Dear Howard, Earl, and Fellow BHR Sufferers,
I got chills reading Howard’s remarks because I have been thinking the very same thing–about uniting and trying to put an end to this outright criminal act in which Smith and Nephew is trying to get away. It is truly appalling, revolting–makes me ill and beyond frustrated–I just want to retreat and try to make the anger go away, as I hear the seconds ticking away on my Statute of Limitations. But I have now come to the mindset that I know inertia is not the answer.
Howard, you have endured so much, and I your life has been tragically compromised, as Smith and Nephew continues to preach their deceptive dogma, and plant these poisonous mega-destructive devices into clueless victims.
After two revisions, and living the past three years in horrendous acute to chronic pain, on elbow crutches or a cane, and on daily pain meds that never fully narcotized my pain, only made it tolerable–I have most fortunately had my pelvis reconstructed after massive osteolysis and pseudotumour lied where healthy bone was once. My surgeons were doubtful they could successfully graft with enough stability to replace the bone the metals ate. For probably years, my Cobalt blood level was 60% above the norm, and my Chromium, 35.5%.
When my BHR first failed, I thought it was a no-brainer to file a law suit against S&N. I mean, I so naively felt (as I have now come to understand) if just ONE person could get as sick as I from this bloody device, than that person should be entitled to compensation. I have to admit, in your recent post, Earl, when reading about the patients who sued Stryker for their squeaky hips, I again felt my blood begin to boil. I know it is a drag to have a squeaky hip–my Birmingham squeaked from the get-go, and it was always embarrassingly alarming. But really?? I would have welcomed a squeaky hip compared to the nightmare, I, and many of you, have withstood. What the hell is wrong with our world if people can sue Stryker for this, and we can’t sue Smith and Nephew because they are juridically protected.
Howard, forgive me for not listening to, or researching the facts that you knew all too well. You tried to make us all privy–in USA, the FDA’s PMA, the pre-emtion law. I was ignorant, I was in my own world with my diagnosis–still astonished such a thing could happen–but focused on my pain and healing, and a very, very difficult rehab after my first revision–which proved unsuccessful. Immediately after revision surgery, I was in bed for months, toe touching, and progressively placing gradual weight upon the leg, until it fractured 4 1/2 months later, never able to fully weight bear anyway. The whole agonizing regimen was abortive. (Earl, I am finally going to post my entire story–my path from sickness to wellness–it is inspirational, I am sure, for all of you who are suffering–but I want to address Howard’s appeal first.)
I signed up with an attorney who also signed others in our group. He held onto all of our cases for a year, only to drop them with a letter. All the previous conversations I had had with him on the phone where he stated I had a strong Product Liability case, and even named a dollar amount he felt certain I would receive, were gratuitous. He was only accumulating cases–names, BHR failures. He explained nothing to me about the politics of the situation, the PMA, the pre-emption, about possible sanctions attorneys could be fined if they would even try to litigate S&N. It was only after (and forgive me for not recalling the state) the only US case filed against Smith and Nephew from a Birmingham Hip Resurfacing female plaintiff, was dropped in court, that my attorney callously composed the letter dropping my case, and I am assuming, all the others. He couldn’t even call me to explain his plight–there was just no potential in it for him any longer, so, he was done. After cutting into my 3 year statute for a year.
As it turns out–and as I started to HEAR what Howard was informing us about only seeking out an attorney apprised of the grave specifics of trying to take on S&N under their current protection dome–my current lawyer, astute to all of this–is trying to find a way around the pre-emption. He is highly doubtful–no surprise, as we have come to know–he cannot litigate the case at this time.
I was so inspired by your letter, Howard. It did put a fire under me. We would be abandoning our constitutional rights if we don’t unite–form a coalition, and FIGHT these despicable bastards! What in the world do we have to lose by giving them the biggest fight they have unintentionally beckoned?
We need to be a cohesive, global voice–testifying to our respective governing agencies, and individually presenting our ruination with the product–depicting our pain and anguish, and the deep, deep injustice we are enduring. We need Press. We need to Make Noise, Make Waves. We owe this to ourselves and we owe it to future patients who may receive a BHR and suffer as we have.
