How Does it Feel?
How Does it Feel?
Hello! My little girl (2 1/2) has an LOBPI and I was just wondering if somebody could put into words how it feels to have this injury. We have been told that her nerve was stretched or compressed and it does not appear to have been torn in any location. We have also been told repeatedly that she is a highly functional BP patient and she amazes me at how she has adapted to her circumstances since birth...sometimes I forget that she even has a BPI! But I just want to be as educated as I can be about any pain or discomfort she may feel so I can be as empathetic towards her as possible.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: How Does it Feel?
Hi,
I think it's great that you want to know this stuff so you can better understand what she may be dealing with.
Some of us never felt pain growing up, unless we got bumped or fell. I never had pain unless something hit my arm, then it felt like a sharp type of feeling, really painful. Often when a child gets sick with a fever or other illness then may feel pain in their arm, or during growth spurts.
I too am very functional, I just don't have active external rotation or hand-to-mouth (or higher forward flexion for that matter). But I did every activity possible, especially swimming, ballet and figure skating. I competed in figure skating until I was 28 yrs old.
Feel free to ask us any questions, we will do our best to answer you
Marieke 33, LOBPI
I think it's great that you want to know this stuff so you can better understand what she may be dealing with.
Some of us never felt pain growing up, unless we got bumped or fell. I never had pain unless something hit my arm, then it felt like a sharp type of feeling, really painful. Often when a child gets sick with a fever or other illness then may feel pain in their arm, or during growth spurts.
I too am very functional, I just don't have active external rotation or hand-to-mouth (or higher forward flexion for that matter). But I did every activity possible, especially swimming, ballet and figure skating. I competed in figure skating until I was 28 yrs old.
Feel free to ask us any questions, we will do our best to answer you
Marieke 33, LOBPI
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: How Does it Feel?
Ok, I will give it a try? First I would make a copy of marieke answer and save it for your child, it does show a life time with the challenge with erbs. There is alot more being done for erbs and pain now than in the 1950s or 1960, when I was growing. I am crazy to diving a 18 wheeler for over 20 yrs without a ticket or accident. I only have simple grasp with erbs, This was prosable be a act of GOD? I had huge pain day to in my erbs arm. But I was happy I could do this and stay safe,go figure??
Best wishes!
PADI MASTER DIVER TOM
Best wishes!
PADI MASTER DIVER TOM
Re: How Does it Feel?
Thank you so much for sharing your experiences with me. I really appreciate the insight you have given me into my daughter's condition...it will be very helpful!
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Michelle_16
Re: How Does it Feel?
Hiya!
First off, your doin the right thing by finding out about Erbs early off and trying to understand how ur daughter feels! thats fab!
Im 23 and i have right sided erbs palsy from birth. I would say i am pretty high functioning but physios often tell me different and tell me that I do things with the wrong muscle group - but i can do it and thats all that matters to me.
How it feels....not much different to my other arm. Some parts of my arm are hypersenstive so if they are even touched a wee bit its really quite sharp feeling. Some of my lower arm is a little more numb and i dont feel so much. But whats important to remember is that we'v never known any different than how our effect arm feels so for us its "normal". Sometimes my arm can feel heavy and tired, this normally happens after iv been particularly active (so maybe for your daughter when she's been out playings). Sometimes I get an aching shoulder (my shoulder slopes tho so i think thats why it gets achy) but ths can be easily resolved by giving it a wee rub and just relaxing and resting it.
When i was younger i really didnt see my arm as different from the other one at all...its just as iv gotten a little older than iv noticed a few aches and different sensations etc.
Your daughter will learn her own unique way of getting things done! we all do! putting hair up, fastening bras etc we can all do it. I go to the gym, i love running and swimming, iv just finished my degree in psychology. My point is, I have "normal" every day lifestyle that every other person has. (I know this was not the point of this post but its always good for parents to know that their kid will be fine
)
I hope this has helped and if you want to know, just ask! your definately in the right place.
Michelle
Scotland (ROBPI)
First off, your doin the right thing by finding out about Erbs early off and trying to understand how ur daughter feels! thats fab!
Im 23 and i have right sided erbs palsy from birth. I would say i am pretty high functioning but physios often tell me different and tell me that I do things with the wrong muscle group - but i can do it and thats all that matters to me.
How it feels....not much different to my other arm. Some parts of my arm are hypersenstive so if they are even touched a wee bit its really quite sharp feeling. Some of my lower arm is a little more numb and i dont feel so much. But whats important to remember is that we'v never known any different than how our effect arm feels so for us its "normal". Sometimes my arm can feel heavy and tired, this normally happens after iv been particularly active (so maybe for your daughter when she's been out playings). Sometimes I get an aching shoulder (my shoulder slopes tho so i think thats why it gets achy) but ths can be easily resolved by giving it a wee rub and just relaxing and resting it.
When i was younger i really didnt see my arm as different from the other one at all...its just as iv gotten a little older than iv noticed a few aches and different sensations etc.
Your daughter will learn her own unique way of getting things done! we all do! putting hair up, fastening bras etc we can all do it. I go to the gym, i love running and swimming, iv just finished my degree in psychology. My point is, I have "normal" every day lifestyle that every other person has. (I know this was not the point of this post but its always good for parents to know that their kid will be fine
) I hope this has helped and if you want to know, just ask! your definately in the right place.
Michelle
Scotland (ROBPI)
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: How Does it Feel?
To Michlle 16! You are Awsome!! I wish I could of said it your way!! I am forever to hear to incorage others with erbs to TRY!! You will fail at things , you will I DID over a life time overcome by trying. Remember It will happen , Alot of us crawled one handed at birth. I am the same crazy diver doing a Shark feeding in Freeport. I think in one arm from birth?? Last thing fine Joy over Depression! Michile 16, They still have the word FAB? Thats so 60s , Dear Fab was a beetle thing?
Best Wishs,
Tom
Best Wishs,
Tom
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Master DIVER TOM
- Posts: 759
- Joined: Tue May 05, 2009 11:51 am
Re: How Does it Feel?
Thanks , you are AWSOME! The Fab thing was a smile to me.
Tom
Tom