I was just told that I have osteoporosis in my right hip--not the left. My OBPI is on the right side. My wrist bone and a shoulder bone are underdeveloped on the Erbs side. Do you think this has anything to do with the Erbs?
Thanks
Pat
Osteoporosis
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patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Osteoporosis
Pat,
Of Course we can't prove it, but YES artheritis/Osteo., varities of it is all part of ourErb's Palsy/OBPI's Medical Issues/secondary injuries and is common among us Adults with OBPI. I've got it in my LBPI hip too. Ohhh, when is someone going to document & Catalog our Adult OBPI's medical issues?? I think there are enough of us now who are willing Candidates!
HUGS,
Carolyn J
LOBPI/69
Of Course we can't prove it, but YES artheritis/Osteo., varities of it is all part of ourErb's Palsy/OBPI's Medical Issues/secondary injuries and is common among us Adults with OBPI. I've got it in my LBPI hip too. Ohhh, when is someone going to document & Catalog our Adult OBPI's medical issues?? I think there are enough of us now who are willing Candidates!
HUGS,
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
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patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
Re: Osteoporosis
I am wondering how we could get a trial started for OBPI. I keep getting told that my conditions has nothing to do with the Erbs and I sure would like some proof that it does.
Overuse,arthritis,migraines,osteoporosis, spine conditions. the list is endless.
I guess applyin dor grant money and presenting to some hospitals may be a start
Overuse,arthritis,migraines,osteoporosis, spine conditions. the list is endless.
I guess applyin dor grant money and presenting to some hospitals may be a start
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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: Osteoporosis
Pat
I don't think we will ever get a study on adult/obpi.
My PT showed me a skeleton one day and they used it like a puppet. He showed me why I have spinal stenosis in my lumbar region. L1 to L5 and S1. I reach across my body to do everything and twist my spine ... now multiply that by 67 years and you get extraordinary wear and tear.
It's just common sense.
He also showed me the cervical spine and how I reach for things and function on a daily basis. Now wonder I have stenosis there too!
I have a very high bone density in fact I once got a letter telling me I was high risk for cancer because of it. My GYN said that was a real stretch.
I have the bone density of a young adult. I have a smaller writs, shoulder, leg etc... The entire right side of my body is small. We were amazed when my daughter wore my wedding gown for a fashion show. She said she felt like something was twisting her on the right side forward and the one side was tight. We measured it and sure enough the gown is much smaller on the right side. I had it made by a dressmaker. I wanted a dress that fit that day!
How do they treat Osteoporosis on one side?
Kath
I don't think we will ever get a study on adult/obpi.
My PT showed me a skeleton one day and they used it like a puppet. He showed me why I have spinal stenosis in my lumbar region. L1 to L5 and S1. I reach across my body to do everything and twist my spine ... now multiply that by 67 years and you get extraordinary wear and tear.
It's just common sense.
He also showed me the cervical spine and how I reach for things and function on a daily basis. Now wonder I have stenosis there too!
I have a very high bone density in fact I once got a letter telling me I was high risk for cancer because of it. My GYN said that was a real stretch.
I have the bone density of a young adult. I have a smaller writs, shoulder, leg etc... The entire right side of my body is small. We were amazed when my daughter wore my wedding gown for a fashion show. She said she felt like something was twisting her on the right side forward and the one side was tight. We measured it and sure enough the gown is much smaller on the right side. I had it made by a dressmaker. I wanted a dress that fit that day!
How do they treat Osteoporosis on one side?
Kath
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
Re: Osteoporosis
Guess I'll find out. I was told that my spine surgery affected the bone density readings. I am wondering if the fact that my right side is full of underdeveloped bones etc. would affect the reading as well.
It is so difficult to understand the full implications of adult BPI. It's hard to believe we can't get funding for some studies. Especially when millions are spent on the anatomy and brains of earthworms.
Don't you agree??