Howard, I am not as knowledgable as you are, regarding the clinical data supplied by S&N which led the FDA to approve the BHR a PMA. (Whew, that’s a mouthful!) But, I can imagine the study group did NOT contain many highly active people (those of us who were active with the BHR seemed to have suffered massive destruction, even though Smith and Nephew falsely marketed the product as, “the best choice for younger, athletic people”). And I can imagine the study EXCLUDED many perio-menapausal women, which is now proven to be a bad idea for this group. And I can imagine there WEREN’T many small boned women in the study group. When my Index surgeon–the one who first implanted the BHR–found out about my failure, and that I planned to file a claim against S&N, one of his comments was, “The Birmingham is still a very good product for LARGE BONED MEN.” He also told me they know much more now about the ideal candidate for the Birmingham, as opposed to what they knew back then. (I was implanted in Nov, 2005.) And that it is not suitable for small boned women. How am I supposed to feel about that now–being 5’1′ and 98 lbs? It was a poor choice for me, but they didn’t know it back then. But, they know it now, and do they BOLDY ADVERTISE AND CAUTION THIS? I am sure there are still small framed women across the planet who are receiving BHR’s. ( I must interject, this initial surgeon is a most compassionate and caring man, a great doctor, and globally renowned surgeon, supportive of my travail from the very on-start, unlike the second surgeon– my first revision surgeon, who is one of the most famed Smith and Nephew surgeons in the US, out of New York’s Hospital for Special Surgery.)
Whereas my BHR surgeon (located in Chennai, India) had over 375 BHR implants to his credit when I received the prosthesis, the Hospital for Special Surgery surgeon was one of the first to implant the BHR via clinical trials pre-FDA approval. In fact, I went to India for my surgery strictly because I could not get into the clinical trials here in America, and I truly believed, because of all the hype, I was getting the most superior product on the market, for my active lifestyle, my age, and my athleticism.
When the New York Hospital for Special Surgery Surgeon performed my first revision–slightly six years after my BHR implant, he told me I had the worst case of metallosis he had ever seen, and that it had been going on for a long time. However, seeing such a failure as mine did not hinder him from implanting other women with the BHR–I met several in his office, and they didn’t look all that big boned to me. I have heard from his office staff that Vicky Marlow of, “Surface Hippy,” (I hope she is resting in peace) repeatedly called his office to BULLY him into taking on certain patients she had convinced MUST have the BHR over THR, and they were far from ideal candidates for resurfacing. At least most of the time, from what I was told, the doctor had the good conscience to deny these patients resurfacing.
These two renowned Birmingham Surgeons and all of the other high profile resurfacing surgeons around the world have the influence to grossly hinder the implantation of the BHR, and all MoM devices, for that matter. But they quietly note their patient’s failures and revisions. I would be surprised if they reported them to the FDA, or to other countries’ administrations, or bring them up for discussion at Global Orthopaedic Conferences. They know darn well their parade is being rained on, and that all MoM implants will one day disappear from the market, but they are just letting the catastrophic journey take it course. They want their kickbacks for as long as they can get them. Ironic, I went to my first revision surgeon in New York when I became symptomatic because, being such a Smith and Nephew guy, and so renowned in implanting the Birmingham, I thought he would do the very best job he could, and I would receive much personal care, since he had a vested interest in this–he didn’t want Smith and Nephew to get a bad rap. But, I made a very wrong choice. He was odious, arrogant, lacked the adeptness to properly reconstruct my hip after he opened me up, and was not prepared for the devastation he found, and he didn’t even follow up with me personally. Fourth month Post-Op, he sent his Physician Assistant into the room to exam me, and told her to have me begin to fully weight bear upon the leg, for I was, “fully recovered.” And although I told her I do not feel stable on the hip, and cannot fully weight bear, she still told me to do it, as per his advice, so, I would stimulate the integration of the bone graft he had seeded. Two weeks later it fractured, but thankfully I had already sought out a stellar, stellar surgeon at another New York institution who was going to replace my other hip, and also foresaw the demise of the revised hip before the fracture happened, based on the 4th month post-op xray I showed him.
We all know one day all MoM implants will be obsolete–it is only a matter of time. But I believe Smith and Nephew, as crafty as they are, will simply just phase out the BHR, it won’t be recalled, and S&N will take no responsibility or accept any liability for the many lives they have disrupted and destroyed, both emotionally and physically. That is what will happen if we don’t take a stand!! WE MUST GIVE THEM HELL! WE CANNOT LET THEM GET AWAY WITH THIS. AREN’T WE WORTH IT?
