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A Warning for all MOM Patients – It is NEVER over, and your health is never, ever going to be the same!
My apologies for not writing for some time! I have been following the progress of the many brave people who have been using Earl’s awesome blog and I continue to admire every one of you who have been able to speak up and even more so, those of you who are unable to share but use the site as a communication tool and information gathering service! I implore all of you to continue to speak out and seek answers, as I have found out (as has Howard, Bob, Brooks, Earl, Meg, Anna, Connie and so many others) these answers are often not there to be discovered, but if we all continue to push the medical world, the device manufacturers, governments and regulators, they may actually realise the importance of this and provide the funding to the researchers who are crying out for the opportunity to look into this terrible situation. My best wishes for 2013 to all, mine hasn’t started very well but I hope that the following will give each of you renewed vigour and the strength not to accept mediocrity in your treatment by the device manufacturers or the medical world!
Thanks to Johnson and Johnson/DePuy, Smith and Nephew and all the other companies that pushed MOM (Metal-on Metal) technology into the market place our lives will never be the same. Not only for the current issues that each and every one of us is experiencing, but for those that are going to continue to develop until we all die. I wanted to share with you my latest ‘issue’ and let it be a warning that there are darker days ahead for many of us who are yet to find out the true impact of what these implants and their associated ‘side-effects’ are doing to us.
I don’t know what each person was told, but I was assured that this ‘Rolls Royce’ of implants would allow me as a young person (37 at the time of implantation), to go back to my previous level of activity (with some obvious limitations) and that it would last longer than the alternatives. This was probably where the biggest mistake was made (apart from using the bloody thing in the first place). After 3 revisions of the hip, the insertion of a plate and 9 screws to hold my femur together and of course the painful rehab associated with this, I am now in a worse condition than I was before the initial implant. I know many of you will relate to this (30 operations now isn’t it Howard!). I almost wish the suspected infection that they thought was in my bone actually was there this week as even though it would suck, the treatment was possible! Unlike the ‘holding pattern’ I have been placed in whilst the medical world try to come up with why my health has deteriorated to the point that it has!
My ‘ASR experience’, as Johnson and Johnson/DePuy like to refer to it as, has come crashing down on me in the last week. After a rapid deterioration in my health over the last 2 months I had an x-ray which showed that not only had my 15 month-old fracture in my femur not healed (as it previously appeared to finally be), but it has now increased in size and ‘crossed’ over 2 of the screws in my femur. This has occurred during a month where I was virtually chair and bed bound as I had incredible pain, increasing fatigue without actually being able to sleep and couldn’t weight bear without a great deal of assistance. I had also developed intense pain in the foot on the opposite side to the implant, pain in my opposite shoulder and lower back. After a series of blood tests (to rule out infection), Nuclear Bone Scans and CT Scans, it is confirmed that I have ‘stress fractures’ in my foot and signs of developing fractures in my shoulder and lower back. No, I wasn’t in a car crash, these ‘fractures’ have developed ‘spontaneously’ as described by my surgeon. In his words: “how can an otherwise healthy individual (not counting my destroyed hip of course) develop stress fractures, especially when you haven’t been doing anything”.
In the absence of research and evidence (as no-one either has the funding or genuine interest, or if it has been done is too damning for us to see!) on the effects of Cobalt and Chromium toxicity on the body, my surgeon after seeing ‘some very interesting side effects’ in his other patients firmly believes that we are now starting to see the true effects of Cobalt and Chromium toxicity in the human body. He also notes that it is an interesting correlation between the higher levels of side effects in those people who were more ‘active’ after being implanted with a MOM device. I should note that my surgeon has never used any MOM technology as he felt when it was released that it wasn’t tested and investigated enough for not only its long term sustainability but also for the possible side effects that it may create. This was on the basis of research in the 1990’s and early 2000’s into the ‘wear’ of such devices and how there was little evidence of what this ‘wear’ might do to the patient. It is amazing that the very small number of surgeons, such as him, are now given almost ‘charlatan’ status now if they have the courage to speak out amongst their own colleagues about MOM implants, I am sure that Dr Steve may well appreciate this!
