United Brachial Plexus Network, Inc.

I am new to this site and only found it a week ago. I have read I think everything and feel this site is the answer to my prayers.
I was in an auto accident on February 27, 2000. I have had a medical nightmare since then... It took six months and eight doctors before I found a physician who in his thirty year practice had only seen one other person like me! He diagnosed my brachial plexus injury using medical reference books. He did not know how to treat it though. That was August of 2000 and since that date have not been able to find any physician who has knowledge of how to treat this injury. The Mayo clinic looked at my medical records and said my arm was beyond hope. Only I am not ready to give up hope! I live in Minnesota and need a doctor who is willing to take payments.(My health insurance cancelled me because of this injury and the auto insurance company won't pay.) If anyone knows of a good specialist please let me know.

Second I am a very physically active person and have been very limited in what I can do since the accident. I know there has to be adaptive equipment out there for doing sports(mountain biking, skiing, etc.) but so far I have only found things to help me cook and get dressed. I am not the type of person to sit still and this is going to drive me crazy if I have to give up being physically active. I promised my nine year old we would go rock climbing when he is ten that was before the accident and I really don't want to have to break yet another promise. I want my life back...
Thank you for any and all your help.

Mindy,

Welcome to our community! I am sure you will find lots of support and information...

Next year I hope to see you posting news of your latest rock climbing expedition with your son.

Best of luck,
Bridget

hi mindy and welcome! i'm glad you found this site and realise you are not alone and that this injury is pretty common, despite what your doctor says. i feel very sad for you that it took so long to diagnose you, i can't imagine what that would be like. i am based in new zealand but there are quite a few tbpi (traumtic bpi) adults in the states posting here whose experiences may help you-if you scroll down to a post a few below this titled 'adult pain relief' or something similar, you will find postings from scott, who has had successful surgery with i think dr kline who is world renowned for treating adult trauma patients, and a post from kathy (lower case) who like you is a fairly new injured tbpi. you can mail scott about his treatment as i know he has no problem with that and his success story may give you some hope.
i can relate to your comments about your physical restrictions now, i got my injury before i had children and only recently realised that if it happens when you already have children, then they as well as you have to go through the searingly painful process of dealing with the sudden life changes you now face. i've had my bpi for more than half my life now and can tell you that it rarely affects my chosen lifestyle, i just won't let it. i have no use of the affected arm but since moving to new zealand where physical activity is practically a religion i've joined the kids in rock climbing-it can be done with proper supervision even with one arm. of course, i'm never going to climb everest but the fact that i even try inspires my kids to try too and i can't tell you how satisfying it is to see their wee backsides disappearing up the rockface ahead of me even though i myself have only got 10 feet off the ground! you need to choose the rockface carefully, vertical or overhangs are pretty much out, but if there's any kind of a slope i can use gravity to keep me there while i find handholds. new zealand also has a paralympian skier, rachael battersby, who skiis at world level with one arm and one of the brits, dave m , a regular poster here, has tried skiing for the first time in his life after his injury, he just didn't use poles at all and got on fine. paulo g from portugal has a web page (listed in the links from this sire) with pictures of his adaption for riding a bike. i ride a horse most days and that gives me more pleasure than i can say, again, i am never going to be as good as many of my able bodied counterparts but i am better than some and it helps tremendously with my posture and upper body strength, both of which can become a problem. to be honest, i don't do any of these things for therapy, i do them because i want to and that in itself is the best mental therapy you can have. i don't know about you, but my children are so very proud of me that any setbacks and injuries i get (and i do!) are more than made up for in the sheer satisfaction of doing the things i want to despite the seemingly overwhelming obstacles. good luck in your endeavours, and keep us posted with how you get on both in your search for treatment and your rock climbing! feel free to mail me any time (you can find someone's email by clicking on their name) best wishes jenny nz

HI MINDY!

I'm really pleased you have posted here!! ;0) there are loads of people who can help answer some of the questions you asked me...jen has mentioned scott, who has had amazing results from surgery years after he was first injured, so don't give up yet! tell your friends that amputation is not an option that you need to consider right now, if ever...

Have you posted on the general board and asked about medical care in your state? Someone might be able to put you in the right direction...it's always worth asking there too.

Bye for now...Liz xx ps; I'll mail you....

Thank you for all the postings....

How do you get Scott's e-mail address... I cannot figure that out!(I am not very good at this computer stuff.)

I looked at paulo's site but I don't know if that will work... I only have roughly 20% movement in both my shoulder and elbow and nothing below the elbow. My balance is awful these days so I am hoping somebody has any ideas of how to protect my arm while I am trying to get my balance back. The OT I saw says my balance will come back in time as long as I work at it. Any ideas would be greatly appreciated.
This site has been a wonderful source of information and I am so glad you all do not think I am crazy for wanting my active lifestyle back.

God bless

Mindy

Hi Mindy
Sorry I can't help with the medical information but don't even consider giving up... and please tell your friends that we don't cut off our arms because they are not working properly... There may be some help out there for some recovery and from what I read recovery is often very slow...

I am birth injured so I have always had physicial limits. But you hang in there try not to get to discouraged. You can be a great mother even with bpi... ask jenny she goes rock climbing.... I raised three kids and never limited my self as to what I could do with the kids... I never once thought I could not be a good mother... I guess it worked out ok cuz the kids are grown and they still like me... they never noticed I was bpi until someone else said I moved funny...
I am sure you are a great mother and really all you need to do is love your kids and listen...
Welcome to the board I am sure lots of peeps will help you with good cheer and information...
Kath

Hi Mindy....

Just wanted to say hello and welcome. Glad you found this site. Must agree with everyone....."NEVER give up". Seems that time has a wonderful way of smoothing out rough edges. It just takes more time with nerve injuries. I once told someone that I would trade this bpi for a few broken bones anytime. Don't have that choice though, so we plow through and play the cards the best we know how. And it does get easier with time.

It's really not surprising that your doc didn't know anything about your injury. Sadly, this is still the case in a lot of places. And sadly, there is no quick fix for this injury. I think that as you get along, you will make the neccessary adjustments to do the things you want to do. And there will always be things that you cannot do, but I doubt that list will be very long. You sound like the type that won't let that happen.

Here's to you and your ten year old scaling the wall !!!! You'll get there......

George

mindy if you scroll down the topic list to the post dated Dec 3rd titled Adult pain relief/life, one of the responses is from scott. If you click on his name the Outlook Express box clicks up containing his email addy and yu can mail him direct. He gained a lot of movement quite a while after his injury from his surgery. As far as Paulo's bike riding goes, I don't think he has any more arm function than you, he just attaches the non-working arm to the handlebars with a velcro glove. You can probably contact him via his site to check on his function level, but never say never! Good luck :0)

Thank you all for your suggestions. I am going to try out some of these things. It has helped tremendously in the last week since I found this site to know I am not alone.

It has been a long fight to get were I am today and I plan to keep on fighting. I don't believe in giving up... It took over a year before I would use any adaptive equipment. I only did after I set the stove on fire! No one was hurt and I got it out without harming anything but it woke me up to asking for help. I think asking for help has been the hardest part of this injury to date.

Thank you again everyone and God bless.

Mindy

Hello
Well…if I have that 20% I could go to…hum…maybe to the moon..eheh
Best to you Mindy, and don’t mind, everything is possible!
Paulo