United Brachial Plexus Network, Inc.

Hi, I am so glad we found this site! My daughter is 18 yrs old and is left obpi we have never been able to find anyone else with a brachial plexus injury. This is so cool to be able to read about other people with the same thing. The first PT we took her to at age 4 told us that her bones were fused, thats why her elbow would not straighten out!!! Unfortunatly we believed him. About 2 yrs later we were at the ped. office and I asked him about it and needless to say The PT was very misinformed he set us up w/PT and we have been back and forth with it since then. Most of them have never heard of it before so I'm not sure she has ever had alot of success with it. She has alot of the tingly sensations and cant stand for anyone else to touch her upper arm or back. Latley she has been getting migrains and says her neck muscles at the base of her head are stiff and she thinks this is causing the headaches.??? She can use her arm fairly well so we are gratefull for that. Does anyone know if there is a specialist in Utah? Thanks,Crystal

I don't know about specialists in Utah but just wanted to tell you welcome to the board. My son is 12. I think the most frustrating thing with this injury is to not get good care!! There aren't alot of people who know what they're doing!! Stick around though and you'll meet a lot of other parents and people who have been injured!!!
T.

Crystal,
Welcome!! I am glad that you have found this group but of course sad that you needed to! I am sure you will be able to provide us with lots of info and please ask your daughter to come on as well... I know there are other young adults here plus I am sure she will be able to give us parents valuable insight on what our kids are going through.
I don't know of any specialists in Utah but here is a link to a resource page on this site:
http://ubpn.org/weblinks/index.php? ... tal/Doctor

Before we moved to West Virginia we were seeing a group Specialists in Seattle, WA. They are at Children's hopstial. I would be willing to give you some contact info if you find you might like to go there.

Regardless of who you see I am sure all here would agree that you should go and see one or two!! A lot of the specialists have different opinions about how they treat this injury so it is a good idea to get several opinions.

I am looking forward to seeing you and your daughter on the boards very soon!

Blessings,
Kristie

Hi Crystal

Welcome to the board. I am right obpi
I thought I was the only one with the "rare birth injury" until 2 years ago... when I found UBPN and met so many other adults with this birth injury.

What you daughter is talking about is not that unusual... I still don't like anyone to touch my upper arm and one spot on my back will send shocks down my arm and I jump out of my skin... sort of hyper sensitive... no one ever explained why...
Tight neck and shoulders seems to be a common complaint... possibaly caused by compensation.

Please check out the Awareness material for babies as there is so much information there for both of you...
And check with the other parents for a good bpi doctor. A year ago I had some really great PT that helped with many of my complaints and I am about to start PT again for another round...

I am glad for both of you that you found UBPN there is so much to learn about this injury. And also you will get lots of helpful information and support.

Kath

Welcome Crystal and Crystal's Daughter...........

No matter how many times I hear it, it always makes me sad to think that there is yet another "new" person finding us who has thought they were the only one. On the other hand it makes me very happy to think that you HAVE found us...........and now the REAL education can begin

I am 46 and bilateral obpi and have learned wonderful things here Crystal. I have also made some of the best and wackiest friends I have ever had in my life. Please feel free to ask, say or question anything!!! That's how we all learn. And once again....WELCOME

Thanx to all who replied!! I still cant believe after 18 yrs of not being able to talk to anyone about this, we finally have someone to talk to. In Tiffs letter she sounds a little bitter,I just want to say she really never complains about her arm. The stories she told were news to me! I'm sure it was good for her to get it off her chest. Tiff is a beautiful girl and has a lot going for her. She will be starting college this fall and is so excited! Well thanks again,we are excited we found this site!!! Crystal

Crystal

You are the Mom I never talked to anyone! About how I felt about my arm or the fact that sometimes I could not do things... or teasing... just kept it down and turned things into a joke... and moved on thinking... I could do anything I wanted to do as long as I tried... and even when I could not I never spoke about my disappointments....

Until I found UBPN... and the other adult OPBI who really do understand the emotionl impact this injury played on our childhood and teen years no matter how much we accomplished... So I am so glad that she has us to vent... and with venting comes a great deal of emotional healing....

Welcome to both of you.. and I am sure that she was just spilling what needed to be said... she does not have to pretend with us that everything is perfect... we all know what it feels like to pretend that is never bothered us to be different....

I'll bet she is creative and stubbron and persistent... it seems to go along with bpi kids....

Kath