I don't know the full extent of my injury but I know they assumed that my muscles were paralyzed and/weak.
As far as I know there is only one avulsion on my mri.
I have all of the nerves impacted from this birth injury.
I appear to move well but have a lot of pain and the reason is I only use my trap muscles to move my arm.
I had many restricted movements. I just don't understand but so far my deltoid is working.
I keep checking to see if I am moving from my traps.
I showed Kate,at camp, how I could touch my elbow right up past my ear with my upper arm pressed against my head.
Now I can't do that and I am assuming that my deltoid is holding on to my arm.
I think Kate could explain this better.
I just checked by raising both arms up and my robpi arm was equal to the left when I tried to move it up to my ear as I did at camp I can't do it.
It feels the same as the left side.
Don't ask me to explain it because I can't and still think it's my imagination.
I am shocked because I can't just bring my arm up the way I did when we were working at camp... ???
I had the sEMG on and my deltoid did not function at all to raise my arm up that way.
I am so puzzled by all of this but whatever I get from it, is better than what I had.
I really don't know the potential for the Myotrac I just know as soon as I used it my brain seemed to remember where my muscles were.
My husband keeps teasing me saying he's sure I've been faking all these years... LOL.
Needle EMG testing of the right upper extremity reveals evidence of chronic denervation
The report goes on to list all of the nerves impacted and I have Horner's so I know it's not a mild injury and I have c4 causing spastic diaphram.
Kath robpi/adult
Myotrac for use in BPI
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Myotrac for use in BPI
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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johnstrike
- Posts: 33
- Joined: Fri Sep 01, 2006 4:42 pm
Re: Myotrac for use in BPI
Kath,
Sorry, but I don't understand you (maybe because I'm not a native English speaker).
Are you saying that you can't repeat the things you learned at the camp with de Myotrac?
John
Sorry, but I don't understand you (maybe because I'm not a native English speaker).
Are you saying that you can't repeat the things you learned at the camp with de Myotrac?
John
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Myotrac for use in BPI
No John... I am saying I do not have the medical background that would allow me to explain in medical terms.
It took years before a doctor bothered to give me an emg because the assumption is that we (obpi/adults) are use to not functioning and therefore do not need to know what is damaged.
I know that is sometimes hard for younger people and tbpi to understand but most older obpi have no idea the extent of their personal injury.
It is always a battle to get physicians to explore and to do the tests that will give us the answers we deserve.
In fact until about 25 years ago we were not even allowed, in the US, to see our own medical records.
I am saying I don't quite understand the technology and how I could regain so much movement so quickly considering the extent of my injury.
I was not aware that all of the movement I had in my arm was from my traps because I always moved that way.
Kate and Amy were the first ones to point that out to me.
You would think with all the PT I have had over the last few years someone would have commented on the fact that I was using the wrong muscles to move my arm.
They just assumed my muscles were paralyzed and would not function.
I only used the Myotrac for a very short time.
I don't think I used this machine for more than a 1/2 hour during camp.
I spent a few minutes with this simple machine and my brain makes a connection to my muscles.
I am still amazed and still processing the changes.
This is very new to me and unbelievable. All my life doctors told me this is as good as it gets.
Most doctors thought I was nuts and a big pain because I wanted to know the extent of my own injury.
It has been a big battle for me to get information regarding my injury.
The doctors just did not get understand why I needed answers since, they believed, there was nothing that could be done for me.
Kath robpi/adult
It took years before a doctor bothered to give me an emg because the assumption is that we (obpi/adults) are use to not functioning and therefore do not need to know what is damaged.
I know that is sometimes hard for younger people and tbpi to understand but most older obpi have no idea the extent of their personal injury.
It is always a battle to get physicians to explore and to do the tests that will give us the answers we deserve.
In fact until about 25 years ago we were not even allowed, in the US, to see our own medical records.
I am saying I don't quite understand the technology and how I could regain so much movement so quickly considering the extent of my injury.
I was not aware that all of the movement I had in my arm was from my traps because I always moved that way.
Kate and Amy were the first ones to point that out to me.
