United Brachial Plexus Network, Inc.

Hey there.
I was just wondering what treatment i could have now to help improve my arm. I have never seen a doctor about my arm in my 16 years of live therefore nothing has been done to help it even though i can do somethings with it simply through dancing and doin day to day excercises.
I read a lot of posts about Physical and Occupational Therapy. My mum is an Occupational Therapist but she works with the elderly. So what do these ppl do to help our arms? At this point in my life i dont think i would undergo surgery becos i feel i can live the rest of my life with my arm like it is but i could like it to be a little straighter because right now, with it force, it sits natruallys at just about 45degrees angle.
If i could get therapy to help this i would definately the only thing is i really dont know where 2 go. I am from the UK and because the UK is smaller than America there is probably more places that have doctors that treat Erbs Palsy. But i had a problem with my arm once...it kept goin numb and i couldnt feel it for hours and when i went to my local doctor they really didnt know wot to do. I have also been to Casulty with it when i fell on it at dancin and hurt it bad and they really didnt know wot to do or refer me to. So i kinda gave up but now i am just wondering if anyone could tell me treatment that would help it.
Im from Scotland so i guess resources will be fewer but I would be able to travel to england to see someone.
Oh and another question. see therapy in water...wot kinda things do you do? and wot is mod quad?? sorry i really am clueless about treatment for erbs!
Thanx all.

Michelle -x-

Hi Michele

I was clueless for over 60 years... the year I turned 60 I found this message board so I know how you feel...

I have learned so much just by reading posts and the Awareness material. My arm is bent also but not as much as yours ... Contracture's in my elbow seem to cause that... I go for Physicial Therapy now because my arm was becoming worse... also my left "good" arm was in so much pain... that is from overuse... we compensate by using it for everything... OT could help you to use your body better... Massage therapy is great... and Aqua therapy is done in a pool above 90 degrees F... The water has to be warm to get a good stretch in your arm... You should be doing regular exercise stretching on the erb's arm to keep it moving and for good circulation... but yesterday I realized that the helping "good" arm get tight because it is restricted to the shorter arm... in other words when we use two hands to pick up something our good arm is always bent to make up for the length difference... so now I have changed my thinking and realize that both arms should be exercised...
We here in America even though we are so big have also had problems finding doctors who ever treated anyone with Erb's Palsy... they never knew what to do with me either...

Look at the post on A R T therapy... and go to the links it will explain some of the things people are using to help keep our arms straight...

Hope this helps... and so glad that you ask questions..
When someone places a question on the board lots of people read and get good information from each other.
There are very few experts on Erb's Palsy and there is to my knowledge no long range study, that would provide a good insight on the care necessary to keep our arms in good healthy shape...

Kath

Hi Michelle
I was interested in reading your post about treatments and help available for you now you are 16.
The role of the occupational therapist for people with bpi is quite varied. They can be very helpful at getting splints made to help deal with contractures, such as the one you describe in your elbow. Many children and young adults within the Uk have splints made and they are very helpful -usually worn at night to help straighten the affected muscles out.
Also the OT can help with preventative measures, to try and educate you how to best tackle activities so that you don't place undue strain on your unaffected arm, or suffer from things like repetitive strain syndrome. They are also able to advise on small aids for around the house, to help with independent living tasks.
The role of the physiotherapist is to show you how to best exercise your affected arm to avoid getting too many muscle contractures such as the one in your elbow.
And sometimes they can be helpful with suggesting therapies such as ultrasound or acupuncture therapy at times when you are suffering pain, such as when you fell at dancing.
There are about 5 specialists in the UK who deal with bpi - I think I sent your their details when I wrote to you. One of them - Professor Rolf Birch actually holds a clinic in Scotland about 4 times a year where he sees many of his patients who live in Scotland to avoid them having to travel to London to see him.
I do think it would be worth you while to get a referral to see him, it would give you an opportunity to learn more about your condition. It may well be that at 16 there is very little that a surgeon could do to help you, but of course, it's always worth getting an opinion from someone who specialises in the condition, such as Prof Birch.
A mod quad is a surgical procedure which lengthens and moves some of the muscles in the arm and the shoulder to maximise their potential. In the Uk it is usually referred to as a muscle or tendon transfer/ release operation.
The therapy in water is really aimed at younger children, in my experience the therapist performs a series of exercises with the child in the water which means that the child doesn't always realise how hard they are working the muscles in their arm. At your age, you would be more likely to be given a set of exercises and told to swim and exercise as much as you could to help strengthen the weaker muscles in your arm.
If you would like me to send you the details of the surgeons I mentioned, do let me know. Your GP should be able to refer you to an occupational therpaist and also a physiotherapist who should be able to help.
You can e mail me on erbspalsygroup@supanet.com
bye for now
Karen