United Brachial Plexus Network, Inc.

I just recently found this website. It brings back so many memories. My daughter is now 17. She has compensated in so many ways. I am very proud of her. Her right arm was injured at delivery. Broken collar bone as well. We went thru OT for the first 4 years. At this time (1989) no one ever gave me the option of surgery...only OT. Just before she began kindergarten we moved and met a new Doctor. He mentioned that she might be a candidate for bone lengthening but he didn't recommend it until she was a teenager and could help in making the decision. She is now asking questions about her future...decisions about college and what would be an appropriate career for her with her limitations. She also just asked about disability....someone told her she should be able to qualify. She is looking to me to help her find her options now at this point in her life. She has managed so much better than I ever imagined during her teen years. She has a beautiful personality and has not allowed the limitations to overcome her joy for life. But she realizes now that the erb's palsy will affect some of her major life decisions. She hasn't seen a doctor for many years. I would like to know if anyone can help me find the correct resources that are available to her as she approaches becoming a young adult. We now live in Alabama and I'm not sure we have a medical team here that specializes in the surgical options, etc. I will be contacting UAB hospital in Birmingham as my first choice here, as that is where her last evaluations were made. But if she were to seriously consider the surgical options, I would want to know the most experienced. She is covered by BCBS, but would the Shriners still be an option for her? I feel as if I'm rambling, sorry....just hoping this post may reach someone who can help me help her once again at an important stage in her life. This website is a Godsend for many I'm sure. I would loved to have had this as a resource and support when Lindsey was born. Best wishes to all!

I don't know anything about Alabama, but Shriners is an option no matter what insurance you have or don't have. They also help with transportation and lodging if you need to travel to see a specialist. We have pretty good private insurance through my husband's work, but we still go from Los Angeles to Philadelphia to see Dr. Kozin!

I'm sure others here will be able to help answer the disability question. I know it's been a topic of discussion a few times!

Kate

I have heard Shriners, Also Dr. Nath I believe in TX, and Mayo in MN (this is where Dustin is being seen).
Dustin is getting disability. You will have to check with SS. I know there is a new finding on BP injuries where it may be eligible. Caution key word MAY. Does not guarantee but you should apply and see what you can get. Dustin had several injuries that when considered with his TBPI made him eligible. TBI, coordination lose in his good hand, coordination in walking,. We still had nearly a 10 month fight to get the ruling. Also check with your local Division of Rehabilitation. Dustin qualified there too. They help some with his college, job training, housing for college, ect. Again depends on the extent of injury. Dustin planned on being a neurosurgeon, with this injury he is looking into different areas still in the medical field. Don't believe one handed surgery would work out, but he is now looking into physiology(sp). I think your daughter will find many careers that she could do. There are many on this site with a variety of careers.
Sue

Hi,
There are many options for future jobs. I am studying to be a nurse now, but have a Education degree and a PT degree. Amy, who is 19 and on this site too, is studying to be an OT.
It depends on what she is interested in, her own mobility/limitations, but even with that there is always a way to make it work.
As for surgery, yes the Shriners is always an option and I am sure others here know of more info for you regarding that.
I had a tendon transfer (latissimus dorsi) at age 14 (10 days shy of my 15th birthday) to gain external rotation and that was in 1990! There are options out there now more than ever.
Good Luck!
Marieke
http://nurse-to-be08.blogspot.com/

Thanks for the replies. Lindsey has so many questions regarding the surgery process....what happens first and how long is the recovery process? I know our next step is to find the right doctor but if you have any general information about the surgeries that would give her an idea about her upcoming options we would appreciate it. She is of course worried about the pain associated with bone lengthening etc. Thanks again.

For mine, I had 6 months of intense PT before surgery in order to get as strong as possible, then after surgery I was in a brace for 6 weeks. I had PT /OT after that for 3 years. At the begining (first yr) it was 3x a week, then 2x, then 1x, then once every 2 weeks and near the end it was 1x a month or as needed more often if something came up. Hard word and dedication was needed on my part. It was worth it though.
Marieke

Here is a thread with someone who had bone lengthening done. May have some of the answers you are looking for or may be able to e-mail them.
Sue

Welcome to UBPN Lindsey's Mom,
I suggest that you browse the "Adults With OBPI(Erb's Palsy & others) Message Board" in addition of this "General Message Board". Use the "Search" Button for a Topic Thread, i.e.,"SURGERIES", "Careers", "SSI & SSD(Social Security Disability", "Over-use of Unaffected Limbs"...etc.

I am age 68, with LOBPI, and had a great career in Social Work for 17 yrs. and have 1 adult son. There are many careers discussed on the "Adult Message Boards" You are very welcome to post any questions there too.

I only found a name for my injuries AND UBPN 2 & 1/2 yrs ago.

Here in our UBPN Forums there are NO DUMB QUESTIONS!!

Carolyn J
Adult LOBPI


Message was edited by: Carolyn J

http://ubpn.org/messageboard/thread ... 8&tstart=0
oops forgot the thread in that post, sorry

Hi & Welcome
You have received good advice but I think you have to be under 18 for Shriner's in Philly...

Others who have used Shriner's may be able to give you more information.
There are many doctors treating OBPI today and you should get more than one opinion if possible.


Kath (robpi/adult)