United Brachial Plexus Network, Inc.

Hallo everybody. I am grateful to you all for the information and the support. It helped me to come to terms with reality. I would like to thank Pam for introducing me to UBPN. Also I would like to thank Francine for her continued support and suggestion. Thanks to Carole , Kathleen , Mary mom. I would like to know how much the Primary Surgery of BPI could cost ?Most of the member in UBPN have gone to TCH, I would like some input from parents who have gone to other hospitals as well so we can compare the cost as well as the success rate of other Hospitals. I think everybody is not covered with Health Insurance and also the Health Insurance does not cover all the expense of surgery? I am writing from Bangladesh, which is South East Asia . Unfortunate but true in our country there are no Pediatric Neurologist available with specialization. Although we have many Pediatrics but no Pediatric Neuromedicine or Surgeon is available. So I am depending a lot on Internet and Foreign Doctors. I will request you all to provide me information on the cost of Surgery for BPI . Are there any way I can reduce this cost by any chance ? I will appreciate your response.

MUNAM SIDDIQUI
Babys father

My son just had primary in October at Texas Children's and the whole tab was around $40,000. You could try contacting the hospital you are interested in to see what type of programs they have.
Cindy

I am not sure if all the bills are in yet, but if they are it was about $22,000 at St. Louis. They do not do the same exact Surgery that TCH does though.

Hello, Munam. Well, I too have gone to TCH so I can't tell you much about another BP Specialist in the U.S. There are a list of specialists / hospitals on this site though. Go to the home page and click on Resources - Web Links - Hospital / Doctor.

Also, there are well known and experienced BP clinics in Paris and Rome which would save you quite a bit of travel time and expense.

After compiling a list of prospective BP Specialists, I would recommend contacting each hospital directly to findout how much it will cost because the cost can really vary from one child to the next -- even for the same procedure at the same hospital. Also, be sure to get all cost estimates -- surgeon(s) fees and hospital charges (since these are typically billed separately). The best person to ask would probably be someone at the hospital who deals with the insurance companies. I hope this helps. -Tina

Tina,

Thanks for the information. I was wondering if you can provide me the website address and email of BP clincs in Rome and Paris?Any idea how much it can cost. Do you know any one alrady recived treatment in Paris or Rome . Is it as Good as TCH?

Munam

There is actually one website for the two centers -- Paris and Rome -- http://www.obstetricalpalsy.net/ -- then click on Enter (unless you can read French or Italian LOL!), or here's the direct link -- http://www.obstetricalpalsy.net/Home%20page.htm .

I really don't know how much it costs. There is someone at TCH who is the liasion with the insurance companies. I can't recall his name right now, but if you call Lisa Davis at 1-800-364-5437 x3290, she can get you in touch with him. He will be very helpful.

I can't tell you which center is better, but what I can tell you is that the Paris and Rome centers are where successful BP surgeries began. That's where all the protocol was developed over 20 years ago. Does that mean that they're the best? I can't answer that b/c I've never dealt with either of those centers. I don't know anyone here who has gone there either unfortunately. Perhaps if you post a message asking about Paris and Rome, then maybe someone will be able to help you. Another suggestion is to contact the two centers (their email addresses are on the website) and ask them for some referrals of patients / support groups that you can contact. Also, ask them how much the surgery costs as well as any other ?s you have. Francine has a great list of questions to ask your dr. if you're considering surgery (http://www.injurednewborn.com/maia/homepage.html -- sorry, but I don't know the exact link to the ?s page). Perhaps they'll be open to doing a video evaluation too since you're so far. If you haven't already, I would at least do the video eval w/TCH too. I hope this helps. Ask any ?s and I'll try to answer. -Tina

hi munam hows the baby?
remember there may be other costs to factor in also-
like the cost of additional surgeries(once you have one-you are more likely to have others) and trauma, additional injury ,and complications.
The biggest cost in my opinion, of the surgeries on young children , are the psychological effects they have on the families and the child- Some would say that it is the condition that costs the effects- but I have yet to see much depression or unhappiness in the children who have not had multiple surgeries. Some also would say that that may be because the multiple surgeries are only done for children with the most severe injuries but I can tell you there are children and adults with severe injuries who have not had surgery or who have maybe surgery to correct the pain if there is pain- and they seem to be functioning and considerably more satisfied with their condition accepting it and getting on with their life...
I know psychological trauma/damage is not a cost/risk that anyone wishes or chooses for their child(family)- and I know ,love and care for many on this board that believe still -that even knowing these risks, that surgery is the best choice for their child- and so it may be for you also- it is not my desire to judge ANYones decision to have surgery, only to inform someone of my opinion in case they think it relative.Heck I could be deciding to have surgery somewhere down the line for my son too- who knows...
learning what you need to pay is an important thing
blessings on your decision whatever it may be...
breathe and know that it is good!

Hello there,

My daughters case was unusual but between the 2 MRIs and 6 days in the Hospital with one surgery that was 13 hrs long and 2 days later was taken back to OR to finish up and put on the spica cast. My daughter was on the stepdown unit (it is like a ICU)everything anded up to cost about $60,000.

LOL
Toni

Mary,

I have to respond to your post...please clarify that you are or are not saying that in your experience you have found that of all the people (children and adults) that you have met with brachial plexus injuries, the ones who have not had surgery (or only surgery for pain) are happier people, more well-adjusted?

That was my interpretation of your comment, and I have to speak out and say that in my personal experience of being an advocate for people with this injury I have not had this impression AT ALL. Each individual is so very different...I have met children who have had multiple surgeries who are bright, friendly, outgoing, and very well-adjusted. I have also met children who have not had surgery who are not so well-adjusted. And everything in between. I know several adults with this injury, and some who even had surgery as children...one of whom is the most well-adjusted, giving, loving person I have ever met in my life: Nancy Birk.

Please please reconsider your stance on this important topic...what you are saying does not at all match up to what my experience has shown me.

Respectfully stated,
Bridget

My stance is that children with multiple surgeries are more likely to experience trauma related psychological side effects.
I certainly respect your right to disagree tho