Questions about surgery and appts. at Shriners
Questions about surgery and appts. at Shriners
Dr. Hentz at Stanford has recommended that my 7 yo daughter undergo arthroscopic contracture release and a muscle transfer. They can do it here locally. However, after speaking to a doctor friend of ours he suggested that we consider pursuing surgeons who do this as their specialty (i.e Kozin, Waters). What are your thoughts on this? Is there a compelling reason to travel across the country for BPI surgery? Pros? Cons? How do you handle the ongoing physical therapy visits post-op? Has anyone done this surgery that can help me understand it better?
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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: Questions about surgery and appts. at Shriners
I think it's always a good idea to get a second opinion. I have met Dr. Waters and Dr. Kozin and they are both outstanding specialists. Dr. Waters has done surgery on my son. My son has not had this surgery, but we have had four surgeries to date. Dr. Waters and Dr. Kozin are both worth the distance. They both have a lot of experience and knowledge in all issues pertaining to BPI. So, the pro of traveling the distance is the confidence in knowing you are seeking the advice of surgeons that work with several families with BPI. I know that since my son's last surgery in 2004, I have had many questions that I have called in to Dr. Waters. On each occassion I received a call back and he even took time to call me personally after being in surgery all day. He has also corresponded with our pediatrician locally with concerns we have. I live in an area where I have to explain what a BPI is to every medical professional I meet, so it has been nice to go to places where they know what I am talking about. The physical therapists at Children's Hospital Boston have also been able to correspond with our physical therapists here locally to insure my son was receiving the best treatment possible. You are more than welcome to email me with questions any time. My email is njacoby499@yahoo.com. I look forward to hearing from you. I hope this information helps. Have a great day!!!
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5
Re: Questions about surgery and appts. at Shriners
I wanted to let you know that you can also see Dr. James at Sacramento Shriners if you want another opinion.
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MommyTink28
- Posts: 2
- Joined: Thu Jul 01, 2010 2:28 pm
- Injury Description, Date, extent, surgical intervention etc: My Daughter, Liliana born 10/18/2008, LBPI/Erb's Palsy, Nerve Transfer/Grafting May 2009 by Dr. Scott Kozin of Philadelphia Shriner's Hospital; Will have an orthoscopic reduction of her shoulder August 24th, 2010.
Re: Questions about surgery and appts. at Shriners
My daughter had nerve graft/transfer surgery with Dr. Kozin last May (09). He is an incredible surgeon and an incredible person. He has personally called us and is extremely well spoken. He makes things easy to understand and is very optimistic. He is incredibly well versed in BPIs. We have gone to Phili for many followups and will be going back in August for Liliana's orthoscopic reduction surgery with Dr. Kozin and Dr. William's from Texas. Liliana has progressed well with her recovery, but the internal rotation of her shoulder, typical for Erb's Palsy, is keeping her from progressing further. This new surgery should speed her recovery.
My recommendation is to speak with your local Shriner's organization to find out if there is any assistance for travel that far and go to the Shriner's Hospital website to print out the application for care. I know that our local Shrine in NY offered travel, but we are close enough that it is easy to travel by car. They are always traveling to PA. There is no harm in at least gathering info and submitting the application.
Here is the link to the application. If the link doesn't work, you can simply go to the website and on the left hand side you will see a link for the Application site.
http://www.shrinershq.org/~/media/Hospi ... glish.ashx
My recommendation is to speak with your local Shriner's organization to find out if there is any assistance for travel that far and go to the Shriner's Hospital website to print out the application for care. I know that our local Shrine in NY offered travel, but we are close enough that it is easy to travel by car. They are always traveling to PA. There is no harm in at least gathering info and submitting the application.
Here is the link to the application. If the link doesn't work, you can simply go to the website and on the left hand side you will see a link for the Application site.
http://www.shrinershq.org/~/media/Hospi ... glish.ashx
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Sherrise
- Posts: 5
- Joined: Mon Aug 02, 2010 5:43 pm
- Injury Description, Date, extent, surgical intervention etc: My son suffers from a TBPI received on May 15, 2009 in a Motorcycle accident that also took the life of his best friend. He has global avulsion, currently no sensation or movement of his right arm. He had nerve transfer surgery done by Dr. Scott Kozin at Shriner's hospital in Philadelphia, PA on August 30, 2009.
Re: Questions about surgery and appts. at Shriners
YES! It is worth it. Dr. Kozin is the most wonderful medical professional I have ever dealt with. He goes out of his way to do everything he can, and he is the BEST at this specialty.
Blessings,
Sherrise
Blessings,
Sherrise
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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:
Re: Questions about surgery and appts. at Shriners
Bumping up for new Mom in NY....sorry I can't bring up your name 
Carolyn J
LOBPI/72
Carolyn J
LOBPI/72
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Questions about surgery and appts. at Shriners
If you live in San Francisco, why don't you go down to LA and see Michael Pearl. He started this surgery (if you are looking for experience...).
We took our daughter to see him a few years ago, she was not a candidate for ACR,but he was incredibly nice and very helpful.
of course, Kozin and Waters are great too... but if you are west coast...
good luck,
claudia
We took our daughter to see him a few years ago, she was not a candidate for ACR,but he was incredibly nice and very helpful.
of course, Kozin and Waters are great too... but if you are west coast...
good luck,
claudia
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AnnieGrl06
- Posts: 2
- Joined: Thu Aug 05, 2010 1:17 pm
- Injury Description, Date, extent, surgical intervention etc: My daughter, Merandah, was born on August 22, 2006 with a severe brachial plexus injury. I did not know until today that this website/organization existed until today. It is such a relief to me to be able to connect with other parents whose child(ren) are coping with the same injury. I always knew that my daughter was not the only person coping with this injury but I always felt alone because I didn't know anyone else who either their child or themself was dealing with a BPI, but now seeing this website and the "blogs" or "forums" reminds me we are not alone.
Re: Questions about surgery and appts. at Shriners
Dr. Scott Kozin at the Children's Mercy Hospital did my daughter's nerve graft in April 2007. He is an awesome doctor! He was very open and answered ALL of my questions...my over all experience with him was AMAZING.