United Brachial Plexus Network, Inc.

Christopher and Karl,
Hi. I also live in Southern Cal. I'm an actress here in La La Land. My daughter is 11 and has a total bpi from birth. Anyway, I just wanted to let you all know that there is a picnic in San Diego during August, every year for BPI. We do have some adults with BPI at the picnic as well. It holds a wealth of information. Contact San Diego Brachial Plexus Network, and they can get you in touch with other adults, that could lead you to answers to your questions. My daughter goes to Dr.Shenaq and Dr. Nath in Texas. It's well worth the flight. She saw Dr. Hoffer in L.A. But, I would recommend the Texas crew. Let us know how the UCLA doctor visit goes. Oh, I have a friend that competes in body building contests, and he says people have cosmetic surgery on calves and such. So, why not the arms as well.
Lisa

Kath,
Sounds like you've been put through the ringer with implants and corrective procedures. I don't know how well I would have handled that all. It surely points out the reality, that this is something that is in its 'infancy' stage and things about it have to be worked out. Thanks for your comments and pioneering efforts. Please keep us all updated on what happens with your latest attempt, and I'll keep my fingers crossed that it is your last and successful. Next time I go to the Mayo Clinic for a follow up on my surgeries, I'll try and see Dr. Johnson as well. Thanks again for coming forward with your post, any information like this is critical if anything is going to be done by others in the future.

Cheers,
Christopher

Lisa,
Thanks for the info, and I hope you're kicking but with the acting.

Christopher

Lisa,
Thanks for the info on the San Diego Brachial Plexus Network. I'll check it out asap. My head is still spinning from my meeting with Dr. Edelman. He looked at my records and my arm and said "you need surgery, and I can't do it". He is setting me up with Dr. David Kline at LSU. I woke up at 1am this morning. Couldn't sleep. I feel like there is a light at the end of this tunnel now. Enough about me. My therapist treats a girl about 8 yrs old with a obpi. She went to Texas for muscle release sergury. She's doing much better. She can lift her arm over her head. Let us know how your daughter is doing. And let me know how all this impacts you as well. It will give me some insight on how my injury effects my family. Thanks again,Karl.

Hi Karl,
Dr. Kline in New Orleans...we've been to him, he was our daughter's neurosurgeon until we moved out here to California. He is very conservative with surgery for babies. I'm not sure about adults.
Where are you living? My daughter was born in Lafayette, Louisiana.
Well, as for how it affects the family, I'm sure it has to be different since you are the adult.
What will make it easier is for everyone to realize that you are still you! Accept that. I know it's hard. Trust me, I've cried outside watching my daughter in dance class through the window, knowing that she can't do the arm movements precisely--and hoping that it doesn't crush her spirit to see the other girls doing that. I can go on and on, but I won't. I'm sick of crying, to the point that I will force myself to not cry--change the subject,etc. I know, tears are for healing, I've coined that phrase. But, back to you, you will always be "the best dad, the greatest husband", no matter what happens to you. No matter how much help you will need. No matter how much your family will sacrifice. No matter how much of a burden you think you are, YOU are NOT! It is a blessing to be my daughter's mother. It is a priveledge to be her caregiver. If I could move a mountain for her, I would...Lord knows I've tried!
There has never been one second of my life where I have thought of her as a burden--not one! She has an injury, but she is not THE injury. It's a part of her, she isn't a part of an injury. And, I will never give up on a cure/healing. It isn't a pipe dream, it's a reality. Have Hope! Your family will love you, no matter what! But, let there be a sparkle in your eye, the "knowing" that you will get better! I just know there's gonna be a cure and soon!
Hope I didn't go overboard. Sending healing thoughts your way!!!!!

If you check out Dr. Kline, he has done over 2400 trauma brachial plexus surgeries. He wrote the book that others learn by, literally.

Hello
My plastic surgeon says can make my shoulder atrophy look better by injecting under the skin a product “ Bio-Alcamid Body “ (http://www.bioalcamid.com/ ).
Have any feedback about that?

Thanks for your comments. I keep updated.

Paulo G (Portugal)

Gianni,
I appreciate (never use a big word when a small one will suffice)the information on Dr. Kline. I tried to use the url for his web site on the resource board, but I couldn't get the page to load. Any clue how I can get more info on him? Thanks again, Karl.

http://www.medschool.lsumc.edu/Nsurgery/Faculty.html

Paulo,
Thanks,that was exactly what I was looking for. If your going to let someone cut you open, its nice to know some info about him. Thanks again, Karl