Dear All,
Well I am newly in this precarious state where I am a mother to a six year old brachial plexus injured daughter, and this morning my doctor told me that I have advanced osteoarthritis in my brachial plexus! (I thought it was stress when I would lose control of holding up my head!) I know that many parents to children of the brachial plexus injury have postponed concerns for their own health, I was one of them. The pain in my right arm just became too difficult, and the reason why I am writing, my frustration in my intensive keyboarding occupation has become just too great. I know that many of you have made referrals to occupational possibilities for people of brachial plexus paralysis, can anyone out there make referrals for an adult with brachial plexus arthritis?
Great thanks to all that read this, and to those that reply.
Lizzie
Double whammy
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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: Double whammy
Hi, sorry to hear about your news!
Glad you finally got it looked into though.
regarding work...What types of things do you like to do? Qualifications? What have you done in the past?
Good luck!
You can teach pre-k... or nursery school, I did and it wasn't bad on my arm/shoulder.
marieke (30, LOBPI)
Glad you finally got it looked into though.
regarding work...What types of things do you like to do? Qualifications? What have you done in the past?
Good luck!
You can teach pre-k... or nursery school, I did and it wasn't bad on my arm/shoulder.
marieke (30, LOBPI)
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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: Double whammy
How do you get osteoarthritist in the brachial plexus?
I thought that was strictly a bone disease from wear and tear on the joints.
I have it in both hands but not in my BP.
Kath (adult/obpi)
I thought that was strictly a bone disease from wear and tear on the joints.
I have it in both hands but not in my BP.
Kath (adult/obpi)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: Double whammy
Kath, I just send this to your email....
Dear Kathy,
You wrote:
"How do you get osteoarthritist in the brachial plexus?
I thought that was strictly a bone disease from wear and tear on the joints.
I have it in both hands but not in my BP."
osteoarthritis: is any arthritis marked by degeneration of the cartilage and bone of joints. The brachial plexus is a particular section of the spine, a bone system, from which nerves stem.
In my case I have osteoarthritis in the brachial plexus area of my spine that is painfully affecting the use of my arms -- because cartilage loss and spur development that is causing pressure on my nerves that enter into my arms. In your case you may have osteoarthritis in your hand bone system, but your discomfort in your hands could be stemming from your brachial plexus bone system.
I just want to further clarify as you are a UBPN Board Member, the brachial plexus injury of our children is a spinal chord injury, the nerves stemming from that specialized bone system were in some way damaged.
Very kind regards,
Lizzie
Dear Kathy,
You wrote:
"How do you get osteoarthritist in the brachial plexus?
I thought that was strictly a bone disease from wear and tear on the joints.
I have it in both hands but not in my BP."
osteoarthritis: is any arthritis marked by degeneration of the cartilage and bone of joints. The brachial plexus is a particular section of the spine, a bone system, from which nerves stem.
In my case I have osteoarthritis in the brachial plexus area of my spine that is painfully affecting the use of my arms -- because cartilage loss and spur development that is causing pressure on my nerves that enter into my arms. In your case you may have osteoarthritis in your hand bone system, but your discomfort in your hands could be stemming from your brachial plexus bone system.
I just want to further clarify as you are a UBPN Board Member, the brachial plexus injury of our children is a spinal chord injury, the nerves stemming from that specialized bone system were in some way damaged.
Very kind regards,
Lizzie
Re: Double whammy
Marieke,
In what you have written I think that you have opened a Pandora's Box of questions regarding pain, particularly pain experienced by our infants. My precise question is that as an adult I am experiencing a degenerative pressure on my nerves from my bones, but when the infant is delivered weren't those fragile bones the source of countering force to cause the damage to those nerves? Once that force was exerted, how did those spinal bones settle? In my daughter's first year, I was so worried about her personality becuase she never smiled and was so very grim. Did I not understand that she was actually in alot of pain?
And this may be an epiphany of sorts, but my mind is very troubled by the relationship of that tender bone, the nerve and that infant injury. I have always wondered why adult OBP injured adults have pain. Maybe because that very, very tender spine was also damaged or oddly deformed or spinned oddly... We are talking about alot of force. An infant's head is malleable in constant sleeping positioning, why wouldn't that very tiny spinal chord point not be deformed with vastly more force?