It is so difficult to understand the full implications of adult BPI. It's hard to believe we can't get funding for some studies. Especially when millions are spent on the anatomy and brains of earthworms.
Don't you agree??
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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: Osteoporosis
I am still amazed that a study was not begun at least 40 years ago. But until we began to make noise no one really thought we were here.
It is really a shame that we have to pay for someone else's mistake and then they don't even study ways to make sure we have long range care for this injury.
The lack of medical knowledge on bpi secondary injuries and compensatory injuries blows my mind. Or perhaps it's because they seem to ignore our existence.
They can't with the kids now but they don't get nor seem to care about our problems coping with obpi as adults.
It bothers me more that they know people with other illnesses and injuries have secondary injuries and don't apply this knowledge to us?
Kath robpi/adult
It is really a shame that we have to pay for someone else's mistake and then they don't even study ways to make sure we have long range care for this injury.
The lack of medical knowledge on bpi secondary injuries and compensatory injuries blows my mind. Or perhaps it's because they seem to ignore our existence.
They can't with the kids now but they don't get nor seem to care about our problems coping with obpi as adults.
It bothers me more that they know people with other illnesses and injuries have secondary injuries and don't apply this knowledge to us?
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
Re: Osteoporosis
It isn't visible, people don't understand it unless they have it. I wish we could make a national challenge day . People could not supinate, raise the arm above their head, put it behind their back. On the other hand they couldn't bend their fingers. Let the challenge go for 4 active hours and see how frustrated they become.
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Judy-T
- Posts: 557
- Joined: Fri Nov 02, 2001 11:59 am
- Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
- Location: Florida
Re: Osteoporosis
Pat,
I was diagnosed with osteoporosis last year. I am 46. I was thinking the same thing that you are.....Judy
I was diagnosed with osteoporosis last year. I am 46. I was thinking the same thing that you are.....Judy
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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: Osteoporosis
I wonder why doctors have not noticed this before?
I had to insist that they scan both sides and was told that it was impossible to have it on one side.
No one in my family has had osteoporosis so I guess I just got lucky even on the bpi side.
Kath robpi/adult
I had to insist that they scan both sides and was told that it was impossible to have it on one side.
No one in my family has had osteoporosis so I guess I just got lucky even on the bpi side.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
-
patpxc
- Posts: 315
- Joined: Sat Nov 03, 2001 1:06 am
- Injury Description, Date, extent, surgical intervention etc: C-5 and C-6. Unable to supinate. Contracture elbow. Wrist bone underdeveloped.
Can raise forearm to mouth level. shoulder is limited in movement. Unable to put arm behind back. Secondary- early arthritis, carpal tunnel, pronator syndrome,scoliosis - Location: Ohio
Re: Osteoporosis
My mom has it--but she had perfect bones until the Dr. took her off hormones 4 years ago. Within 6 months she had severe osteoporosis.
I have heard that the Boniva and others like it have terrible side effects.
At any rate, I am going to go back on disability if they give it to me a second time. Too many health problems too fast--although most are related to the overuse syndrome. --Of course I probably coud get a job modeling the perfect hand......
My finger joints are fusing together. Between that, and the erbs arm losing all of it's strength in the forearm.,I'm going to make a supreme effort to enjoy every day , quit working 14 hours a day, preserve my arms and see if there is a world out there.
I suddenly realized I don't enjoy my life very much. Since I'm only 54, there's still time to change my priorities .
Does that sound selfish?
I have heard that the Boniva and others like it have terrible side effects.
At any rate, I am going to go back on disability if they give it to me a second time. Too many health problems too fast--although most are related to the overuse syndrome. --Of course I probably coud get a job modeling the perfect hand......
My finger joints are fusing together. Between that, and the erbs arm losing all of it's strength in the forearm.,I'm going to make a supreme effort to enjoy every day , quit working 14 hours a day, preserve my arms and see if there is a world out there.
I suddenly realized I don't enjoy my life very much. Since I'm only 54, there's still time to change my priorities .
Does that sound selfish?