Traumatic Brachial Plexus Injuries…

…or more specifically, those with them or those who know someone with one.

I need your help!

I’ve picked STW’s mind a couple of times in the past, and I’ve learnt that there are a few sufferers on here, so it’s these people I’m seeking out, also carers and medical professionals as long as you have experience with TBPI’s.

I’m part of a committee that are trying to identify what research needs doing (as there is very little) so that we can improve on the assessment, diagnosis, treatment and care/support of people with TBPI’s.

We have designed a simple, short questionnaire, so we can hear directly from those affected.
It doesn’t matter if you are newly injured, or if you’ve been living with it for most of your life, we just need your input.

This is the link to the questionnaire (google form).

The survey is now live and will run until the end of May, we’ve spent a lot of time and effort getting it this far and could really use as many results as possible, so if anyone can help spread the word then please do.

I hope this doesn’t go against any forum rules, if it does, please let me know and I’ll try a different tack.
From someone who has lived with a TBPI for many years, this could be the start of making a big difference, so thanks in advance for any assistance.

-Phill-

Just a little nudge to keep this active.

…and for the people not interested in TBPI’s, here’s a photo of a couple of deer from one of this weekend walks:

Can you explain in non-medical terms what a TBPI is?

Basically smacking your shoulder up badly enough to cause issues with your hands. Not sure mine was severe, but needed my left shoulder decompressing as I was getting both shoulder pain, and pins and needles down my arm. Most of your arm’s nerves run through the shoulder, and if they get impinged it causes all sorts of issues in your arm and hand. The decompression went OK (in with a drill and shave bits off the bones) – just took 18 months to stop being painful.

Fossy’s explanation is pretty good, the brachial plexus is the name for the nerves that run from your spine to your upper limb, so all the movement and feeling from your shoulder to your fingertips is controlled by those nerves.

You’ll get different symptoms depending on which branch/nerve is injured, and also depending on the severity of the injury.

The worst kind is where the arm/shoulder is pulled violently away from the neck and this unplugs the nerves from the spinal column, this results in total loss of feeling and movement to the whole limb, and no surgery can currently restore this, I’m pretty sure this was the level of injury that Tom Wheeler ended up with 🙁

Milder versions like Fossy’s is where a nerve is pinched or stretched, and it might not need any intervention for a full (but timely) recovery.

I broke my collar bone and the fractured end went through a nerve, resulting in almost complete loss of arm function, I’ve had some pretty amazing surgeries and regained some use.

Most TBPI’s are caused by motorbike accidents, so a lot of bike riders move to cycling where they still get a buzz but with a little less danger.

Often with this injury comes phantom nerve pains, and normally this is the thing that holds people back from moving on with their lives.

Morning all, just keeping this fresh.

Survey link.

Just checking in again, I know it’s not relevant to the majority of people here, but I’m desperate to reach the few out there that can have an impact on future research.

Please pass it on to anyone you know with this injury, the survey is open till the end of May.

Thanks again,

Phill

Put a link onto my Facebook feed, good luck.

Phil,

I’ve completed the form a few weeks ago.

Thanks there is definitely not enough research done into this terrible injury.

We are a very select few, members of the worst club in the world.

I’ve shared on a FB group hoping for more responses.

Thanks guys, I REALLY appreciate it.
We’re half way through the allotted timeframe for the survey and only had just over 40 responses, we were aiming for 100-200 at least, to make the next stage worth while.
We’ve canvased hospitals, para-sport bodies, military charities and everything in between but are just struggling with an uptake!
So every little bit really does help.
Again thanks oldnick and doublezero (and any others that have completed the survey but wish to remain anonymous).

Thanks for the message Sprootlet, we have clinical partners from the main nerve centres in the UK on the steering group, so that has given us direct access to London (RNOH), Birmingham, Leeds and Glasgow hospitals, so word is definitely getting out there, maybe people just don’t like doing surveys?