1. Will my arm ever get better?
2. Will I be able to work for a living?
3. Will members of the opposite sex be turned off by the arm?
4. Will the pain ever stop?
5. I'm alive, I survived an horrific accident,why do I feel like throwing myself under a bus or, at least, staying indoors feeling sorry for myself?
All these questions have been posted on the messageboards by various people over the years and are, probably, the five most common questions asked, aside from specific medical questions which are best answered by the medical professionals due to the complex nature and varying degrees of a BPI. Having said that, if you have been advised by your specialist about a specific treatment, feel free to seek the views of people who may have already experienced such a treatment - they will be able to provide help and advice regarding their own results from a patients perspective.
The answers to the five questions are all taken from the messageboards and were posted by TBPI Group members rather than medical experts. There are no definitive answeres to these questions but we have tried to present a broad range of answers to each of them. If you have any other questions you would like to ask, or indeed the same questions again, then please use the messageboards where there are plenty of people with prior experience happy to answer any query that you may have.The message board on this site is a valuable and fluid source of information about living with a Brachial Plexus Injury provided by the injured people themselves. As new messages are posted, others get pushed further down, and information that could be useful for someone new to this injury is harder to find which can be disheartening for newly injured people who want to ask but don't feel comfortable with the messageboard environment at first. Everyone should feel free to participate and post because no question relevant to these injuries will be seen as trivial or pointless.
Included withIn the following articles are extracts from messages from people with a BPI. The original messages are already 'out there' in the public domain, and we are grateful to the people concerned who have participated in this endeavor. We have to point out that NONE of the contributors or authors of these articles are medically trained or qualified in any way. We cannot stress enough the importance of consulting with a clinician who is experienced in treating these very complicated injuries, as soon after injury as possible.
1. Will my arm ever get better?
"In my case, no, but I found I could handle it. Took a long time for that to sink in, though......"
'My arm didn't get better, although I had intercostal nerve grafts to regain elbow movement. I got over the loss pretty quickly, a matter of weeks. It doesn't bother me now."
"No, it (mine) won't, but it doesn't bother me in the slightest."
"I don't know, I haven't seen it lately....i.e. no."
"It could, everyone is different. I had surgery and mine has gotten significantly better, although it's a long way from where it was before the accident."
"No, is the short answer for me, the total bpi I suffered as most of us now know generally means the arm's had it. It's not easy to ask medical staff questions when you're traumatised and if you were young, as I was when it happened, you may feel total belief and trust in anything you are told......I lived in false hope of a recovery for many years which in hindsight.....meant that I refused to come to terms with my injury and move on....this was a bad thing for me. "
"I had one nerve intact...I had a repair job on one other nerve and it gave me full bicep control back....more useful than it sounds, I can bear hug a 22' computer monitor or a car wheel........I had a tendon transfer to give me better grip but that wasn't as successful....now I ride a motorbike again, climb mountains and build rockets...I'm doing more than I used to. "
"My injury probably isn't as bad as some and worse than others....the muscles that have improved all work with gravity, my arm just hangs there pointing to a spot by my right shoe, fine if there's a pound coin on the floor next to me, otherwise, not.....you do learn to adapt, but it doesn't help if you dwell on how much easier things were with two arms"
"Arm in my case never got better, had it chopped off. Best thing I ever did, but that was MY story, everyones circumstances vary enormously."
"Yes, I've been told I will 65-75% back, my injury is still only 10 months old so my arm is getting better as the months go on."
2. Will I be able to work for a living?
Any Brachial Plexus Injury, even a very mild one will affect your employment at the time of your injury, particularly if you are employed in an occupation that needs both hands and arms. Obviously, the severity of the injury plays an important part in future employment choices, but as you can see from the responses to this question below, having a BPI need not be an obstacle to finding gainful employment.
"Depends on what job you want to do. I worked in an office so I was physically capable of doing it. My biggest worry was facing clients..would the arm put them off? This turned out not to be an issue, they either don't notice or ask polite questions...I've had several interviews post injury, all of them saw my recovery as a positive aspect of my abilities and I was offered all the jobs I was interviewed for. "
" Yes, I'm currently working as a software developer."
"...I was a roofer, couldn't do that anymore. Went back to school (had no qualifications other than my 25 yard swimming certificate) . Got a degree in computer stuff and now have a fairly well paid job writing computer programs."
" Yes, without a doubt, although I have a hard job throwing black refuse sacks in the back of a lorry, I was determined not to let it beat me (and the foreman) I NEVER GAVE UP. "
" Well, I never went back to my job as a tailor and I couldn't even take up a post training other people, but later on a taught myself how to make jewellery from beads. Using some of the tools and other bits taken off the Stanmore flail arm splint helps me to do this."
3. Will members of the opposite sex be turned off by the arm?
" No, in fact most of them didn't even notice. They were more interested in other bits of me. When I pointed it out, they were interested but not put off."
