Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Pursuing a 2nd Opinion

After our appointment with the local pediatric orthopedic surgeon, we made the decision to seek a 2nd opinion on Rylee's neck/spine. Thanks to a friend from Tennessee who's daughter underwent AAI/AOI spine fusion surgery several years ago, she made a recommendation. She (along with others I'd talked with) said that the Shriner's Hospital in Philadelphia was the place to go for this. The surgeon there was an expert and dealt with AAI/AOI frequently.

So, yesterday morning I dialed the number she'd given me, assuming I would be connected with a receptionist. I would do my best to make our long story short... the receptionist would do her best to take notes to pass along to the surgeon's nurse, who would then give me a call back several days later. Making the connection might take awhile...

You can imagine how surprised I was to hear the voicemail of the surgeon himself! Man, this friend of mine truly hooked me up! (Thanks Renee!)

Not knowing how long a message the voicemail would allow, I spoke quickly. (I'm famous for having to call people back to finish my message, and I didn't really want to have to do that this time!) I tried to summarize our story, ending it all with the request that he be our 2nd opinion.
(We were hoping to send Rylee's x-rays and MRI scans out there for review...)

I assumed that it would be a day or more before he called back, but the rest of the day, each time my cell phone rang, I glanced around to see if it was an appropriate time to talk, if it were to be the surgeon.

Ring... ring. (Glancing around... "hmmm, I'm driving in the car, but I could pull over into the IHOP parking lot and try to keep the kids quiet by giving them this 1/2 eaten bag of popcorn from yesterday.)

"Hello?" (not him)

Ring... ring. (Glancing around... "in the bathroom, going to the bathroom... well, not ideal but probably could get away with it if I don't flush.)

"Hello?" (not him)

Ring... ring. (Glancing around... in my office, kids are playing in their rooms... this might work!)

"Hello?" (HIM!)

What a kind and generous man! We talked for nearly 20 minutes. I gave him the low-down, and he listened. I mean really listened... not like a half-listen sort of "let's just appease this talkative South Dakota woman to get her off the phone and get on with my busy life." Renee said he was wonderful, and she was absolutely right! He said he would be more than happy to look over Rylee's x-rays and MRI scans. He gave me his assistant's address and said that he would look them over within a day or two of receiving them and give me a call back with his thoughts/recommendations. It was such a positive phone call, and I was grateful to have had a friend recommend him. (Thanks again Renee... I owe ya!)

*****

And so you'd think that would be the latest, but it's not.

*****

This morning, (during a fun watercolor project with the kids - gotta love no-school days!) the phone rang. It was the surgeon from here in town. He said that each Wednesday, he and some colleagues get together to discuss cases, etc. Yesterday, he showed Rylee's x-rays/MRI scans to the group to see what everyone's thoughts were. The consensus among the group was that Rylee does have AOI at extreme flexion and extension. In their opinion, there isn't instability until she really flexes her neck way up high/back or down low. Their thoughts are that it showed up on the x-rays because she did put her head way up high and way down low herself, but that for the MRI scans, her neck wasn't extended or flexed as much as during the x-rays.

Their recommendation was to limit some physical activity (gymnastics, trampolines, etc.) and check her again next fall with another x-ray.

*sigh*

What this did was reassure us that AOI is apparently very difficult to determine/diagnose, and that following through with a 2nd opinion from the surgeon at Shriner's in Philadelphia who has much more experience with this is definitely the right thing to do!

Thanks for everyone's continued thoughts as we work through this!

We just continue to picture Rylee as the healthy, happy, active little seven-year-old she is!


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