United Brachial Plexus Network, Inc.

Hey Joel...
great to meet you...only wish it waas in transition and not because of our injuries.
I had 2 more emg's yesterday and met with the surgeon i have been seeing at hospital for special surgery. i was pleased with what he had to say. he wants to wait 1 more month to see if my triceps come back because he wanted to use the long head for my deltoid? Anyway, that gives me time to see mayo and belzberg. I feel like i will be able to make an educated choice at that point.
Thank you all for your input.
Ellen, since i know you have a lot more info maybe i will email you, if that is ok?
Joel i'll see you out there i hope!
Robin

For what it's worth-it may give you some more hope - here is our son's miracle story.
August 10 2006, age 18, crashed bicycle at 70 km/hr. racing in Belgium. Woke from collarbone surgery with paralysed arm, some use of fingers. We were told this is normal, he'd recover fully in 4 months or so.

A month later, back home, EMG testing showed NO activity in any nerves from c5,6,7. We were told nerves were probably avulsed, 65 percent chance of any recovery in arm. I started the internet search. A few weeks later with some begging, we got an appt at the Mayo. First trip, which was early Nov.,they found slight responses from their EMG tests in one muscle, and recommended we return in January for several nerve transfers, including sural nerve in leg. In January, when we went back, the EMGs showed return of signals in all but deltoid, so they decided to wait and see if there would be more recovery and scheduled nerve transfer surgery for deltoid for March.

When they did EMG's in March, there was slight activity in most of the deltoid. They told us that Eric was probably better off as he was, as the surgery would set him back for several months, and could not guarantee better than 85% function and he was pretty close to that already. The docs were totally amazed at his recovery.

Now, 14 months later, his arm is fairly functional, although he tried to swim the other day and said it was a bit of a challenge. But he is back on the bike, and says he doesn't feel he is missing anything serious. When I look back at where we were this time last year, I can't believe how far we have come, and how much help this board was.

It's wonderful that you are getting consults with sevderal docs - you will indeed be able to make an informed decision. I just can't figure out why insurance won't cover any of this. That seems so counter-productive.


Message was edited by: fortitudine

Hi Robin,

Of course you can email me. Sorry I only now saw your message. LNBram@bellsouth.net

Take care,

Ellen

thank you! that is very encouraging. I need all the good news i can get...it has been a while. As for my insurance..they wont cover any out of network doctors. when i explained to them my situation and the fact that there are no docs in their "network" who do this type of surgery they said they would then "negotiate" with the dr. So, unless the mayo docs or hopkins doc will do that, i am out of luck. My doc in NYC doesnt accept insurance at all so i cant imagine he will negotiate. Im not done with this battle yet! gives me something to focus on other than pain!
thanks!

My insurance said they wouldn't cover Mayo either. I explained that they didn't have any drs in this field of expertise. We eventually got a "gap" coverage. They did negotiate with Mayo and they have paid most of our costs there. So keep fighting.
Sue

We had our neurosurgeon in Hershey write a letter of necessity to the insurance company explaining why we needed to go to Mayo - our insurance finally agreed to pay the bills.

I can tell you that a lot of insurance companies LOVE Mayo because actually their prices are comparatively low! They are not-for-profit (as opposed to Nath & Terzis, for example, who are), and the surgeons are on a straight salary. I've compared their prices with other hospitals and have been very pleasantly surprised.

I found that our insurance (Blue Cross Blue Shield of Ga) was willing to consider this as in-network because Atlanta didn't have a bpi specialist with the experience and skills necessary to do John's surgeries. They ran it thru BCBS-Minnesota to be treated as in-network.

I think after your consult w/Mayo, you'll know much more about the specific surgeries they recommend - and I bet your local doctor doesn't do them all, especially since Mayo is still pretty "cutting edge" in the US.

Keep us posted,

Ellen

Ellen hey hi there it has been awhile since I have been on I have gotten myself in a rut and trying to get out David is so frustrated and disappointed that he has given up on doing what Dr. Shin wants him to do and we go back in February and I am afraid we are going to get bad news. I am so glad to hear John is doing well GO JOHN GO please tell him we say hi from us, does he have an e-mail addy would it be ok to e-mail him? I have recently read a book that my sister borrowed to me and after I read it I re read it to David and the book is called No Excuses written by Kyle Maynard he was born with I can't think of the first word right now but the second word is amputation he only had limbs for legs and arme his arms only were to the elbow but no elbow and his legs were to above the knees and not much for feet but no hands no fingers and he wrote this book about his life and it was a great book and he is absolutely right about no excuses, he became a football player and a wrestler and went to state as a wrestler if you haven't heard of this book you should seek it and read it, I just have borrowed it to a frien of ours whom had his accident a month before Davids and he is paralized from the waist down and in a wheelchair and him and David oh they are great together. But now Im back to me and my ryt David has given up and I just can't handle it I want him to be better and he is always wishing to have his arm back but yet won't work with it and it just plain pisses me off sorry for the language but I keep asking myself isn't there someone out there that can do more for him and I feel selfish for asking that cause Mayo Team has been wonderful and you already know that but damn its been 2 years and still hardly nothing he has little movement up and down he can't bend it at the elbow and he still has no feeling and they haven't fused the wrist yet due to the nerves and muscles haven't grown enough when we were at Mayo in December so Dr. Shin told him to go home and grow and how do you make someone grow its wierd but he is small for his age. Was it hard for you to cope with John when he was going through all the surgeries and seeing the docs all the time I feel like I have failed as a mom and not making him better moms are supposed to make their kids better and I feel so alone my mom doesn't wanna deal with it and Davids dad doesn't even go to the appointments any more and he hasn't for a year now and he never seems to wanna try anything with him and David gets mad at me cause his dad won't do and he thinks I can tell him and I can't make him listen I am up in arms and lost and alone... Today David asked me if I could have one wish to know that it would come true what would I wish for and I told him and he sad to me his was to have NORMAL arms and I cried cause that's not what my answer was and than he looked at me and said why didn't you wish for my arms to be normal? And I lost it i started yelling at him and telling him if he would only not be lazy and work with it he would have a chance and Im right in a way but I shouldn't of yelled at him and call him lazy and where we live there is no one here that knowa of his injury the docs here have no clue about it our town is way 2 small and that doesn't help matters, I put myself in counseling and its helping but the counselor has no idea what brachial plexus even is. I just feel alone and no one to talk to and my mom thinks I am going crazy, maybe I am, but I love my son dearly and he was 2 months early and I wasn't even supposed to have kids I had lost 3 before him and he is my treasure and I feel I can't help him.... Do you have any suggestions? Judy

Ellen I went to the web site and I can't message him in less i log in and i go to sign up and it won't let me, David is interested in this sling he has on in his one picture and how do i get a hold of Fernando to find out more about it? Do you have any contact information for Fernando and can i please get it from you please... Thanx Judy

Seems like most of us get this injury because we are athletic. Well, fasten your ******* seatbelt--you're going to be stunned at how much inner strength you have.
Tri-athalon's a cake walk.