here below, I showed you those axons. And these streams are actually white matter connections that go from the occipital lobe to the parietal lobe and from occipital lobe to the temporal lobe to process other parts of vision, to tell you where something is or what something might be.
Beyond the scope of our presentation today, but really important to understand beyond just occipital lobectomy, how you can have issues if any other parts of the brain are removed, or disconnected, or even just from occipital lobectomy, alone. Because you're not getting the message across to other parts of the brain to process that information appropriately. So I'll say it again.
Assessments are really important. If you want more information, we have quite a bit of it on our website. If you email me at MJones@BrainRecoveryProject.org, I'm happy to answer any questions you might have. If you want to help us write some guides, we would love to have something more concrete for TBIs and O&Ms to use.
We have precisely 13. And here they come. So I'm just going to glance at them quickly.
And I think we have 13 minutes for questions.
So can you talk a little bit about the impacts of other CVI components that some children have on top of field loss? Hold on a second. I have to make this box a little bit bigger. How does that complicate things? What else should be assessed, watched, intervention strategies, et cetera, and tips for TBIs serving these children?
So that's a lot to cover in 13 minutes, because we do have other questions. But what are your initial thoughts about that?
So CVI is just an umbrella term, right? Whether we say it's central vision and cerebral vision impairment, or cortical vision impairment, or neurological vision impairment, a field impairment is just one of several categories of neurological vision impairment you might have. So I can't even guess what the other vision impairments a kid might have that are brain based, because there are so many.
Whether it's figure ground discrimination, or if they have scotomas because of optic nerve damage, so they're only seeing chunks of information. So I would say, first, assess the child. Have an MRI, if needed, so that you understand where the damage is. And really, a good TBI and a good O&M assessment should be able to tease out some of those neurological vision impairments.
I know Dr. Roman Lansky has one assessment. Dr. Gordon Dutton's book also lists several different types of neurological vision impairments and assessments also, for them. So again, it's CVI or NVI, whatever we call it, is really, really a very, very big category of impairments that are really difficult to address and assess.
Thank you. Once a student has developed some effective compensation strategies, do they still require specialized instruction?
So personally, I don't think you can ever graduate a kid out of help with a TBI and an O&M throughout the educational experience for a child with homonymous hemianopsia. They may have compensatory strategies sort of in their pocket for orientation and mobility in the static environment of their classroom. Do they have it for orientation and mobility in the dynamic environment of their playground?
Which the structures may be in place, but the kids are changing all the time. There are new friendships. There is the cafeteria. There is literacy, which we spent a lot of time on today. As you're acquiring literacy, now, you're moving up the chain of the lexile level. You're increasing your knowledge of words. You have to understand how that loss of half that central field is going to affect that literacy acquisition throughout the educational experience.
So I think that as the child gets older, keep assessing them. More assessments to really determine what their needs are-- I don't think that there can just be a blanket, "oh, they're great. They're on the playground." It's really much more than that.
Thank you. This question might also be for for Dr. Lawrence. So if you still have a phone or a microphone, the question is about-- is there a certain age where a neuro-ophthalmologist evaluation is beneficial? And maybe the part B of that question is, is there a certain time after surgery when that is most beneficial? That's my additional part of the question.
I think Dr. Lawrence is off the line. My son has seen a neuro-ophthalmologist since he was six months old. His first surgery was at three months old. I am amazed by what my neuro-ophthalmologist can get out of my son. My son is totally non-verbal. He's quite intellectually impaired. And it's a long appointment, but a good neuro-ophthalmologist like we have-- it's Dr. Mark Borchert at CHLA.
He's terrific. He can determine his acuity level. He tells me, based off MRI, which he reads, that now, we see some optic nerve damage. So in addition to the homonymous hemianopsia, he has additional cortical vision impairment or NVI that, unfortunately, we can't tell exactly what it is. Because my child can't say to me, jeez, all of a sudden now, I can't see how fast a car is moving.
Or I can't distinguish between letters on a page, because of his verbal impairments and his IQ level. But my advice, if I can give it-- I'm not a doctor-- would be to seek out a neuro-ophthalmologist as soon as possible. One of the problems that we have with surgeries that remove the occipital lobe is that you can have a loss of acuity over time. The brain is no longer receiving the message from the eyes.
So you start to get degeneration of the retinal ganglion cells in the eyeballs, as well as the tract. So some research is showing that, over time, acuity in the eyeball opposite the removed occipital lobe starts to decrease because of this loss of--
Thank you. And I do see Dr. Lawrence is still on the phone with us. I don't know if there's anything you want to add, particularly about evaluations, there.
So really important to be with a good neuro-ophthalmologist.
Valerie, if we can give her a mic back-- go ahead. You're open.
Yeah, I totally agree with Monica. It is never too early to see the ophthalmologist. If you're in an area, if the family is in an area where there's not a neuro-ophthalmologist, a pediatric ophthalmologist, or an ophthalmologist who understands children's CVI, NVI, it's really important. Because remember, even though this is becoming more common, it's still relatively rare.
And the neuro-ophthalmologist may have more of an understanding of what's going on over a general ophthalmologist or a pediatric ophthalmologist who doesn't have the experience. But looking at the information that's out there on our website is so, so important for all of you to look at and your families. I use it all the time.
Even in rural Kansas, I have four babies right now who have had these procedures done. And we're trying to train our early intervention team how to properly assess and intervene with the children. And the earlier, the better. You don't wait until they're school aged. You don't wait until they're having problems. You already know by definition the child has had a part of his brain removed or interrupted, plus the damage that may have been done prior from a seizure disorder.
Or also, the seizure medication that the child's on may have some ocular side effects. So the sooner, the better.
Thanks. And I'll let this be our last question, because it dovetails really nicely with this comment about early intervention. So working with the really young ones, the zero to three, as you're starting to increase in visual skills-- Monica, have you seen activities or teaching games that work with that really young child to help them?
So I think it's easy to see how in your own home, my kid does fine, right? Because he's familiar with the furniture placement. He's familiar with the layout of the house. When the kids are younger, though, you want them to start getting used to dynamic environments. So getting them out on the playground, understanding how fast kids are moving around there, training them to scan into that lost visual field as much as possible.
Don't say things like, oh, you didn't see that. Oh, look down there. See what's there. Remember, they don't even know it's there to begin with. So you want them to just understand, I'm always looking down. I'm always looking over, so that they can start getting the gist of the whole scene. Maybe when you're coming into a place that's new, before you walk in, before you go up to somebody, get the gist of the whole layout and then go in.
And not only that that can change in place to place, but also day to day, hour by hour. Like Dr. Lawrence was saying, some medications can really affect fatigue, or muscle control, or things where, in the morning, you might see the child really responding well. But later in the afternoon or tomorrow, it could be a different day. It's about three minutes until.
I'm seeing some thank you's come through. So that's always nice. We appreciate the time that you guys take out of your work day and your teaching schedule to come to these webinars. Please let your colleagues know that they can also view the recorded session later on at any time. These recorded webinars make really great in-service opportunities.
They're good to share with families that you're working with or even administrators as a way of just learning together. So there's a lot a lot of thank you's coming through. And we really appreciate your time. And I want to thank Dr. Lawrence as well for taking some time out of the clinic today to dial in. It's valuable to have your expertise as well.
I will then close up and say thank you, Monica. And on behalf of all of us on this team, Valerie Welland, Dr. Marizata, myself. And we will see you in March. We do not have a webinar next month. But we will be back in March. So stay tuned for that. Thank you.