June 10, 2010 – post 1

The latest news on Lisa is that she will not need to undergo the subdural grid surgery, so we do not need to stay in Cleveland the next two-three weeks as expected. We don’t have a date for the actual upcoming surgery, but expect to hear something in about two weeks.

More later.

June 8, 2010 – post 3

Personal Fears and The Unknown

I’ve been fascinated by the idea that the function of the right temporal lobe is not very well known. There is an awful lot about life that we don’t know: what’s the difference between creative types and less-creative types? (I don’t believe there are any non-creative types.) What’s the difference between atheists and believers? Between nerds and sports fans? Between consumers and producers? “Personality” of course, is the generic answer. But, come on. That word covers a lot of territory. Inborn traits. God-given mission. Chemical predelictions. Which is it? All? None of the above?

I found some fascinating bits when I was researching right-temporal lobe function. One of the things I found is that some scientists find religious ecstatic experiences to be related to right-temporal lobe dysfunction. There is also some evidence that musical memory and pattern recognition reside there. This is scary when talking about a kid who wants to write comedy and one of whose favorite pasttimes is listening to Weird Al’s parodies.

Would most people miss their musical memory or their “feelings of detachment, ineffable contentment, visualizing a bright light recognized as the source of all knowledge, and seeing ‘Jesus Christ'”? Who knows? And are these scientists even correct in making that connection? Who knows? Do I think Lisa’s quality of life will be better or worse after surgery that puts these things at risk? Better. I still think it’s the right call. This is all still theory anyway – I don’t find any evidence (in the bits of medical information I can get to on the Internet anyway) that says “take out the lobe and lose your ability to enjoy music”. But, it does give me something to be concerned about.

If any of this is interesting to you, here’s some links you might want to look at.

EXCERPT: “Many of the experiences in temporal lobe epileptics involve phenomena such as deja vu, jamais vu, memory recall, and visual and auditory hallucinations.(Palmini 1992, So 1993). Feelings of religious ecstacy (Williams 1956) and double consciousness, meaning the simultaneous experience of one’s ordinary consciousness and the perception of another reality are again linked to right temporal lobe epilepsy.(Mendez 1996). Religious conversion is also described. (Dewhurst 1970). Finally, Morgan (1990) makes a direct correlation between the religious ecstasies reported in the works of Dostoyevsky and seizures caused by a right temporal lobe astrocytoma. The latter involved feelings of detachment, ineffable contentment, visualizing a bright light recognized as the source of all knowledge, and seeing “Jesus Christ”.”

EXCERPT: “Right Lobe – Mainly involved in visual memory (i.e., memory for pictures and faces).”

EXCERPT: “Right side lesions result in decreased recognition of tonal sequences and many musical abilities. Right side lesions can also effect recognition of visual content (e.g. recall of faces).”

EXCERPT: “Temporal Lobe Damage: If the right temporal lobe is damaged, memory for sounds and shapes tends to be impaired.”

June 8, 2010 – post 2

Meeting The Surgeon

We met Dr. Bingaman this afternoon. He’s the surgeon who will be doing the actual temporal lobe operation on Lisa. He described to us what would happen, how long she’d take to recover, and what we could expect the outcome to be. We’re all confident that this is the right thing to do.

They want to take out about 4 cm. of the temporal lobe. She’ll be in the hospital for a few days after the surgery to make sure everything is OK, then she can be discharged. She’ll have several weeks of recovery, mostly getting through headaches and some rehab of a jaw muscle they will have to cut through.

He answered all of our questions and set our mind to rest about possible side effects. It seems like the right temporal lobe is a bit of an unknown area, so there are no clear side effects to expect. This is good news. Memory, word recall and other language functions should not be affected.

Lisa’s very excited and we want to see how soon we can move forward and get the actual surgery done. The dates have changed since we are not doing the grid implants, so we may be home in a couple of days to wait for our next admission date. We’ll see.

June 8, 2010 – post 1

The Plan Going Forward

Lisa’s primary doctor, Dr. Kotagal, came by this afternoon to talk to us.