So now as I enter a new week of more doctors and tests, the ever-present company of pain, not being able to walk without crutches and the mental anguish of not only ‘not knowing’ where to turn from here, let alone what effect this is having on my wonderful wife and amazing family, I want all of you to be aware that there is so much more that none of us are aware of about the effects of MOM implants and as I have now experienced, the medical world have even fewer answers when it does happen! I even approached Johnson and Johnson/DePuy direct to see what they are doing about research into the effects of these devices, surprisingly they were more concerned about the multitude of pending legal cases than what these wonderful devices will continue to do to us patients as long as we live! I implore each and every one of you who have had a MOM implant (or your loved ones) to monitor your health with diligence, as I found out it isn’t just the area of concern (your implanted hip/s) that you need to consider, this poison can hit you anywhere! I should have known as part of my ‘initial’ raft of side effects was a very rare form of anaemia caused by of all things “heavy metal poisoning”, this is a systemic problem we all need to be aware of now. Please also remember, the removal of the offending device is not the ‘end of the road’ as far as your problems go, if you had a recognised toxicity to Cobalt or Chromium, or even one that wasn’t investigated, the damage has been done, we are all just waiting to see now how that damage presents to us all!
I would be very interested to hear from anyone else, who has had problems with either poor fracture healing after Cobalt/Chromium toxicity or of course the development of ‘random fractures’, I also encourage anyone who has had any as yet ‘unexplained’ side effects to please let us know as I would like to try to develop a data base of any side effects that have or may be attributed to Cobalt or Chromium toxicity. I have tried to see if such a list exists and I am yet to find one (please let me know if I have had a ‘boy look’ and missed it if it does indeed exist), although I suspect that as many of these effects are only now coming to prominence that a list would be inaccurate anyway. I would be very interested to hear if anyone has had any luck with any sorts of treatments (western or eastern medical, alternative or otherwise) to do with their complications from their MOM implant so that these can be shared to the wider group.
I hope that everyone has a better week! I am going to fight to get to the bottom of this in my circumstance as to be honest I am truly scared of where this might lead and I think my family have suffered enough through all of this without having to sit back and watch me slide even further into the mire of declining health! I am very aware that there are many of you out there in a worse position than me so please don’t think I am in any way diminishing your experiences, I can only imagine what you are going through and lend my support in any way I can! I am also determined that regardless of compensation payouts and court cases, that Johnson and Johnson/DePuy, Smith and Nephew and any other ethically challenged medical device manufacturer is truly held to account for what has happened to each of us and apparently what is continuing to happen to each of us! I encourage you to keep up the fight, share your experiences with us or at the very least seek answers to any questions regardless of what people (especially doctors who may have a reason (financial or conscience) to keep you in the dark) try to tell you, if you don’t believe them or have doubts about the answer/s you have been given look elsewhere until you are satisfied!
One final thought: “Hope is the essence of life, no-one can live without hope!”, this Buddhist quote is one that I wear (literally) around my neck every day, I think that we can all draw some strength from it as I believe it is vital to us all getting through this (although it has been sorely tested in the last couple of weeks!! J).
Take Care, Stuart Cain
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- J&J Failed to Weigh Hip Metal Debris Risk, Witness Says – Bloomberg (earlsview.com)
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Earl's View 
Stuart, I am so so sorry that there isn’t a light at the end of the tunnel for you yet. What you are doing when you are so unwell is literally amazing, you ust feel like crawling into bed and not get up again. But you continue to help others who are facing similar problems, and I am worried about a revision, good grief Mary ,!!!! I was wondering if I can direct a few MOM patients, who are having enormous problems to this site.?
