Question
Posted: Wed Apr 15, 2015 2:14 pm
Hi everyone,
As always, thank you so much for all of the postings. Reading everyone else's experiences has been very helpful.
Just to review quickly, I have a two year old daughter who has been "unofficially" diagnosed with an upper brachial plexus injury (I say "unofficially" because we never had any imaging done and there is some dispute among the therapists and neurologists about whether or not an injury did occur... although I am almost convinced from everything I've read, people I've spoken with, and research I've done that at this point at least a mild injury did occur).
I am writing because I just have a couple quick questions:
1. We are blessed that our daughter has very good function of her right arm (injured side). In fact, someone who is not familiar with this injury probably wouldn't be able to tell that anything was different. What they would be able to see however is that if her shirt is off, there is a slight asymmetry between her right shoulder/upper arm muscle bulk compared to that of her left. Due to this as well as a very subtle difference in the way she moves her arms at times (very subtle) a neurologist ordered an MRI that would be 4 hours long and would require general anesthesia. Our daughter's prior PT, Dr. Cornwall in Ohio, and her current OT (along Dr. Waters in Boston after viewing some videos) all believe that whether she sustained a nerve injury or not is debatable. Because of this uncertainty, and that fact that most therapists and doctors have told us they believe that she will be "fine" or "okay," my wife and I are very hesitant to proceed with an MRI. Can anyone give some experience or guidance in regards to the decision to proceed with an invasive test like this? We know that the risks are very low... but we just want to be sure that we do not subject our daughter to general anesthesia unless it is absolutely necessary. We are having trouble with this decision and I suppose if anyone had any opinion about at what point proceeding with a test like this makes sense, it would help us.
2. I've already mentioned the difference that is noticeable in the muscle bulk of our daughter's upper arms and shoulder areas. I'm concerned about what that means and what we can expect in regards to this in the future. It's been very difficult because one neurologist believes what we are seeing is "muscle wasting" as she called it... yet, like I said, she has good function (and we feel very lucky for that, as I know there are many people who post to this board who aren't quite as lucky and again, I truly appreciate you sharing your experiences). I suppose I'm wondering (generally speaking, because I know every person's injury is different), if there is any "muscle wasting" that is occurring or has occurred... is this automatically a progressive thing that will continue as she grows and lead to a decrease in function, or can this kind of "resolve" or stop to where, yes, she may have some slight asymmetries, but it is not something that continues to worsen? And... what, if anything, can we do about any of this?
Again, I am just so naive about some of this... I really do appreciate all of your help. To everyone on here... thank you so much.
Concerned Dad
As always, thank you so much for all of the postings. Reading everyone else's experiences has been very helpful.
Just to review quickly, I have a two year old daughter who has been "unofficially" diagnosed with an upper brachial plexus injury (I say "unofficially" because we never had any imaging done and there is some dispute among the therapists and neurologists about whether or not an injury did occur... although I am almost convinced from everything I've read, people I've spoken with, and research I've done that at this point at least a mild injury did occur).
I am writing because I just have a couple quick questions:
1. We are blessed that our daughter has very good function of her right arm (injured side). In fact, someone who is not familiar with this injury probably wouldn't be able to tell that anything was different. What they would be able to see however is that if her shirt is off, there is a slight asymmetry between her right shoulder/upper arm muscle bulk compared to that of her left. Due to this as well as a very subtle difference in the way she moves her arms at times (very subtle) a neurologist ordered an MRI that would be 4 hours long and would require general anesthesia. Our daughter's prior PT, Dr. Cornwall in Ohio, and her current OT (along Dr. Waters in Boston after viewing some videos) all believe that whether she sustained a nerve injury or not is debatable. Because of this uncertainty, and that fact that most therapists and doctors have told us they believe that she will be "fine" or "okay," my wife and I are very hesitant to proceed with an MRI. Can anyone give some experience or guidance in regards to the decision to proceed with an invasive test like this? We know that the risks are very low... but we just want to be sure that we do not subject our daughter to general anesthesia unless it is absolutely necessary. We are having trouble with this decision and I suppose if anyone had any opinion about at what point proceeding with a test like this makes sense, it would help us.
2. I've already mentioned the difference that is noticeable in the muscle bulk of our daughter's upper arms and shoulder areas. I'm concerned about what that means and what we can expect in regards to this in the future. It's been very difficult because one neurologist believes what we are seeing is "muscle wasting" as she called it... yet, like I said, she has good function (and we feel very lucky for that, as I know there are many people who post to this board who aren't quite as lucky and again, I truly appreciate you sharing your experiences). I suppose I'm wondering (generally speaking, because I know every person's injury is different), if there is any "muscle wasting" that is occurring or has occurred... is this automatically a progressive thing that will continue as she grows and lead to a decrease in function, or can this kind of "resolve" or stop to where, yes, she may have some slight asymmetries, but it is not something that continues to worsen? And... what, if anything, can we do about any of this?
Again, I am just so naive about some of this... I really do appreciate all of your help. To everyone on here... thank you so much.
Concerned Dad