Newbee
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LisaJayne68
- Posts: 10
- Joined: Fri Sep 26, 2008 5:28 pm
Re: Newbee
It sounds like you and I have a in common.
I was born in 68 and as 9 lbs 12 oz. I too was too big and the doctors used the clamps to yank me out. (My mom never had a single stitch and I ended up "crippled for life." Sometimes I felt that was so unfair but now I realize it led me to meet some wonderful people and provided me with a compassion and understanding for other injured people that I feel is truly special.) I always thought it was a MUSCLE injury that caused Erb's. I know that my parents did stretching exercises - to no avail - when I was a toddler and that I had a muscle lengthening surgery when I was two. That's pretty much all the treatment I ever had until it started hurting me in high school. I don't think that the orthopedic surgeon I saw in 9th grade understood it. If he did he didn't explain it to me at all. he never said anything about the shortness of my left arm being from an overdeveloped bicep. I always thought I'd built it up that way by using it to carry stuff since I needed my right hand to open doors!
But I can't really blame them too much. I think they did the best that they could with the knowledge that was out there. I think my mother didn't really understand and in the era that we were born, no one really questioned doctors.
It wasn't until last year that I started educating myself about Erb's and found this site, I cried when I realized I wasn't alone and freaky like I'd felt growing up. I suggest Dr. Nath's website. (Google "Dr. Nath" and you'll find it.) They do a great job of explaining what some of the effects are and what is being done now so kids injured like this have better use of their arms when they are adults than you and I have.
As far as surgery to change anything, you're probably right. I met with Dr. Nath and he told me that there was nothing that could really be done for me. Surgicial straightening - if possible at all - would be very painful & expensive & likely not covered by insurance as they'd deem it "cosmetic." I'd have to locate a doctor that I could talk into doing it - most won't do it on adults due to the low rate of success - who likely had never done it before - it's a pretty rare procedure. (This is NOT a combination for success!) And to top it all off, for every degree of pronation I gained - being able to turn my hand palm down - I'd loose an equal amount of supination ability - to turn my hand palm up. Supination - which I can do with little strain - is more important as it allows us to dress and feed ourselves.
I know about confounding tailors! I had a leather jacket and wedding dress altered and both times got really strange looks when I told them only ONE sleeve was too long! But luckily my mother-in-law is a wonderful seamstress - and fantastic lady - who alters most of my everyday long sleeved things for me.
One trick I did learn on my own was that I a sleeve could be shortened to fit by moving the button on the cuff to the flip side of the cuff and then turning the cuff up once to button it.
I am glad you found this site. It helped me tremendously to know I wasn't the only one out there!
I was born in 68 and as 9 lbs 12 oz. I too was too big and the doctors used the clamps to yank me out. (My mom never had a single stitch and I ended up "crippled for life." Sometimes I felt that was so unfair but now I realize it led me to meet some wonderful people and provided me with a compassion and understanding for other injured people that I feel is truly special.) I always thought it was a MUSCLE injury that caused Erb's. I know that my parents did stretching exercises - to no avail - when I was a toddler and that I had a muscle lengthening surgery when I was two. That's pretty much all the treatment I ever had until it started hurting me in high school. I don't think that the orthopedic surgeon I saw in 9th grade understood it. If he did he didn't explain it to me at all. he never said anything about the shortness of my left arm being from an overdeveloped bicep. I always thought I'd built it up that way by using it to carry stuff since I needed my right hand to open doors!
But I can't really blame them too much. I think they did the best that they could with the knowledge that was out there. I think my mother didn't really understand and in the era that we were born, no one really questioned doctors.
It wasn't until last year that I started educating myself about Erb's and found this site, I cried when I realized I wasn't alone and freaky like I'd felt growing up. I suggest Dr. Nath's website. (Google "Dr. Nath" and you'll find it.) They do a great job of explaining what some of the effects are and what is being done now so kids injured like this have better use of their arms when they are adults than you and I have.
As far as surgery to change anything, you're probably right. I met with Dr. Nath and he told me that there was nothing that could really be done for me. Surgicial straightening - if possible at all - would be very painful & expensive & likely not covered by insurance as they'd deem it "cosmetic." I'd have to locate a doctor that I could talk into doing it - most won't do it on adults due to the low rate of success - who likely had never done it before - it's a pretty rare procedure. (This is NOT a combination for success!) And to top it all off, for every degree of pronation I gained - being able to turn my hand palm down - I'd loose an equal amount of supination ability - to turn my hand palm up. Supination - which I can do with little strain - is more important as it allows us to dress and feed ourselves.
I know about confounding tailors! I had a leather jacket and wedding dress altered and both times got really strange looks when I told them only ONE sleeve was too long! But luckily my mother-in-law is a wonderful seamstress - and fantastic lady - who alters most of my everyday long sleeved things for me.
One trick I did learn on my own was that I a sleeve could be shortened to fit by moving the button on the cuff to the flip side of the cuff and then turning the cuff up once to button it.