Hi Mary, Thanks for that, the urge to disappear is incredible, but that wouldn’t get anyone any answers! You are more than welcome to direct anyone to this site, the more people and their experiences we all get to see the more it helps us all to gain a better understanding about what is going on!! The reason I wrote this is so that everyone who has had a MOM implant, no matter what ‘brand’ can get an insight into the potential problems that they may encounter! It is important that we all gain as much knowledge as possible as in the end knowledge is power for us all!
Cheers, Stu
Thanks so much Stuart…I just wanted to be sure.thanks
Hi Stuart
Sorry to hear about your problems, you seem to have reached the same place as me.
I have seen every specialist under the sun but still have no answers to the the many illnesses I suffer from.
The physical and psychological effects are devastating, I have tried to kill myself twice in the past year due to the suffering, luckily I have a very good psychiactric team looking after me and they have been able to help me review how my life will be in the future.
I have tried quite a few times through different forums to get other sufferers to send me their information to record it on a database so that we would have a record of the common suffering and be able to show this information to the medical profession so we would be taken seriousley but this has proved very difficult and there seems to be a reluctance to speak out.
I have taken my case to my local MP so questions can be asked in the UK parliament as to what will be done to help the many sufferers around the UK, unfortunately at first he did not seem that interested however after I started sending him detailed information about the MoM implants and Cobalt and Chromium toxins he seemed to be a bit more interested.
I believe that until we speak up in numbers we will not be heard. So I also implore every sufferer out there to speak up and help us put a database together that will be recognised as proof this is actually happening to all of us.
I will continue to fight for as long as it takes however there are still lots of days that I find it difficult to continue.
Keep up the good fight.
Sandy
Sandy , I posted a lengthy response to your posting that went “into review” days ago under “Connies” my story column, and it has not appeared. I am so pissed that so many of us are separated and struggle alone as these blogs don’t quite get the impact out to the masses they should about this story and the TRUE impacts on US! Even the best stories like in the NY times and such don’t do justice to the intricacies of us as a massive group and the “experiment we have secretly have become. I am 56 and now disabled after a 6 year, 4 surgery battle w/MOM debacle.Depressed and even disoriented as to my true self in relation to functioning as a normal and productive person. I was in good shape and financially secure before and now have lost everything as a result of this. I would like to get 60 minutes or 20/20 to do a story with us in mass as a panel of folks that have and are going thru this. How can we unite beyond these blogs. I have been in touch w/Erin Brockovich’s office and even they seem ho-hum about it all, when it comes to hearing from US! I am frustrated and still going nowhere and with no compensation as I wait for my case to be heard.
How disappointing. I said to my husband a few weeks ago that I need to find an “Erin Brokovich” to take on Smith and Nephew.
Thankyou Stuart,for your very heartfelt story,as for symptoms I suffered from crippling leg cramps that would wake me from a dead sleep and take quite a long time to subside and as I’m sure everyone has,I suffer from Tinnitus constantly,I’m in PT now for Bi-Lateral hip surgery,left one is new and the right is the Depuy Revision, the right one is killing me, I’m in constant pain and I know I won’t be going back to work,whose gonna hire a guy who can’t stand for ten minutes or sit ,I drove Forklift and I’ll never be going back ours is such a sad story,I pray for each and every one of you every night, please keep sharing your stories,they bring hope and knowledge
Hi Adrian and Sandy, thank you for your kind words and it is always reassuring to know that there are more people out ther who are swimming in the same ‘muddy waters’ that so many of us are in! I can completely relate to where you both are at, especially now that I am ‘returning’ to the specialist merry-go-round that I thought a couple of months ago I might get a break from! I am sorry to hear Sandy that this has pushed you as far as it has, but also very happy to hear you have a good team around you as I too have learnt the hard way that this can push you to places that are intolerable. We don’t seem to have too much interest here in Australia at the political level, although an independant Senator here has been very vocal and even drove through a Senate enquiry into the ASR (although the key recommendations from this enquiry which closed this time last year are yet to be fully put in place!). I did hear that during the recent Kransky case in the US that a or some UK politicians spoke out asking about the need for criminal charges over the actions of device manufacturers (not sure if this is true!). I also support the commencement of a symptom/side effect database, as the outcomes for people are so different and diverse that most people in the medical world often don’t know where to turn when new or different patient outcomes appear! Adrian I too suffer from incredible leg cramps, I end up with what feels like heavy bruising for days after each bout, apart from not allowing me to sleep I often have to get out of bed and try to move and ‘stretch’ for pretty much the rest of the night or the cramps simply keep returning so that’s the end of sleep for those nights anyway! I know how you feel about work, each time I think I will be returning to my hospital (for my career not treatment!), it seems that dream is snatched away by yet another poor turn in my health! I congratulate and encourage both of you and everyone else who has the courage to speak out and I firmly believe as you have said that at least if we all keep talking that we will be heard! Thank you again and I look forward to keeping up with your stories. Take Care, Stu.
