United Brachial Plexus Network, Inc.

Hi Tina,
Thanks for sharing your story. You're right: it's been a challenging week.

Emma is 8.5 weeks old. She was lightly sedated for the MRI - just enough so that she was asleep and didn't wriggle around. She has seen a pediatric neurosurgeon twice, and has been working with a PT since she was a week old.

The thing that worries me the most is that her MRI strongly suggested nerve root avulsion from C5 all the way to T1. Here's the catch...based on the MRI results, she shouldn't be able to do the things she can. She has always had movement of her wrist and hand, and has developed some shoulder movement. If she has complete tearing at T1, she shouldn't be able to use her hand. I'm hoping that the MRI is wrong, and that the damage isn't as bad as the test would suggest. Having said that, I also know that I need to be prepared for the worst case scenario.

That's why I posted my initial question - to see if other people had similar experiences with the results. It sounds like they're wrong a lot of the time. Right now, I'm trying to focus on basing my thoughts on what I see her do (and not do), and not too much on the tests. Still, it's hard not to think about them.

Thanks again

Sorry - I just realized that I made a mistake in my last post...I meant to say that if she has complete tearing at C8, she shouldn't be able to use her hand (not T1).

Hi, Sarah. I just wanted to say that I am impressed with your knowledge of BPIs already in such a short time as well with the progress you've already taken in Emma's treatment. It looks like you've learned in a very short time how to be a great advocate for your child. Keep up the great work, Mommy, and enjoy your sweet baby! -Tina )

Hola Sarah. We will all earn a degree somewhere along this path. I would like to share a website: http://www.teleemg.com/ for emg tests. I don't know of mri website. Also, my daughter had these tests done at miami children's hospital at 6months. In addition, an ultrasound and ncv (nerve conduction test) and somasensory testing. My understanding is that the findings of these tests are used by the surgeon as "part" of his total assessment for treatment/surgery for your child. And that each child is given individualized treatment and surgeries. In my daughter's case the findings confirmed that she was a candidate for surgery and that two nerves needed repair and that there was scar tissue damage. Eventhough, this was visible from what she could/couldn't do during therapy. I'm sure once the incision is made they might find something additional but not entirely surprising from the tests. I pray that all goes well with your 'lil one. Enjoy your bundle of joy.

Thank you again to everyone for the information and support!!

Sarah:
just one note on movement--which I think is a much better indicator than the tests... T1 moves the pinky-if the pinky can move-you don't have an avulsion.
BTW Juliana also had an MRI at 6 weeks of age. She was not sedated, I fed her and she fell asleep. They sandbagged her and bolstered her head. It showed "soft tissue damage." Nothing about nerves at all. We knew there was soft tissue damage--her nipple was black and blue for weeks after she was born. It wasn't until she had surgery and they looked and did the intra-operative EMG did we know how extensive her damage was. We also had an external EMG-it seemed painful for her (and me) and it showed extensive damage. Go figure. I still think function and the lack thereof, is the best indicator.
just my opinion.
claudia

That emg site was an Excellent site!! Thanks so much for posting it. Any others you'd like to share with us?

-francine