I called the FDA several times to report my crisis, left a message, unable to get a live person on the phone, and I never even got a call back. I filled out all the Med-Watch and Consumer’s Reports. Nothing. Not even an acknowledgement.
Strength is in Numbers. I am pretty confident if every one who has had a BHR failure comes forward, we can prove there is more than a 1% failure rate. And we can appeal to Congress and the FDA–and the governments of Australia, New Zealand, UK, India, and anywhere else on a HUMAN level, that we have, and are, suffered, and are suffering, even if we are in the minority in regard to the product’s success rate.
We must be relentless and show our determination. We must have ONE voice. We must have EVERY voice. We cannot just talk about it, dream about it. We cannot just wait for our Statute of Limitations to expire–feeling depressed, overwhelmed, frustrated, and helpless. If your statute has run out, you will be rewarded on an intrinsic level by helping others, and also by watching Smith and Nephew crumble its BHR.
We must get a list going. If you are committed to fighting this, you must get on the list and be willing to present your case.
Howard, I will help you spearhead in the US. I will help form the alliance, and fly to Washington in a flash to testify. I will write letters, make noise, make tenacious phone calls. I will give it all the energy I have. I am sick and tired of sulking. I want to see Smith and Nephew accept responsibility and pay for the lives they have destroyed. i don’t want to see or hear about other lives destroyed.
Please, all of you with BHR failures join us. We must also find the path to locate others who have had Birmingham failures who are not privy to Earl’s site. Let’s be the most proactive we have been in our lives. What do we have to lose? We have already had our blood and bone taken from us. How ironic, the BHR’s advocacy program honed in on bone PRESERVATION. HA! Yeah, if they knew back then what they know now . . . the fact that they have left us Sitting Ducks while they do nothing about what they know now, IS A CRIME! Planting unsafe implants into Human Beings Bodies is an Abomination. THEY MUST BE STOPPED!
Thank You for reading, and a Wholehearted Thank You to Earl and Howard for making a Difference in This World.
Most Truly Yours, Camille Petrillo
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Howard said:
OMG…There’s nothing worse than the pain of having your hip pop out from it’s socket 6 or 7 times and you know the drill by then. Ambulance, morphine, reduction (if you are lucky) and in my case the Birmingham hip has been replaced now 3 times. I was recently in the hospital for another replacement and 2 weeks of rehab and then addiction to drugs again. Nobody cares how we suffer or the things we are no longer able to do. The little things like bend over from the waist or run in a local race. My heart goes out to all the suffers.
Sincerely, Howard
Rick Gatje said:
Howard do you have contact information for Camille. I would like to find out if she has a list started and I would like to be on it. I have a voice mail from my doctor saying that he does a revision a month. If every doctor averages one a month I would wonder how many failures are out there.
Then he did not even know about my revision because he didn’t take my insurance anymore so I had to get someone else and I was his first revision.
mickeypamo said:
Rick, do you mind if I cry here? I’m near the end of my inner resources to cope with this. Have had 4 hip ops since 2007 (S&N Resurfacings) and now the 4th (THR), performed on Dec. 1, 2011, has me screeching in pain when I put weight on it. X-rays show nothing. Doc says it’s a matter of strength, so its into the physical therapy pool 1x/wk for 12 wks (which may be helpful). I know my body . . . this 61-year old dancer’s body. I know something is wrong beyond strength. The screeching pain is not normal. I’m so tired of being invalid-ated via labels of bipolar, fibromayalgia, cervical dystonia (looks like parkinson’s) from taking Seroquel (get botox for that), several nasty spinal problems, urinal incontinence . . . all from the transcendent world of dance till I was 50, and from the travails of a typical American dysfunctional family, here I rest, working, contemplating, meditating, trying to embrace all the suffering parts of myself, and bring them home to my Highest Self to be cared for. I guess it ain’t over till the fat lady sings! Thanks for reading. I feel better to write to someone who truly gets our common conditions.
peace,
mickey
Rick Gatje said:
I am glad to lend a sympathetic ear. I also played sports my whole life and at 52 I was told the BHR was perfect for me and I could get back to golf, softball, and other things I love to do, so of course I went for the bi-lateral BHR to fix both my hips. It only took a couple of years to find out that something wasn’t right, but I knew it could not be from the great BHR. After a few years my body just said to get it checked out. And yes I had elevating cobalt levels, psuedo tumors, and more pain then was expected. I had a couple of doctors recommend immediate bi-lateral hip revisions. The first one took about 7 hours and they never could get the cup out. So I now have a cup in a cup supporting my revision and the doctor said we can only hope it holds up (At least it has so far, one good thing). The second revision went with out problems, but it has now been a year since the revisions and I have not had a minute without pain in both hips and thighs. I like to sleep on my sides, but it feels like I am sleeping on a tennis ball in my side. This is definitely not I was expecting nor what I was promised by my doctor. I can feel for each and everyone of my fellow sufferers. Good luck and health to all of us.
