United Brachial Plexus Network, Inc.

Hi, John i am Wondering when your Surgery is going to be shown on the Discovery Channel? I don't know if you know the exact date yet but hopefully you can tell me when you'll know. (if anyone else knows could you tell me. I don't know if john has visited the boards lately)

Andrew

hey whats going on is someones surgery going to be on the discovery channel i find this very interesting and would like to know the date so can learn more about whats going on thanks

hey,

you are right, I had not been to the bords recently.

they are still saying somewhere around October to Nov., when they let us know we will post the date here.

john

hey john this is chris again exactly what type of surgery are they going to show and what injury did you sustain exactly thanks

This is John's mom responding, since he's gone for the day on his bike. John is 16 & a competitive cyclist who was hit by a SUV while training on his bicycle last November. All BPI nerves were avulsed (C5,6,7,8,T1), & he had February & April surgeries at the Mayo Clinic in Rochester MN that involved:

- good C7 moved over
- four intercostal nerves
- sural nerves
- gracilis muscle/tendon/nerves transferred from legs to give shoulder/elbow flexion & hand grip/release
- phrenic (breathing) nerve moved over (commonly done in Asia but we think this was the first time done in USA)

Mayo has a team of three doctors who bring a good variety of specialties to the BPI surgery. Discovery Health Channel was planning a four hour documentary on the clinic, & John was asked in February if he'd consider the surgery being taped for the BPI segment. It was April before the logistics worked out, so the film won't show both surgeries unless they incorporate something else. The 15 minute BPI story will tell something about John's cycling as well, & will wrap with him attending a disabled cycling development camp at Colorado's Olympic Training Center. (He now has a reconfigured bike & with brakes & gear shifters moved to the right side.)

btw, John can now shrug his shoulder & flex his elbow when it's on a table. Last week at his Mayo checkup, they did an EMG & signals are already getting to his hand but the movement there is not apparent quite yet. As you all well know, it will still be years before we know the full extent of recovery. And John may still need further surgery later to remove scar tissue if that limits his recovery.

We've been highly impressed with Mayo - for obvious reasons! We were told the film might air as early as October, but haven't heard anything definite at this time. We'll put something out on the board when we do know. Be aware that some folks might have Discovery Channel but may not also get Discovery Health Channel on cable.

Hope this helps!

Ellen

Ellen, does your son suffer from pain since he has total avulsion?

Yes, John has had a hard time with pain and at it's worst he was on 3600 Neurontin, 100 Amitriptyline & 200 Topomax a day. This summer he was able to back off the Amitriptyline completely & go to half the Neurontin. The plan was to continue decreasing all pain meds but we think we need to stay put at the current dosage for a bit longer.

The ability to back off meds to this extent is probably based on both the nerve regrowth from surgery and John adjusting & learning better coping skills. Stress does make it worse & being back in school of course will be a challenge.

What's your situation?

Ellen

I have pain all day long, but I can not take any medication because I am pregnant. Iwas already pregnant back in April when I had my car accident. Does the medicine help him?

John's pain is much better, due to a combination of:
- coping skills & adjusting
- pain meds
- nerve regrowth from the surgery

Stress does make it worse & as he gets older he'll be better at managing that. None of the medicine he's on is narcotic, which helps. What do you do for your pain? When is the baby due? How did the accident happen?

Take care...

Ellen

Just a quick update - I heard yesterday from Discovery Channel & they're planning to show the documentary in mid-November. Will update the board when we know more...

... but wanted to shout Yee-Haw (which is how we do it in the South) & share with you all that yesterday John was able to move his fingers!!!!!!!! Surgery was in April so we're thrilled to see results this fast.

Ellen