United Brachial Plexus Network, Inc.

Not quite sure how to put this but Ill try.

For those of you that had nerve grafting for your 1st surgery, how long was it that your Dr. wanted to wait until the second surgery? (if 2nd was needed?) Just this past July, James' EMG showed a slight bi-cep and hes been post op for 18 months. It looks to me like by that time, his muscles will be almost completely atrophied that it would be useless unless theyre going to do some kind of muscle transfer the 2nd time? Is that the reason for the muscle transfer, if you dont get back enough bi ceps? I know I should be asking the Dr. about this but wanted to ask you all first and what your experiences have been, maybe give me more of an idea on what to say to the Dr. when he sees him again. Hope Ive not been too confusing.

Has James been getting physical therapy on the muscles in the interim? John did e-stim (electrical stimulation) every day - which helped keep his muscles going until the nerves could connect. For atrophied muscles, then a muscle/tendon transfer would be an option (such as the gracilis).

Hope this helps.

Ellen

Thanks for the reply, Ellen. Check your e mail.

Hi Priscilla & Ellen,
I have questions for you both. How soon after surgery did James and John begin estim? Chase has recovered quite a bit of sensory in his upper arm - very little to none from elbow down (avulsed C8 & T1), and appears to be getting some tricep, but has not had a post surgery EMG. His surgery was 3.5 mos ago so we're early in the game. I want to make sure we're keeping those muscles going for as long as we can to accept whatever nerve innervation comes, but my therapist seems to be reluctant. We did try this biofeeback machine which really helps isolate the muscle he's trying to contract and beeps when he does the exercise properly - pretty cool. Anyway, because it looks like Chase is getting some tricep and no bicep, his elbow is being pushed forward and hyperextending, so we're waiting to meet w/a prosthesist-orthosist to come up w/a support system (thanks again for the pics Priscilla!) Any wisdom either of you can shed on what's to come in a seperate email would be great. I'd love to know what John is able to do today and when things started showing signs of innervation. I know he had a double muscle xfer, so his surgeries are totally different. I think I'll always have the question in the back of my head, would Mayo have done anything differently on Chase, but w/the surgeons I've followed up with, they've all said they would have done the exact same thing he had done, which gives me peace. Priscilla, because Chase & James had almost identical injuries, when did James have his firs post-op EMG and did it show anything? Does he have sensory? After all this typing I'm realizing this should be 2 seperate emails to each of you, so I apologize. What an opportunist am I - I saw you both on this thread and jumped right in w/my own agenda. Thanks gals!
Lourdes

Hey -

John started estim as soon as he was out of the cast. It's fairly time consuming to 'zap' each muscle the requisite number of times - and if we had it to do over I would have pursued getting a different type of estim that has more than one zapper thingie (don't you love my technical jargon?) I've even heard of one design that would do this during sleep but our PT is nervous about that, since things could shift & you wouldn't know about it. But John's greatest frustration w/the estim was all the time it took to sit there & do the zaps. But bottom line, it's VERY important.

Our insurance wouldn't cover the biofeedback unit, but had no trouble covering e-stim...so all that to say, it must be generally accepted to be effective.

John's first twitches were about 6 months out but I've read of others who had it sooner. All depends on the distance the nerve has to travel to get to the muscle.

Priscilla, I don't remember seeing an email - can you resend?

Take care,

Ellen

Ellen, I e mailed you twice, and it keeps bouncing back. ??? Do you have another address or something?


Lourdes, I will e mail you tomorrow, I have to go to the school today for parent/teacher conf.

bump