Testing 1...2...3 — leslie thomas

Hey there, Adam here, making my first ever post after having the computer sat in my lap by Leslie and her saying, "Here ya go." So here I go...

Last week was the beginning of a series of tests that were recommended by our neurologist that we felt would give us some clarity on whether or not we should move forward with surgery. Since Chiari can manifest itself in so many different ways, it's hard to tell what is being caused by the Chiari and what is not. We had already been told by our neurosurgeon that she is a candidate for surgery due to her overly sensitive gag reflex and her tendency to vomit more frequently than the average child (tons of fun!). But for us, we needed to exhaust every resource before jumping into brain surgery with our 2 year old. And besides, he's a neurosurgeon, of course he is recommending surgery. So in our appointment with the neurologist, he noticed that her reflexes in her right leg were off and that she seemed to be compensating for it when she walked. He said it could be because the Chiari was compressing the nerves in the back of her neck, which were not allowing her brain to talk to her foot efficiently. He said there is a test called an Evoked Potential Study (EPS) that should be able to tell us if this was the case. There it was, finally hope of some objective evidence to tell us clearly that surgery was necessary. He also scheduled us for an Auditory Brainstem Response (ABR) test to see if the Chiari was having the same effect on her hearing, as well as a 24 hour EEG to investigate the seizures.

So last Friday, we packed up the whole family, along with Leslie's longtime friend Libby, and headed to Cook's for the EPS. When we got there, they led Henley, Leslie, and me back to a testing room where we were met by a gruff old man who was at least 70 years old and weighed in around 250-300 lbs. From the beginning Henley was not so sure about him, despite his attempts to endear himself to her. I have to point out here that in all that Henley has gone through, from numerous pricks for blood to IV's to MRI's to a full out hospital stay, she has done it without even so much as a fuss. But the way this guy was putting the electrodes on her seemed very rough and his hands were shaking the entire time he was doing it, which made Henley very uncomfortable and nervous (and made me feel like punching him in the face). Leslie, who is not afraid to mince words, at one point even asked if he could try to be a little gentler. Needless to say, it was a very tense and uncomfortable 15-20 minutes to start the procedure. Once all the electrodes were placed on her head and neck, he then placed a device on her left wrist that sent out an electrical pulse that made her thumb move. He then monitored the brain activity on a computer screen for about 10 minutes. He continued to do this on her right hand, then her left leg without any real trouble. When he got to her right leg, he had all kinds of problems making a connection. He moved the electrical device a few times, and then ultimately had to turn up the intensity of the electrical pulse to get her foot to respond. Of course, Leslie and I just looked at each other while this was going on and we both knew what the other was thinking, that this had to be because of the Chiari. Of course, a doctor still had to read the results and give his official word, but we both felt like we had our answer.

In the middle of all this, Libby is out in the waiting room with our other two children. Luckily, we were at Cook's and towards the beginning of the procedure I went out and walked them down to the main part of the hospital where there was an indoor playground. All the procedures ended up taking around 2 hours, so we were very thankful that Libby was there to help. Don't know what we would have done without her.

You'll notice that I said procedures because originally the ABR was scheduled for the following week along with the 24 hour EEG, but the tech said that since she was already hooked up he could go ahead and do it. So we agreed and he got her all hooked up by placing what looked like giant headphones over her ears and then wrapping them with ace bandage to keep them on. Henley was not happy about it at all, but luckily we brought the iPad which had all of her favorite cartoons on it (don't know what we would have done without the iPad either!). The ABR took about 20-30 minutes and the tech said everything appeared normal. But we felt like we had received the information we needed and sought out the neurosurgeon's nurse to start looking at surgery dates. It was very heart wrenching and nerve racking, but we ultimately felt at the time like it was truly the best option and where God was leading us.