In answer to you Marieke, while I would love to, I can't teach in a pre-K setting because I have too much pain stemming from my brachial plexus, but if I were a survivor of that BPI without pain I would grab that opportunity in an instant....
Kindest regards,
Lizzie
In what you have written I think that you have opened a Pandora's Box of questions regarding pain, particularly pain experienced by our infants. My precise question is that as an adult I am experiencing a degenerative pressure on my nerves from my bones, but when the infant is delivered weren't those fragile bones the source of countering force to cause the damage to those nerves? Once that force was exerted, how did those spinal bones settle? In my daughter's first year, I was so worried about her personality becuase she never smiled and was so very grim. Did I not understand that she was actually in alot of pain?
And this may be an epiphany of sorts, but my mind is very troubled by the relationship of that tender bone, the nerve and that infant injury. I have always wondered why adult OBP injured adults have pain. Maybe because that very, very tender spine was also damaged or oddly deformed or spinned oddly... We are talking about alot of force. An infant's head is malleable in constant sleeping positioning, why wouldn't that very tiny spinal chord point not be deformed with vastly more force?
In answer to you Marieke, while I would love to, I can't teach in a pre-K setting because I have too much pain stemming from my brachial plexus, but if I were a survivor of that BPI without pain I would grab that opportunity in an instant....
Kindest regards,
Lizzie
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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: Double whammy
I am sorry Lizzy, but I re-read what I wrote and frankly have no idea where you got the notion that I was "openeing a pandora's box regarding pain..."
I am not sure what you mean by the spine being "deformed".
I am a 30 yr old OBPI and have no pain, I have been competitive in figure skating, done ballet, swimming, played clarinet. Went to school to become a physiotherapist and a teacher. I am now in nursing school. Please do not assume that ALL adults are in pain. No I do not know what the future holds, but with all I have done to my body so far with no sequelae, I am not overly worried.
Marieke
I am not sure what you mean by the spine being "deformed".
I am a 30 yr old OBPI and have no pain, I have been competitive in figure skating, done ballet, swimming, played clarinet. Went to school to become a physiotherapist and a teacher. I am now in nursing school. Please do not assume that ALL adults are in pain. No I do not know what the future holds, but with all I have done to my body so far with no sequelae, I am not overly worried.
Marieke
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Double whammy
Lizzie
The brachial plexus is not a section of the spine. It is a network of nerves emerging from the spine in the area of the cervical vertebrae. So that section of the spine is called the cervical spine and the nerves emerging from the spine in that area and serving the shoulder arm and hand are the brachial plexus nerves. Pressure from bones in the cervical spine would cause pain in the brachial plexus, but there are no brachial plexus bones, as Kath says.
Maybe this wasn't intended, but your comment to Kath looks disrespectful-I am aware of the limitations of this medium and apologise unreservedly if you did not intend disrespect, but Kath is well aware that obpi can and often does cause damage to the spinal cord, as are all of us with bpi. Sometimes comments look snippy but actually are not.
I hope you find some answers to help you, osteoarthritis in the neck is awful, I have some degree of it as a secondary issue from my bpi. I agree that the damage done to children at birth can and does result in all kinds of problems that doctors are only just addressing, if at all. Many people here know more about brachial plexus injury than any doctor other than a brachial plexus specialist, and believe me we have all heard some rubbish from our doctors.
Jen NZ rtbpi
The brachial plexus is not a section of the spine. It is a network of nerves emerging from the spine in the area of the cervical vertebrae. So that section of the spine is called the cervical spine and the nerves emerging from the spine in that area and serving the shoulder arm and hand are the brachial plexus nerves. Pressure from bones in the cervical spine would cause pain in the brachial plexus, but there are no brachial plexus bones, as Kath says.
Maybe this wasn't intended, but your comment to Kath looks disrespectful-I am aware of the limitations of this medium and apologise unreservedly if you did not intend disrespect, but Kath is well aware that obpi can and often does cause damage to the spinal cord, as are all of us with bpi. Sometimes comments look snippy but actually are not.
I hope you find some answers to help you, osteoarthritis in the neck is awful, I have some degree of it as a secondary issue from my bpi. I agree that the damage done to children at birth can and does result in all kinds of problems that doctors are only just addressing, if at all. Many people here know more about brachial plexus injury than any doctor other than a brachial plexus specialist, and believe me we have all heard some rubbish from our doctors.