The team met this morning and reviewed Lisa’s case. Their suggestion is to go ahead with the surgery and remove part of her right temporal lobe. Since it’s on the right side and she is left-side dominant, it should not affect memory nor language. The function of the right temporal lobe seems to be a bit controversial and mysterious – more on that in a separate post.

Dr. Kotagal let Jean and me see the MRI and CAT results. He also showed the 2005 and 2008 MRIs side by side with the 2010 MRIs. We saw that the right side is significantly different than the left. There is some scarring (also called hippocampal sclerosis) evident.

The team is saying that the area is already affected and not functioning as it should. The is based on the tests and also on Lisa’s neuropsych tests in 2005 and 2008. It’s reassuring to us and to Lisa. They’re basically proposing that “we want to remove tissue that is already not working and that is probably causing the seizures”. They did say that tissue like this is a known epilepsy source in patients, so that’s another strong argument for the operation.

Dr. Kotagal also said that her case is “not straightforward”, which is exactly what we say but it’s good to hear it from a doctor. He said that in a more ‘typical’ case, the success rate with this kind of surgery if 70-80%, in Lisa’s case it’s more like 60%. She will probably continue to have auras and will remain on medication for the rest of her life, but the primary seizures should be under control.

The scans also showed some abnormalities in frontal and occipital lobes, but not enough to be concerned about.

Dr. Kotagal also let Lisa see the MRIs which was unexpected and “interesting” (her word) for her.

They have scheduled an MEG test for tomorrow – this is a magnetic EEG which will show more detail than the EEG she’s currently hooked up to. They decided that implanting the grids would not givem them much more information, so it won’t happen. This is good because it will avoid 2 pretty significant surgeries (one to put them in, one to take them out).

We did ask the question about whether it would have an impact on her migraines and he said the jury is still out on that question, it might and it might not.

It won’t have any negative effect on her ability to drive, though, which is great.

The only down side we see right now is that they might have to take more tissue than they anticipate which might affect her vision. She may lost some upper left side peripheral vision. Lisa has a friend who had a surgery that was a bit deeper in the occipital area and she lost the entire left field vision from each eye, but she’s adjusted to it and told Lisa that it isn’t that bad.

June 7, 2010 – post 1

“Waiting, waiting, waiting. I’ll never get out of here. I’ll die in Casablanca.”

Ugarte to Rick in Casablanca. Jean and I were in the cafeteria having a bite and that line came up. We’ve been here six days and it feels like forever. Lisa is going stir crazy.

Jean and I have developed several theories that could be used for Ph.D. theses in neurology – the effect of sensory deprivation on seizures, the use of WII as a therapy tool, the possibility of Virtual Reality headsets as a tool for inducing seizures, etc. The artificial environment of a hospital room is probably not the best place to isolate someone when trying to produce the kind of brain activity that might lead to a seizure.

This is a short entry, I’m trying to sneak one in between dinner and watching TV with Lisa.

June 4, 2010 – post 2

Musical Interlude

Tom Richards is on the Child Life team here at the Cleveland Clinic. He was here last time we were in (Nov 2008) and we remembered each other. After we talked on Tuesday, he let Brian Fisk know we were here and Brian showed up today with his guitar and a stack of sheet music.

We met Brian last time and he’s a real treat. He’s a medical student (though he may be a doctor by now, wish I’d asked him that directly) doing research here on breast cancer. And he’s a musician. He came to the room with his Johnson guitar and played some of his and our favorites. The Beatles “Hide Your Love Away”, “Me and Julio”, “Brown Eyed Girl”, “Blackbird”. He introduced me to a few new songs from musicians like Jason Mraz, Jack Johnson, and Fionn Regan, really cool stuff.

Lisa and I did Wonder Drug for him back in 2008, we skipped it this time and instead did a trio on CSNY’s “Teach Your Children”. What a great thing, to be bringing music room to room on the ward.

Brian was learning Dylan’s “Don’t Think Twice” and played that for us. I like the way he takes these song and doesn’t just cover them, he does a nice job of making them his own.

