Right shoulder area injury, nerves damaged, chronic pain and much more. Please help me!

2016.11.24 UPDATE: PLEASE do not donate anything until further notice and do not donate without reading the update section.

Note:

My situation is not a health problem with a household name like cancer which people easily recognizes or understands. I tried writing a short version of this but it just would not make sense so grab a coffee, get comfortable and let’s get right into the train wreck.

Summary: I got hurt and I need scans to see what snapped in my back, to see what is actually ruining my life and what if anything can be done about it.

Shortest long version: Work in progress.

While recovering from appendectomy surgery in November 2010 I pulled myself out of bed and something snapped in my right shoulder/back. I was still drugged out from painkillers and didn't initially realize it was actually serious or that something actually got hurt. I had no idea it would continue to ruin my life (which was already quite pear shaped). It wasn't overly painful at first, mostly just a sensation of a warm liquid spreading in my back.

Things escalated quickly: Whatever got injured rapidly developed into an intense excruciating pain that was impervious to the painkillers I was taking for surgical wounds. My whole right arm from the tip my hand to the bottom of my shoulder blade felt like it was in a furnace. It felt, and still feels, like someone planted a pick axe in my back and is trying to leverage my shoulder blade out – just what you need for a good night sleep. Initially the most extreme pain was in my right hand which I would not be able to close for many months due to pain and swelling even though it was clearly not my hand that got injured – my right arm was incapacitated completely at that stage and could not even swing when I walked. The most severe pain I have ever felt in my life!

I don't go to hospitals at the drop of a hat but I couldn't take it anymore and I was back at the ER within a month of my surgery after enduring the torture for some days – I was hopping around with pain which made kidney stones feel like a hit of morphine in comparison. Auckland Central Hospital (ACH) turned me away and told me to see a physio... something I look back on with warm feelings of malice. ACH, physiotherapists and others would/could not help me but I ended up on a neurology waiting list many months long. I was 22 and had no idea how the medical system “works” or how ACC worked, I didn't really know what else to do and I was left here without a support structure.

Meanwhile, while waiting for neurology, a physiotherapist misdiagnosed it as rotator cuff sprain (loading ACC problems...) – he also did not know what exactly it was but could see something is very wrong and probably picked the closest thing he could think of so he could actually try and help me while I wait for neurology.

Eventually I saw a Neurologist after months of pure distilled torture. I told her what happened and she briefly looked at me and told me it was Brachial Neuritis (you are going to have to look it up for things to make some sense) and that there is nothing that can be done, it will get better and go away by itself over time and there is NO need for further tests or scans. Upon hearing that, I didn't want to waste my time getting scans or nerve conduction tests if it was totally pointless and I would get better, I trusted her and I was just happy someone finally helped me. I believed her diagnosis for a long time because it seemed to line up with what I read on Brachial Neuritis. More on this later.

I finished my low intensity (Typing, navigating mouse) 9 month IT course (got injured 1-2 months in) with my left hand and did very well – it seems like a great victory but it isn't. I didn't have any support structure or family to help me and I proceeded to try and get a job with this injury – not working didn't seem like an option and things did get a bit better and I believed the neurologist all would be well. I should never have tried working with this, that is quite a complicated disaster to explain: high intensity computer use hurt my left wrist from overuse and developed a painful cyst (I was forced to switch the mouse back and forth between my left and right hand as each arms' injuries became unbearable) – another ACC nightmare I am dealing with now. I picked up other injuries, worked myself into hospital numerous times, loads of time away from work, psychological breakdowns and crisis centers – turns out being forced to work with serious injuries is not good for you... I went back over and over and over and over again. I was mortally afraid of losing my job because I knew I would not be able to do other jobs with my injuries and it destroyed me physically and mentally, but thank God that finally ended 14th May 2015. The fact that I persisted so long is actually a problem on MANY fronts and is probably the main reason I have not recovered apart from the medical systems negligence and bad advice – I NEVER stopped since I got injured and now I am wrecked. I cannot hurt myself anymore and have injuries affecting both my arms now. The fact that I persisted so long was very destructive and also creates the perception that my injuries are not that bad.

Eventually I saw a musculoskeletal specialist in 2015 for something else and he happened to look at my right shoulder/back injury and things started moving again. More disaster! Nerve conduction studies indicate issues with C7 nerves. They start scanning in areas I tell them nothing is wrong and the MRI comes back clean – big surprise... Meanwhile ACC sees nothing is found in the MRI and cherry picks the Rotator Cuff sprain misdiagnosis as a reason to cancel my ACC support before I could get them to eventually scan the area of concern. I actually emailed the specialist, before receiving word that ACC canceled support, telling him I want to do a fundraiser and get the scans done (where I indicate) because ACC was slowing things down and it was making me more miserable. I cannot raise funds for MRI's yet because it costs around $300 just to visit a specialist for a referral to get quotes from Radiology – I was going to use ACC for the specialist visit to get quotes but things got cut short. Let’s start with a thorough ultrasound at $280 and move forward from there.

