United Brachial Plexus Network, Inc.

Hi

I have just found this site and first can I say how relieved I am to be able to read some stuff about my injury, as I have not been able to find a great deal about it elsewhere.

I am really after some advice following my accident, which as I am sure everyone will understand has left me very, very low. I notice that many here know all of the proper medical terms and definitions – I don’t, in fact, I have only just heard of brachial plexus, anyway if anyone is good enough to reply, perhaps they could remember my medical ignorance!

7 weeks ago, I was knocked of my bicycle in central London. I dislocated my non-dominant LH shoulder, which was reduced within a couple of hours. At the hospital, I realised that I could barely move my fingers – maybe a millimetre or two but that was it. As my arm was in a sling, I did not notice any other loss of movement at the time.

As I started healing and the swelling reduced and the cuts and grazes started to mend, I was alarmed at the extent of the loss of movement. I could not raise my wrist or extend my forearm, my triceps did not function at all and my forearm and hand were numb and very sensitive to cold. I went to A&E as I was convinced my wrist was broken. I had x-rays and was told by an orthopaedic doctor that I had damaged some nerves. He made an appointment for a splint to be made and I was referred to a neurology specialist. My appointment is in 3 weeks and so 10 weeks after the accident.

At the moment, the numbness has reduced significantly and the sensitivity to cold has gone. I can clench my fist, partially fan my fingers and have an improved range of arm and shoulder movement although this is always accompanied with pain. I still have the wrist drop but can raise my wrist a bit if I support my forearm and rotate it by about 45 degrees. I have regained some arm / hand mobility but to all intents and purposes it is still non functional.

I am 49 years old and work as a self-employed heating contractor, which is extremely y heavy work. Since the accident, my income has reduced to zero as I am unable to work in any meaningful capacity. I am uncertain for my future and to be honest am terrified. I appreciate that many people experience worse injuries through no fault of their own and to some mine may seem trivial. For me though, it is the worst thing that has happened to me and has reduced me to the lowest ebb I have ever known. There seems to be a dearth of information about these injuries and more importantly the likely prognosis and recovery time.

I suppose I really need advice on what to expect, what I should be doing now to improve my chances of recovery and finally I need some reassurance that there is hope for the future.

Many thanks for any replies.

Mike

Hi Mike...

Sorry to hear of your accident and all that your going through.
Coping with any kind of loss and added stress of finances etc...can leave anyone feeling dispare. Knowing from how severe my injuries were and how I was going to carve a new life for myself was the most incredibly difficult time in my life. Anything since that time has been a walk in the park, so to speak.

In the early stages my prognosis was grave for life, then they improved to poor for any quality of life. I remember in spite of everything being thrown at me, I remained in a positive frame of mind. I recall thinking, I am alive!!! I must be here to do something important? I have been selected to stay here on this earth! Then I began asking, what I am here to do? I turned inward creating a shield to protect me from the world. In the beginning. The society seemed cruel, unaccepting, negative attitude,limiting for choices. The society I had known and function in well, no longer existed. I needed to break new ground. When someone said it wasn't possible, I made it possible, I found a way. If a Dr. said you will never walk again, use your arm, have cognitive abilities, live in an institution for the rest of my days...I said no way...
I went the opposite way...I chose to live a happy and full life on my terms. Along the way, sadly it helped to see others that were worse off than me, they inspired me to continue to carve this new path.I am grateful to them, for helping me.
In my moments of great pain or feelings of sadness...I let the tears flow. I give myself permission to feel this growth. For the tears helped build my shield stronger, the shield that would become the most important armour, to propel me forward into my new life.

Some thoughts I would like to share that helped me. Find the best Doctors and health care professionals. Lean on the social services financially for a while, until you know for sure what you will get back in terms of recovery. Do your own work on healing yourself from within. Clear out any baggage from your past, by reading self help books, meditation, prayer, talking to therapists. When something like this so huge happens in our lives and is bigger than us, it's imperative to talk to someone who can assist us through the darkness. We don't hesitate to go to the dentist when we need our tooth cared for, why should we hesitate to speak to therapists, when we have so much rattling around in our brains?? Just do it! Love that saying ...