I am glad you found this site. It helped me tremendously to know I wasn't the only one out there!
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Charlie O
- Posts: 18
- Joined: Sun Aug 10, 2008 9:52 am
- Injury Description, Date, extent, surgical intervention etc: ROBPI resulting from a birth injury. Limited motion at the shoulder, elbow, and wrist. No pain or surgeries.
- Location: Philly
- Contact:
Re: Newbee
LisaJayne -
Thanks for sharing your story. Sounds very familiar. I am always surprised how little the medical community knew about this type of injury in the 60s.
I had a funny feeling about any possible surgery for my arm at this stage in life. Glad to know there's more hope for today's OBPI kids.
This online community has been very gracious and welcoming. Until now, I'd never met another OBPI. Great to know there's a place where everyone understands our struggles and triumphs without a lot of preamble.
Hope we can talk again soon.
-Charlie
Thanks for sharing your story. Sounds very familiar. I am always surprised how little the medical community knew about this type of injury in the 60s.
I had a funny feeling about any possible surgery for my arm at this stage in life. Glad to know there's more hope for today's OBPI kids.
This online community has been very gracious and welcoming. Until now, I'd never met another OBPI. Great to know there's a place where everyone understands our struggles and triumphs without a lot of preamble.
Hope we can talk again soon.
-Charlie
If daydreaming were criminalized, I’d be a lifer.
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LisaJayne68
- Posts: 10
- Joined: Fri Sep 26, 2008 5:28 pm
Re: Newbee
Any time I spend helping other people realize that they aren't the only ones with this injury is time very well spent!
When I first found this board, I cried a lot. Sometimes because I realized I wasn't the only one and other times because I realize how much worse it was for others. I'd never thought of myself as lucky.
You know, I was told once that at least my injury wasn't "severe" just because it isn't noticable to people! Yeah that's the most important thing - that people can't see we're "crippled!" (No one seems to notices the difference in my arms until I point it out.) Of course, when people say "well at least it's not bad," I have to tell them about all the secondary issues I have: scoliosis, overuse injuries to my R shoulder, recurring vertigo on my L side, lack of balance and tendancy to fall... They usually just say "oh" after that.
Even well meaning, non-OBPI people just don't get it sometimes. An ex of ,ine used to act like I COULD do things - such as spike a volleyball - if I'd just try harder!
Sorry, didn't mean to ramble so much, but you're right, to be able to have people understand without preamble is such a blessing.
When I first found this board, I cried a lot. Sometimes because I realized I wasn't the only one and other times because I realize how much worse it was for others. I'd never thought of myself as lucky.
You know, I was told once that at least my injury wasn't "severe" just because it isn't noticable to people! Yeah that's the most important thing - that people can't see we're "crippled!" (No one seems to notices the difference in my arms until I point it out.) Of course, when people say "well at least it's not bad," I have to tell them about all the secondary issues I have: scoliosis, overuse injuries to my R shoulder, recurring vertigo on my L side, lack of balance and tendancy to fall... They usually just say "oh" after that.
Even well meaning, non-OBPI people just don't get it sometimes. An ex of ,ine used to act like I COULD do things - such as spike a volleyball - if I'd just try harder!
Sorry, didn't mean to ramble so much, but you're right, to be able to have people understand without preamble is such a blessing.
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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: Newbee
I could not find the original post, so cut/pasted this one from Kath:
I know we have a few new Adults on the boards and want to welcome them to join the Private Boards as well.
Marieke
Time to move this up for those who are not aware we have this board.
The girls are all posting away and finally one brave man has signed in.
I know for sure there are many men reading and not posting. I am surprised I have not hear from some who do post here.
Just email me if you want to enter the private board.
Just send you log in name to KathM@ubpn.org
Kath robpi/adult
I know we have a few new Adults on the boards and want to welcome them to join the Private Boards as well.
Marieke
Time to move this up for those who are not aware we have this board.
The girls are all posting away and finally one brave man has signed in.
I know for sure there are many men reading and not posting. I am surprised I have not hear from some who do post here.
Just email me if you want to enter the private board.
Just send you log in name to KathM@ubpn.org
Kath robpi/adult
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Charlie O
- Posts: 18
- Joined: Sun Aug 10, 2008 9:52 am
- Injury Description, Date, extent, surgical intervention etc: ROBPI resulting from a birth injury. Limited motion at the shoulder, elbow, and wrist. No pain or surgeries.
- Location: Philly
- Contact:
Re: Newbee
LisaJayne -
You mention vertigo on yr OBPI side. I experience very similar symptoms when trying to crane my neck over my "bad" shoulder (like when backing out of the driveway). I can only hold the position a few moments. I'd never connected it with my OBPI. But now hearing others mention it, they must be related.
You mention vertigo on yr OBPI side. I experience very similar symptoms when trying to crane my neck over my "bad" shoulder (like when backing out of the driveway). I can only hold the position a few moments. I'd never connected it with my OBPI. But now hearing others mention it, they must be related.
