United Brachial Plexus Network, Inc.

We have a 3mo old with robpi that will definitely require surgery.No elbow movement or sensation at this time.We have an appt.to see Dr.Peter Waters at Boston Children's.Can someone pls share their experiences from Boston with us?We would especially like to hear from someone that compared TCH and Boston.We live in NJ.We are so afraid that we will make the wrong decision.We could also use help about insurance issues.Our company(amerihealth) will not pay for out of state surgery.25% copay and big deductible.Any suggestions?All replies are a blessing!THANK YOU.

Well where to go is a hard question to answer especially if you have insurance issues. I have not been to either hospital that you have mentioned however there is a great website that has info on both... this first link talks about one child's experience at Boston Children's Hosptial:
http://www.injurednewborn.com/sarah/sarah.html
This is one is for Texas Children's hospital:
http://www.injurednewborn.com/maia/homepage.html

Now for the insurance issue... well I you could keep calling and talk to different people and see if you keep getting the same answer. Find out if getting a referal to the doctor of your choice will make a difference. Also check into getting into your state medicade program... this might help pick up the extra cost that your insurance won't cover. If none of this helps would you consider going to the Shriners? I hear they have a great BPI program in Philly... maybe not to far from you in NJ? Plus they don't charge a dime and they don't even ask for your insurance info!
Here is a link to info regarding them!
Blessings,
Kristie

opps forgot the link to Shriners:
http://www.shrinershq.org/shc/philadelphia/kozincv.html

hi!

Here is the link to a page on my site about a sweety named Sarah who had surgery with Dr. Waters. Her mom's email is on that page and I'm sure that Mary would be very happy to talk with you about Dr. Waters. Another family that go to Dr. Waters is the Looby family and I've emailed Rich to read this post so he can answer as well.

About your insurance - we didn't have to fight our insurance so I'm not personally experienced at this. But I can tell you that there is no multidisciplinary bpi specialty center in NJ and aren't you entitled to go to a specialist? Will your primary physician help you fight this - write a letter ? Can you call the business office at Boston General and ask them if Amerihealth has covered anyone else who went there? They might be able to give you some pointers as well.

I am sure that others who have fought their insurance will step forward to help you.

Where is NJ do you live? There are a lot of families that come here that are from NJ.

Good luck and will you post an update?
-francine

wow - Rich - that was news to me...I wonder if Dr. Maniker trained with Dr. Kline in Louisiana...I'm going to call down there and see what I can learn.

-francine

Let's remember there are alot of Dr's that deal with BPI but are they specialists? I don't think that I want someone thawt thinks they know to work on my child, I think I want someone who I know, knows how to work on my child. The hospital that delivered my son said that they could do the surgery too, but I declined !!!!

I would like to add the information one of our bpi specialists here in the UK shared with us.
He is very keen to see centres of excellence established here in the UK for dealing with both obpi and tbpi and his comment was that he wouldn't consider a centre to be a centre of excellence unless they were performing a minimum of 30 surgeries ( of each type) per year - that number of surgeries is quite low, but of course our population and incidence rate may be smaller over here than in the States.
He also stated that simply performing the surgeries wasn't enough, there should be ongoing evaluation of the results of surgery also.