Where to begin??? We met with the neurologist. She is very nice and very professional. She was a little puzzled as well, as to why the radiologist had not measured Kaylie’s herniation. She asked if we had the MRI CD, of course I did. She looked at it, and she measured the herniation to be 9.04mm. She said but that could be a little off… due to radiologist use special computers to measure precisely. Like I have said before… measurement does not matter. She was concerned about the crowding of the cerebellum & tonsils of the brain and the spinal cord. There should be space between them, for spinal fluid to flow. She did not say she was blocked, but there was hardly any space in certain areas (because there is more than one area where spinal fluid flows). Before I even asked…. She is scripting out the spinal MRI, besides the fact of looking for a syrinx, but also for tethered cord. I asked if a CINE MRI (measurement of spinal fluid flow) could also be done, she said she would look to see if she can have it ordered. She says typically a neurosurgeon does them a little before surgery. I do not have the appointments yet for the MRI, their office will make the appointment, and then call us with the date/time. I know they already know this, but I told them anyways… we will take first available and it doesn’t matter day or time.
I asked her how many cases she had currently with Chiari that are symptomatic (that means kids that have chiari, they were sent for MRI because of symptoms happening…. Not accidently found, and present NO symptoms) she has none with symptoms. She has treated 2-3 that have had decompression surgery…. So meaning they probably had a surgery somewhere else, and then came to her for continued care or it was during her intern years. I forgot to ask when that was. I don’t know if she is still caring for them. I asked her if something came up, if Kaylie needed surgery, who would she send us to. She said OU Children’s. I then told her, that we would not be going there, we already have appointments to see specialist in chiari at John Hopkins and The Chiari Institute. And if she needs surgery we will have one of those places do it.
She has also decided to take Kay off the periactin medication. The medication was to prevent headaches from happening. Because she still had headaches while on that medication for the past month, they are now going to put her on Topamax , nightly. Topamax is generally used for seizures, but can also be used in preventing headaches. It takes a couple weeks to kick in.
So, this is where we are at…. Waiting for the appointments of the next MRI.