Surround yourself with good and worthy people. Watch the prescription drugs, they can hook you fast and leave you in a bigger mess, than when you first started.
Be patient with your injury..but take good care of yourself, with nutrition, healthy thinking and living. Do your own physio it makes the world of difference.
In the end...love yourself for who you are and who you are not...
Recycle and transform this life change into a happy & healthy new life path...
You are changed from this event in your life, you must embrace a new way to live...looking back into your past on how you use to live, only adds more strif to your already delicate situation...challenge yourself and be patient...all things will heal in time and if they don't acceptance is the only answer.

Today,in my life I have 3 amazing teens 19,16,14 since my accident, I have raised them alone. Married 3X. Widowed 1X Divorced 2X. Dating once in a while. I am serving my Community as a Lay Pastor, by working in a Palliative Care Unit. I have a female 6 yr. old chocolate lab. A few close friends, a small family base. I consider myself blessed on the good and bad days.
Gratitude flows with me as often as I can think of it.
The blessings keep coming...my life is no longer my own...All that I am extends outward. I have surrendered to why I survived and what I love to give back, for all of my precious new gifts...and the rest of my life flows..Yes..new obstacles arrive sometimes daily..I take them one day at a time. Try to smile about it all...and Love every moment I have the privilege of being alive

Hope I have aided you in some way...I will keep you in my thoughts and prayers on this day...

With Peace, Love & Light,
Mardelle

Sorry to hear about your accident. I hate to say it but we've all been there. I think I can clarify a few things.
1) See a doctor/surgeon who specializes in brachial plexus injuries as a majority of doctors to not know how to deal with this type of nerve damage. I don't know about the uk. The mayo clinic in mn has one of the best bp teams in the world.
2) Typical tests they should do are an emg with a lumbar puncture. One is to test which nerves are affected and the other to test if any of the five nerve roots are pulled from the spine.
3) The types of injuries to the nerves are:
a) stretch: nerves are stretched
b) tear: nerves are torn
c) avulsion : the root of the nerve is torn from the spine. There are 5 nerve roots and you can pull just one or two or all of them, though I don't think that's the case with you.
d) encapsulation in scar tissue: the nerve is trapped in scar tissue
4) The main surgical option is a nerve transfer where they take a nerve from another part of your body and stick it in your arm. This must be done around 5 months from the accident to get the best results.
5) Spontaneous recovery can happen too. That's why the docs wait several months before operating as nerves grow a millimeter a month.
6) Therapy: it's important to keep that arm moving to work the muscles, to activate nerve growth/new muscle movement, and to keep flexibility. Your range of motion can shrink in a shockingly small amount and even the smallest movements can help "wake up" the dead parts. Even if you can't afford a regular therapist even one appt.can be enough to set you in the right direction.
I hope this has helped clear some of the air. It's all very overwhelming at first.


Ang

Mike,
Brachial Plexus injuries are so tricky. Did anyone tell you that you have one for sure? If it's only been seven weeks and your already getting back movement it does not sound that bad. One of my nerves was severed from the spinal cord and the rest were stretched. I had a severe injury. After six months nothing came back and they did transplants and grafting. Now I have some movement. You do not sound that bad so you'll probably do way better. Find out for sure what happened to your nerves when you see the Doctor in 3 weeks and then you can put together the big picture. As far as feeling down. I hear you. I am still depressed and its been 4 years. When I lost the use of my arm I lost my dreams,confidence,vanity. It is a constant struggle to not let being injured get you down. Probably not what you need to hear but I just wanted you to know that I feel your pain. Hang in there.

