Tuesday, November 17, 2009

Neurosurgeon Appointment is Booked

As I was told to do last week, I called the neurology department on Monday to find out when an appointment was booked for Joey. A very kind lady looked him up on the computer and told me that the neurologist attempted to triage his referral on Friday but was missing some information, which was received later in the day from the pediatrician but now it has to be re-triaged and this wouldn't be done until Friday of this week. I asked what information was missing and she told me it was the MRI results. Ummmmmm, you mean the MRI that was conducted AT Sick Kids?!?! I was in disbelief, this was turning into another comedy of errors.

I immediately called the "Patient Representative" department of the hospital. Let me just say this...if you are ever dissatisfied with anything that happens in a hospital the first thing to do is contact the hospital ombudsman, or patient advocate/representative department. The very kind lady who took my call got things done, and quickly. She managed to find out that we had been booked to see a neurosurgeon on January 8th, and told me that I would be receiving a call tomorrow morning from the neurosurgery/neurology clinic supervisor to discuss what was happening with a referral to a neurologist. We still need to see/talk to a neurologist prior to January 8th as we have a million questions about the MRI findings and no one to explain it to us.

I was satisfied with all of this for now, and then to my surprise I received a call on my cell phone at 5:30pm from the Chief of Pediatric Neurology. After just having read her biography and list of awards and achievements on the Sick Kids website I felt honoured that she actually took the time to call me herself, almost like I was getting a call from the Queen or something! She spent a good 20 minutes on the phone with me...her initial assessment based only on the MRI report in front of her and nothing else was that an arachnoid cyst like Joey's are somewhat common, they are very conservative about treatment and likely would just watch it closely for growth or change with the support of a neurosurgeon. She also said the changes to his white matter were very non-specific. I asked her if it would make a difference if there was no evidence of this cyst or white matter changes on his MRI at 7 months of age and she was confused, since this report specifically says there is no past MRI for comparison. I advised her that there was, in fact, another MRI done at RVH in Barrie and that the report from that MRI was completely normal. Add this to the comedy of errors! She did say that changes things quite a bit, that it would indicate obvious growth over the past 3 years and that is when they consider surgery. She said that while it is routine to the neurosurgeon (burr a small hole in the skull, drain, close) it is major surgery for a child.

The bottom line is that she was unaware we didn't have a neurologist and agreed that we needed to meet with someone ASAP. She said she was going to leave a message for her assistant to deal with this first thing in the morning and get us an appointment with the very first neuro we met with when Joey was 6 weeks old, since that would be a "follow up" appointment rather than a "new patient consult", the latter taking much longer to schedule. She assured us it would be a matter of days or weeks before we could see him, not months, and certainly before the neurosurgeon consult in January. She is going to ask that a copy of the MRI from 3 years ago be sent to this neuro's attention so that he can compare the images from both to get an accurate picture of what is going on.

So now it's time to compile my list of questions to ask the neurologist, and I do have many! I hope he books off a substantial amount of time for our appointment :)

- P, J, J & B

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