Hey Stuart,
Sorry to hear of your on-going struggle.
You may already know of my experience but in a nutshell………had a S&N BHR 2006 aged 49…left hip.In 2011 had my blood levels checked and cobalt and chromium were extremely high. My pelvis was slowly being eaten away so immediate revision surgery was scheduled.I was operated on In Nov 2011 and after scraping away the grey decaying flesh around the hip and femur I had a bone graft on my pelvis, a metal plate inserted to keep things together and I now have a ceramic THR .
I am in pain everyday but try to manage it and am fortunate enough to be back at work part-time.
What sparked my interest in your recent posting and spurred me to write is your stress fracture. After being on crutches for 8 weeks after the revision I was advised by my surgeon that all was going well and I could now bear some weight on my left foot.As soon as I tried it was too painful. After the usual MRI, X-rays ultrasound and bone scan the diagnosis was “stress fracture”. I was somewhat baffled and back on crutches.
I like the idea of a side effects data base as there is not much reliable info on cobalt toxicity.
Good luck and keep fighting !
Dear Stuart and all others reading this,
I would like to put a conserted effort into getting this database together for all sufferers, I am prepared to accept all the info and input it.
Additionally I think it would be a good idea for all of us to stay in touch and correlate all the information we have and discuss ways of getting this into the public arena ie, press, parliament and medical journals. I want to stand up and shout about this and be heard.
The legal teams will deal with the compensation side but it’s not in their interest to bring the manufacturers to book, I find this very distasteful, a very unfortunate position.
I can be contacted at: sandy.doherty@btopenworld.com or +44 7882504233.
As I have said before if we remain silent others who are not aware of the issues will carry on and find out too late what suffering they face in the future.
Just to let you know I live in London in the UK which puts me in a good position to lobby the necessary people to gain attention for this issue.
Continuing the good fight.
Regards
Sandy
Hi Karen, Sandy and Richard,
Thank you all for the responses! I will try to cover these as quickly and acurately as possible and raise a few questions of my own. Firstly Richard, I couldn’t agree more with you about the media side of things, we have had some coverage here in Australia, occasional current affairs spots (2-5 minutes in duration) and a major current affairs show here did an expose called “Joint Reaction”, but that was back in May 2011 when the story was breaking and my mate Bob Lugton had to fight hard to get it to run. I agree we need something that is mainstream and unites as many ‘victims’ of this as possible and is broadcast to the widest audience! I am happy to assist from this end if possible. I am currently spreading our story to as many media outlets as possible to see if I can spike some interest. Karen, did you ever get over the ‘stress fractures’ or more to the point were they ever investigated? My surgeon and local doctor have gone into a bit of a panic over them and are sending me to all manner of specialists to try to sort it out! I have looked extensively and can’t find any research/evidence formally linking stress fractures and cobalt toxicity (although I have been told that there are a couple of small studies looking into such a link!). I would love to hear your thoughts. Sandy, I would be very happy to participate in a database and would encourage as many people as possible to do likewise. I understand what you say about the difference between legal teams and actually getting some answers for victims, I approached J&J’s heirarchy here in Australia to find out what they are doing in the area of toxicity side effects, long term damage and future issues and the lawyers were ‘surprised’ that I would want to do this. I would be happy to help from our end. Thank you all again for sharing and joining the debate!