There isn't much point appealing ACC's decision without getting scans and a specialist to diagnose what exactly got damaged. So I am stuck with a catch 22 of needing ACC to get scans and needing scans to get back ACC coverage for treatment/tests. I just want to clarify that I have not and never will get loss of income because I got injured before I could start working. Other injuries should get loss of income but there were problems with them too and they are highly unlikely to get accepted – fun times. But I just want to see what is ruining my life and what can possibly be done about it.

It is so frustrating writing this, I read and re-read over and over and I just cannot paint a clear picture without writing a book – it does my situation a great injustice. I feel overwhelmed! This will have to remain a work in progress as I try to get everything in focus and figure out how to structure it better and bring in other relevant/important details.

Let’s try and cut this short now before I claw out my own eyeballs from frustration. Everyone seems to ignore the fact that something (soft tissue) snapped in my back and they get stuck on Brachial Neuritis or Thoracic Outlet Syndrome or Chronic Pain which is all probably set on by the injury. How is that possible that you can get injured and people diagnose you without any scans or tests and advise you that they are not needed? Or they get stuck on one part of the injury and look no further and just throw you in a chronic pain clinic without scans or proper investigation? Remember, at first I believed the Neurologists diagnosis covered it all and that is was created such a LONG delay in trying to get scans. Bear in mind that Brachial Neuritis is something that can take a LONG time to recover so suffering was what I expected.

As you can imagine this is all rather depressing and we are only beginning to scratch the surface.

Current plan of action:

First: I want to get a proper ultrasound of my Right rotator and scapular region to hopefully narrow things down for an MRI.

Second: Get MRI or something more powerful like a PET scan – I'll figure it out after the ultrasound.

Third: Treatment if applicable – if stage 1 & 2 are successful, and yield new info including a diagnosis of what is wrecked, ACC can be appealed so I won't need to raise funds for treatment if it can be treated. My personal experience with ACC makes me most skeptical that appeal would be a successful venture.

Fourth: Financial support – I'll figure this out later but DON'T donate for that just yet as it probably won't change a thing and would be better used elsewhere in the meantime: continue reading to understand.

Before you donate: What to expect at this stage.

There is a chance that the ultrasound and later MRI will show nothing, or the specialists wont catch anything (ideally I would have at least 2 specialists thoroughly investigate the scans), and that it is just chronic pain and/or nerve damage or whatever else. The scans will hopefully give me an indication as to what else got hurt and from there we can figure out if something can be done and if it is worth the risk (surgery). I personally feel confident that something will be found – my scapula feels and sounds like a serrated steak knife.

I'll figure out what to do about my financial situation later – don't worry about that for now. If you collectively give thousands of dollars it will probably just be offset by WINZ cutting back my support and make no change in my life. I have been through so many doctors and because I look fine (and they don't read hundreds of pages of medical history and have no clue) getting medical certificates is depressing, difficult and humiliating. If they do cut me off I'll probably need your help more but lets deal with that as it comes. At this stage I just need help with the ultrasound at $280.

Before you donate: Reasons I did not want to do a fundraiser.

1. Like my privacy.

2. It is a difficult situation to explain – I don't even feel I did a half decent job attempting it here.

3. I don't like getting hen pecked with questions and suggestions – I am sick of living with this, never mind having to talk about it.

4. I find it a little embarrassing asking people for help.

5. Biggest reason of all as to why I did not want to do a fundraiser: I look TOTALLY normal and healthy on the surface. Yes, things have gotten better to a degree – I can close my right hand. In fact I can do most things, just not continuously – and the more I do the more it hurts me to the point where I am incapacitated physically and psychologically. I barely get anything done and have to lay down a lot – it is exhausting and hyper depressing. It is not that it hurts and that is it – it keeps escalating. Looking completely fine creates probably the biggest problems for me because it creates misconception and people come to incorrect conclusions and heck... I cannot really blame them. If you look fine you DO NOT get the help or support you need! I have nightmares about people hen pecking me and me trying to make them understand. Imagine donating to someone with injuries and then seeing them look totally normal... not a good look: is there a quicker way to tatally ruin your good name?

Closing

Thank you for your time in reading this. Any support will be very much appreciated whether it is financial, encouragement, prayer, sharing my cause with others or whatever else you can think of.

Cheers.

Martin.