Jen NZ rtbpi
Re: Double whammy
Dear Kath,
You need to know that I had absolutely no intention of offending you or Marieke in my responses.
Actually I was feeling oddly and prehaps serendipitously illuminated as to the OBPI as I am honestly having terrible BPI problems myself. In my family, cervical spinal problems with impact in the brachial plexus with lose of arm function is a congenital/genetic problem. My youngest brother has suffered the most. This past Christmas, he at 41 years of age stood side-by-side with my birth brachial plexus injured six year old and they compared function. Their presentation was almost identical, yet his injury occurred in his strenuous life and my daughter's as a result of her traumatic birth. And my current problems with arthritis is almost completely comparable to my brother's very early symptoms, yet his onset was compelled by his occupation, while mine was more dormant until I aged.
I posted to the UBPN because I think that there may be real comparative value in the fact that cervical abnormality and consequent BPI is genetic to my family, and I am uniquely affected as having a child with a brachial plexus injury from birth...
And Marieke, I took poetic license in speaking of the Pandora's Box, my intent was that for some birth or genetically predisposed adults of brachial plexus injuries we can't always assume that some work would be accessible because pain -- a factor that I am clearly trying to understand -- may be a very real factor to some: and not all. I totally respect what you have achieved, just as I am not surprised by my own child's achievements.
Otherwise, I am 47 years old, and for the entire time that I have been writing I can use my right arm because I still have strength, but I cannot feel my right arm: it aches and tingles with a bizarre lose yet presence of sensation.
Respectfully,
Lizzie
You need to know that I had absolutely no intention of offending you or Marieke in my responses.
Actually I was feeling oddly and prehaps serendipitously illuminated as to the OBPI as I am honestly having terrible BPI problems myself. In my family, cervical spinal problems with impact in the brachial plexus with lose of arm function is a congenital/genetic problem. My youngest brother has suffered the most. This past Christmas, he at 41 years of age stood side-by-side with my birth brachial plexus injured six year old and they compared function. Their presentation was almost identical, yet his injury occurred in his strenuous life and my daughter's as a result of her traumatic birth. And my current problems with arthritis is almost completely comparable to my brother's very early symptoms, yet his onset was compelled by his occupation, while mine was more dormant until I aged.
I posted to the UBPN because I think that there may be real comparative value in the fact that cervical abnormality and consequent BPI is genetic to my family, and I am uniquely affected as having a child with a brachial plexus injury from birth...
And Marieke, I took poetic license in speaking of the Pandora's Box, my intent was that for some birth or genetically predisposed adults of brachial plexus injuries we can't always assume that some work would be accessible because pain -- a factor that I am clearly trying to understand -- may be a very real factor to some: and not all. I totally respect what you have achieved, just as I am not surprised by my own child's achievements.
Otherwise, I am 47 years old, and for the entire time that I have been writing I can use my right arm because I still have strength, but I cannot feel my right arm: it aches and tingles with a bizarre lose yet presence of sensation.
Respectfully,
Lizzie
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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: Double whammy
Thank you Lizzie (sorry I spelled that wrong before). I do appreciate that you took the time to explain what you meant. I did not mean to sound rude or whatnot, but I do not like it when people assume things either.
I do know that pain can be a factor, I deal with a very real other neurological disorder (Transverse Myelitis) that could stop one from working period! It's not related to the OBPI. I am able to deal with the resulting pain, tingling odd feelings. I understand what you are feeling when it comes to that (mine is in my legs).
Have you been given any meds for the "neurological" pain? A common one is Gabapentin (Neurontin) or the new one, Pregabalin (Lyrica). It can help a great deal.
Marieke
I do know that pain can be a factor, I deal with a very real other neurological disorder (Transverse Myelitis) that could stop one from working period! It's not related to the OBPI. I am able to deal with the resulting pain, tingling odd feelings. I understand what you are feeling when it comes to that (mine is in my legs).
Have you been given any meds for the "neurological" pain? A common one is Gabapentin (Neurontin) or the new one, Pregabalin (Lyrica). It can help a great deal.
Marieke