Just Another Day in Paradise!!

July 2014

I haven’t written for a while and you will soon see why, but my best wishes to everyone I have spoken to through these sites! I hope your fight (or that of your loved ones) is as strong as ever and as we creep toward a court date for the ASR here in Australia, and hopefully the same opportunity for the Birmingham and all other MOM patients, I can only wish everyone of you all of the strength, resilience and fortitude that we will all need to push through this and come out the other side.

A little later on I am going to write in more detail about what you will need to keep in mind moving forward as it has been mine (and many others experience) that sometimes in the rush to ‘sign up as many clients as possible’ that often some serious considerations and information are ‘missed’ or sadly sometimes not even given by the many law firms involved in litigation against Johnson & Johnson/DePuy or S&N or any other MOM manufacturer.

I received my new scan results (Bone Scan and CT Scannogram – sounds like some sort of a cartoon reference!) a few months ago and as usual it was good and bad news! Before I continue, I am not looking for pity, sympathy or anyone’s sorrow, I am angry, sick of being treated like an infectious disease that no-one wants to touch and probably need to vent, if anything I sincerely hope that by sharing things like this I hope that we can each draw strength from one another and learn/be aware of what to look for, this is my very real hope!

I just want to put into a very real perspective what I and thousands of us out there are going through as a result of MOM technology, regardless of who made it, but for the benefit of ASR ‘survivors’, and any of you from other manufacturers who will also hopefully get your day in court, here are the realities that I hope you don’t have to face, but sadly many of you will.

So, the good news first, my femur isn’t totally necrotic (read dead), just the bit that was cut off and re-attached as part of my Osteotomy and 3 subsequent surgeries and the rest of the Trochanteric region (top part of the femur), so at least we have something to work with there.

With good, sadly there is always bad, my leg length has dropped approx. 2.5 cm which I wasn’t too surprised about having been warned about this by my surgeon a few weeks ago, but the really bad ‘news’ was the significant loosening of my femoral stem and acetabular cup, now I know I am not the first to hear this news and sadly won’t be the last, but when it is the 5th time in 7 years, it does come as a shock or at least a terrible disappointment! My first thoughts this time were vastly different from the previous ones where I thought, “well, here we go again, I hope it works this time, they have to get it right eventually!”, this time I was filled with dread verging on terror, I have no optimistic outlook on the result and am actually terrified about agreeing to surgery!

This I haven’t worked out (and I would be glad for guidance from the more experienced, as I know that you are out there!) counterparts, I have never been a negative person, especially when it comes to medical things, my profession would never let me down like this, but that abject dread has me second guessing everything I have always believed in!! As I said, not looking for sympathy/pity, just trying to use my experiences and hopefully others to gain an understanding of why I feel like this.

This resulted in the removal of one of the 9 screws holding my femur together, my implant had ‘dropped’ down onto it and had bent it, so the theory became that this was what was causing my pain, however it didn’t explain the instability and ‘interesting’ noises coming from my hip, but we went with the surgery anyway.

So, a ‘short’ procedure mysteriously turned into a multi-hour affair, still haven’t gotten to the bottom of that yet, but had bigger issues to deal with, and the plan was that when the screw was removed, the implant would ‘stabilise’ (read stop slipping any further or moving around freely within my NOF), the pain would subside and I would regain instant stability in my hip.

The result within a week of surgery is that my hip has collapsed further into my femur, the pain is tremendously worse, resulting in even less sleep than I was getting before and of course even less stability in the joint itself. I must admit to a lack of surprise at this outcome, but it doesn’t do wonders for your confidence when this keeps on happening.

Funnily enough all of these developments with my hip coincided with J&J/DePuy deciding that they wanted to play ‘hardball’ with me in regard to their responsibility for my medical bills, support services and of course lost wages as I am 44 and definitely not retired!! According to ‘their patient consent form’ (the Australian version), which any of us who requested to be enrolled in just after the recall in 2010, had to sign, these were the exact things that they pointed out that they would be responsible for ‘until we were fixed’ (forgive me for being very sarcastic about the term ‘fixed’, because I am sick of hearing it referred to as a point of where we are at as patients, that we are either ‘fixed’ or we are not ‘fixed’, reminds me of a heard of cattle and how farmers define their bulls from their steers!).

With their latest email, they originally asked for me to see “an independent doctor of our choosing and at our cost, for a full independent medical assessment”, so I gave them my definition of independent, which reads as follows: “so I am sorry, but unless you can give me an incredibly “independent” Doctor (independent means has NEVER consulted for J&J/DePuy or their affiliated companies, has NEVER been provided research funding or participated in research/trial projects for J&J group of companies and very importantly has NEVER been paid/given ANY inducements, financial or otherwise, to use/demonstrate/promote or even comment on a product developed/marketed/produced by ANY company affiliated/owned by J&J) then I might consider it.”!

