growing and living with BPI from Infant

[michael's parents]

Hello, My son was born with OBPI and has had mod quad surgery and has recovered nicely but still may need further bone surgery in the future... I would like to hear from all who have OBPI and what your limitattions are as adults? My son is not a worse case scenario thank God... but he had injuries to c5, c6, c7 they were not torn... just want to know what some of you out there who have grown into adults have gone through and continue to go through.... I know this is a difficult question because everyone is different but.... just looking ahead....currently he cannot supinate his arm and has elbow contracture of 20 degree. or so....can reach over his head and grasp and hold objects.. any input is helpful such as pain or numbness etc.... reoccurance of contractures etc... Thank you in advance for any input!

[Kath]

Hi Michael's parents

I think that I will leave it to the younger group on this board to answer some questions.
However, if you are looking for a long list of pain/life experiences etc, we have two very long informative posts on this message board. It might help to read them. I will bump them up to the top for you.
Kath

[admin]

Dear Michael's parents,

The amazing thing about the time we are living in is that medical technology is moving pretty fast. Our babies have interventions available that past generations didn't. There are surgeries now that cause such change that it's unbelievable. You can see by reading the adult message board that many adults are having surgeries now and they are gaining functions that they never had before. It's because of this that I have GREAT hope for my little guy.

I remember when my child was only four months old and I watched two kids playing ball and I sat there and cried my eyes out wondering if my child would ever be able to catch a ball. Well what a difference 7 years makes. Wow. I would never have believed then that my child would be doing all these things now.

Who knows what new things the future will bring - I just know it will be great for our kids.

[hope16_05]

Hello Micheal's parents,
In my case I can't reach above my head or behind. But I can do most other things with some time. I can almost always find a way to do what ever I want. You might want to get your little guy a brace to correct his elbow contracture early so he does not have trouble with it later on like I did. My elbow contracture started early and got progressively worse over time. For the last 6 months I have had to wear an uncomfortable brace to bed that gradually stretches my elbow back to a "normal" position. On a good note I am able to plat softball very well, some other games are complicated by this injury like volleyball, but really there is a way to do every thing it just takes a while to find the way that works for you.
Best of luck to your little guy,
Amy (18 years old ROBPI)

[rachelcasa]

Hi there and welcome to the boards. I am 33 with a left obpi injury. I had the mod quad done about 2 years ago. The thing I notice the most is the horrible burning sensation between my shoulder blades and my neck when I over use my arm. I am going back to school and when I sit in front of the computer or in class for long periods of time I get kind of wiggley because of the pain my neck...literally!! I work out 4 times a week and when I take the strength training classes and cannot do some of the arm weights like everyone else can that also gets very frustrating. Like you said, everyone is different. Here's another kind of funny note. I just went to a concert, and everyone has their hands up in the air...*L* I couldn't lift both of mine up..so I am the one with only one arm up in the air. But hey, it works!! Good luck to him and let me know if I can help out any other ways.

[espiper]

I am a 38 yr old obpi - left arm and just had the Mod Quad surgery with Nath on January 7th. I found out then that my injury was only at the c5 so couldn't raise my arm overhead and as an adult could only raise it in front 45* and to the side 30* so quite limited. But since I had no hand involvement or elbow contractures no one noticed there was anything wrong because in "talking range" I looked totally normal. Hard to believe but true.
Surprisingly I could swim and competed in English style riding for many years. I would have given anything to have had this surgery at a younger aged but just found out about it last October so had it asap. What it limited me in were career choices - for instance I couldn't be a surgeon, fire fighter, ballerina etc due to not being able to raise the arm. These may seem like dreams to some but for me I couldn't even entertain the dream because of the injury.
I am a toxicologist, certified chef, and registered Dietitian and work in a think tank for a food company so am very happy but there were other paths I would have enjoyed exploring. Unbelievably, I even modeled into my 20's but couldn't go pro because there was a slight difference in size between my right and left arms.
I have had no pain at all due to the injury so am very lucky that way and am right handed - lucky too. I have no problems with my right arm such as arthritis ect. since I just avoided doing the overhead stuff when I could. I have the same speed in both hands so don't have to compensate there either. It does suck to have to get take out using my right hand though!!
Since the Mod Quad though I am now up to 100* flexion and 80* abductions from my original 45* and 30* and am passivley in the 160's so am expected to be able to be overhead within 12-15 months - hoorah!! Feel free to contact me if you have any questions. Suzy