You would think with all the PT I have had over the last few years someone would have commented on the fact that I was using the wrong muscles to move my arm.
They just assumed my muscles were paralyzed and would not function.
I only used the Myotrac for a very short time.
I don't think I used this machine for more than a 1/2 hour during camp.
I spent a few minutes with this simple machine and my brain makes a connection to my muscles.
I am still amazed and still processing the changes.
This is very new to me and unbelievable. All my life doctors told me this is as good as it gets.
Most doctors thought I was nuts and a big pain because I wanted to know the extent of my own injury.
It has been a big battle for me to get information regarding my injury.
The doctors just did not get understand why I needed answers since, they believed, there was nothing that could be done for me.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Myotrac for use in BPI
John:
Actually, the concept that muscles die after a year of no innervation is being challenged now. In adults, after a traumatic injury, things are different than in kids. More and more, doctors are finding that the muscles don't die as quickly in kids as they do in adults. Why? no one knows for sure. It could be all the growth hormone that is running around kids bodies (and that we adults lose) or that the nerves find "new places".
This unit is not going to help if there is absolutely no innervation to a muscle. What it is doing is helping obpis isolate and use muscles that were overpowered by other muscles, co-contracting with other muscles and generally ignored by the brain. For many obpi (my daughter Juliana included) the lack of sensation in the arm has a lot to do with lack of movement. Since you can't tell where your arm is, why use it?
We were told to keep encouraging Juliana to use her arm and we did. I often think that if I say "use your arm" one more time I will puke. But I keep saying it. And I didn't let her do things one handed even though she wanted to. I just wanted that arm in front of her eyes. Now, with this machine, she will get lights too! Our brains are incredible and we use, what? 10% of them...the machine will access the other 90%!
claudia
Message was edited by: claudia
Actually, the concept that muscles die after a year of no innervation is being challenged now. In adults, after a traumatic injury, things are different than in kids. More and more, doctors are finding that the muscles don't die as quickly in kids as they do in adults. Why? no one knows for sure. It could be all the growth hormone that is running around kids bodies (and that we adults lose) or that the nerves find "new places".
This unit is not going to help if there is absolutely no innervation to a muscle. What it is doing is helping obpis isolate and use muscles that were overpowered by other muscles, co-contracting with other muscles and generally ignored by the brain. For many obpi (my daughter Juliana included) the lack of sensation in the arm has a lot to do with lack of movement. Since you can't tell where your arm is, why use it?
We were told to keep encouraging Juliana to use her arm and we did. I often think that if I say "use your arm" one more time I will puke. But I keep saying it. And I didn't let her do things one handed even though she wanted to. I just wanted that arm in front of her eyes. Now, with this machine, she will get lights too! Our brains are incredible and we use, what? 10% of them...the machine will access the other 90%!
claudia
Message was edited by: claudia
Re: Myotrac for use in BPI
I'll try and jump in and answer some of these questions.
First, before she used the Myotrac, Kath did this very strange, contorted movement where she raised her shoulder basically up to touch her ear purely from her upper traps. That is how she got her arm in the air. It didn't utilize any contraction from the deltoids. After she "got in touch" with her deltoids, I asked her to do it again and she then couldn't raise her arm *without* using her deltoids. Using the deltoids is normal. Using only the traps is not. By using biofeedback and reestablishing brain control of her deltoids, she shifted from an "abnormal" pattern to a "normal" pattern. She could probably now go back and re-learn the "abnormal" pattern and do the same thing, but why would she want to? It was a very weak and ineffectual movement and hurt her neck! Kath... I just want to make sure, you can still do this, right?
http://www.wingedrabbit.com/event/picde ... -1&year=-1
To try to answer the other questions:
Feedback will not work if there is no brain connection to the muscle at all (in the case of complete avulsions of all roots, for instance). But if there IS *any* connection between muscle/nerve/brain, biofeedback can help the user "find" it much more easily than just trying to flex the arm. It might just make the "impossible" possible. Instead of having to get a huge contraction which gathers enough muscle fibers to move the joint - which may never happen - you see basically any flicker of activity in the muscle when the brain sends the right signal, and it helps "lead" you to the muscle. It might also help the brain reestablish connections to muscles that got rerouted through odd reinnervation.
