United Brachial Plexus Network, Inc.

Cindy,

I'm just guessing here, but given your daughter's age and what her recovery is like so far, I would bet that both Dr. Kozin and Dr. Waters would recommend essentially the same thing - tendon transfers with possible anterior capsule release (based on MRI findings). I've found that where they tend to differ is with the younger kids; Dr. Waters typically wants to do tendon transfers along with a capsule release, Dr. Kozin believes in doing only the capsule release first and "seeing how it goes" from there.

If I were you, I'd try to get an MRI done at home so that you can have it sent to both doctors for their opinions on the "urgency" of surgery for your daughter. If her shoulder socket looks like it is forming correctly then they both would likely recommend just tendon transfers and that isn't as time-sensitive. If her shoulder joint is malforming (as seen on the MRI) then I think you would really want to move more aggressively, as the worse it gets the worse the prognosis on a capsule release being able to induce it to correct itself. Your pediatrician could order the MRI, or if you do go see Dr. Waters next week he will likely order one then. You could then send it to Dr. Kozin for a second opinion. The nice thing about Dr. Kozin being at Shriners is you don't actually have to schedule an appointment to talk to him or get his opinion on your daughter's MRI.

Kate

My response goes along with what Kate and Claudia said. We saw Dr. Waters and Dr. Kozin for our daughter who was almost 2 at the time and had not had primary. They both had the same opinion after an MRI and recommended a tendon transfer. Dr. Waters, who we saw first, actually encouraged us to see Dr. Kozin, and he spoke with him as well. We ultimely dedided on Dr. Kozin and Shriners because of the inhouse OT that they did after surgery. I can't say enough about how important or how great it was to have that. I would have been beside myself trying to deal with this on my own at home, as she was very sore and irritable after they removed the cast. I was so afraid I was going to hurt her. Plus, it was wonderful to not have to worry about deductables and copays and all the financial stuff. Good luck!

Cindy,

I have a 1yr old with a global left brachial plexus injury. I have read the message boards for a year and never posted before. But I have a strong opinion about your question having seen both.
No doubt Kozin and Waters are amazing surgeons, but the experience you will have with Kozin will be better in soooo many more ways then I could even tell you. Dr Kozin is an amazing person who will treat you with respect and answer all of your questions. The OT's are amazing!
Waters will ask you to participate in a research study before even looking at your child. Then he will give you a text book speech about bpi and roll his eyes when asked too many questions. Bedside manner put aside though he is a great specialist. He sees over 500 BP kids a year. As far as the OT's I think they are mean!
Kozin and Waters do have similar approaches with Kozin being a little more conservative.

GO SEE BOTH!!!!!! Then make your decision

I couldn't disagree more about your experience with Dr. Waters. Excellent bedside manner, and he stays through all the questions, and is very respectful and concerned. Of course he started seeing my daughter before the research began, I would have gladly been supportive of participating in an international research program trying to identify anything useful about the timing and interventions concerning this devastating preventable injury.

We have been seeing him for 11 years.

Anyway, the overall advice about seeing both (or more )specialists is a great one.

Good luck