"This has never been an issue. Most blokes didn't/don't notice or are/were completely not interested ; my arm has never had anything to do with my attractiveness (or not) to blokes, probably because as I am mostly unaware of it, other people are too."
"No. It makes for some interesting chat up lines. 'Could you help me with this, Miss?' "
"No, my wife doesn't seem to mind."
"Being a single guy with a tbpi has its disadvantages. That wonky arm can scare potential girlfriends/wives etc. I don't care what anyone says, people judge by appearance. So the old "I was never judged/appraised by my arm" doesn't apply in the real world. The flip side is we can turn this initial aversion into a positive thing. Just me being me tends to break the ice with peeps...in my experience most peeps get over the arm thing pretty quickly. It's more about your character than your arm."
"I'm the first to admit I was quite antsy about being in public when I first banged up the arm. I really did feel like a crip. But as time passed, I realised I hadn't changed at all inside. Thankfully all that negative stuff has worn off. 'I am I am" said Sam, "I am."
"Before my accident, I didn't pull much anyway, mainly through lack of confidence (or trying too hard!) and I thought my injuries would make it even more difficult, if not impossible. ...but...the only thing that stopped me having relationships for a long time was me. I've had a number of partners over the years and the arm has never been an issue. It's an old cliche, but true, this accident did make me a better person (most of the time!), and the women (the good ones anyway) are more interested in "you" and the way you treat them, not the body you have. I met my partner after the accident (who is stunning by the way!) and she's always been there for me and doesn't give a crap about the arm. She was totally behind my decision to get rid of my arm...the only thing she considered important....is that my health would be improved. "
"I really worried about having kids, would I be able to do things other fathers do? We now have a wonderful little boy. Nothing to do with my injury really seems to cause that many problems."
"Never been an issue for the right people I want to be with. I still get dates!"
"Blokes getting turned off? I hope so! Women, not really, have had a couple of really hurtful knockbacks in the past, but you get them with 2 arms, 'You purulent, spotty, knock kneed, nose picking, bog-ugly, smelly git....' (see, no arm references there at all) but have been married twice and had more than a few girlfriends...if they don't appreciate you as a person, they're either immature, ignorant or not worth bloody bothering with.."
"Well, I'm getting more ladies now than I was before my accident, so I guess not. Never had any complaints, anyway."
4. Will the pain ever stop?
The subjective nature of all types of pain makes it extremely difficult to quantify and describe and this is particularly true about neuropathic pain caused by a Trauma Brachial Plexus Injury. No-one feels pain the same way or at the same level; there is no single accepted pain experience. It also should not be forgotten that pain is a complex phenomenon that can be intensified by each individuals behavioural, environmental and emotional conditions. Equally, each individual way of managing pain can vary enormously, but since we have been researching this subject, certain drug free methods of pain management have been mentioned repeatedly.
These are; (in no particular order)
Each of these methods help enormously in the majority of cases. A more detailed explanation of these can be found in the article on Central Pain on this site. It is an old saying, but time is a great healer and most people with a BPI find that the pain levels reduce considerably over time, usually around 2/3 years.
"Yes, it will when all my nerves have healed properly. Well, that's what the Prof. says (Proffessor Birch). "
"..I still get lots and have tried and failed to get whisky on prescription..."
"The pain has got more manageable....it still feels like someone's squashed my hand into a breville toaster with the heat on...."
"I had severe pain constantly, like the majority at the start. Now I get very little, but when I do get it bad I can cope with it better. I believe the pain for me is as much my mental state at the time , stress etc. as it is physical. Learn to relax."
"Will the pain ever stop? Never met a bpi yet without it. The levels seem to vary from individual to individual. With most people it tends to get easier to handle and lessen with time. I remember not being able to hold a conversation with anyone for the first year or so without pulling funny faces and swearing a lot to myself. I personally found that the pills didn't stop it for me, and knocked them on the head after about 18 months."
" 9 years later, still in a lot of pain, it never stops. On bad days it's still really horrific, especially if I'm ill or run down. It still stops me sleeping and does affect my life up to a point.....but apparently, I'm one of a few percent of bpi's who get this severity of pain, so I've been told."
"In my case, no, but it got a lot less and a lot more bearable."
"The short answer is no, probably not, but it doesn't rule my life. Most days, unless I think about it, or something makes me miserable or unhappy, it is never a problem."
"I don't know if our pain will ever stop. I think we all just get used to living with it, I don't think it's the case that it goes away..."
'No. But you will learn to live with it."
There are many websites on the internet about pain; one useful one is Pain Support It is for people experiencing all types of pain but some of the drug free alternatives to pain management described on there are very useful.
5. I'm alive, I survived an horrific accident, why do I feel like throwing myself under a bus-or at least like staying indoors feeling sorry for myself?
