United Brachial Plexus Network, Inc.

My 14 year old daughter has an appointment next week at Mayo Clinic in Rochester, MN with Dr.Spinner. She has c6,7,8, & T1 avulsion.(verified through surgery) and partial of c5. Anybody have any luck with surgery to repair something like this? What about Dr.Spinner? I have been hearing from doctors to not waste our time that she wouldn't get anything back but maybe partial movement in her bicep. (we are doing this regardless of what they say) So far, Mayo is the only one who will even attempt her surgery. We sent her MRI's & pictures taken during her surgery. Also, anybody else not have a subclavian artery? How do you get along without it? Or a paralyzed diaphragm? Her accident happened a little over a month ago so we are fairly new to all this and I am trying to learn everything I can about it. Any help would be appreciated. Thank you.

I'm so glad you're going to Mayo!

My son, at the age of 15, had two major surgeries two years ago with Spinner, Bishop & Shin at Mayo. We think they're phenominal. John had all 5 avulsed so probably is somewhat similar to your daughter. Since everything was avulsed, Mayo did a gracilis transfer in each surgery, one for shoulder/elbow & the other for hand movement.

These transferred muscle/tendons are powered by nerves brought over from various places: phrenic (chest), intercostal (ribs), crosslateral C7 (part of C7 from good arm). Sural nerves were taken from the back of his legs for grafting. There have been no problems from the donor sites (i.e. he's returned to original strength in good arm, normal breathing, doesn't "miss" intercostals, never used gracilis anyway so doesn't miss).

All nerves have now connected with the target muscles. John has the ability to bend his arm & make a grip, and he can now use his bpi arm with limited functionality. But perhaps best of all, he had almost no pain now - which I'm convinced is from the surgery that enables him to move his arm when his brain says "move". From massive daily dosages, he now only takes one pill as needed, usually ~once a week.

It's VERY good that you're moving so quickly. John's surgery at Mayo was done 2 1/2 months out - it took me a long time to begin getting educated about bpi.

Let me know if you have more questions. btw, our favorite restaurant in Rochester is Canadian Honkers (across from St. Mary's Hospital, ~1 mile from the Clinic.)

Take care,

Ellen

Oops - below is a link to an article on the Mayo website about John's surgery. Just click on the cyclist picture to get to the story.

http://www.mayoclinic.org/brachial-plexus/

(I also have a DVD copy of John's surgery, shown on Discovery Health Channel, if you're interested. Just let me know.)

And now I'll shut up!

Ellen

Hi Ellen, this post is for you mainly. I may have asked this before, but what period of time did John get movement back after his surgeries. Michael has had nerve transplant last August. Has now got a little movement in that originally he only had shoulder shrug but now can move the arm outwards, which he couldn't do after the accident. The other thing he has commented on in the last week is that when his arm is on a sold object, bench or table, even though he doesn't have actual sensory feeling he can feel pressure on his elbow. I found this quite amazing because he has had this at all since the accident. Maybe this may be the start of things. We would be very intersted to know of John's time frame...if this makes sense....regards Narelle & Michael

Sounds like Michael is doing great! John got the beginnings of movement around six months out from each of his surgeries. By that I mean just a little movement he could control - which then grew stronger with therapy. We didn't realize he could bend his arm until he was in a swimming pool (and then of course we all freaked out.) 2nd surgery for hand grip, ~ six months out, he could twitch his fingers. It started so small the only way we could see that was if he put his hand on a paper towel, we could then see the paper towel sort of crinkle under his fingers. Then again, things got stronger over time.

Sounds like Michael is around the six month mark also.

The last two muscles to wake up had nerves with the longest distance to grow: phrenic & crosslateral C7, powering bicep & deltoid. They showed up on the EMG last month.

Hope that helps. Keep us posted & take care,

Ellen

Dear Rene,

I am terribly sorry about your childs accident, I to have avulsed nerves, C3 thru C5, I had surgery in July of last year by a Dr. Osenbach and he basically saved my life from a living hell. I you ever need a second opinion see this man, he's great and will tell you like it is, strait up. He's at Duke University in Durham NC, the city of medicine.. Good luck to you and your child.
G-man

G-Man, I live in NC and would like to ask you some questions if you dont mind. Please, my e mail address is softballmom09@hotmail.com I have a son age 12 that is TBPI. Or post your address here. Thanks...

Dear Ellen,

I dont know how much to thank you for your information.
Was really glad to see details on your son's surgery and progress.
Hope he is doing well now.
As for me, the doctors over here have used phrenic nerve for getting movement back on my shoulder and to my elbow.
It has been 3 months since operation and am begining to get very mild shoulder movement(with gravity).

Really hoping to make some good progress.

As for the medication I have been taking Mega-neuron everyday (one per day).
Could you tell me what pills were prescribed for your son?

Thanks a ton,
Binoj

Dear Ellen,

I dont know how much to thank you for your information.
Was really glad to see details on your son's surgery and progress.
Hope he is doing well now.
As for me, the doctors over here have used phrenic nerve for getting movement back on my shoulder and to my elbow.
It has been 3 months since operation and am begining to get very mild shoulder movement(with gravity).

Really hoping to make some good progress.

As for the medication I have been taking Mega-neuron everyday (one per day).
Could you tell me what pills were prescribed for your son?

Thanks a ton,
Binoj

Hi Binoj,

Sounds great that you're already starting to get some movement. How long ago was your injury, & what was avulsed?

I'm not familiar with Mega-neuron but of course there are a lot of options out there. Since John couldn't tolerate narcotics, what worked best for him (at least to make the pain tolerable) was a daily combination of: 3600 Neurontin, 200 Topomax, 100 Amitriptyline. The past two summers when he wasn't in school, he worked hard to taper off - and is basically medfree now. Sometimes when he's stressed, he'll take a Neurontin (600 mg).

Where do you live, & who did your surgery?

Thanks,

Ellen