Opportunity is knocking!

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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richinma2005
Posts: 861
Joined: Thu Sep 29, 2005 12:00 pm
Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.

Opportunity is knocking!

Post by richinma2005 »

HELLO ALL,

UBPN is again attending the Narakas symposium, which is a very prestigious meeting of world experts in treating brachial plexus injuries (not preventing :( ) However this year is different and UBPN has been invited to peak at the symposium. It is an incredible opportunity to present who we are to the people who treat this population. We have only 6 minutes, during which we will introduce the origin of the organization, how we interact and offer support to the community, but I would like to close with what the community needs from the doctors:

Some ideas are

pain management
continuity of care

Please respond with your suggestions, and I will do my best to make sure it gets presented. It can't be a long idea, but something more like a bullet point

The presentation is May 19th, the program runs May 18-21. So we are right in the middle.

Thanks

rich
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jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Opportunity is knocking!

Post by jmar »

some of the people on here have a BPI due to a very long surgical procedure. (several hours). mentioning BPI as a complication before a person has such a surgery would be a good thing.
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ArmStrong
Posts: 100
Joined: Thu Jan 20, 2011 4:09 am
Injury Description, Date, extent, surgical intervention etc: HI BPI FAMILY ON SEPT.19 2010 I CRASHED ON MY MOTORCYCLE AND SUFFERD A FRACTURED BACK AND NECK AND A CLOSED,TRAUMATIC BPI LEFT ARM PARALYZED,SOME FINGER AND WRIST MOVEMENT.
Location: LOS ANGELES,CA

Re: Opportunity is knocking!

Post by ArmStrong »

HELLO RICH, AS AN ADULT WITH A TBPI FROM A MOTORCYCLE ACCIDENT I WOULD LIKE TO KNOW ABOUT THE USE OF STEM CELLS AND AND MUSCLE REGENERATION AND OF COURSE HOW CLOSE ARE THEY TO FINDING A CURE?
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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: Opportunity is knocking!

Post by Kath »

It is important for the medical professionals to understand we have suffered lifelong ramifications as a result of this birth injury. Since these are bpi specialists they know about the pediatric care of children with obpi but adult/obpi are neglected by the medical profession. They would prefer to ignore our arms and more or less shrug their shoulders when we do try to engage them regarding our injury. It is very frustrating for us that no one seems to understand our pain and/or challenges.

Part of me feels it is impossible to include anything about adult obpi because their probably not interested since we can't be surgically repaired.
Good Luck and have a safe trip.
Kath robpi/adult

Kathleen Mallozzi
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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: Opportunity is knocking!

Post by Judy-T »

I agree with you Kath! Kath, when I was at the Narakas meeting in Puerto Rico One Doctor said that there was no pain with obpi. When they asked me if I had anything to say they did seem to listen to me when I spoke about pain.
Rich ,Please remind them that kids do grow up. Pain is a real issue. It would be great if a long term study was done.
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jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Opportunity is knocking!

Post by jmar »

i could not imagine this injury with no pain. whether as an infant or at 90+ years old. that is crazy. i really dont know a lot about OBPI, but the injury itself is still a damaged nerve and damaged nerves hurt like h****. i totally agree that the adults who grew up with this needs more help. we all need more that can be done.
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RaisingCropsandBabys
Posts: 27
Joined: Tue Apr 05, 2011 7:08 pm

Re: Opportunity is knocking!

Post by RaisingCropsandBabys »

I know I'm interested in what other areas of the body a brachial plexus injury can affect. Like a domino effect. My son has had other issues with weight bearing on his legs equally, etc. and I always wonder is it a domino of his obpi.
Are they more at risk for things like mild scoliosis because of compensation in their back? My son's therapists have "theories" on the why and to them it seems some of his other issues coorelated with his obpi, but are their solid, concrete answers?

I guess basically my questions would be: What other things are our children at risk for (as they grow) by having an obpi? What kinds of things should a pediatrician keep an eye on during check-ups that don't "directly" involve the brachial plexus, but could be a factor in a bp kid?
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nkjacoby
Posts: 81
Joined: Sat Jun 21, 2008 9:06 pm
Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!

Re: Opportunity is knocking!

Post by nkjacoby »

My son Nicholas has a LOBPI. Unfortunately, he is in a small percentage of children whose surgeries did not help his injury. His left arm still has no muscle tone and hangs flacid. I feel that it is unfortunate that once your child is no longer a candidate for surgical intervention that doctors do not typically follow up with them, unless there are issues. An OBPI is devastating in many aspects. When you are told your child is no longer a candidate for surgery, the care should not stop there. BPI's come with life long issues that our children must cope with. As our children cope, the parents also must cope along with them. It is difficult to be sent home with no other appointments and no other plans for care. It is vital that doctor's understand that there are cases such as my son's in which they need ongoing supportive care and examinations. It is not an easy task to go home after many surgeries and feel you have no options. It makes you feel so many emotions and that you are alone in helping your child to understand and grow with their OBPI. So, I just think it is important for doctors to realize that there are those rare cases of no regain of function with surgeries and that the care should not just end with that. It would be so comforting to have at least a yearly examination scheduled so that you feel that there is still some hope.
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5
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richinma2005
Posts: 861
Joined: Thu Sep 29, 2005 12:00 pm
Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.

Re: Opportunity is knocking!

Post by richinma2005 »

Attached is a draft of the powerpoint presentation to be given at Narakas meeting on May 19th. Thanks for your input!
Attachments
UBPN NARAKAS 2012 (Windows).ppt
Presentation to be given at Narakas
(3.67 MiB) Downloaded 600 times
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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:
Contact Carolyn J

Re: Opportunity is knocking!

Post by Carolyn J »

Have a safe trip and Thank You for sharing your powerpoint Presentation,Rich. I'll be thinking of you tomorrow.
Carolyn J
LOBPI/72++++++ 8-) :mrgreen:
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