Thursday, June 4, 2009 2:57 PM
So we are still waiting on her doctor to call us back, but here is the “low down” from our much anticipated appointment this past Tuesday. They had not been able to have their conference yet, but it was supposed to take place Wednesday morning. What Dr. Mikati does know is that to clearly determine where the seizures originate and how much area of her brain is seizing they would need to do Intercranial EEG monitoring. the placement of those electrodes is major surgery in and of itself. she would have about a week of monitoring, then they could decide how to proceed with surgery. The surgery she would need would be a hemispherectomy (on her right side) http://en.wikipedia.org/wiki/Hemispherectomy
How little, or how much needs to be removed depends on the EEG results. Ideally they would have a very small area to take out. But they know that the right hemisphere is not properly developed. Dr. Mikati used the diagnosis Cortical dysplasia
The intracranial EEG would help the team decide exactly how to proceed. They would want to take out every part that is seizing, but obviously to not leave Rebecca in worse condition than the leaving things alone would cause. But if they don’t get out all of the brain matter that is seizing, she would continue to have seizures. As the Wikipedia page says, we will expect her to have limited use of her left hand after surgery. But she doesn’t use it much now anyhow, its taken years of OT to get her to use it at all.
We know that the surgery has a success rate of anywhere from 50-80%, but that the doctor thinks in Rebecca’s case it would be closer to 50 than 80.
Relying on medication alone, she has a chance of becoming seizure free somewhere in the low single digits.
Even the other surgical option, a Vagal Nerve Stimulator,
http://en.wikipedia.org/wiki/Vagal_Nerve_Stimulator only has a success
rate in the low teens. (and has major side effects and can’t be removed).
Please pray for David and I as we make what is one of the hardest decisions a person can be asked to make.
David said it best the other night – the only harder decision a person could be asked to make would be when to “pull the plug” on life support. We are being asked to allow them to remove part of our child’s brain – with the hope it would stop her seizures. The recovery would be long, and painful
Please, please pray for us.
*Quick note a few hours later* They weren’t able to have the conference yesterday as I was told because the Neurosurgeon was out of town. Evidently the Nurse/Secretary didn’t see it important for him to attend since most of the other doctors were attending. (I want to strangle that woman, because now we have to wait a WEEK before they have their conference)
Monday, June 15, 2009 2:45 PM
So today – we FINALLY get the call (I had to call a few times to harass them because they were supposed to call Friday, and I’ve been sick with anxiety waiting). They aren’t 100% certain all the activity is localized to one side of her brain. So now David and I have the heartbreaking decisions of deciding to proceed with the intra-cranial monitoring or not. And IF it looks like all the seizure activity is coming from the right side – do we proceed with surgery? We’ve known for fact that the right side of her brain did not develop properly. today the doctor said something about the left side having some structural abnormalities that showed up on the MRI (we have never heard this before). We’ve got meetings Thursday with both the Neurosurgeon and the Neurologist to discus the matter. So we really don’t know anything more than we knew a few days ago 😦 Hopefully we’ll know on Thursday were we are going from here.
Thursday, June 18, 2009 6:56 PM
So the latest and greatest…..
We met with Dr. Grant – the neurosurgeon, and he gave up ample time to sit, talk, discuss, ask questions.
Actually, I was fairly impressed with the time he gave us. He of course had answers to many of our
questions before we even asked them. He was glad we had a list of questions.
He helped us have a really clear understanding of the “plan” (I say plan because we have not committed to anything. also, he was great about saying how they can advise David and I, but ultimately it is our decision. But as we progress, everything is a team decision. No decisions would be made without consulting with us. (I’m so impressed because of how often we’ve been blown off, only learned of things through “eavesdropping” as the doctors talk outside our door, etc. This was a wonderful change of pace).
We also met with Dr. Mikati, her neurologist. He is a little more “gung-ho” to go ahead and proceed.
Supposedly he is going to have the secretaries in the department call us to set up surgery. (I really need a good shocked smiley face to insert here!)
So the “plan” as we’ll call it, is to do some inter-cranial monitoring. They want to insert these strips into her right and left temporal lobe (and I think perhaps it was the frontal lobe?), to first determine is the majority of the activity is occurring on the right side. The hope would be that if she had, say, 20 seizures while being monitored then all 20 would occur on the right side. But if she has 20 seizures and 18 are on the right and 2 are on the left, they might proceed, under the hope and presumption that it would stop most of her seizures and the remaining few could be well controlled with medication. The worst cases are either that they see 20, and quite a few occur on the left. Or that the ones seen on the right side are not her typical seizures, but the ones seen on the left are. Again – we know the damaged side is the right hemisphere. The technical term is Cortical dysplasia – it just means that the brain didn’t develop properly. No diseases, it just didn’t form properly. The data they have suggests the seizures are occurring on the right. but you don’t just proceed with removing part of the brain until you are sure.
So – after the strip monitoring – as long as we see scenario 1 or 2 – vast majority of her typical seizures
occurring on the right side, then they would proceed with placement of a grid. The grid goes onto the surface of the brain and is a much more major surgery. It was explained to us, that they can do the motor mapping while she is still under general anesthesia. Because she is so young, non-verbal and doesn’t follow commands well, they would use different kinds of mapping. An adult can be told to do things like “say cat”, or “Wave your right arm”. Not so much with Becca. But we were assured that they do take into consideration all of the motor areas and other important areas. (Speech is on the left side of the brain). so after monitoring with the grid for a while (week?) – she would go back into surgery and they would take out the grid. At that point, IF all the data looks good, then they could proceed with surgery. At this point we have no way of knowing how much they’d want to take out. If the data looks shaky, or indicates surgery can not proceed, we can consider a Vagal Nerve Stimulator. But that device has a much lower rate of seizure control. And, considering Rebecca’s seizures we doubt it would be of little help.
So now, David and I have some major decisions to make (not that we haven’t been thinking about this for weeks). Its just finally coming down to decision time.
Sunday, July 5, 2009 3:24 PM
Becca is having a really hard time with the mornings lately. I don’t know if it is because we switched her to the Keppra XR (extended release) and she only takes Keppra in the morning and it isn’t staying in her system like it should, or if something else is going on. But lately she is having some really bad spells first thing in the morning. Spells bad enough to freak me out! I’m going to call her neurologist tomorrow to see what I should do. She did enjoy the fireworks last night. We had bought some fireworks and set them off in our driveway. Well – Fireworks according to NC standards. Which means glorified sparklers. but hey – they are pretty. Rebecca liked them – except some of the noises did startle her. The brightest, flashing lights are the ones she liked best. The kinds that give most people headaches. It is hard to believe that just one year ago she was so sick because her shunt had failed. We didn’t know that was what was making her so sick and so lethargic. But a year ago she could barely stay up for an hour at a time.
this year she is walking, playing, and doing pretty good (except for first thing in the morning).
We have a surgery date – for the doctors to place the intercranial strips. That surgery is August 4th. We don’t know how many days they will monitor her that way. Presumably after they monitor her that way for several days she would have a 2nd surgery to place a grid on brain surface to do motor mapping and to pinpoint precisely where the seizure originate. the grid would not cover the entire brain – but only a portion of one hemisphere.
I will keep everyone up to date through the entire surgical process since Duke has wi-fi access, and I take my laptop with me when she is in the hospital.
Right now, we all just need prayers to get through the next month to get to the surgery date. As you can imagine, anxiety levels are fairly high.Rebecca will start back to pre-school in a couple weeks, and go to school as planned, until her surgery.