If daydreaming were criminalized, I’d be a lifer.
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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: Newbee
Hi I'm Pat 55 Yr old ROBPI. I have the vertigo too. Noone has ever had an explanation for it.
Welcome. You'll find a lot of information and some great people on this board
Welcome. You'll find a lot of information and some great people on this board
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LisaJayne68
- Posts: 10
- Joined: Fri Sep 26, 2008 5:28 pm
Re: Newbee
The idea that the vertigo is a result of the OBPI has not been "proven" medically; just an idea that I have "kicked around" with my doctor. He is VERY aware of the Erb's palsey and has never made me feel like it was either "nothing." He treats it like a chronic condition that needs to be dealt with in relation to other issues. He has even researched it since I started going to him so he was as up to date as possible on treatments etc... (I have a GREAT doctor.)
The vertigo: my GP says my vertigo - and apparently there are varying kids - is caused by the tiny bones in my ears getting out of place. We wonder if my ear canal on that side was stretched during birth just like the BP was. If that is the case, the canal would possibly be shaped oddly and the tiny bones more likely to slip out of place. (Yes, we determined that the rocks in my head are loose!) Good thing is, the "treatment" is easy. When it flares up, I lay flat on my back on my bed, with my head SLIGHTLY hanging off the side. I then roll my head to the side, wait for the room to stop spinning, and roll my head back to center, then to the other side, and back to center again. Repeat until the room doesn't spin when I turn my head. I sometimes have to do it twice a day for 5 or 6 days to totally correct the problem. (NOTE: Do not close you eyes when the room spins. That makes it worse and make make you throw up.)
My dentist suspects the same thing happened with the jaw nerve on my OBPI side. He can never find it when he tries to numb me for dental work. I've just started having him drill without numbing it first. Yeah I'm THAT tough!
The vertigo: my GP says my vertigo - and apparently there are varying kids - is caused by the tiny bones in my ears getting out of place. We wonder if my ear canal on that side was stretched during birth just like the BP was. If that is the case, the canal would possibly be shaped oddly and the tiny bones more likely to slip out of place. (Yes, we determined that the rocks in my head are loose!) Good thing is, the "treatment" is easy. When it flares up, I lay flat on my back on my bed, with my head SLIGHTLY hanging off the side. I then roll my head to the side, wait for the room to stop spinning, and roll my head back to center, then to the other side, and back to center again. Repeat until the room doesn't spin when I turn my head. I sometimes have to do it twice a day for 5 or 6 days to totally correct the problem. (NOTE: Do not close you eyes when the room spins. That makes it worse and make make you throw up.)
My dentist suspects the same thing happened with the jaw nerve on my OBPI side. He can never find it when he tries to numb me for dental work. I've just started having him drill without numbing it first. Yeah I'm THAT tough!
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Antoinette422
- Posts: 3
- Joined: Sat Nov 15, 2008 8:22 pm
Re: Newbee
Wow! I've recently been experiencing vertigo more and more! Do u really think that it's from our birth injury? My Drs. haven't been able to offer much relief other than antivert which puts me out for hrs!!! lol...How do you deal with it? Any help would be appreciated! :}
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LJSL0330
- Posts: 52
- Joined: Wed Feb 27, 2008 9:09 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. Only surgical intervention was muscle lengthening at 2-3 y/o. PT at 35 which increased passive ROM by did not improve active ROM. Also have scoliosis due to left shoulder "hiking."
- Location: Evansville, Indiana
Re: Newbee
Antoinette -
I don't know that the vertigo I have IS caused by my
LOBPI, that's just a guess by me and my doctor. I used to think my balance problems came from my body not being symetrical, but the inner ear controls balance and if the trauma that damaged my BP also caused my ear canal to be even the tiniest bit misshapen, it could cause the balance and vertigo issued both. At the least, it doesn't HELP them!
Try the head turning exercise I explained in my last post. It helps me enough that when I first start to get that "off kilter" feeling, I do it and never even have to call my doctor! It may help you too. I know the meds your talking about - it only helped me with the nausea from vertigo and made me want to sleep for a week everytime I took it.
I don't know that the vertigo I have IS caused by my
LOBPI, that's just a guess by me and my doctor. I used to think my balance problems came from my body not being symetrical, but the inner ear controls balance and if the trauma that damaged my BP also caused my ear canal to be even the tiniest bit misshapen, it could cause the balance and vertigo issued both. At the least, it doesn't HELP them!
Try the head turning exercise I explained in my last post. It helps me enough that when I first start to get that "off kilter" feeling, I do it and never even have to call my doctor! It may help you too. I know the meds your talking about - it only helped me with the nausea from vertigo and made me want to sleep for a week everytime I took it.
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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: Newbee
BUMPING UP.
Carolyn J
LOBPI/75++++
Carolyn J
LOBPI/75++++
