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Here We Go Again

Stuart Cain, Brisbane, QLD, Australia

I have had a lot of time recently to ponder the last couple of years and the more I think about it what has happened to me and the many thousands of others out there, especially readers of this blog, is something that defies belief. I have included a photo that my wife took of me (unbeknown to me at the time), of me sleeping in the recliner chair where I have spent the best part of the last year as I find it too uncomfortable to sleep in our bed. This may not seem like too big a deal, but as a 43 year old married father and grandfather, not being able to be able to even sleep next to my wife is something I find very difficult to stomach (let alone being able to actually maintain a ‘normal’ physical relationship)! I used to joke at the start of this that this was ‘the chair of knowledge’ as I used to spend all of my time researching, reading and talking to people on the phone or internet, to collect as much information and knowledge of the experiences of others, so that whenever I spoke to anyone I had as much information at my disposal as humanly possible.

I have now come to the point where I resent even having to sit in the chair, let alone sleep in it! I am sure that there are many of you out there that will relate to this, and remember, this is all because we were ‘foolish’ enough to trust a doctor, a medical prosthetics manufacturer and distributor or whatever other advice we each received before we decided to have a MOM implant (no matter who made it) put into our bodies! So as I sit here in my chair, I wanted to share some thoughts, hopefully provoke some ideas for each of you to take on as your own and above all else encourage each and every one of you to remember that you aren’t going through any of this on your own and that we are all out there willing to listen and advise where appropriate.

Remember it is not weak to share your pain, whilst we cannot take it on physically, we can empathise with you and maybe even help you to get through it! I hope the other photo I have included doesn’t upset anyone but I wanted to share a visual reminder of what this is doing to each and every one of us (my apologies in advance if this does indeed upset anyone).

This is a picture taken during my second revision, for those who haven’t read my previous story I had my first revision in November 2010, in late September 2011 I stood up from a chair at home and snapped the titanium stem in my femur clean in half without breaking the bone. This photo was taken by the surgeon during the second revision. The reason my stem snapped was because the metallosis in my femur had killed off or necrosed the bone and this allowed the stem to ‘flex’ as it hadn’t adhered to the bone as it was intended to do. The silvery, shiny section within my femur is the ‘evidence’ of metallosis, this was the point at which my stem snapped, I subsequently had an Osteotomy (splitting of the bone) for the surgeon to be able to retrieve the bottom portion of the stem.

You might also note that there are a number of ‘dark’ patches within the cross cut bone below (toward the knee) the point of the metallosis. These are evidence of metallosis actually within the bone itself, these do not show up on imaging and can only be discovered by ‘slicing’ into the bone. I have no doubt that many of you out there are actually suffering from the same issue (not that I recommend you race out and have an operation!), but I want you to be aware of the existence of these things and the reality that none of us know for sure exactly how our bodies have been affected by the poison that Cobalt and Chrommium become once introduced to the human body. The one thing that this photo does not show (as it had already been removed at this point), was that even after less than 12 months of having the original revision, the surgeon discovered more necrotic (dead) tissue around my whole hip joint, this was in muscle and other tissues directly attached to the hip.

I would also point out that luckily for me, this revised joint was NOT a MOM implant, so if this is occurring even after the MOM implant is removed, I fear that many of you out there may be experiencing the same issues. Again I am not suggesting that you all need to go out and have more surgery, but I do implore you to be vigilant with your own health, ask questions if you have concerns and above all else, if you aren’t happy with the answers, seek a second opinion. This brings me to my next bit of evidence for you all to consider.

After the operation in the picture (Sept 2011), I continued to have a great deal of pain and great difficulty walking or mobilising, I couldn’t sleep in my own bed and took to the recliner chair, and as I have developed a rare form of anaemia thanks to Cobalt poisoning, I continued to bleed internally and with regular blood tests was not recovering my haemoglobin (red blood cell) levels. I had follow up imaging that was suggesting that not only was my ‘Osteotomy’ fracture not healing, but as I had a very large/long stem inserted to try to ‘stabilise’ my hip joint I appeared to be ‘developing’ fractures running down my femur toward my knee.

By February 2012 I had become very frustrated and the recent x-rays that I had done suggested a worsening of the fractures. This was accompanied by ever-increasing pain, even more difficulty mobilising and walking and a constant swelling in my thigh. It was time for a second opinion. I was able to get this arranged quite easily and my new surgeon confirmed that he indeed thought I had active fractures developing below my stem and that I would require more surgery and he ordered a Nuclear Bone Scan which confirmed the diagnosis.

I gave my previous surgeon a chance to review my x-rays (which my new doctor had picked up and immediately identified the fractures), however I didn’t mention the Bone Scan which in hindsight may have been unfair. He refused to concede that there were any fractures and suggested I have some Cortisone injections into my thigh to ‘relieve’ the pain and swelling. My decision to seek a second opinion as far as I was concerned had been vindicated and I consequently had my 3rd revision in March this year which also included major grafting within the femur and a ‘rebuilding’ of the top of my femur with meshing to facilitate the placement of the new implant. In this instance the surgeon found (unhappily I don’t believe he had photographed it) more evidence within the bone and around the hip joint of metallosis induced necrotic tissue. Remember this is now 18 months since my MOM implant was removed.

I am now going in again in 2 weeks’ time, the fracture that was ‘caused’ by my Osteotomy has now not healed in 12 months and my hip joint needs to be ‘checked’ for loosening as the fracture has caused a piece of bone to become ‘detached’ from the graft done in March.