mickey morgan said:
Ah, Camille . . . I am so sorry for your suffering. I know it exactly because your story is mine! Put me on your list. Let me know if I can help, I have a lawyer son working in the Dept. of Homeland Security, and a daughter-in-law at the EPA. I have a rare and significant relationship with Jeffrey Toobin of CNN (his wife came to see her father die . . . his partner of 39 years requested me. What about going after the CEO? Then use your and mine social media to toot loud and wide about how we’ve been betrayed and wrecked.
Cincinnati 45206
p.s. see several posts back about my twin story to yours at http://HarknessBallet.wordpress.com
p.s.s. also, for more possible victims, see dancerhips.com
malenurseken said:
hang in there Mickey. Youll dance again one day!
malenurseken said:
My hip replacement isnt a birmingham! Its DEPUY! Metal stem ceramic head! But never did turn out good after the surgery! Terrible pain! Can hardly walk! Not able to work anymore even! Whole leg! Not just hip! Heard Depuy implants banned in UK! Why not here? Because of rebates Drs get? Taxes? Politics? My life is ruined! Recently aproved for SSD! IM A CONSERVATIVE! But cant seem to fight the system! Im just a grain of sand!
mickey morgan said:
No, dear one, you are not a grain of sand. You have an opportunity to grow spiritually by all your suffering. There is a reason for it. You must be strong, because you have a purpose. You are needed by the world. It’s up to you to find out what that need is that only you can provide.
peace amongst all, respect amongst all,
mickey
malenurseken said:
Thanks! I had a hip biopsy last week! Aspiration! DR called about an hour ago. Told me test was negative now he needs another clinic visit to re-evaluate me! IM afraid its his way out of doing the exploratory surgery he agreed to do before my biopsy! Im so done after that! I cant Dr hunt anymore! Or depend on any! If that happens! Past experience i cant help being pessimistic!
Katie Kingsley said:
Hi Camille,
My heart goes out to you! Thank you for submitting this to Earl. You know you can add my name to the list although for me, the SOL has tolled. Hope and pray that you are having more good days than bad. Katie
Camille Petrillo said:
Hi Katie, Gosh, forgive me if I didn’t reply to this! I am lucky, I am feeling good now because I have a brilliant surgeon, but it was a very tough road back How are you and your family? I think of you often. (Spending lots of time in Ca these days.) Thank you for your compassion and support! Wishing you hugs and love, Cami
Connie said:
Hi Camille, I’m a BHR gal… Revisions due to pain and metallosis. Had major cognition issues until well after the revisions were done. I’m still out of work. It has been a long haul. add my name to the list… I’m one year into the SOL, 2 to go. I’m not holding my breath– hang in, stay well.
Camille Petrillo said:
Thanks Connie, I hope you are doing well, too! I don’t have your contact info for my list. You can send it to: . And also call me anytime, 631 838-8451.
We need to get this list going soon. Write to the UK firm, Irwin Mitchell, in Ear’s post a few days ago. <y atty thinks we have a good shot teaming up with them. They need US names! Thanks, so much. Be Well!! Cami
Collin said:
One thing to do would be make a documentary movie about smith & nephews.
mickeypamo said:
Good idea . . . you’d need a good investigative reporter and a good documentary filmmaker. Any ideas who? Reasonably . . .
mickeypamo said:
Wait a minute! I know who could do a documentary! A dear friend of mine who is also running fro Congress locally in the 1st district, run a media company, is a progressive good guy. Look up Jim Prues at Panoptica Media in Cincinnati. I’m goin’ so slow these days (maybe fractured my 4th hip op via Smith & nephew resurfacings . . . you know the story). I’ll try to run it by Jim. Somebody needs to be willing to take on the collection of victims’ contact info. EARL! We need you! Can you pass on the relevant contacts. We need a hub like you are to all.
peace,
mickey morgan
Camille Petrillo said:
Hi Mickey, yes, I think a doc would be great! Or if we could pitch our story to ‘Dateline,’ ’20/20,’ or, ’60 Minutes,'( more cost effective) Ironically, I originally heard about the BHR on a 60 minutes segment, how it was a far more superior product for younger, more athletic people. It may make them look ad, but I am going to approach them, too. I had a friend who was a producer at Dateline, but I think she is no longer there. I have to get on this I wrote once to Barry Meier, from the NY Times, but he never responded. He is the health editor and has written many articles on the Dupuy. We have to use all our resources! Mickey, I hope you are feeling better. xo
In the meantime, I would like full names, addresses and phone numbers, if you can mail them over to me at:
Thanks, Feel Well!!
