United Brachial Plexus Network, Inc.

Hi i've posted a few times mainly desperate for information posts etc but today its a positive post..
Eoghan is 10 months now and 4 months post primary op and has began to weight bear on bpi side and crawl!!
He is so chuffed going around on his own and today he started pulling himself up to kneel on the floor..
I just think its so COOL to see him doing what "normal" babies do and i feel really positive now regarding his developement and his adapting and coping with erbs..i even had to higher his cot bar as he's managing to sit himself up in it!!
If my post can give hope to all new mums ,great, as i felt for ages that Eoghan would find it too hard to do crawling but my little man knew different...

That's great! Congratulations to you both!! Our daughter (now 2) also started crawling just after she was 10 months. Only 6 weeks later she was walking (& trying to run) and was into EVERTHING!!

It's so great to celebrate a "regular" milestone!!

Hi Debs
I've JUST returned from an International Symposium on BPi in Italy - guess what - I met Darragh Hynes there again - he was there with Mr Cronin and also Lynn from CRC
The BEST news- one of the surgeons gave a presentation on nerve graft surgery and a new method of accessing the brachial plexus to allow for a better view of the muscles - guess what-
IT WAS THE VERY INCISION THAT EOGHAN HAD !!!!!
so he must be one of the first babies to benefit from this procedure
I couldn't wait to get back and let you know!
Karen

Hi tanx for that message ....did he use pictures of a surgery to show the procedure just wondering in case Eoghan's shoulder is famous!!
Lynn is actually Eoghan's new physio haven't met her yet though...was she involved in the talking??
If you met her what do you think of her...
Eoghan is coming along leaps and bounds he still cant move arm away from body or raise it up cant think of the terms used!!his finger control is fantastic and his weight bearing really strong so he's a happy mobile kid at mo.
Hard to believe he,s nearlly one that year has flown
past...

thats great! My son had mod quad surgery 1 month ago and he is now able to do the same! Isnt it a miricle!

Debs,

I am so happy for you and your baby. It brought tears to my eyes to hear that he is doing everything other babies do now (post op). My Ash is turning 5 months tomorrow and still has no bicep. If none returns by 6 months then surgery is immenent. I wanted to start gathering info about the primary surgery (and how the babies cope after... is there a lot of pain, are they in a cast or sling, do they spend the night after surgery at the hospital)... so many questions!! If you could answer any of them and tell me your sons story of how his primary went, I'm sure I'd feel comforted and reassured. Thanks for sharing this great story with us!! CONGRATS!!!

Hi Ashleighs mum...
We live in Dublin Ireland so maybe things are a bit different here as surgery here is relatively new but I'll share our story...Eoghan had primary op on June 8th an exploration of the BP found damage to 3 nerves the c5 was ruptured so a graft was done with a nerve taken from his left leg.I requested they used this leg as Eoghan uses his right foot as a hand!!His c6 c7 are avulsed and I was told by surgeon nothing could be done for them.This is something I am now disputing with him as thru this forum and newsletters I have discovered things can be done..
Eoghan was operated on a Tuesday and as Karen posted previosly his incision is different to norm it went across his shoulder like a bra strap...due to positioning of a line for his morphine he wasn't put in a cast..just a sticky plaster covering the cut..
We were allowed take him home on the Thursday as he came off heavy pain relief on the Wednesday morning
We were VERY nervous as we were expecting him to be casted and it was nerve wracking for a few days..
Eoghan only needed mild pain relief for about 2 days and was his normal self then he had to be handled very carefully but it didn't seem to affect him..after 6 weeks we were allowed to resume physio and it was admittedly a long process as it was like starting all over!!
He has only recently improved on his pre op status and still hasn't bicep or tricep movement..he manouvres his arm around his body by contracting his shoulder into his chest and using his pecs to move it.He cant move his arm up or out but by god when he's playing on the floor he looks like any other child!!
He can weight bear on the arm after months of physio promoting this and seeing him mobile is a JOY..

I know he wouldn't have achieved this without the op and I know he'll probably face more ops but if it gives Eoghan a better use of his arm I know it's right.

I hope Ashleighs op goes well and I think we suffer more than the kids they just carry on regardless.
I used to look at Eoghan and feel so sorry for him and his lack of things he'll be able to do BUT NOW I see a PERFECT boy full of mischief and raring to go and there's no pity as my little man can do ANYTHING and be anything...
Its such a frightening thing though that Doctors are still injuring newborns and there are mothers having to go through so many emotions at what should be the happiest time of their life,the anger thru to blaming themselves the what ifs and finally the acceptance and then the joy of watching your baby develop and become a person...we come out the other side STRONG and the best mums there can be!!!
Keep us updated on the op thinking of you xxx debs

Thank you for the information. Hugs to you and Eoghan.
I'm sorry to hear how damaged his nerves were. Children are very resiliant aren't they. They will find ways to do what they want!! My Ash has gotten smart too - she knows when she flexes her arm to a certain height, it will then fall across her chest (she has no bicep) and then she'll grab it with the other hand to play. So smart!

She is scheduled for primary surgery on Nov 29th. We are nervous, excited, scared, happy... we are praying that the surgery is successful and her recovery well. We are lucky in that she's gotten most movement back (she has no biceps, supination and weak wrist extension and finger extension on some fingers). I think she has a lot of scaring in her brachial plexus and that is what is causing certain functions to be weak... but I'm not doctor. We will find out soon enough when the surgery occurs.

On a side note, my husband and I have always wanted to go to Ireland. It looks so beautiful!

Deb,

You say "His c6 c7 are avulsed and I was told by surgeon nothing could be done for them.This is something I am now disputing with him as thru this forum and newsletters I have discovered things can be done.."

I think this is an area where there is commonly miscommunication between doctors and parents. When parents think C5, C6, etc., we are envisioning a nerve that goes the whole way down the arm. Like we say "C7 is triceps", etc.

But I don't think that is how doctors think of it, which results in confusion sometimes. When doctors say C5, C6 etc., they are referring to the roots *as they comes out of that particular vertebrae in the spinal cord*. Further down, these roots commingle, joining and separating into a web of nerves that make up the brachial plexus. It's like you think of one single "route" to your house, but the doctor thinks of each individual street and turn by name. They think in terms of axillary nerve, musculotaneous (sp??) nerve, radial nerve, etc. The C5, C6, roots are just the first starting points for the plexus, not actually the nerves that innervate the arm.

So when the roots at C6 and C7 are avulsed, as in your son's case, most doctors will not attempt to reattach them. Some work has been done with reimplanting nerves into the spinal cord, but it isn't commonly done and that is probably because the doctors think there is a better option. That option is to use other nerve roots that are still attached to the spinal cord to hook up the nerves that previously came from the C6 and C7 roots. The nerves that you, the parent, think of as C6 and C7 get reattached to the C5 root. But from the doctor's perspective, C6 and C7 are abandoned, and the parts of the plexus that they previously "fed" are transferred to C5 instead. This is the standard approach for avulsions.

I don't think there are any doctors who would do primary but utterly abandon the nerves that previously derived from C6 and C7. That wouldn't make any sense at all. I'm sure this is just a miscommunication with your doctor. Surgeon's are not known for their communication skills, after all

Kate