The current plans for this operation already involve a plate being somehow attached (I say this as the surgeon has genuine concerns that I don’t have the bone density to cope with screws), more grafting to try to ‘plug the fracture’ and any other ‘gaps’ that need to be filled and hopefully I won’t need another revision, but this is an option if I have done any inadvertent damage to my current prosthesis through ‘adapting’ to the current fracture issues.

The point I want to make here is that my surgeon has made me aware that there is about to be published evidence that Cobalt ions have an adverse effect on bone fracture or breaks healing (I promise as soon as I get this article I will post it unless anyone beats me to the punch). He has genuine fears that given my recent record with this (Cobalt induced metallosis), that when he does go in he will find more metallosis and the worst case scenario will be that too big a portion of the bone is affected in this way and then we will have a lot less options to try to repair this. If there are large sections that have already necrosed (as this doesn’t show up on regular imaging), we may have to consider the viability of a repair, this is certainly a place I don’t want to go to, however the surgeon has rightfully warned me that this could be a possibility and I respect his integrity in doing this.

So here we are today, stuck in a chair, counting down the days to the next surgery and hoping for a good outcome, however I would be lying to you all if I said I was confident! For the first time in a few surgeries now, I have an instinctual feeling of concern bordering on dread, now I am not usually a negative person, however I can’t escape my own doubts this time and I will just have to learn to deal with this! Now after all of that,

I want to dedicate my next thoughts to Earl, Howard, Bob, Brooks, Meg and the many other wonderful people I have met throughout my entire experience as a ‘hip patient’ (that used to actually sound cool!).

I want to encourage all of you who read this, your loved ones or those that you confide in to please take this on-board. None of us are ever alone! Whilst I and many others are fortunate to have loved ones around us, if you don’t have direct support, please remember that we are always here! You may not know us, or even feel like we will understand, but you can trust us because of all the people in the world we will have an insight into what you are going through.

I always used to teach my nurses to never use statements like “I know how you feel”, especially when talking to patients or their loved ones! But we will have an insight into what you may be experiencing because most of us or our loved ones have been through similar circumstances.

I also want you to consider this, Please share your story with the world, whilst I appreciate that many of you feel this is private and aren’t comfortable in doing so, the more of us that do speak out and the more stories that get told, not only will people start to understand exactly what these companies and doctors have done they will start to generate an opinion on this as well. I completely understand if you choose not to do this, but please I do ask that you then actively participate in the sharing of other people’s stories, tell your family and friends what you have learnt and again this will help to spread more information about what is going on to real human beings, not some fictional characters in an imaginary story.

My next point is simple but many of us find it difficult, Don’t be afraid to ask questions and if you are not satisfied with the answers, seek the truth elsewhere! For many of us it is not in our nature to question what we are told, especially if the answer is coming from someone who we have been conditioned to believe is more knowledgeable than we are.

I urge you to break with your own ‘urge to believe’ especially if you aren’t 100% sure of what you have been told!

It wasn’t that long ago that MOM hip replacements were being ‘sold’ as the latest and greatest technology, long lasting and better wearing than all previous incarnations of a hip replacement and ideal if you wanted to retain an active lifestyle! I believed it and I now refer you back to the picture at the top of this article!

I also remember the head of the Australian Orthopaedic Association going on television and stating that the ‘cobalt issue’ is just media hype and driven by a few disgruntled patients! I refer you to the photograph of my leg!

Please take this point into consideration whenever you are speaking with anyone about YOUR HEALTH AND WELL BEING!

Finally, I invite each and every one of you to: Join the fight! We have each had our health (mental and physical) and our lives in general utterly devastated in some or many ways by the deceitful, unethical and greedy actions of a number of medical companies and unfortunately in some cases by the doctors who support them! I am not asking you to become a card carrying, flag waving true believer in the cause, but I am asking you to be a voice to be heard or another person willing to stand up and say I won’t let this happen to anyone else while I have a say!

If we are all able to unite against the Johnson and Johnson/De Puy’s, Smith and Nephew’s, Stryker’s and any other manufacturer and distributor of MOM technology in this world, we can make a difference. Remember, the one thing they will notice is a drop in profits! Even if you don’t want to speak up, we are all consumers at the end of the day, find out what other products these companies produce or own the rights to and simply choose not to purchase them! Again share this with those around you and see if they too will support us in this way!

This is not an idealistic waste of time but it certainly is a tactic in what will be a long battle. I assure you they will notice if the ‘bottom line’ is affected negatively! I hope by now you don’t think that I am just an angry, bitter person, because I generally am not, and those that truly know me will attest to this. However, those same people will also tell you I am a fiercely protective of those I care about and that now includes everyone who has been adversely affected by this terrible situation, as I do consider us all now as brothers and sisters in a grave injustice.

I am so grateful to have met people like those mentioned above because without learning their stories and re-living their experiences I would not have a true understanding of my own experiences, especially as we are spread all around the world and that can seem like a large gap to bridge. Thankfully we have this site and the ability to communicate with each other, so again I implore you, share your stories, speak up if you feel you can, listen to what others have to say and as I can’t reinforce enough seek the answers to ANY questions you might have! I hope to speak to you all again soon, feel free to contact me via the website and I hope that if even a few of you can join us and share your story we will all be more knowledgeable about those experiences and with knowledge comes power!

Stuart Cain