Umm im 15 m and im going to therapy for it but my arm also shorter then my other and is there any sergery for it where it can be just like my other arm?>??
ANYONE have anything u know that can help???
I Have Erb's Puslby
-
F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: I Have Erb's Puslby
I know some people who have done an osteotomy with an Ilizarov brace to do the bone lengthening. I'm sure that many doctors around the country do this. The people I know who had it done went to Dr. Guggenheim in Houston, Texas and a young man who went to a doctor in Arizona (can't remember the name right now but will get in touch with the young man). But I'm sure more surgeons do this surgery around the country. I hope some people whose children have had this surgery come forward to talk to you about it.
Good luck!
-francine
Good luck!
-francine
-
CaliTeen831
- Posts: 6
- Joined: Mon Feb 04, 2008 11:33 pm
Re: I Have Erb's Puslby
ok ty very much i will look into that because i hate walki g around outside being defernt u know. but ty very much.
-
CaliTeen831
- Posts: 6
- Joined: Mon Feb 04, 2008 11:33 pm
Re: I Have Erb's Puslby
one more question how much would it coct and is it possable to get it free or something.
Re: I Have Erb's Puslby
Hi Cali teen
Welcome! There are a lot of places that do this type of surgery in Baltimore there is a hospital that does it also. I don't know how much function you have in your hand and arm My so Frankie was recommenced for this surgery buy one doctor but in reality with his arm not having all muscles working he would have lost the ability to bend his arm at the elbow because the arm would be longer making it heavier and a farther distance from say his mouth so we decided against it. You can go on line and research this type of surgery to see what is exactly done. Mare
Welcome! There are a lot of places that do this type of surgery in Baltimore there is a hospital that does it also. I don't know how much function you have in your hand and arm My so Frankie was recommenced for this surgery buy one doctor but in reality with his arm not having all muscles working he would have lost the ability to bend his arm at the elbow because the arm would be longer making it heavier and a farther distance from say his mouth so we decided against it. You can go on line and research this type of surgery to see what is exactly done. Mare
-
hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: I Have Erb's Puslby
Hello CaliTeen,
To get treatment for free, you should look into Shriners hospitals. There is a very good BPI (brachial plexus injury) specialist in Phiily, PA. I know that there are some other shriners that have bpi specialist too. But I am not sure which ones they are.
All services provided through shriners are free to any one needing then who is under 21.
What surgeries are available totally depends on your function and whether or not the surgery gains would be worth the risk of losing function. There is probably not anything available just yet to 100% fix your bpi arm. But that doesnt mean there never will be, they are always researching!
Advice now from some one who has been there, dont walk around hiding your injury! You didnt do any thing to deserve this. So why should you have to be ashamed of it? Be proud of everthing that you go through to do daily tasks that others dont even have to think twice about. It takes a lot to gain back all the confidence this injury can strip from us but if you start early, it will be much easier. I am starting later, almost 21 years old and realizing that if people dont want to like me because of my injury then they are too shallow for me anyway. Its a great realization! Allows for a lot more freedom!
Good luck!
And if you have more questions feel free to ask!
Hugs,
Amy 20 years old ROBPI from MN
To get treatment for free, you should look into Shriners hospitals. There is a very good BPI (brachial plexus injury) specialist in Phiily, PA. I know that there are some other shriners that have bpi specialist too. But I am not sure which ones they are.
All services provided through shriners are free to any one needing then who is under 21.
What surgeries are available totally depends on your function and whether or not the surgery gains would be worth the risk of losing function. There is probably not anything available just yet to 100% fix your bpi arm. But that doesnt mean there never will be, they are always researching!
Advice now from some one who has been there, dont walk around hiding your injury! You didnt do any thing to deserve this. So why should you have to be ashamed of it? Be proud of everthing that you go through to do daily tasks that others dont even have to think twice about. It takes a lot to gain back all the confidence this injury can strip from us but if you start early, it will be much easier. I am starting later, almost 21 years old and realizing that if people dont want to like me because of my injury then they are too shallow for me anyway. Its a great realization! Allows for a lot more freedom!
Good luck!
And if you have more questions feel free to ask!
Hugs,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
-
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: I Have Erb's Puslby
WELCOME, Cali! 
I hope you come here often and ask any question.
You are welcome on any of the Message Boards too; the one for "Adults with OBSTETRICAL(Birth)Brachial Plexus Injuries" has alot of sharing and information there too and it is for teens too.
By the way, the Shriner's in Philadelphia helps with transportation there and also has a Ronald McDonald's House for parents/families to stay while there. All you need to do is call the BPI Clinic Co-ordinator and she helps with all of the arrangements.
We all usually advise having a consultation with the BPI Specialist as a 1st step because everyone's indivdual injuries are different.
Good Luck and keep asking questions.
Carolyn J
Adult LOBPI/age 69
I hope you come here often and ask any question.
You are welcome on any of the Message Boards too; the one for "Adults with OBSTETRICAL(Birth)Brachial Plexus Injuries" has alot of sharing and information there too and it is for teens too.
By the way, the Shriner's in Philadelphia helps with transportation there and also has a Ronald McDonald's House for parents/families to stay while there. All you need to do is call the BPI Clinic Co-ordinator and she helps with all of the arrangements.
We all usually advise having a consultation with the BPI Specialist as a 1st step because everyone's indivdual injuries are different.
Good Luck and keep asking questions.
Carolyn J
Adult LOBPI/age 69
Carolyn J
Adult LOBPI
Adult LOBPI
Re: I Have Erb's Puslby
Cali Teen
My son Frank is 15 and his left arm is alot shorter then his right maybe you could email him with any questions or if you just want to chat his email is Tinny61@aol.com he has had many operations his last being Nov 2006 maybe he could tell you what to expect. Mare
My son Frank is 15 and his left arm is alot shorter then his right maybe you could email him with any questions or if you just want to chat his email is Tinny61@aol.com he has had many operations his last being Nov 2006 maybe he could tell you what to expect. Mare
-
Debbie_Athens
- Posts: 2
- Joined: Tue Feb 05, 2008 4:10 pm
Re: I Have Erb's Puslby
You should check out some of the clinics that are available my daughter is 13 and will be doing this procedure with Dr. Price in NY. In may