I'd like to share my brachial plexus story with you.
I guess mine started in a similar way to many others, in that “if only I could just take back that moment when everything went sideways so fast”!
I was playing in a local park in Surrey with my children. They were climbing the various climbing frames. One had some scramble netting on it for the kids to climb up and down.
I didn't see it and in a split second, I tripped and fell on it. I put out my arm to break the fall. My hand and forearm went through the netting but my elbow didn't. I landed full body weight on my elbow and…boom…one perfectly dislocated right shoulder...
Now, I'm no stranger to dislocating. In fact, that sunny afternoon became the third time is dislocated that shoulder. The first two times had been in my teenage years, playing rugby. But that was thirty years ago and now, in my forties, I remembered just how much it bloody hurt. This time, however, it was very different. The feeling and sensation was slowly going from my arm as I lay there waiting for the ambulance to arrive. By the time I got to A&E, my arm and hand were completely numb (zero feeling) and completely paralysed. I had no control over this limb in front of me.
The hospital patched me up but The pain was quickly becoming unbearable with freezing and burning pains all down my arm. In addition, I had the muscle pain from the trauma and phantom limb pain. I could see my arm in front of me but it felt like it was in a completely different and painful position.
I got referred to a consultant, who referred me again, to a specialist neurosurgeon by the name of Dr Marco Sinisi in London. A world authority on peripheral nerve damage injuries and who had studied trained at the Royal National Orthopaedic Hospital under one of the world’s leading specialist who developed peripheral nerve damage treatment as it is today.
I had an MRI scan and he did a physical exam and concluded that the brachial plexus nerves could be compressed by a bloody clot or stretched/damaged, causing the pain and paralysis.
Dr Sinisi explained that time was of the essence and that the longer I left it, the increase in chance I had for long term nerve damage.
Within a week, I was scheduled for an operation to repair the nerve. The operation was a success but the gravity of my injury was explained afterwards. If I'd had 1/2mm more of nerve damage, I'd of permanently lost the use of my arm. I was lucky. But it didn't feel like it. I was in shock for a few weeks afterwards.
The prognosis was, lets describe it as, optimistic, given the damage. Dr Sinisi said, with extensive rehabilitation over 2-3 years (did he say years!?) I could look to have about 60% of my arm and hand function return. Again, I was shocked at the extent and impact one silly fall had had.
The psychological impact of this injury was massive and cannot be underestimated. I was a happy go lucky guy but I had been thrown into a very dark place. They say that your mental wellbeing is a significant contributor to your overall recovery process.
So, surgery over, I had some minor movement return, almost instantly. But, the pain was still unbearable. I was referred to a pain management specialist and given a number of drugs, including oxycodone (for the physical pain) and gabapentin (for the nerve pain). There was a trade off, though, with these medicines. Whilst the pain was reduced to a manageable level, I was completely zonked out, sleeping 12-15 hours a day and became emotionally volatile. I also couldn't drive on the medication and had to inform the DVLA as the injury was one that is listed for compulsory notification. Failure to do so could have resulted in a fine or my licence being suspended.
I also struggled to keep my job, but for having an extremely understanding and supportive boss.
Next thing I had to do was find a neurological physiotherapist local to me in Surrey. These people are like “hen’s teeth” but critical to the successful rehabilitation process.
Luckily, I found one who’d had extensive experience working at Headley Court (the National Defence armed forces rehabilitation centre) with wounded servicemen and woman returning from service with life changing injuries.
Her experience was golden to me and proved defining, along with Dr Sinisi’s work.
So weekly Physio followed for over a year.
Dial forward 18 months.
I recently had a check up with Dr Sinisi. He was very pleased with progress. So much so that he saw no reason why I should not see a 90-95% return of normal function for my arm and hand.
This has been a long road to recovery with significant impact no only to myself but even more so for my family. I am fortunate to have a strong and supportive wife. My young children were also impacted by the changes and volatility, too. Things are now settling down.
I've just finished my final Physio session this week. The fine motor movements in my hand and strength are now starting to return. I'm still on low levels of pain management drugs but this is more to manage quality of life at this stage, rather than significant pain.
Feeling is also returning to my hand and fingers, too, although this will take more time to recover. But, overall, I've been very fortunate to have surrounded myself with an excellent team and support from family, GP as well as Dr Sinisi and the neuro physiotherapist.
I wanted to share this story to give hope and A light at the end of the tunnel to anyone who’s just been impacted by this awful injury.
My only advice, having come out the other side of this, would be:
1. Get the injury diagnosed as quickly as possible. Time impacts long term recovery
2. Find an expert neurosurgeon who knows the brachial plexus injury. I'd recommend Dr Sinisi, purely from personal experience.
3. Manage your pain. Life is rubbish and your mental state will not be good just grinning and bearing it. This is no moment for paracetamol.
4. Find the most experienced neurological physiotherapist you can afford. This will be the difference in getting back the maximum recovery from your injury. Treat it as an investment in your future. Don't scrimp on this.
I hope people find this story helpful and supportive.