Question

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Question

Post by ConcernedDad » 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

jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Question

Post by jmar » Wed Apr 15, 2015 3:23 pm

Have you taken her to a BPI SPECIALIST? . Has she had a nerve condution test done? If not then that is where I would start. A full test. Not just a partial that tests only one nerve. If she has muscle wasting because of lack of use of those muscles it MIGHT be possible to stop the muscle wasting.

ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Re: Question

Post by ConcernedDad » Wed Apr 15, 2015 4:57 pm

Hi jmar,

Thanks for your response. She has seen Dr. Nath on a couple of his outreaches and at those appointments he basically just said that "no surgery is indicated."

She has also seen Dr. Roger Cornwall at the Cincinnati Children's Hospital Brachial Plexus Center in person (who said that he did not believe she had a brachial plexus injury) and Dr. Waters from Boston has viewed videos of her and told us that it was inconclusive but that he thought she had good function.

Every local PT or OT that she has seen attributes everything we've noticed to torticollis (that she had earlier in life) and even the local specialists (neurologists, a physiatrist from the Rehabilitation Institute of Chicago, and another physiatrist who is in charge of the Brahcial Plexus unit at a Children's Hospital) all say that while she may have suffered a minor injury, they think she will be "fine." It is this one neurologist who noted some muscle wasting.

She also has what I would consider to be some subtle scapular winging, although even that is somewhat inconclusive.

I suppose I just want to "nip it in the bud" before it's too late... but, at the same time, it's difficult because a high majority of the doctors and therapists who have seen her do not recommend an MRI or an EMG.

Are there any other less invasive tests that anyone might no about that can kind of guide our decisions? For example, can an ultrasound (just as an example) or something similarly less invasive confirm muscle wasting for example... and then we would know that we need to take the next step with a more invasive test? (My wife... and to some degree I do agree with her... is opposed to submitting her to general anesthesia as long as all of these doctors don't seem to think it is necessary).

I hope this is making sense... It's just a very difficult situation because while we are happy it's subtle, it also makes ensuring that we are properly treating whatever is going on more difficult.

As always, thanks for your help!

Concerned Dad

ConcernedDad
Posts: 7
Joined: Fri Oct 10, 2014 10:29 am
Injury Description, Date, extent, surgical intervention etc: Not officially diagnosed

Re: Question

Post by ConcernedDad » Wed Apr 15, 2015 5:17 pm

I don't mean I ramble on... But I suppose I'm just trying to understand muscle wasting in general. It's strange because she uses her right arm all the time... I would just say that it is slightly less "dense" or not quite as "bulky" as her left arm in the bicep/tricep/shoulder area. So, admittedly without having a good understanding of the process of muscle atrophy, I would think that she wouldn't be suffering from "disuse atrophy" and because she has near normal function I would think that would mean that the nerves controlling those muscles are nearly normal... But I don't know if a mild injury to a nerve can lead to atrophy that would just continue to worsen. The professionals that I've talked to about this have, for the most part, reassured me that mild nerve injuries only get better and that function continues to improve, maybe not fully, but that it shouldn't get worse. We have more or less seen that... But the confusing thing is that I feel like visually speaking, her arm looks as though it has worsened slightly in terms of muscle "bulk."

I suppose my biggest fear is that we assume she is fine or that she will be just fine, and we just allow her to slowly worsen to the point where it would be too late to do anything to help her. Can that even happen?

I don't know... I'm sorry. I'm just really confused, concerned, and feeling like I'm just not quite sure where to go or what to do to get somewhat solid answers about all this. Can anyone offer any insight or does anyone know anyone in the Chicago area that may be able to help?

Thanks always for taking the time to read and respond. I really can't explain fully how much I appreciate it.

Concerned Dad

Master DIVER TOM
Posts: 753
Joined: Tue May 05, 2009 11:51 am

Re: Question

Post by Master DIVER TOM » Fri Apr 17, 2015 2:00 pm

The injuries , do look like the arms are wasting , mine does to :shock:
I am glad that there is a good amount of usage, the more you can use the limitation the better in play or activity the better, the strength of the limitation does happen overtime as you learn to adapt your way, there is far greater number of post , saying this to. Some muscles will grow by using them others I never could improve, Some muscles I never could improve, I never lost any usage and a wasted arm it bewilders me ??? How can you loss muscle if you cant build the muscle to begin with :shock:
You and your daughter have come far and are going further by you trying to help to ;) Find joy in how far you have come and focus on having fun :D My best day is when other did not focus on my limitation and my deform arm and hand, with limited usage to from my birth erbs.
remember the young lady on the Amazing race , with one arm. Lost the arm by shark attack :roll:
It truly amazes me, and posts of positive outcomes to.
Hope this might help, you and your daughter are really doing great! ;) :D
Tom