"At the start I was a bit like this, at the start I just couldn't stop thinking about 'What if....?" but it happened and I just have to get on with it....every now and then the feeling comes back, due to maybe trying to do something you could do easily before...I haven't run in 10 months, I have no muscle in my shoulder and it gets subluxed and very sore when I try to run..but as they say "Life goes on" and I still think myself lucky and always will."
"I've nearly been there (suicide) too close for comfort...afterwards realised what a God-awful selfish b****rd of a thing to do to all those left behind who love and supported you through the hard times....it must have been awful for my poor folks, you never really appreciate what they go through, never mind you! One thing you should always do once you realise this and that's to tell them how much you appreciated (too small a word for such a big thing) their love and support...trust me, it gets real emotional...but it heals a lot of hurts inside...times like that make you realise what precious things life, love and people are."
" I had psychiatric support following my injury, it lasted longer than I expected but wasn't crippling. I never felt suicidal or depressed enough to stay in. I found going out and exploring the issues far more therapeutic. Maybe I'm lucky I was strong willed, but there's no shame in admitting you're depressed, I was and I did something about it early on."
" ...the jump under the bus syndrome....I think more newbies experience that than we'd like to admit...I prolly would have jumped if I'd not found some sort of support early on. In my experience the medical community totally ignores your mental state. You're expected to deal with it...on your own. They totally miss the point..we aren't just a lump of flesh to be hacked on to "see if we can get the arm working". It's mind and body that heal, not just one or the other. The kicker is, a new injured person DESPERATELY wants the arm as good as new, so you just do what the surgeons tell you, sometimes it works, sometimes it doesn't."
"...the problem with depression is you don't really understand you're depressed....you realise you were depressed after the fact. Having a bpi can make you focus on all the negative aspects of your life....I met some really great people on internet forums early on and it made a huge difference in my recovery and more importantly my attitude...I learned it's more important to focus on what you CAN do rather than what you can't..the further I get along with this thing the more I learn I can do almost anything a normal peep can do and sometimes even better."
"Feel like jumping under a bus? Too bloody right, after my accident and when my numerous physical injuries were sorted...4/5 months later I think, I was returned to the real world, in my case, no family really, no job and 34 pound a week DSS money. The support I received was not very good and the chip I had on my shoulder was so big I didn't want any help anyway. Depression is a horrible thing, I didn't even know I had it until I'd sunk so low I didn't think I could go any lower. How did I get over it? Interaction with others really helped, as did getting back into life, persevering with things that got me down until I cracked them. I slowly realised that I wasn't a useless one armer....I started getting better at doing things, better sometimes than many of my 2 armed friends.....determination got me through...I'm glad it did, now I'm not thinking about what I lost when I was 20 years old, I'm thinking about what I've gained since my injury, and how glad I am I didn't jump under that bus!"
"....during my days of dark depression I never thought life would be worth living again...I know this must sound a bit bleak, but I can't be the only one out there that did not deal well with it all. I've sunk really low over the years, and if someone had told me I'd get over it, I'd have told them to f#*k off. It took nearly 5 years to realise I had severe Post Traumatic Stress Disorder...I was hit head on by a guy on the wrong side of the road who lied and said it was my fault....2 court cases and 7 years later the truth came out and I was vindicated in the Royal Court of Appeal...I felt better for getting some closure on it all....if the case hadn't gone my way? I still think that time helps us get over anything."
"I came extremely close to dying. Every day is precious."
"Me too alive. Life became and still is a challenge every day. I wouldn't have many brilliant/crumby experiences if this hadn't happened, which I believe makes for some serious character building and some seriously interesting stories to tell friends and family."
"..for the record, I got over the bpi related depression pretty quick..I now think it's helped make me who I am....but for a while there I was a basket case....it's a pity the docs don't focus more on the practicalities as well as the medical stuff, I think they do make an effort in that at Stanmore and probably elsewhere, but the fact is, NOONE knows what it's really like unless they have a bpi, even professionals or carers who see bpi every day."
"I'm alive and well, I feel so priveliged to be alive after the block of ice hit me like an express train and left me dangling off a rope unconscious 150 feet off the ground. But I do have to say at first I could have thrown myself under a bus as I was really depressed, but with the help from my family and friends (especially my wife and son) I turned a corner and saw the light. "
"This is honest, I have never, at any time, felt like this. I can empathise with these feelings, and understand where they come from, but for me, I truly do feel so lucky to still be alive, I celebrate that every day, just in small ways. Nine years on, I look back and see how many doors opened for me and how the whole thing has made me a far better person than I was. The only thing that ever got me down, was answering, 20 times a day, the question, "What's happened to your arm??" This is one of the reasons I gave up wearing a sling early on. "
"Possibly it's Post Traumatic Stress disorder or something similar, get help, be aware it might happen, ask for support."
MANY thanks to all who made this series of articles possible. If anyone would like any further information about the 5 questions asked and the replies, please post a message on the boards.