As with most parents of newly diagnosed Chiarians, we jumped into the interwebs to find out all we can on the subject. Some was informative, most was terrifying, very little was comforting. This is when we found the websites Conquer Chiari, Ben's Friends, Chiari Support and ASAP. (See links to the left) There are so many helpful folks out there to help you along the way. It is especially nice when you meet someone in your neck of the woods and can help identify the physicians and facilities where they have had good experiences.
Our first neurosurgeon was a blind referral from our pediatrician office. The physician was a very nice guy, who treated G very well. He recommended surgery within 2 months given the severity of the herniation. His main concern was further injury if G was to have a whiplash accident. However, he did not meet our criteria. The office only performs a dozen or so Chiari Decompression surgeries per year. This was not enough for me to feel comfortable, so we decided to move on to some recommended providers from the moms I met on the Chiari websites.
Our pediatrician was very supportive and referred to us to the neurosurgeons we requested. We decided to pursue referrals to two of the top Chiari surgeons in the Midwest. One was located in Chicago and the other in Cincinnati. Both were hard to get into, and the Cincinnati doc required a spinal MRI before our consult. So, we decided to get the additional MRI before seeing each doc so they both had the same imaging to review. The spine MRI showed no syrinx, and we were relieved.
It was early March before we could get into the doc in Chicago. Let me tell you about University of Chicago...It. Is. Huge. Parking is valet only due to the pure number of patients being seen at once. Getting there is quite a chore, and then navigating the buildings are a bit tough. Once we made it to the neurosurgery department, the staff was AMAZING. Front office, clinical staff and the physician were all great. What really struck me about the physician, was the fact he only spoke to us once in the first 10 minutes. He walked in, looked at DH and me and said "Neither of you look 7 years old". Then proceeded to talk to us very indirectly through G. He asked all of his questions directly to G and only glanced at us to ensure we agreed with her answer.
Then, he came and sat down next to us to discuss his thoughts. His suggestion was to adapt a few items at her school desk to see if it improved her symptoms, then return in June for a follow up. He was not keen on surgery since she was not exhibiting one of his 3 prerequisite symptoms. (Sleep Apnea, drop attacks, synrix present) We were so very relieved to hear this since we had been told G would need surgery. We still had some concern given the severity of her herniation, and decided to get one more opinion.
An important side note, is that we have a strong family history of a connective tissue disorder that is sometimes correlated with Chiari. When I specifically asked about this correlation, and how it pertains to how surgery is handled, I was met with a nonchalant answer. He had no concern that this disorder ran in the family, and he advised that there would be no difference in surgery or outcome even if G has the condition. This struck me as wrong and raised the "mom's inner voice" flag. We left feeling good since we had decided no surgery at this time, yet conflicted to due the known severity of her condition and the possible underlying connective tissue disorder.
On to the next provider we go...
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