I have a young girl with a LOBPI. I just met with a second "specialist" who told me that because they don't see many adults in their practice, they have to assume that the long-term implications that we would expect, such as arthritis, aren't really there.
Okay, I suppose one could think that. One could also think way more kids are injured now than before, and one could also think that adults get fed up with the medical system and go elsewhere or self-treat. There are so many other conclusions that it seems almost irresponsible to be told that we don't have to worry about the long-term impacts of this injury for our child...
I've met many adults through my years at picnics, or read posts on this site from adults that I just can't believe I don't need to be concerned. Then, the implications to insurance by having doctors say that there are no long-term effects is appalling!
I was wondering if there was some sort of study, survey, or article that was done so I can point to it when I see these specialists and show them the real issues that this community faces.
Study or article on adults?
Re: Study or article on adults?
I am an adult with ROBPI(I'm 27). The last few years I have been in graduate school. Being a student at my university(university of pittsburgh) I have access to thousands of journals and other medical materials.
I have done MANY searches and cannot seem to find any reasearch about the long term effects of this injury on adults save for one article which I cannot access(not sure why,its like the journal disappeared). There are, however, tons of stuff on kids and the procedures they do these days.
As for arthritis, BPI specialists have been telling my parents since I was born that arthritis is a definite possibility. I have also heard this from doctors in my adult years.
I know from my own personal experience that there are long term consequences of this injury, unfortunately no one studies it. I wish I could provide you with research. If you come across something please share.
Becky
I have done MANY searches and cannot seem to find any reasearch about the long term effects of this injury on adults save for one article which I cannot access(not sure why,its like the journal disappeared). There are, however, tons of stuff on kids and the procedures they do these days.
As for arthritis, BPI specialists have been telling my parents since I was born that arthritis is a definite possibility. I have also heard this from doctors in my adult years.
I know from my own personal experience that there are long term consequences of this injury, unfortunately no one studies it. I wish I could provide you with research. If you come across something please share.
Becky
Re: Study or article on adults?
I am an OBPI adult and have wondered about the same issue. I've asked my doctor about arthritis and was told to expect it in the unaffected shoulder from overuse. However, he was making a judgement and was not citing a specific study.
John P.
(ROBPI for 67 years)
John P.
(ROBPI for 67 years)
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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: Study or article on adults?
Hi ALL,
I am an Adult with LOBPI,Age 68 & I have Artheritis.
I suggest print out our Adults With Posts on our Artheritis complaints and take or send to you Doctors!! There are quite a few of us that have artheritis!(sorry about Sp...!!).
HUGS,
Carolyn J
I am an Adult with LOBPI,Age 68 & I have Artheritis.
I suggest print out our Adults With Posts on our Artheritis complaints and take or send to you Doctors!! There are quite a few of us that have artheritis!(sorry about Sp...!!).
HUGS,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Study or article on adults?
I am an adult with a left obstetrical brachial plexus injury. I have arthritis and bursitis in my right shoulder, as well as some arthritis in my right hand, spine and right ankle.
Arthritis can happen to anyone, but I believe that the arthritis and bursitis in my right shoulder, and possibly the arthritis in my right hand, were caused by overworking my right arm and hand.
Joanie, LOBPI, 58 years
Arthritis can happen to anyone, but I believe that the arthritis and bursitis in my right shoulder, and possibly the arthritis in my right hand, were caused by overworking my right arm and hand.
Joanie, LOBPI, 58 years
Re: Study or article on adults?
I'm 26, LOBPI, and I have bursitis in the my right shoulder, presumably from overuse. I would like to hear from adults whether or not their injured arm seems to get worse over time. Is it degenerative? Mine seems to be worsening, but that may just be an effect of overuse on that arm as well.
Re: Study or article on adults?
My left arm seems to be the same as it has been for many years, but I do remember being able to do more with it as a child. I could clasp hands behind my back, and pronate more than I can now. It was just so much easier for me to do things with my right arm and hand, that I guess I stopped trying to do things with my left arm and hand.
Joanie
Joanie