<----- Here is the MRI scan at diagnosis back in 2003. It shows an 8-10mm Tonsillar Herniation.
What is Chiari Malformation?
Wednesday morning NJ and I got up early and caught the shuttle that runs from the RMH (Ronald McDonald House) to the Hospital. (Comer Children's Hospital in Chicago)
We were taken back right away. They explained that because of the length of the MRI scans they wanted to sedate him. Instead of General Anesthesia for MRI scans, they now liked to give some kind of medication through IV. It kept them asleep and didn't have as many side effects that General Anesthesia has. (Less vomiting upon waking up and there was no breathing difficulties associated with it) I agreed and they attempted to begin an IV line. 6 pokes later we all decided enough is enough and he was given a mask and immediately drifted off to sleep. (He was NOT a happy camper by that point!!)
Once asleep they got the IV in right away. They would be looking at his Brain, Neck and Spine and expected it to take about 2 hours. I headed out to the waiting room where I sat and waited... and waited and waited and waited. I watched so many people come in for their tests and leave. I was starting to get really anxious. One of the moms I met at the RMH surprised me and came in to wait with me. Words cannot express how nice I thought that was of her. It was perfect timing too, just when I was officially about to lose it. Her son G has a Chiari Malformation and they've been in my shoes before. Nearly 3 hours later, they finally called my name and I was let back to see him. He had a very difficult time waking up and didn't really care to eat or drink anything. I was sure he was going to get sick once he took some apple juice, but he never did, thank goodness!
Thursday was our appointment with the Neurosurgeon. I'd been warned by many of his other patients that Clinic Day (Thursdays) was terribly busy and because we were new patients we could expect to wait for many hours. I was fully prepared to wait the usual 4-5 hours. We'd brought books, handheld games, art, food and drinks. We checked in and sat down to make ourselves comfortable.
Much to my surprise we were immediately called back. WOW! At that point I thought to myself:
"Okay, so I guess we're going to wait back in the back room for hours and hours?"
NOPE! One of the resident Doctors came in right away. I can't remember his name, but he was a young Asian man. He was nice and listened to all of NJ's symptoms and reviewed the old MRI scans (One can be seen pictured above) that I had brought along with us. He excused himself and once again, I thought:
"Great, NOW we will sit and wait."
.....Only we didn't! Maybe 10 minutes later, Dr. Frim opened our door and walked in. I recognized him from the photos on the Internet. Just as he was about the close the door, a little girl of about 5 came running up and grabbed onto his leg. She was so excited to see him! He leaned over and picked her up, continuing to chat and play with her. It was very clear at that moment that this was no typical Neurosurgeon. He finally put her down and promised to come see her after he was finished with us. He then closed the door, sat down and made himself comfortable.
Such a striking contrast from our first Neurosurgeon at the Denver Children's Hospital. That Doctor literally spent 30 seconds with us. He was in, out and wouldn't have given us the time of day if we paid him. (...oh wait, we did pay him!)
Not Dr. Frim.
Dr. Frim answered all of my questions, offered his opinion and gave me all of the pros and cons. He spent a lot of time talking and joking around with NJ, which I really liked. He noticed NJ had on a Denver Broncos shirt and joked with him that if we were Bronco fans, he wasn't going to be able to be his Doctor! (He was kidding of course) I think on surgery day, we'll have to find some Bronco tattoos and put them on NJ's neck just to mess with him!
<---- Here is the 2008 MRI scans showing a 12-13mm Tonsillar Herniation
The new MRI scans were not too different than the old scans, but scans can't show everything and so we must look instead at the progressively worsening symptoms. Dr. Frim sees all of NJ's symptoms in his Chiari Patients and sees many of those symptoms decrease and/or dissapear after surgery. While there are no guarantees, there is hope.
It was a good decision to travel to Chicago. We loved the Doctor and his staff! We are at peace with our decision to move forward with the surgery. It's strange to write that, but we really are. My husband and I are more concerned with the logistics of having to be in Chicago for about 2 weeks than we are about our son getting ready to have brain surgery. That alone speaks volumes doesn't it!?
Surgery is scheduled for March 19th.