[admin]

My daughter age 6 is suffering from Brachial Plexus C5,6.Till date she is undergoing physio-therapy. Some docs suggest that her tandons needs to be replaced.Presently she has a permanent bend in her arm, and can raise it 90 deg in front of her. Is it advisable to get her operated now?

[jep98056]

I am 65 years old and have a ROBPI. I can't raise my arm above my head and have about 75% hand strength. Although my injury results in certain limitations (like working over head with both hands), I have always considered my injury as an inconvenience rather than a problem. I believe the dedication and support of my parents were key the extent of recovery I have made. I obtained the maximum possible recovery by my early teens. Over the years, I've been active in sports (slow pitch baseball, soccer, skiing, hiking, fly fishing), married and raised 2 boys, was involved in various community activities, became a grandparent, and had a rewarding 34 year career in the aerospace industry.

Judging from your question, you have already started on a path to achieve the maximum possible recovery for Michael. I encourage you to continue that effort and to sacrifice your time, effort, and money to make it happen (that may mean unintended sacrifices for your other children). Treat Michael as you treat your other children; with love and respect without undue attention to his injury. As he grows, be supportive when he wants to participate in activities with his friends including activities that may be physically challenging. Think about the future years and ensure that Michael receives the education and training to lead a successful and productive life. Keep in mind that the emotional roller coaster you are on will continue and will include Michael as he becomes more aware of his injury. However, you and Michael will learn to cope with his injury. How well Michael copes will likely be influenced by how well you do.

John P.

[tnmoore]

I am a 32 yr old LOBPI and my situation sounds alot like your sons. I did not have any interventions at all, and I too was able to raise my hand up to my head and I think that was why my parents did not pursue much at that time. The only pursuit we did was that of the elbow contracture, but the physicians back than were not confident that they could help-so we did nothing. As a result my contracture has ended up at a 90 degree contracture, and I too am unable to supinate. I am one of the lucky ones as I never had any pain with this injury and I still do not have any pain. However I have found a great elbow surgeon at Mayo Hospital that will be performing an elbow surgery on me April 11, and hopefully that will give me the straightness back. My suggestion to you would be to make sure his contracture does not keep getting worse-the contracture will finally stop once he is done growing. My only wish if I had to do it all over would be to have my arm splinted at night to make sure the contracture never happened or kept to a minimum. The only down side would have beeen that I would have had to do it for the entire 18 yrs of my life-and as a child that is a long time. The decision is ultimately yours for your child-just keep researching and asking questions. Nicole

[CW1992]

I can offer what life has been like with my 13 year old. Where do I start? She also has an injury of C5 - 7. She has not had any surgeries though. There have been so many ups and downs over the years - coming home from appts sad but then later I'd be jumping up and down because she did something that I never thought she'd be able to do. She was in dance, t-ball, gymnastics, art classes,...... there were lots and you probably don't need to hear - but then we found soccer and swimming and that has worked great for her. She still has trouble with raising both arms up to get things that are high - like in the kitchen cabinets - but her suppination has improved so much! She has learned as she has grown to keep her elbow in so that she could turn her wrist over. I've found that as she has gotten older she has also gotten stronger in all areas. She can do things now at 13 that she could not ever do before.

I also wanted to thank John for posting. I always love hearing John's input. I also surely agree that how well Michael will cope will be influenced by how well you do. Things can get hard - but then they get good again when you figure out how to do things - and your son will be just fine as long as you help him see that he's going to be just fine.
Christy