Dear Mike and Nay...
A major Neurological TBPI comes with so much the doctors don't even today completely understand.
Instead of the focus of what you lost...start looking at what you still have. Living in a pity party is no fun...been there done that. Find all the things about you that are great...and there must be at least one...create a sacred balance in your life and start to think positively, no matter what...If your glass is on the half empty side instead of the 1/2 full side you could run dry and hit bottom, on all levels.
Your not the first or the last to have this injury.
Rise above it and keep living...be determined to live with your life being the best it can be...and one day your goal for your life top be overflowing.
When I got sick of feeling sorry for myself...I wrote a Chronic Pain Management Program for a Pain Dr. at a hospital in Toronto, because he wanted to know how I was surviving without their drugs. So I did. I was asked to teach others with Chronic Pain how to manage theirs...helped 1 out of 25. But at least there was one that allowed themselves to step forward and give it a shot. That's all it takes...to me it offered a new kind of therapy...getting outside my own head and afflicted body and recycle it in a good way...one of 100's of things that help me today.

Stay Strong and Positive..

With Praise & Courage
Mardelle

Hi all

Many thanks for your replies. I have since discovered the UK board as suggested by Nay and am very relieved to hear that the UK seems to have its fair share of neurological expertise, especially in this area.

I am very aware of the fact that my injury is nowhere near as severe and serious as many others and so to put it into perspective I really ought to think myself lucky!

I'll post back after my appointment and in the meantime I wish everyone here all the best for the future.

Mike

Hello. Being my first post, and about something I live with, I feel a bit shy but you should hear from someone dealing with something similar, at least I think I might be.

I do not have a "flail arm". I had an axillary nerve avulsion that was combined with a complete dislocation of the humerus from the shoulder socket. It didn't help that I caught some of the glass from the sunroof in the bend of my elbow as the car rolled.

I can say after my surgeries that I firmly believe in stubbornness and aquatic therapy. Both make it possible for me to turn a door knob, peel onions and chop them too, and even dress--though I won't be wearing a bra any time soon, and I don't think you will either. I type with both hands and there's always some edema (lymphedema) in the upper portion of my left arm, but there are specific exercises that help deal with that and physical therapists (physios) that are certified in that area.

Sleep can be difficult but pillows of various sizes and shapes can be configured to help. Bio Oil--I used it for the scarring--is a great massage oil since you are bringing blood to the injured site and pushing the lymph around.

I'm 43, a geologist, and a whole lot tougher than expected. Don't believe you can't do anything until you've proved it, and even then, you will surprise yourself.

I hope you've seen some improvement and gained that new insight into just how much steel there really is in your spine. Good luck to you!


~ Sandy

Hi All

Just thought i would update this post as I noticed a reply.

It seems that we in the UK do have a number of excellent nerve specialists in a few of our larger cities. The specialist I saw in London was reasonably confident of a recovery as I had not suffered any avulsions, but had compressed my radial nerve in my shoulder and also suffered some serious sensory nerve damage from my elbow. Other, lesser sensory nerves managed to sort themselves out quite quickly.

I have not had any surgery, as I am sure that most of your appreciate, the first course of action for nerve damage is to do absolutely nothing and see what happens. I was offered a tendon relocation if my wrist failed to improve though.

So, at 7 months post accident I am in much better shape. My triceps have returned and my radial nerve has now regenerated enough to provide innervation to the top of my forearm which allows me to raise my wrist, although it is very, very weak. I have full ROM in my shoulder.

I am hopeful that I will recover intrinsic finger movement, but I suppose this is just a waiting game now. As far as I can make out I have another 12 months to go for full regeneration, assuming that scar tissue does not stop the process.

From what I have read on this and on the UK board, I am very, very lucky compared to many others.

I have not worked at all since the accident and am in Thailand at the moment. I will however start work again in 3 weeks when I return to the UK.

I regularly read this forum and my thoughts and commiserations are with all of you who suffer from this frightening condition.

Mike

P.S. Being male and of normal weight I have little use for bras, except for undoing them.