United Brachial Plexus Network, Inc.

Hi all

I've just found this site and am having a field day responding to topics and reading everyone's postings. The only other sites I've ever seen relate mainly to parents with young children who are not really able to relate to me in my late twenties!

I've noticed that as I get older (and especially as I spend less time exercising than I did when at school and university)I'm experiencing not only more pain but different pain. In the last ten years I've gone from having maybe an inch difference between my left and right arms to about 3 inchs, I am also experiencing what I think might be the onset of some arthritis in my BPI hand.

I also noticed that a few people have developed ganglion cysts. I have recently developed one on my good hand that doesn't hurt much and actually will sometimes disappear for a couple of weeks before popping up again - but wondered if this is something common?

Just wondering what everyone's thoughts are on how things are changing as you get older?

The primary difference I've noticed is a general weakening of my affected arm. I have some bicep, limited tricep and deltoid function (I can lift my arm about head level with compensation) and have noticed reduced function especially in the past few years. Also, I experience muscle pain in my shoulder following any type of prolonged activity (like skiing) that involves my affected arm. I thought maybe my shoulder pain was arthritis but my primary physician diagnosed it as muscle pain. I was told that arthritis would more likely showup in the unaffected limb from compensation and overuse (so far so good for me).

Whether my strength loss is the result of aging or something else is difficult to say.

John P.
ROBPI for 68 years

WELCOME TO UBPN,Lacey!!

Ohhhh yeah!!, there are several pain issues as we age. pain on our unafected limbs from over-use and compensation. I definitely have artheritis in my Left BPI wrist and fingers, also my left hip.Actualy my whole left side has pain at some times or another and across the small of my back. I could swear because our spines are all off kilter, without early interventions I never had because my OBPI/Erb's Palsy was never adresed until age 65 when I found this sight and a name other than "birth Injury".

FYI, I found pain relief in excercizing GENTLEYin a warm water pool at least 2 times a week and sitting in a Hot Tub for 15 minutes at a time. I'm sure now that the weekend is over others will "chime in" on this Topic too.

I am sooo glad you found us, Lacey.
Carolyn J
LOBPI/69

Lacey,

Oh yes, the joys of getting older!! I too had trouble with my arm shrinking or atropy as they call it in medical terms. I ended up getting the mod quad surgery about 6 years ago in Houston with Dr. Nath. It really helped me out a lot. However, surgery isn't for everyone. Everyone is different.

I live in Montana and the cold weather really affects me. The last two days I have been in major pain. My affected hand is really hurting and my shoulders are burning like mad. I was doing laundry yesterday and I had what we call zingers down my arm. I only was holding a pair of jeans and boy I thought it was going to knock me to the ground. It almost brought me to tears. I've been trying to take it easy today but with work and all, housework etc. it's really got me down today.
Anyways, just wanted to let you know we all experience it from time to time. Hang in there as we all do and yes this is a wonderful site to be on.
Nice to meet you.
Rachel from MT

Lacey
Welcome to the message boards.
There are many secondary issues some of us face. I think we may have more because of the lack of sound OT/PT advice when we were young.

There are many compensatory movements that we have learned so that we can accomplish tasks we set out to do.
With better OT we may have avoided some of the spinal, neck shoulder and hand issues.

I know when my unaffected arm and shoulder hurt so badly I began to rely on my hand for strength (unaffected one).
That caused wear and tear on my fingers and the osteoarthritis is bad.
As women we usually do all the laundry, shopping and child care and so we are constantly lifting and working.
I learned too late in life that it was OK to let someone else lift the groceries for me.
Using good household equipment could possibly fend off some of the secondary issues many older obpi women have.
Using front loader washers, top refrigerators w/bottom freezers and wall ovens we would not have to twist our spines so much to perform our daily activities.
My last washer/dryers had drawers underneath that lifted them waist height ... that was a big help!
Using the top refrigerator help us to reach things without twisting.
A wall oven installed at a good height makes it possible for us to lift without bending and twisting to get to the pans.
I wish I could get the dishwasher with two drawers one on each side of the sink.

We usually cross our body to get things and move things that's bad for our spines. We are constantly twisting it to reach for things.

I think it would be wise for younger adult/obpi to seek some OT advice in order to better manage their movements. This could help eliminate some of the poor habits we acquire along the way.
I wish someone had told me about secondary issues and overuse when I was younger.
It could have saved so much wear and tear on my spine and hands.

My last PT told me to make so many simple, small changes in my movements and it made a great difference in how I feel on a daily basis.
It's little things that we can do to keep those secondary repetitive stress issues at bay.

Kath robpi/adult

Thanks for the responses ladies!!!

I'd actually started to get concerned about the deterioration of my good hand,as well as the killer back pain that likes to visit once a month or so now and it's great that I've got someone else stressing the importance of not overdoing it. I do tend to be a tad stubborn and overly self reliant - although I did ring dad to come over and change a light bulb the other day after i dropped and smashed the light fitting trying to get it down (oops!)

After reading all of this info on surgical options I'm going to start the hunt for Australian specialists. I've never claimed any compensation for my injury and so don't think that I could afford to get to the US for a consultation let alone for surgeries if that's a path I choose to take.

So if there are any Australians out there who have seen brachial plexus specialists in Australia please give me a yell!

Cheers

Lacey - 27yo - ROBPI

Lacey, for the back pain you might try a therapist or good friend even who will massage your back. THat helped me out a lot before my last surgery.
Good luck getting a consult!!!
Amy 20 years old ROBPI from MN

Great advice here, especially from Kath who spent years nagging me about overuse which I chose to ignore She was of course right. I find it interesting that John hasn't got significant overuse in his unaffected arm and wonder if that's because women tend to have that period of life when they are hauling babies/toddlers around (CAR SEATS! Those things nearly defeated me, who until than had adapted to everything. I found it easier to use the pushchair and walk-once I'd got the mailman or some passing stranger to put the bloomin thing up for me!) In fact my last baby spent a lot of time on the floor because I was 40 when I had her and just couldn't do it any more. She was fine!

Like Kath said, it's fine to get other people to do stuff for you, it's easy to get too independent. That's hard for us with bpi because we are so used to doing it all ourselves, and aren't we just wonderful? I don't lift heavy stuff any more, even though my good arm is immensely strong through being the only one used, that won't save the joints from overuse. I thought tbpi would not get this as we don't grow up compensating, but I'm afraid we are not immune and I have muscle wastage on my back and leg on the bpi side, a bend in my spine and a dragging foot, check the soles of your shoes and see the different wear patterns!

I think there may be some Aussie doctors who specialise in bpi, I have bpi friends in Aus, check the medical information link on the home page.
Take care all and don't be like me-listen to Kath.
Jen NZ

ps-when I say we are just wonderful, I'm not being sarcastic-I mean it. We are all fantastic