United Brachial Plexus Network, Inc.

Hey, everyone. I'm looking to get a list of fairly local doctors together to refer patients to for the hospital I work at.

I know that to get great care, traveling to a BPI specialist is always an issue, but what I'm looking for is has anybody seen or know of a doctor anywhere in Upstate NY (from Albany area to Rochester area) that has a good knowledge base of BPI who could do some initial follow-up for newborns and would know enough to make a referral to someone who does primary or secondary surgery if that is an issue down the road? Many of the patients in "our system" (referring the hospital I work at) see our local orthopedist, and he doesn't refer anybody outside. Scott Kozin just came and gave a talk in Grand Rounds and stressed importance of follow-up for our kids (which of course I already knew, but some of our doctors didn't believe), and I'm updating our unit's protocol (which says to make a follow-up appointment with a BPI specialist, whether neurologist, orthopedist, or whatever).

I need names, contact information, and feedback from anyone who has seen a doctor with good feedback.

Feel free to email me at nursemidwife86@frontiernet.net (my email has changed for anyone who had it from before) or post the information here for all to benefit from. I'm going to check the resource board of course, too.

Thanks in advance.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

Tanya,

I posted contact information on your other post about contacting Pia Stampe, but I will post it here too. We have being seeing Dr. Margaret Turk, Physical Medicine & Rehab at University Hospital in Syracuse. Her contact information is (315) 464-5820. When we see her, Lynne Logan, PT, also accompanies her. They have been GREAT with providing follow-up care after my daughter's surgeries. Both are very knowledgable about BPI and have seen more kids than anyone we have come across in Rochester. We have found a local OT (in Rochester)that we LOVE and she has worked with our daughter since she was 3yrs old. She is very knowledgable about BPI and she is unfortunately seeing more and more kids with this injury. Her name is Kathy Stoklosa, MPA,OTR/L and she is affliated with Strong Hospital. Her contact number is (585) 341-9000.

A great Doctor who is one of the best with BPI in rochester NY Is Jason M Schwalb MD assistant Professor of Neurosurgery, He works with Dr. Jason Huang MD both Are fantastic in field of nerve grafting and Neurosurgery,

If you google them you will see what they have done. They are with the University of Rochester Medical Center and Strong.

Hope this helps,

Mary Beth

Bumping this up in hopes that more people have more information.

Tanya in NY
Amber's Mom, ROBPI, 5 years old