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Re: Our 9 week old with Erbs..
Posted: Tue Jun 15, 2004 11:04 am
by katep
Karen,
Nerve grafting _alone_ (as in primary surgery) is usually not done after 12 months due to the fact that muscles lose receptiveness to reinervation after a period of time.
However, nerve grafts are also used with free muscle transfers (like the gracillis transfer) primarily to restore function to the hand in the case of severe ruptures that didn't recover from initial grafting or avulsions. A fresh muscle is transplanted along with (or sometime after, to give the nerve a "head start") a fresh nerve is grafted in for "juice", which restarts the "muscle death" deadline. They typically use sural nerves for this, and thus it is advantageous to save some if future work like this is expected.
Kate
Re: Our 9 week old with Erbs..
Posted: Tue Jun 15, 2004 11:27 am
by Karen Hillyer
Hi Kate
thanks for clarifying that issue - I think we do a similar surgery over here in the Uk - I can think of about 4 or 5 children who have undergone this procedure over the past few years.
Sadly none of them have seen any real results from the surgery - however I should stress that all of them had extremely severe injuries to begin with, so maybe that's the reason they sisn't have the results the surgeon hoped for.
Re: Our 9 week old with Erbs..
Posted: Tue Jun 15, 2004 3:17 pm
by admin
hi jenny they did a nerve graft on his c5 but because his c6 c7 torn from spine i was told these two were inoperable..he received a donor nerve from his left leg.His cut isnt in a normal position its about 3 inches vertical on top of his shoulder with just a sterile sticking plaster covering i have changed his dressing many times now.
Re: Our 9 week old with Erbs..
Posted: Wed Jun 16, 2004 5:59 pm
by sharonpmurray
Hi all,
I havent been on line recently,lots of personal issues, but getting there now I hope,,,Keelan is moving her arm but wont do supination, and only moves it once in a while,,,nothing like the movement in her left arm. We are doing lots of pyhsio with her and are attending the crc, she is due to be reassessed on july 7th, we are having problems with some of her movements, there is a lot of resistance with the arm by the side - elbow bent outwards movement, and it clicks really louldy sometime, the clinic said today she tought it was muscle tightness pulling the bone out???and that it would take lots of this movement type to fix it...has anyone had similar problems...I really dont like doing it when I can hear the bone click or crunch..(thats what it feels like) the physio also said she it didnt feel like it was dislocated. I feel very reluctant to do these movements until I sure,.,,does that sound weird...
S.
Re: Our 9 week old with Erbs..
Posted: Wed Jun 16, 2004 6:01 pm
by sharonpmurray
Hi all,
I havent been on line recently,lots of personal issues, but getting there now I hope,,,Keelan is moving her arm but wont do supination, and only moves it once in a while,,,nothing like the movement in her left arm. We are doing lots of pyhsio with her and are attending the crc, she is due to be reassessed on july 7th, we are having problems with some of her movements, there is a lot of resistance with the arm by the side - elbow bent outwards movement, and it clicks really louldy sometime, the clinic said today she tought it was muscle tightness pulling the bone out???and that it would take lots of this movement type to fix it...has anyone had similar problems...I really dont like doing it when I can hear the bone click or crunch..(thats what it feels like) the physio also said she it didnt feel like it was dislocated. I feel very reluctant to do these movements until I sure,.,,does that sound weird...
S.
Re: Our 9 week old with Erbs..
Posted: Thu Jun 17, 2004 2:02 am
by myhumanrevolution
Congratulations!
I have a 10 (almost 11) week baby boy. He has not movement in his right arm.
It's hard. Really hard. But everyday it gets better for me-- even though there seems to be no change to my son's condition...
Happy to e-mail or talk anytime!
jennie-brad@hvc.rr.com
Jennie
Re: Our 9 week old with Erbs..
Posted: Thu Jun 17, 2004 10:06 am
by admin
hi i attend the crc with eoghan also the movement your talking about was stiff on eoghan as well.Through physio regularly i managed to make and keep his other joints loose that one took a bit longer pobably up to a month ago to make it fine.I was like you and questioned the pain factor but he just didnt like doing the physio on it as it was stiff.I snuck physio on it into his bathtime while he was busy playing with his toys.I have Sinead as my physio and find her wonderful so talk thru your concerns with them they will ease your mind.Are you seeing Daragh at next app.
Re: Our 9 week old with Erbs..
Posted: Thu Jun 17, 2004 11:10 am
by Karen Hillyer
Hi Sharon
don't worry about the supination, in my experience children only really get that back at about 12-15 months of age, so I think you have a way to go yet.
Also don't worry that her arm isn't showing too many signs of recovery just yet - Gavin was 13 months post nerve graft before he managed to bend his elbow - it takes time for them to get used to having the nerve there to perform the movement - lots of two handed play and gentle encouragement to remind her that she
has TWO arms and hands is helpful
Keep bending the elbow- some children do have clicky joints - but make sure you mention it to the consultant when you go.
E mail me any time Sharon - if I can help I will.
Kisses to keelan
Karen
Re: Our 9 week old with Erbs..
Posted: Thu Jun 17, 2004 6:40 pm
by sharonpmurray
I know its really hard, doing it when it hurts them, which Sinead do you see , we go each wed for the physio and we will have the 6mth checkup on july 7th, I have put a reply in the other msg for you, am looking foward to getting in touch,did you get your email address sorted so I can give you tel number...~S.
Re: Our 9 week old with Erbs..
Posted: Tue Jun 22, 2004 2:36 pm
by admin
hi karen just an update on eoghan he got his bandage off today but surgeon said only reason he's not casted is cause they had to put a morphine line in his neck and it got in way..i have to treat him like he's casted regarding shoulder movement.I feel annoyed as there isn't a medical reason yet obvisouly theres one for casting..his scars seem fine totally different positions to any pictures i've seen but everything about his op feels different at this stage!!!