United Brachial Plexus Network, Inc.

Hello,

I am looking for information on the long term effects of BP injury. Specifically, when the injury has reasonable recovery. The patient recovers approximately 75% of function but still has weakness and reduced range of motion in non-dominant arm as a result of injury at birth. Any thoughts or references would be appreciated. Thank you.

Timothy - you left chat very abruptly last night. Did I scare you away?

Although as a mom with a child who has a bpi I'd like to say - oh yes my daughter who has reasonable recovery right now at age 5 will be fine when she gets to be 50 - I know in my heart that this is NOT true. When one's nerves are torn or avulsed - or one does not have COMPLETE recovery at a very early age (meaning within the first few months of life) - the result is that the child has a PERMANENT and SEVERE INJURY. That word PERMANENT has broken my heart in two.

I know that degradation of the joints occur very young, scar tissue is there from the original injury and also from any surgeries that have been done, there is always risk a dislocation, complete bone degradation, there is the possibility of nerve compression, overuse syndromes (esepcially in the unaffected arm), tendency toward arthritis starting at a seriously young age and there's no guarantee that a function that is there one day is there the next day. (this loss of function - we we've experienced this with EACH of Maia's growth spurts - last one lasting 4 months!)

Am I being a downer? you might see it this way - but it's been VERY hard for me to look at this in an honest way and I'm finally at a place where I know that this is what the future holds and that this is the honest truth. Everything I have done with my daughter - everything I plan to do with my daughter has her future in mind. I can only try to reduce the inevitable but it is the inevitable. I can get her involved in a lot of specific activity, I can teach her alternative pain control modalities, I can provide her with a warm water aquatic environment to give her joints warmth and a chance for some freedom but the outcome is still that when she gets older, there will be severe problems.

Hopefully by then, the pain medication will be such that it won't interfere so much with the psyche. Hopefully by then, there may be a plan for older adults with obpi but right now they are spending ALL of their time and resources helping the newborns - coming up with ways so that maybe - just maybe they'll have a better chance when they get older.

My heart goes out to the adult obpis. I don't want to embarrass anyone or make them feel like they are any less of a person (because they are not any less because of this) but I have met quite a few of them. I have seen their deformities. I can see the years of pain written all over their faces and their bodies. They've learned how to hide their arms in a way so no one can tell in a quick glance.

I am a massage therapist and I have been helping people with pain for the last 25 years - but this is way different. This is something that no massage will take away - might make it feel better for an hour or two but that's about it.

You said last night that you were gathering information for a friend (I thought you said that it was for a child? and now you are writing as if they are an adult?) The best thing your friend can do is to get to a brachial plexus specialist - to come up with a plan of action for the best quality of life.

If you need specific medical information pertaining to this you should contact the specialists - the doctor who has been doing this the longest is Pr. Gilbert in Paris. Unfortunately - he is the one that made me realize two years ago that the inevitable is that even the surgeries that we are doing today are not long term answers, that a permanent and severe injury is what it is - a permanent and severe injury.

Good luck in your quest for information,
francine

(Respectfully) Just curious...I saw on your profile that you are an MD. What is your field? Are you gathering info. for personal reasons or for your occupation?

I don't have much to add to Francine's post. My daughter is almost 2 and we are still learning a lot about the long term effects. I know that there are many and that is why we are trying to do all we can at this point to possibly minimize them. My daughter's humerus is not growing at the same rate as the other arm, there is a large space between the head of the humerus and the socket, so she is high risk for dislocation. The Drs. think her radial head may also be dislocated so both joints are subject to future problems. I still have not come to terms with the label "Permanent Severe Injury" so it is hard for me to discuss this topic.

My son is 13 and so far it has been a horrible thing for him to deal with. His whole life he will have problems because of this injury...it's very sad. It's not something easy to live with.
T.

Are you the doctor discussed in this website?

http://www.brighterway.com/pro_med_reviews.htm

what type of info are you looking for, as with any injury you can find what you look for , you know that, The function depends on the injury(duh) and the injuries have a huge range of differing degrees...also to be considered to affect recovery is the individual s original constitution and ability to recover,surroundings, access to therapy appropriate for all those things etc ect