What we've discovered with OBPI (and maybe TBPI too?) is that nerves DID recover but the brain had stoppped asking the muscle to perform its original function. For instance, although Kath wasn't using her deltoids for their intended purpose - for abduction - she probably HAD been using them for another purpose. In most OBPI users we could easily get their deltoids to contract by asking them to draw their arms across to the other shoulder. Their deltoids were still active as horizonal flexors but their abduction role had been forgotten!!
So the muscles are connected, innervated and many times *strong*... just used by the brain inappropriately. But trying to get the muscle to work in an all new position is very difficult and biofeedback can really help. Please check out the sEMG board there is a page on just why getting a muscle to do "new tricks" is so hard:
http://bpisemg.proboards102.com/index.c ... 1189057613
Kate
First, before she used the Myotrac, Kath did this very strange, contorted movement where she raised her shoulder basically up to touch her ear purely from her upper traps. That is how she got her arm in the air. It didn't utilize any contraction from the deltoids. After she "got in touch" with her deltoids, I asked her to do it again and she then couldn't raise her arm *without* using her deltoids. Using the deltoids is normal. Using only the traps is not. By using biofeedback and reestablishing brain control of her deltoids, she shifted from an "abnormal" pattern to a "normal" pattern. She could probably now go back and re-learn the "abnormal" pattern and do the same thing, but why would she want to? It was a very weak and ineffectual movement and hurt her neck! Kath... I just want to make sure, you can still do this, right?
http://www.wingedrabbit.com/event/picde ... -1&year=-1
To try to answer the other questions:
Feedback will not work if there is no brain connection to the muscle at all (in the case of complete avulsions of all roots, for instance). But if there IS *any* connection between muscle/nerve/brain, biofeedback can help the user "find" it much more easily than just trying to flex the arm. It might just make the "impossible" possible. Instead of having to get a huge contraction which gathers enough muscle fibers to move the joint - which may never happen - you see basically any flicker of activity in the muscle when the brain sends the right signal, and it helps "lead" you to the muscle. It might also help the brain reestablish connections to muscles that got rerouted through odd reinnervation.
What we've discovered with OBPI (and maybe TBPI too?) is that nerves DID recover but the brain had stoppped asking the muscle to perform its original function. For instance, although Kath wasn't using her deltoids for their intended purpose - for abduction - she probably HAD been using them for another purpose. In most OBPI users we could easily get their deltoids to contract by asking them to draw their arms across to the other shoulder. Their deltoids were still active as horizonal flexors but their abduction role had been forgotten!!
So the muscles are connected, innervated and many times *strong*... just used by the brain inappropriately. But trying to get the muscle to work in an all new position is very difficult and biofeedback can really help. Please check out the sEMG board there is a page on just why getting a muscle to do "new tricks" is so hard:
http://bpisemg.proboards102.com/index.c ... 1189057613
Kate
Re: Myotrac for use in BPI
And to add to Claudia's comment:
There is accumulating evidence that a lot of innervation in the brachial plexus is redundant, at least at first. OBPI kids and adults show increased C7 contribution to biceps, for instance, over uninjured adults or post-birth TBPI. Basically, kids injured at birth are somehow able to take advantage of additional redundancy and end up with innervation of muscles which is different from "normal" but still works. I think this is also a big part of what we were seeing at Camp.
Kate
There is accumulating evidence that a lot of innervation in the brachial plexus is redundant, at least at first. OBPI kids and adults show increased C7 contribution to biceps, for instance, over uninjured adults or post-birth TBPI. Basically, kids injured at birth are somehow able to take advantage of additional redundancy and end up with innervation of muscles which is different from "normal" but still works. I think this is also a big part of what we were seeing at Camp.
Kate
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Myotrac for use in BPI
Thank you Kate that is exactly what happened.
