In November it will be 3 years since Brachial Plexus Neuropathy affected my daughter at the age of 2 due to a virus.
Although I took her to the hospital immediately, had numerous tests done including MRI's, Nerve Graphs, etc. The neurologist would not admit that she had a brachial plexus. She has lost all of her muscle in her right arm from her neck to her wrist. She also has little to no nerve activity.
The problem is that since I live in Canada, there seems to be no doctor in this country that will look at her numerous MRI's and say that we can see the actual injury.
It frustrates me to no end that this beautiful little girl, could have actually had a chance and regaining some of her arm back, had the specialist had taken the time over the year that he say her and said.."this is what she has and we are going to send her somewhere that specializes in this". But instead he ignored her.
It wasnt until I took her to the Mayo Clinic in Minnnesota, where someone actually gave me a name. Within 5 minutes of the doctors there meeting with her, they knew exactly what was wrong and scheduled her for surgery the following morning. However Canada refused to finance the surgery since it could have been done here all along.
SInce then I have to fly her once a year to Toronto, so that she can be assessed. Our last visit they started talking about performing a Free Muscle Transfer. This scares me because she is only 5.
How does a parent make that decision? After all this time, can it be successful? What do I do?
Is there anyone that has any advice.
So Scared
Mommys Little Girl
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Mommys Little Girl
"Mgoodland",
Please post on the General Forum Message Board too as many MOms read and post there too. YOu are welcome on ALL message Boards.
"Gramma" Carolyn J...sometimes bossy
LOBPI/73+
Please post on the General Forum Message Board too as many MOms read and post there too. YOu are welcome on ALL message Boards.
"Gramma" Carolyn J...sometimes bossy
LOBPI/73+
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thebrain
- Posts: 33
- Joined: Mon Jul 19, 2010 12:47 am
- Injury Description, Date, extent, surgical intervention etc: 6/12/10 avulsion of several roots due to motorcycle accident. So far I've
had two nerve transfers: intercostal to biceps and spinal accessory to
superscapular. The superscapular is working, holding my shoulder in place so I don't have to wear a sling all the time, and I can 'lift' that arm a few degrees away from my body. The bicep is firing but not enough to flex, yet. - Location: Palo Alto, CA
Re: Mommys Little Girl
There are a lot of people on here who have had to make that decision for themselves, and can give you some insight into how they made that decision. My doc has suggested a free muscle transfer for me, I haven't made my mind up about it. I don't see some info about your daughter that I think would be relevant to your decision: which arm is affected (dominant/non) and to what extent (does she have any function), and also, are they suggesting muscle transfer ONLY or a nerve transfer as well?