Hello, my name is Shaina and my daughter, 5, just recently underwent a Trapezius Transfer by Dr Kozin in Feb of 2009 at Shriner's in Philadelphia.
When my duaghter was born, she got stuck and suffered a brachial plexus injury. She only had movement in here hand until she was 4 months old. Over time, her range of motion got up to about 90% but then in January of this year, after a large growth spurt, her range was down to about 65-70%.
Dr Kozin had "suggested" surgery in the fall of '08 but by Jan '09 it had become a necessity.
While we were down at Shriner's someone suggested this message board, so I figured I would check it out.
I look forward to chatting with you!
New here!
-
tkirkland
- Posts: 55
- Joined: Tue Mar 31, 2009 9:46 am
- Injury Description, Date, extent, surgical intervention etc: My daughter suffered a ROBPI at birth on 10/7/2000. She has had no surgeries as of yet but we are currently seeking surgical intervention. She is a continous source of strength and encouragement for as she absolutely amazing!!!
- Location: Rockland County, New York
Re: New here!
Hi Shaina! I was so excited to see that you joined. I am the person that you met at Shriners that recommended this board. I am Amaya's mom. I still haven't decided what I am going to do as far as surgery for Amaya. I am still trying to figure everything out but I absolutely loved Dr. Kozin and I truly appreciated you speaking with me. Thanks,
Tiffany (mom of Amaya, ROBPI)
Tiffany (mom of Amaya, ROBPI)
-
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: New here!
Hi Shaina
Welcome to the Message Boards.
You'll find a great deal of information and support here from other parents as well as injured person.
Kath robpi/adult
Welcome to the Message Boards.
You'll find a great deal of information and support here from other parents as well as injured person.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: New here!
Hi Shaina,
Welcome to the boards! Our daughter, Aria, will have the trapezius transfer with Dr. Kozin this fall. As I understand it, this is a relatively new procedure. I'd be grateful for any information you'd be willing to share.
How has your daughter done since the transfer?
Welcome to the boards! Our daughter, Aria, will have the trapezius transfer with Dr. Kozin this fall. As I understand it, this is a relatively new procedure. I'd be grateful for any information you'd be willing to share.
How has your daughter done since the transfer?
Re: New here!
Hi Tiffany!
Thanks for the welcome Kath.
Mica ~ If I remember correctly Jenna was the first (or one of the first) Trapezius Transfers done by Kozin at Shriner's. It has been shown to be successful in adults, but it is still in the experimental in children.
The difference in our daughter has been amazing! They have monitored her rather closely, but Kozin released her from therapy for a month (we were there in April and don't go back until the end of May), and we do not see him again until October!
Her range of motion has increased. I know with some of the other procedures, there is a chance of losing certain movements ~ I don't see that she has lost anything!
My husband was a little skeptical at first, but he is thrilled with the results too.
Please let me know if you have specific questions and I will do my best to answer them.
Thanks for the welcome Kath.
Mica ~ If I remember correctly Jenna was the first (or one of the first) Trapezius Transfers done by Kozin at Shriner's. It has been shown to be successful in adults, but it is still in the experimental in children.
The difference in our daughter has been amazing! They have monitored her rather closely, but Kozin released her from therapy for a month (we were there in April and don't go back until the end of May), and we do not see him again until October!
Her range of motion has increased. I know with some of the other procedures, there is a chance of losing certain movements ~ I don't see that she has lost anything!
My husband was a little skeptical at first, but he is thrilled with the results too.
Please let me know if you have specific questions and I will do my best to answer them.
Re: New here!
I'M ALSO NEW HERE. MY SON IS 8MTHS OLD. BORN WITH BRACHIAL PLEXUS. VERY UNSURE OF WHAT THE FUTURE HOLDS FOR HIM. ME AND MY HUSBAND ARE BOTH STRUGGLING TO TRY TO MAKE SENSE OF ALL OF THIS. JUST NEED SOME HELP.
Re: New here!
Hello everyone!
I am in AWH because I came across the page. I never knew there was a support group for BPI. My daughter has been dealing with this for the last 10 years and for the last 5 years of her life I was not sure who could help me. She was seeing Dr. Nath later Dr. Shenaq. Well after the program was closed with TX Children in Houston I was lost. I had no idea of all the resources online. She has not continued her therapy or follow ups. But on the up side I finally got the answers I was looking for and will see Dr. Nath tomorrow to she her progress.
I thank you for the support. I don't believe we had this support in 99. Thank you.
I am in AWH because I came across the page. I never knew there was a support group for BPI. My daughter has been dealing with this for the last 10 years and for the last 5 years of her life I was not sure who could help me. She was seeing Dr. Nath later Dr. Shenaq. Well after the program was closed with TX Children in Houston I was lost. I had no idea of all the resources online. She has not continued her therapy or follow ups. But on the up side I finally got the answers I was looking for and will see Dr. Nath tomorrow to she her progress.
I thank you for the support. I don't believe we had this support in 99. Thank you.