7 months post nerve graft and no hand to mouth

[Kathleen Z]

Just wondering what others' experiences have been. I thought that by 6 months post-op, I'd be seeing noticeable bicep movement. Josh had nerve graft surgery to repair ruptures to c-5 and c-6. He now has better wrist function, better shoulder function, and triceps function. His therapists think that he might be starting to get some biceps function, but it's hard to tell if it's biceps or brachioradialis(sp?).
Am I just being impatient, or could the nerve graft not have taken? Biceps function was the main reason why we chose to go forward with the nerve graft surgery, so I guess I'm just anxious to see results.
He sees his surgeon next week at Hopkins. He was going to recommend an EMG if he couldn't detect any biceps movement.

[m&mmom]

I spoke with Lisa at TCH about what movements should be coming (April 4ht is Matthew's 6 month post op). She said that movement really starts to come in 6-9 months post op so there is a possiblity of seeing something shortly. When Matthew had his clinic appt at CHOP the ot did detect 30 degrees of bicep. Im my opinion I would probably wait a little longer before doing an EMG (I think it's a pretty painful test) and maybe Josh needs a little more time.

[crystal]

well jade had C5 C6 C7 repaired in primary too. bicep was the last thing she got back. they tought she would not ever get it back.TCH gave little hope in getting it back. After mod quad it got alot better becouse it wasn't so tiet. it think she was about 16 month befor she got it back, maybe earlier. who old is Josh

[admin]

My daughter had the primary surgery at 5 1/2 months and the mod quad at 13 1/2 months. She is almost 9 months post nerve grafts and 3 weeks post mod quad. She was not showing any bicep movement and when they did the mod quad they checked the nerve to the bicep (which is not part of the typical mod quad surgery) and found a lot of scar tissue compressing the nerve. I think an EMG would be wise if your doctor recommends it because the window of opportunity of getting nerve impulses to the muscles is not that long.

[TNT1999]

Aaaahhh, the waiting, that I know too well. Here's our experience. Nicole had primary at 10 1/2 months, then she had exploratory / neurolysis at 15 1/2 months. At the time of the 2nd surgery, they were considering doing nerve transfers, but felt some flickers of biceps. So, that was it -- just flickers at 5 months post-op, but that was enough to indicate to them that the primary surgery worked and that time would likely improve the function. They also did neurolysis at the time so it wasn't all for nothing. Nicole seemed to start getting very little traces of biceps, but nothing really noticeable until after her 3rd surgery -- Mod Quad at 23 months. That seemed to really make the difference for Nicole. I think that part of the problem was that Nicole's arm was very internally rotated. In fact, we were still questioning biceps and getting conflicting diagnoses about biceps right up until Nicole's 4th surgery (Capsulodesis) which was at 32 months old (Dec 2001). About the brachioradialis, one of Nicole's therapists told us that she had a little biceps, but was mostly using the brachioradialis to bend her arm -- this was prior to her latest surgery. So, when we talked to Dr. Nath about it, he said that most therapists don't really understand this injury enough and that the reason it seemed like Nicole was using the brachioradialis as opposed to her biceps was b/c her arm was so internally rotated that she just couldn't position her arm in the way that typical biceps would work. He also confirmed when we saw him in Dec pre-op that Nicole was in fact using her biceps.

So, I'm wondering is Josh's arm internally rotated? Have the doctors talked to you about secondary surgery (Mod Quad / muscle/tendon transfers/releases) at some point? I don't know, but that might be the key for him to getting good biceps function.

As far as the EMG, I guess I would ask if they were considering doing nerve transfers if there isn't any biceps activity detected. If so, then I'd say go for it. However, if they're not considering doing nerve transfers at this time, then I would not want to subject my child to a test like that. JMO. If they are considering nerve transfers, then findout which nerves they would transfer. TCH wrote up an article on the Contralateral C7 Transfer (featured in a prior copy of Outreach) and it highlighted many benefits to using the Contralateral C7 rather than doing Intercostal Transfers (which is what they used to do and I believe still might do in some cases depending upon what they need).

Don't feel like you made a mistake doing the primary surgery. Sometimes it takes a long time to see the results and sometimes it also takes additional surgery to really see the pay off, but if it was done correctly, then the results should be worth it in the end.

I do have one more thought I'd like to share. I was so excited when I saw Nicole bend her arm and use what appeared to be her biceps. When we saw her OT, I couldn't wait to share this new movement with her b/c I was convinced that this confirmed finally that she had biceps. Well, I was very discouraged when we showed her and she said, well, actually she's using her brachioradialis and not really her biceps (but maybe a little biceps). I felt at that point like I never wanted to get excited about something until it was confirmed by a "professional." However, I re-thought that and was glad to know that Nicole's other therapists all shared these thoughts -- any new movement is a good thing. Even if it was just the brachioradialis that Nicole was using to bend her arm, so what -- I mean what's ultimately important is function, right?! So, if Josh can bend his arm and eventually get it to his mouth, do you really care what muscles he's using -- as long as he can accomplish the task?? Nicole's Aqua PT said too that the brachioradialis is really more functional of a muscle than the biceps b/c it's mainly the brachio. that you use to feed yourself (ex. bringing a spoon to the mouth). Just sharing some thoughts to hopefully give you some encouragement. I hope it helps. Sorry this is so long. Feel free to email me if I wasn't clear on some of my explanations.

-Tina )

[admin]

Hello,
My daughter Savannah had nerve grafting in November, 2000 at TCH. She still does not have hand to mouth. Dr. Nath thinks it should be around Christmas, 2002 when she gets this movement. My daughter is older, so maybe that is why it's taking so darn long...
Stephanie