I have to second Francine's opinion.
I have seen my CHILD in pain. I can't imagine what it is like for the adults. The function that an obpi gets is related to the extent of their injury, their general disposition(how tough they are), and how good they are a compensating. I find it funny that so many of us describe our children in similar ways: tough, won't be held back, works hard to accomplish tasks...and this is as kids. The tasks they are trying to accomplish are small: playing with a toy, for instance.
I think for adults this is much more challenging. The skills which we need to accomplish have consequences: driving a car, making dinner, breast feeding a child, using a computer, carrying papers or books, holding down a full-time jobs, just to name a few. All of these things require some form of compensation. I think the compensation adds to the pain. Sitting improperly can lead to back, neck, and hip pain. The overuse injuries to the unaffected arm are shocking. In an effort to keep up, they use the unaffected arm to do three times as much as it should.
When I look at my adult obpi friends, I marvel at their sense of humor, but as they squirm in their seats late in evening, as they hold their affected arm(in a way only the parent of an obpi could notice), as they have their mates wrap their coat around their shoulders (it is too much effort to put their arms in) I see their pain.
As my daughter's injury is severe, and she has already spent time dislocated in the shoulder, and is permanently dislocated at the elbow, I fear for her pain. I know there will be times that she will ask for tylenol before bed. There are already times when she is clearly uncomfortable and we sit quietly together and read to take her mind off a pain she should never have had to feel.
If you want to know the long-term effects of this injury--call me in 25 years, I'll let my daughter tell you herself.
claudia

I am not an obpi, I have not grown up with this injury. However, I would like to point out that whilst 75% might seem a 'reasonable recovery' to an able bodied person who isn't directely affected, unlike us and our families, it is still ONLY 75% of a 'normal' arm and will of course have long term effects on the individual concerned. Most of us manage to live productive and fulfilling lives despite our 'disabilities' but we have to adapt constantly as joints degrade and imbalances start to effect us, our lives are perfectly livable but definitely 'different' than if we had no bpi. I would not be happy if I was denied any kind of assistance or treatment because I cope so well, it makes me very angry when I read posts from parents saying their therapy or help at school has been cut because their childs injury is not perceived as serious enough to need it. Hellooooooo.....if people don't need help, they don't ask for it, if individuals manage fine for decades then have to give in and retire or ask for other help lest they cause the overuse symptoms to become unmanageable, then they have to be allowed to do that. We should not suffer, any of us (obpi or tbpi)just because for so long we have managed not to be a burden on our families or employers, we should have our great efforts ackowledged together with our ever changing needs. If you are really seeking help for a friend, and that friend is claiming to have overuse issues after managing for many years with no apparent problems, then listen to them. I have never spoken to anyone with a bpi who wants to maximise their defecits, quite the opposite, most of us downplay our issues because that's how we have learnt to deal with life. We believe we can do anything, but we know when to stop, years of babying 'the arm' and trying to guard against overuse in the 'good' arm teach us when it's time to say......'Ouch, I'm not doing this any more.' I've only had my bpi 22 yrs, my joint degradation has occurred in a body that was a healthy, fully formed adult before my injury- I can only imagine how 50 years plus of this would affect the body, if you are an MD then I would think this would be pretty obvious to you. We need to be allowed to stop undertaking any particular activity when we perceive it is starting to have a negative effect, NOT be made to wait until an annoying pain which is alerting us to future problems becomes something recognisable by a doctor!
Sorry if I sound a bit rude, but I'm just amazed that anyone would question the needs of a person with a bpi or have any doubt about the long term outcome of such an injury. I'd even go further than Francine, I think if any bpi (obpi or tbpi) doesn't resolve COMPLETELY in weeks rather than months, there will be long term negative effects. Yes, we mostly cope, and we are all different in how we perceive and cope with pain and functional issues, but those effects are still there and are not open to dispute as far as I'm concerned. A time comes to all of us when we have to accept the changes, and so do those around us and the medical professionals.

ps....one thing that can be very useful is getting checked out by an ortho (or similar) BEFORE long term changes make themselves felt, all the 'issues' you may have at that time can then be documented. This report can then be used as a baseline assessment to measure any future changes against. That way, noone can dispute the changes as and when they happen. This was recommended to me by a post-polio group as how they deal with the changes that are now happening to them and force doctors and employers to acknowledge that their condition changes over time and their needs change. As a group, post polio sufferers have brought the subject of secondary, long term problems to the fore and they can be very helpful and informative about the long term issues associated with any nerve injury.

I talked to my Dr. about the post polio syndrome and was told " that is completely different. Polio isn't an injury. Injury doesn't get worse. All of your damage was done at birth. Jenny, your post was so right-on track it made me cry. So did Francines'. Especially the part about putting the coat on. I wish--for one day-- some of the "harder" people I know could have my body--somettimes I get so frustrated with the increasing pain--especially in the shoulders--it hurts to put a coat on--to turn the wheel of the car-- to lift a bag of groceries. Thanks for the post. Pat