When he finished in our room, he headed across the hall to you younger kid’s room. When Lisa and I got up to walk down the hall, he was playing “Old McDonald”. The kid and his younger sibling were loving it and singing along.

June 4, 2010 – post 1


We are now in the ‘sit and wait’ portion of the visit. We all remember this from last time. The first few days, there is a lot of activity. You’re busy with discussions, hooking up the EEG, tests and scans, finding the vein for her IV, and settling into the room. There’s the sense that you’re accomplishing sometime – you are on the edge of the investigation that will lead to the diagnosis, then the treatment. It’s not quite Christmas morning, but there’s definitely a feeling of anticipation and optimism.

Then, the waiting starts.

All day today, Lisa has been laying in bed or sitting in the armchair, watching videotapes, working on her stories, even breaking up the monotony by taking long walks to the big aquarium, the Game Room or the Ronald McDonald lounge. But still, it’s just plain dull, sitting and waiting for something to happen.

The way this works is that she is connected to the EEG all the time. She has a button she can press when she feels an aura, which, in her case, typically precedes a seizure. When the button is pressed, a fleet of nurses come into the room to assess her and the monitor marks the recording so the doctors can go back and see what was happening in the minutes before, during, and after she pressed the button.

She’s pushed the button several times today. Three or four times, it was followed by throwing up, several more times (later in the day), it was accompanied by panic feelings and fluttering stomach.

This is beginning to look like the old days – Kindergarten through Middle School – when her symptoms were alternately throwing up and panic attacks. Maybe the brain is changing again? Or maybe this is something else. We don’t know. So, we wait.

There is nothing we can do to speed things up, to move them along. Her seizures don’t happen on demand, they’re not like clockwork. We can’t do anything but try to be patient. I wonder if this is what it was like being an expecting father back before we were allowed in the delivery room. Pacing back and forth, wondering how things were going “in there”, watching the door, waiting for any word. Probably not exactly, though. At least with childbirth, you know something is going to happen. With seizures, we could be here for days or weeks and leave with nothing.

And as the waiting goes on, the uncertainty builds. Will she seize at all? Has she outgrown the seizures and we just don’t know it yet? Do we even have a problem to deal with? Maybe this is all psychological? The frustration leads to second guessing ourselves and to doubts.

At times, it feels to me like we’re dealing with some feelings of failure or even guilt – as though she should be producing something and isn’t. As though we’re wasting these peoples’ time. As though we aren’t sick enough to be here.

It’s reassuring to hear the stories of other kids who come in for monitoring and don’t get the results. There’s a young man down the hall who was doing push ups in his room in an effort to stress his body and force a seizure. It’s not working. The nurses brought in strobe lights for Lisa to try and produce something. It didn’t work. We’re keeping her awake until 3 every morning, then waking her up at 7 or 8 hoping that the fatigue would help push her into a seizure. Nothing.

The frustration makes us want to just get out of here. We want to just get out of here, to go home and get on with our “normal” lives.

The thing is, Lisa’s life isn’t normal. “Normal” kids don’t have blackouts and hallucinations. That isn’t what “normal” is. We have to keep this in focus. And that’s the beauty of the system here. Jean and I got way for about 45 minutes to the cafeteria and talked about it. Where are we? What’s going on? And the thing is we just plain don’t know. This is a pre-surgical evaluation, this is a fact-finding mission. We came in prepared for surgery and ready to make the best of it. Maybe she won’t need it. Maybe we’ll find out that something has changed and she isn’t a candidate for surgery. Maybe…maybe anything. We don’t know and we can’t know right now.

So, we’re trying hard to just trust the process. There is a team of brilliant and experienced people gathering information from the EEG, from the PET and MRI and Spects, from talking with us, from listening to us. And they’re going to get together with us and discuss what’s the best plan of action.

Plus, there are a lot of people praying for us and sending other positive energy, love and support our way. We’ve got the wishes and prayers of a lot of good people with us, and we’ve got a daughter who has an incredible amount of faith in a God who is going to help her get through whatever this trip turns out to be.

You can’t ask for more than that.