Cheers, Stu
Sandy,Stu,I can be reached at hbspruce@yahoo.com,I agree about a database and will gladly help as much as I can,I’m in York,Pa and have been in contact with some reporters at Bloomberg News,they were the major party reporting on the California Trial,just let me know what you’d like me to do because we need to shed Major light on this very sad situation,I thought about maybe a Facebook page for Depuy Victims,what do you guys think?
Good morning Stuart,
There was no follow up re my stress fracture. My doctor had no explanation especially since I’d been pretty sedentary for the past couple of months and this type of injury was that of elite athletes. I was told to go back on crutches and take paracetamol until the swelling and pain eased. It was a “manage it yourself” situation. I am still experiencing pins and needles in the foot ( nerve damage) but the fracture seems to have repaired itself.
Something else that has puzzled me is the pain I have been experiencing over the past couple of months in my RIGHT leg. The front of my thigh and shin feel bruised and it’s sometimes quite painful to walk. After consultation with my GP I once again felt fobbed off with the suggestion “referred back pain”. Maybe it is but it all seems too coincidental. I have so lost faith in the medicos I’ve been seeing but really don’t know where to go to be seriously listened to except in this forum!
Take care..
Karen
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Dear Stuart
Your title says it all, unfortunately for us. I thought I was in pain before my revision but that is nothing compared to the pain and limitations I now experience. My biggest frustration is the lack of any initiative from the medical community to at least investigate and follow us. I will be more than happy to participate and contribute to a database. Aside from the constant pain and lack of mobility I face on a daily basis, I am totally frustrated by the lack of concern over the metal toxicity. I am almost two years post-revision and while my serum and whole blood cobalt levels have dropped to almost normal, my chromium levels which were initially 40x normal dropped initially but have remained at ~20x normal for the last year.
Please let me know anything I can do to help!
Hi Carole,
Thank you for your response, it arrived at a very appropriate time as I have been in a very dark place since my visit to the Endocrinologist last week (I am about to write an article about it for the blog!)!! You will see why!! I am intrigued by your Chromium levels as they seem to have become the ‘forgotten man’ in these discussions as Cobalt gets all of the attention! I would be very interested to hear what other side effects you have had as there are a number of very small research studies that are drawing links between Chromium and poor bone healing and poor fracture healing, not to mention Bone Marrow effects like immuno-compromise and rare blood conditions like Anaemia’s like I have. Please let me know when you get a chance as I would like to follow this up.
Cheers, Stu
Hi Stuart,
No one will say any of what I am experiencing could be related to chromium toxicity. Compared to all you and some of the others here have experienced, my complaints appear trivial. Like you I was told the MoM hip would be the best choice for me because I was younger (52) and active. Original surgery was in July 2005. Everything seemed great for the first two years. When I had the revision surgery in July 2011, I lost most of one of the muscles that support the hip so I must walk with a cane. I have been seeing doctors for hip, thigh and back pain for the past year. None of the tests (MRI, bone scan, EMG, xrays) have shown anything definitive to explain my pain which keeps getting worse. I get some relief from pain meds and a tens unit. I am able to work but it takes everything out of me. Routine blood tests have been normal. The only other health issue that has arisen is that I had a stage 2b melanoma removed one year before the revision. I have found literature theorizing a connection between hexavalent chromium and melanoma. My pre-revision cobalt level was 169.9 with normal for the lab being 1.8, it is now 1.3 with a lab normal of < 0.4, Chromium was 80 with normal at that time 2.2; since December 2011 it has changed very little, from 25.9 to 22.8 with a normal <= 1.4. All I keep hearing is that no one knows what it means. I will be interested to hear your follow up.
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