User avatar
KimW
Posts: 58
Joined: Fri May 09, 2008 9:24 pm
Injury Description, Date, extent, surgical intervention etc: My daughter has a right obstetrical injury. She is 16.
Two surgeries include nerve graft and muscle release.
A great kid that plays soccer, rides horses, plays the piano
and clarinet.

Re: Question

Post by KimW » Mon Apr 20, 2015 10:39 pm

I'm sorry your child was injured. You've had some of the best BPI docs in the business look at her (or her video). Dr. Waters and the Cincinnati Brachial Plexus team are both very knowledgeable. My daughter (16) has been seen by both and is being monitored by Cincinnati. The fact that Dr. Nath did not want to risk a surgery either is a good sign. It doesn't sound like an avulsion but possibly a stretched nerve (did any of the doctors make that diagnosis?) In many cases, stretched nerves will resolve with therapy. Are you doing range of motion exercises every day, were those recommended to you? If she does have wasting in a certain muscle, it may be the opposite muscle is stronger (tricep fighting the bicep or vice versa). Again, range of motion exercises will help this, as will therapy. Look for therapy/games/play that makes her use the weaker muscle versus the stronger one. It sounds like you are doing all you can for your daughter and the prognosis is positive! It's hard to wait and see, we've all been there, but monitor her progress and if anything changes, revisit a specialist.

marlin's mom
Posts: 4
Joined: Tue Feb 18, 2014 3:30 pm
Injury Description, Date, extent, surgical intervention etc: 6/7/2000

Re: Question

Post by marlin's mom » Tue Apr 21, 2015 10:59 am

you might try some estem therapy to give her muscles a little hand up and also some common sense measures like binding the left arm for periods of time so that she is forced to use the right arm. the imbalance might be as much that she is using her left for more and it is bulkier than it would be if used normally, and the left is a little behind from lack of use.

If she has a nerve that has repaired naturally there would still be some issues with the muscles that will resolve naturally as time goes on and she uses the arm more and more.

Master DIVER TOM
Posts: 753
Joined: Tue May 05, 2009 11:51 am

Re: Question

Post by Master DIVER TOM » Sat Apr 25, 2015 9:05 am

I think these are Great POST ;)
Living with birth erbs from the 50s, and learning to use the limiation your left with in life :shock:
Weird is because of my birth erbs , I think one handed :shock:
Very important to use the limiation to adapt and get better range of motion ;) Learning to do things one hand, help me in life to.
I learn more in trying to adapt using my limiation in play and sports than a strucred theropy for range of motion :roll: Squzzing a small rubber help me for grasp and water exercise help range of motion and being in water help range of motion to, Fun way to execice help me :shock: ;)
Puzzling :shock:
Just thinking, I hope this Might help?? :roll:
Tom

Master DIVER TOM
Posts: 753
Joined: Tue May 05, 2009 11:51 am

Re: Question

Post by Master DIVER TOM » Sun Apr 26, 2015 7:10 am

I thought I would add this to my last post :shock: :roll:
Binding the good arm ??
My good arm is wired to do most things I have adapted to in life.
Dreaming up ways to adapt my limitation to a task , all ways was a challenge :|
My Mom , Just always told me to try to include what I could in a task ,activity or play growing up with birth erbs ;) :D
Somethings, you have to self teach to use 1 1/2 arms to overcome life in a two handed world :roll:
There is no right or wrong answer to this idea of binding the good arm, encouraging to use both arm is the trick , self thought works to ;)
You Guys are doing great :D I learn tenacity from my mom teaching me to try like you do to :D
Tom

jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Question

Post by jmar » Sun Apr 26, 2015 8:13 pm

The number one excercise to help with strength and range of motion is water exercises. TEACH HER TO SWIM BEFORE YOU TRY THIS. fill the bathtub up to her chest level. Let her splash. get some pool toys to play with. Get an empty shampoo bottle and let her squeeze water into it under the water then put it over her head to squeeze the water out. But dont tell her this is therapy. That is your secret. But taking her to the pool is best.

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