After I sent this they responded by no longer talking directly to me, but doing so through my lawyers and the best bit was that their request was exactly the same EXCEPT they removed the word ‘independent’!!!!! Now if that doesn’t scream “we have something to hide and need a favourable opinion”, I don’t know what does? The thing I want to warn you all about has occurred quite a lot of correspondence past this point, when they finally sent me 2 names of Orthopod’s for their ‘not independent medical assessment’ (even though we asked for a choice of 3, must have found it difficult to find another who was willing to put ‘the company ahead of the patients’), alarmingly, but not surprisingly one had been heavily involved in ‘promoting’ MOM technology when it was released! Surprisingly, one was actually at the other end of the spectrum, having never used a MOM device and has actually participated in research into the effects of metallosis, so obviously we chose him.

Sadly, for legal reasons, I can’t (at this point in time) discuss what happened when we visited the good doctor, however despite my abject dread and fear of being thrown ‘under the bus’ by this whole process (thank god for my amazing wife who kept the faith and strength for the 2 of us!!), we fronted up with about 40 scans and x-rays, medical reports, blood test results etc (as this was completely ‘independent’ we had to take everything along for the doctor whom we had never met, and who was supposed to know nothing of my case) as we said to him “we have brought everything as we have nothing to hide!”.

All I will say is that he was extremely professional, respectful, caring and anyone would be lucky to have him as their treating surgeon. The one thing I will say that surprised the hell out of me was the number of times that the term amputation came up throughout the conversation, this was the one thing that ensured that I took notice more sharply than I had previously been, and more than a few tears were shed!

Anyway, I am to get a copy of this report when complete (as is the legal requirement here in Australia), so I may be able to share more with you all when this has happened. This occurred on June 10, 2014.

However back to the current, I find out when they plan to ‘open me up’ in the coming weeks, and as I said, terrified about the prospect, I mean how many times can the same hip be replaced, I am looking at the 6th revision (replacement of a replacement) in a 4 year timeframe, thanks to the cobalt metallosis my bone is ‘disappearing’ not ‘re-generating’, fractures don’t heal (actually new ones magically appear without trauma, now also have the radiological proof of that one!!), my pain levels have progressively gotten worse each time I have had surgery, my mobility has never returned to even a safe level despite following to the letter all rehab instructions given (and seeking further advice from other specialists) and when the ‘experts’ I have talked to tell me “you are the only one (apparently we can’t be classified as patients anymore) who has had this type of extreme reaction, so we have no precedents to tell you about” (regardless of the fact that I have told them that I am aware of many others and all they would have to do is ask their colleagues in other states, territories or countries, or J&J/S&N themselves, not that they would ever admit it), I am not overly confident!

The one bit of ‘good’ news I can now add, is that the last time I visited my surgeon a week or so ago, he has now opened up 3 other people who have had constant/severe pain, at least one complete revision of a MOM hip, initial high cobalt/chromium readings, decreased or poor mobility and most importantly have had x-rays in particular that show an apparent ‘clean joint replacement with no obvious issues’. When he has opened them up, like me (and I have the photographic proof to prove it), the bone (femur in particular, but all around the hip/acetabulum area as well) was black (either necrotic or sludgy) and much of the tissue surrounding these bones was also equally affected.

My surgeon was actually weirdly happy, as he said up to this point he only had me as an example of what these ‘joints’ had caused, now he has others as well, because he said that it was too easy for others (read J&J/DePuy, S&N or any other MOM manufacturer) to explain that I was a ‘one-off’, so I would love to hear from any others who have had the same outcome as I have assured my surgeon that there are far more than just 4 of us out there!

Ultimately it will just be another string to our bows to fire back at these companies with when we get the chance! I will discuss with Earl if there is some way that we can get a register together of people in this boat, not just here in Australia, but worldwide so that when your time comes, that each of you can call on it if necessary for your court time!

November 2014

As you can see there has been a break in proceedings, between a few family issues, some of the weirdest health I have ever experienced (and after the last couple of years that is saying something!) and a distinct decline in my psychological condition (which I believe that I may have arrested now), I am back to finish this!

There have been some major developments in my world (and others I see thanks to Di and the many others jumping on the BHR bandwagon, good luck you guys, I hope that you get to have Dr McMinn personally show up in court and explain just how rich this killer device has made him!!) but in light of other happenings I think that I need to discuss a very important issue.

So, instead of going on about the ‘surgical side of things’, I thought I would digress and look at something which appears to be getting more sinister and ‘under-handed’ the longer it goes. The Legal side of things!