She could probably now go back and re-learn the "abnormal" pattern and do the same thing, but why would she want to? It was a very weak and ineffectual movement and hurt her neck! Kath... I just want to make sure, you can still do this, right?
Kate I was trying to mimic the "abnormal" pattern this morning and I can't. I don't want to push it but when I use both arms it is as if something stops them from going into the abnormal position. My left unaffected arm could never get into that position.
I notice on robpi arm when I tried, this morning, it was uncomfortable in the traps and I could not do it.
This will be a huge learning curve for me.
I can also raise my hand over my head without compensation now. I assume I am still using my triceps.
I am not arching my back or throwing my arm up in the air.
I believe my biceps will be the hardest for me to get some strength and to function.
They need a great deal of work.
Then I will try for supination... that will be a miracle.
Kath robpi/adult
She could probably now go back and re-learn the "abnormal" pattern and do the same thing, but why would she want to? It was a very weak and ineffectual movement and hurt her neck! Kath... I just want to make sure, you can still do this, right?
Kate I was trying to mimic the "abnormal" pattern this morning and I can't. I don't want to push it but when I use both arms it is as if something stops them from going into the abnormal position. My left unaffected arm could never get into that position.
I notice on robpi arm when I tried, this morning, it was uncomfortable in the traps and I could not do it.
This will be a huge learning curve for me.
I can also raise my hand over my head without compensation now. I assume I am still using my triceps.
I am not arching my back or throwing my arm up in the air.
I believe my biceps will be the hardest for me to get some strength and to function.
They need a great deal of work.
Then I will try for supination... that will be a miracle.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Myotrac for use in BPI
Sorry Kath, I wasn't clear. I meant, can you still lift your arm like in this picture from Camp?:
http://www.wingedrabbit.com/event/picde ... -1&year=-1
I think you mean you can't move the weird way you did before you "found" your deltoids, not that you've lost what you were able to do after using the myotrac, right?
Kate
http://www.wingedrabbit.com/event/picde ... -1&year=-1
I think you mean you can't move the weird way you did before you "found" your deltoids, not that you've lost what you were able to do after using the myotrac, right?
Kate
-
Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: Myotrac for use in BPI
I can still lift the same way I did at camp.
I can do it easier now with out making a face.
Believe me, I keep checking and I am touching my mouth with out that weird trumpet movement.
I can eat the cookie without putting my head down to reach it and my arm up in the trumpet position.
I get my hand to my mouth with my elbow straight out now.
That was something I could never do.
I think Amy has the photo's of all the obpi adults failing the cookie test...
It was our sick sense of humor coming out again.
I am glad because I can see how I failed and the progress I made.
I can't wait for the Myotrac to get here.
I am sure my muscles are VERY weak but at least I can work on them and get them to work properly I hope.
Kath robpi/adult
Message was edited by: Kath
I can do it easier now with out making a face.
Believe me, I keep checking and I am touching my mouth with out that weird trumpet movement.
I can eat the cookie without putting my head down to reach it and my arm up in the trumpet position.
I get my hand to my mouth with my elbow straight out now.
That was something I could never do.
I think Amy has the photo's of all the obpi adults failing the cookie test...
It was our sick sense of humor coming out again.
I am glad because I can see how I failed and the progress I made.
I can't wait for the Myotrac to get here.
I am sure my muscles are VERY weak but at least I can work on them and get them to work properly I hope.
Kath robpi/adult
Message was edited by: Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Myotrac for use in BPI
Hey Kath,
I think you can. Keep working your "new" biceps with your elbow held at your side. Eventually I think this will get easier. Your deltoids co-fire with your biceps, just like every other adult with OBPI who tried the unit!! I think this is going to be the hardest "pattern" to break, and you will only break it when your biceps get strong enough to work against gravity and don't need that "elbow to the side" position.
Kate
I think you can. Keep working your "new" biceps with your elbow held at your side. Eventually I think this will get easier. Your deltoids co-fire with your biceps, just like every other adult with OBPI who tried the unit!! I think this is going to be the hardest "pattern" to break, and you will only break it when your biceps get strong enough to work against gravity and don't need that "elbow to the side" position.
Kate