United Brachial Plexus Network, Inc.

Kate!!! LOL I'm sorry you went thru that and are going thru it now - it's scary!. That is my biggest fear - that they just don't know what actually will help and what might make things worse! I hope that your cavity tooth is looking spiffy - what a bummer! I'm supposed to have my wisdom teeth taken out - I've been putting it off for years!! You gave me a few more years to think about it! Supposedly my front teeth will start to overlap or something if I don't have this done - but I think I will bleed to death if I do!!
LOL
Christy

There are as yet no long term results for the secondary surgeries many kids have, so we are all just hoping when we think they might help with long term issues-we don't know for certain, the doctors don't know either. I am very aware that surgery itself can cause other issues and bone surgery is a risk factor for arthritis in later life. If it was as simple as "there's something wrong that we can fix" then everybody would automatically get surgery. But it is not that simple.
I too have spoken to the adults, some of them are grateful for the very normal childhoods they had and even though there are surgeries that could help with more function and that can be performed in adulthood, a lot of them choose not to take that option.

It's just not a black and white issue!

I don't think it's fair to label "aggressive" and "conservative" and especially not "positive" and "negative" because these have societal meanings that carry more weight and have great propensity to offend people. All the people on these boards obviously care a great deal about their child's injury, or their own injury and well-being. If they didn't care, they aren't here.
This is a touchy subject and it's divisive but it's necessary because of the ongoing surgery vs. no surgery debate. But I think most people aren't one or the other, there aren't a lot of people who scream "NEVER OPERATE!" just as there aren't that scream "ALWAYS OPERATE!" Basically, you do what is best for you or your child at each stage. Parents will choose to have surgery if it looks like it is necessary, and not to when it isn't necessary. Every injury is very different. If you haven't met other people with this injury this may be hard to understand, some of us have great hand use, others none, some can put their hand behind head, others cannot. Most people can't tell I even have an injury. But I've maybe got 40% of the ability of my uninjured arm, the bpi arm is shorter and I have some pain issues. This doesn't mean that I should have done X or my parents should have chosen Y, it's just the way I turned out, I might have been worse off if they attempted surgery, there's no way to tell what might have been.
What I'm trying to say is, every approach is positive. It's not a rotten tooth; it's a nerve injury. A brachial plexus injury is as complex and individual as the person it happened to. Cavities affect most people the same way, they get worse over time, but this injury could stay the same, could get better, but generally does not seem to get worse, (aside from secondary issues or new trauma) so I find that analogy fairly offensive. My arm is not rotting away because I didn't have enough PT, or primary or secondary surgery.
Given the advice my parents got when I was a child, I could have gotten less range of motion and ability if I'd had the surgeries they could offer then, if those doctors had been “aggressive.” I'm going to be 24 in three weeks, so we aren't talking about a long time period, maybe 10-15 years. Great strides have been made since then and I applaud those efforts, but what surgery is out there still isn't right for every injury, and positive effort doesn't mean operating. It might mean lots of swimming, PT or OT or tummy time or ROM stretches.
Perhaps your doctors think wait and see is the right answer, if you feel they aren't on the same page as you, look around. If you don't agree, then you need to get more opinions. If you're always doing the thing you feel is best by making informed choices, then you are being positive and aggressive. Don't let anyone tell you otherwise.
And the thing is: the hard part is that you're constantly asking yourself if you're taking the right action for your child. Should I have done that or gone there? No doctor can really tell you those answers, but if you go with what you feel and make those choices as informed as possible, then you've done all you can, and you’ve done what’s best for your child.
-Carrie

Carrie
This is a great post!
Thank you.

Carrie, I never meant to say that arms are or are not rotting away. I also didn't pass judgement on those who do or those who don't. So if you are offended by the analogy, I am also offended that you made it into something it wasn't meant to be. I never said that having a tooth with a cavity and letting it sit was a bad thing - I was just trying to compare the two approaches that were questioned and also tried to say that different issues that occur on top of the original issues might make the decision different (the analogy, would you go if there was pain or if it was a front tooth). So, it wasn't meant to be negative, it was just a way I thought it might be easier to explain the approaches. And by the way, when I stop doing stretches or if there's not acitivity for a while for whatever reason, things do get worse. Maybe they don't get worse on you, but they get VERY much worse with my kid. Viva la difference. Everybody's bpi is different. Your bpi and how it has affected you is way different than how it has affected my child. You don't know our experience just like I don't know yours.

Our experiences and decisions were based on the recovery that we saw as Ella went through her first year of life. In our case, we were fine with "wait and see" b/c Ella was showing many signs of a decent recovery by the time she was 3 months old. I liked the "conservative" approach. It suited us well. Her specialist said that he did not see nerve surgery in her future, but we would still watch her progress to make sure. We felt it was fine to make a final decision by the time Ella was 9 months old. At 9-10 months old we knew nerve surgery did not need to be performed. Her doctor said that seconday surgery is almost always the case with a child who has a BP injury who doesn't fully recover by 3-6 months old. I kept that in the back of my head. Finally, when we discussed secondary procedures with her specialist it was either make an appointment for surgery now or let's look at her MRI to see what is going on in her shoulder and we can go from there. To me, why do a surgery unless I know it NEEDS to be done b/c things can get worse. I waited. I waited for her doctor to look at the MRI. We discussed the results of the MRI. Her doctor said that from what the MRI showed surgery should be done as soon as possible. So, that was enough for me. We made arrangements for surgery and the surgery was done at 2 years and 4 months old. Do I wish I did it sooner? Not at all. It wasn't necessary. She could not benefit from that surgery any more than she did at 2years and 4months old. If it was done earlier, there would be no difference so I am glad I waited a while. There was no need to jump into the surgery for Ella's particular injury. Will I agree to another surgery? Maybe. It all depends on why. I would never agree to a surgery that "may" help her though. It would have to be something that "will definitely help her". And the problem would have to be something that "needed" to be fixed. To put it all in a nutshell. I like a conservative approach, but that is me. Some need aggressive and some like the agressive. It all boils down to the parents. Afterall, it isn't the doctor making the final decision, its the parents making the decision and following the advice of their doctors.
~Krista~

I wanted to add...
I do not see Aggressive as "being there is always more we can try to get a little better function"
If I viewed it that way I would say we were aggressive with Ella's care. I can say I like the non invasive procedures over the invasive ones. No surgery vs Surgery. I do what needs to be done. If surgery needs to be done then I will agree to it. I still do everything and as much as I can to get that extra ROM even if it is just a tiny bit. I try to nail all of those tiny problems also. I am conservative when it comes to deciding on surgery, but aggressive in other cases. Hope that makes sense.
~Krista~