Firstly, my apologies to our friends in the USA, I don’t know the exact machinations of what occurred there with the ASR ‘settlement’ and would be more than happy to be enlightened, I just have a few observations and hopefully these will lead to better understanding and collaboration for all of us.

I have read a few figures and heard the comments of some, but given that I am 44, have had 5 hip replacements in 7 years (all on right side), am about to be ‘medically retired’ from the profession I love, and can’t even enjoy some intimacy with the wife who has stuck by me (I’m not mentioning pain, no sleep etc. as they are givens for all of us), I think the $250,000 (or whatever it ended up being after everyone gets their ‘slice’), seems a joke to me.

Please let me know if I am wrong, but I am stunned that the ‘majority’ (this was how it was explained to me, so sorry if I am wrong) of the eligible group accepted this as fair?? I keep getting told that I am in the minority and that many affected by this are (not my words!) “old, sick of fighting and just want this over with”, I am still very surprised that given the Kransky judgement and others I have read about that such a tiny figure was accepted?? I would be very happy for someone to enlighten me about this.

Sadly, I am aware of a few here in Australia who have also accepted negotiated payments (negotiated directly with J&J/DePuy through an intermediary based on a 3 scale payment system starting at $39,000, yes you aren’t seeing things and only going as high as $100,000), many of whom are elderly and very unwell, but I can’t begrudge them wanting some peace in their final years, but, J&J are expecting that ALL of us will accept these terms so that they can stop paying their extravagant legal bills! As a point, here in Australia alone, if J&J (or any of these companies for that matter) spent even a small portion of the hundreds of millions of dollars that they have spent of legal defences, on research into the ‘effects of cobalt metallosis on the human body’, maybe we wouldn’t all have to be advising each other on our health and even more surprising, we might actually be able to get medical treatment for the many horrible side effects that we are all experiencing!! How’s that for an idea??

I mentioned earlier in this that I had an “independent medical assessment” organised and paid for by J&J/DePuy, well now I can explain a few things around this and show you the morally and ethically bankrupt ‘people’ (very hard to use this word without swearing or adding a great deal of sarcasm) that we will all eventually have to deal with.

I am not a conspiracy theorist by the way, I can prove everything I am about to say. I had my ‘assessment’ on the 10th of June, the report was apparently received by J&J’s lawyers on 14th November, there were reasons for this though. In this country as part of our legal process, and also as this was an “independent” examination, J&J’s lawyers were to provide the doctor with all of the health history that they have badgered me into providing them (this is something that I have freely done as I have nothing to hide!) and I was to bring along all of my x-rays and scans for him to review as part of the examination.

It turns out that J&J had ‘edited’ my medical records, there were sections blacked out (whole paragraphs of reports in some cases), details removed, particularly anything from a surgeon that attributed cause to any of my injuries to the ASR device I was implanted with, and funnily enough despite plenty of them, all of the blood tests results that this doctor was provided showed that I have never had an elevated Cobalt or Chromium level.

It was only fortunate that this surgeon found this a little concerning and then set about getting my permission to get the ‘whole’ copies of all of these documents! In this country, this act alone is grounds for the legal team employed by J&J to at the very least be disciplined by the court or if the court deems it serious enough they can be removed from the case, maybe they might want to be thinking about that before they try that again!

So for those of you yet to go through this process (the BHRs and other MOM devices yet to see court) be prepared for this type of behaviour! The sad thing is that we (the people injured, maimed or killed by these devices), often have to be our own advocates, as the lawyers are just waiting to be paid and are trying to spend as little money as possible in the meantime so that the ‘end margin’ is better, cynical I know, but I challenge any of them to truly show that they care by donating their services for free!!

Anyway, I have to get moving, who am I kidding, that means moving from the computer to the recliner chair that I seem to live in!! I wish all of you out there the very best of health for the coming festive season and new year and I hope that you are all surrounded by those that you care for and who care for you!

Please keep sharing your stories with us, keep asking questions as that is the only way that your own health will be advocated and most of all, despite all of the barriers put in front of each of us, keep trying to fight and if you can’t fight, please let one of us know so that we might be able to take up the fight for you, this is vital as I don’t want to lose anymore colleagues to this insidious man made problem!!

The companies that did this mightn’t have a combined conscience between them, but we can all prove that as a united force that it doesn’t matter how many zeros are on their profit statements at the end of the day, but we are not only more valuable, but we also won’t let a bunch of profit driven, unethical and amoral killers get the better of us.

Power to all of the Hipsters, I send you my best wishes, every bit of strength I can share and to each of you in your personal or combined fight, please let me know if I can ever be of assistance to you, even if that is just an ear to bend!!

Take Care,
Stu Cain