United Brachial Plexus Network, Inc.

Orig. post on TBPI Forum

We're currently researching surgeons for our son Chase(age 7) and have continuously been brought to the following: Susan Mackinnon @ Washington University (she wants to see Chase asap 4/22), Allan Belzberg @ Johns Hopkins (waiting to be scheduled), and Spinner, Bishop and Shin @ Mayo (scheduled for 6/1). We're not up for travelling to all three as we're coming from California and have 2 younger children, but want to make the best choice for Chase. He was injured on 3/6 and we don't want to wait too long to move forward. We'd love to hear about your experiences/opinions asap either privately or on the forum. Thanks!
Lourdes

Hi. I know exactly what you are feeling right now. My 11 month old has OBPI and just had surgery for repair and nerve grafts on February 14th. We took him to Miami Children's Hospital and they have an excellent Brachial Plexus Program. His operation was performed by Dr. Sanjiv Bhatia. Another name you may want to reasearch is Dr. Raul Nath from Texas. I have heard many wonderful things about his program as well.
Good luck in your search and your Chase's recovery.

What a nightmare for you..having to deal with an injured child is tough enough, but organizing travel and trying to see the various experts can be daunting.

We traveled to Baltimore to see Dr. Belzbergs group. I strongly suggest you speak with them directly. Bonus is that they do kids and adults. Dr. Redett is a pediatric plastic surgeon and works with Dr. Belzberg. Your child gets a neurosurgoen and plastic surgeon, plus others as needed.

If you talk with his office they will smooth out the travel for you. Dr. Belzberg tries to minimize the travel so he may delay your visit so that you only make one visit and get surgery if needed at the same visit. If you talk with them, they will plan out everything with you and explain the timing issues.

Dr. Belzberg does not answer email from patients, but his staff do and they are great. He only responds to doctors email and given the crazy hours he works, his patients all understand.

By the way, our son did not need surgery. Dr. Belzberg felt that time and nature would do better than he could with surgery. We have been through intense therapy and have recovered almost complete function. So I can't tell you how good a surgeon he is but I can tell you that other surgeons wanted to operate and he clearly was correct in just waiting.

Hi,
So sorry to hear about your little one. My son (2 months old) is seeing Dr. Piatt (Chief of Neurosurgery) at St. Christophers Hospital in Philadelphia. He is also a professor of neuroscience at Drexel University. He is absolutely wonderful. I would highly suggest that you give him a call. Let us know how you make out & good luck!

HI- I JUST READ YOUR POST ABOUT THE DOCTOR IN PHILADELPHIA. MY FAMILY IS MOVING BACK TO SOUTH JERSEY IN JUNE AND I AM CURRENTLY LOOKING FOR A NEUROLOGIST FOR MY SON. I HAVE CONTACTED DR. FINKLE @ CHILDRENS HOSPITAL OF PHILA. BUT AS YOU CAN PROBABLY GUESS, I ALWAYS CHECK DOCS OUT NOW. SO, CAN YOU EMAIL ME YOU DOCS INFO? THANK YOU MARLYNDDJ@AOL.COM

We also live in California and have been quite happy with Dr. Hentz at Stanford. He was flown into Houston to do some consulting with Texas Childrens after Dr. Laurent passed away.
Good Luck

Another Philadelphia doctor who specializes in BPI is Dr. Scott Kozin with Shriners. We have been seeing him for about a year and a half and have been very impressed with his knowledge of BPIs and care of our child. His contact information (and for some of the other docs. mentioned in this thread) can be found on the medical resources page of this site. Good Luck! Becky

I know what you are going through. My son has a brachial plexus injury from an auto accident. He has done well over time but it has not been easy being the mom. It is so difficult to see your child in pain and we so much want to protect them.
We also struggled as to there to go for wurgery. Our local doctor did the research for us and suggested Dr. Belzberg. We went to see him last after seeing some of the people that this site suggested. We almost went with a doctor in Texas but then we met the Hopkins team and that was it.

We had surgery at Johns Hopkins and it was a wonderful experience. Once you get to know the group you will know that they will do what is best for your child. You mentioned that you are waiting to be scheduled. Dr. Belzberg is very careful to try and make sure that you only travel when needed so he may be waiting to have you see him at a certain time after the injury when it is best to do the exam and perhaps the surgery all in one visit. Get to know the office people, they are kind and will help with arrangements. Also, given that your son is pediatric, you will likely also get to meet the plastic surgeon and have him involved in the surgery. They are a great team and worth going to.

Good luck with your son. You will make the best decision you can and then always wonder what if. This is part of being a parent and is so hard. All of us are supportive of you!!

Hi Alison,
I would love to here more. We're headed to see Dr Mackinnon @ Washington University 4/21 for consultation which is quite a trip for us...I appreciate what you said about Belzberg trying to schedule everything in one trip if possible, we're not seeing that from anyone else. Please email me or reply if you don't mind sharing more. Thanks!