Camille Petrillo said:
Yes, we could do that. Colin, are you in the UK? I hope you are doing well
Connie Marotta said:
I’m in!! (BHR victim) I have been wondering how to get this going too. My first thought is to reverse the pma! Maybe a petition to start?? I don’t think we can even find out the number of victims of the BHR there are! Smith and Nephew, the criminals, are sitting just as happy as can be – they won’t give any information and NO SURPRISE the FDA does not respond! Not sure how we can get their attention. It is sickening to think they are still putting these in. I couldn’t believe the doctor who put mine in (Snyder) didn’t let me know the dangers before the surgery (2008) or at least have the moral ethics to tell those of us who did get the BHR to get our blood levels checked – he did nothing. I blame him too because when he knew that his patients were going to suffer something terrible he sided with Smith and Nephew (the criminals).
Thanks for getting us started Camille. I feel the exact same way you do, but left feeling helpless – true victims of an absolute medical failure. I think getting the information out even to help others who still have this poison device in them is worth it. They don’t realize the damage it is doing to their bodies because the doctors are not telling them. So sad.
Camille Petrillo said:
Connie, I want to add one more thing. i am truly appalled that when you received your BHR in 2008, they did not caution you and urge you to follow up with blood metal testing, xrays, and MRI’S!! I had mine done in 2005, and my surgeons claim was that they didn’t know then what they know now, but yet, he didn’t issue warning from his data base to all the hundreds and hundreds of people he implanted. But by 2008, everyone, including Smith and Nephew knew much more. Ironically, my BHR didn’t become symptomatic until 2012, and i never saw anything, either about getting metals tested or xrays, then it was too late. I was told by my first surgeon my device was failing for a long time, tho no indication of pain. You’d think there would have been public statements announced. But, I am still stunned by your doctor’s
actions and negligence! He should have his license revoked. I cannot even file claim against my first surgeon, who totally messed up my revision. Be Well, Hope to Write and speak soon
By the way, I am totally interested in speaking with the LA atty who wants to try to get the PMA reversed. Count me in on paying him, too. Can you forward me his info/ Thanks, Connie! xo
Connie Marotta said:
Also, I do know of a lawyer who has friends/family in the Hollywood area and he also is suggesting to do a documentary. His firm had dropped all BHR cases but he is willing himself (and has since left his firm) to help to get the pma reversed (it has been done before in other medical situations). The thing is, we would have to pay him for his time (understandably). But, if there are a number of us then we could bring the cost down. I wanted to do what Camille did with rallying people but I didn’t know how to get a “list” of the BHR victims! I actually attempted to get ahold of Smith and Nephew in the states and they said, “no one has complained about the mom device!” (then went on asking me if I’d give them the sticker numbers from the mom device I had – HA!) It made me so mad that they actually called me back that I was shaking – it’s like you want this horror show to just go away and not deal with it but Camille is right. We have to organize ourselves and fight – the FDA in our country is a complete joke – money talks – not victims.
Camille Petrillo said:
Dear Connie,
Please forgive me for not replying to this until now. Your ideas are brilliant, and right on. My atty also says getting the PMA reversed is the only way. This could take a long time, and I completely agree with you–The FDA is not only a joke, it is corrupt, like many gov organisations. Pay-offs, kick-backs. I called the FDA yesterday, and tried to make a Face-to-Face meeting and I was told it was not possible!
Please provide me your complete contact info, if you would–including address and phone number, date and place of your BHR. You can mail it to:
In the meantime, though the FDA says they have a registrar, through MEDWATCH, and Consumer Complaint, I have no idea what they are doing with it, we can’t gather any info. I actually got a call from the hospital in which i had my first revision–which was failure. it is a top orthopedic hospital in this country–Hospital for Special Surgery. The woman calling said she was checking in to see how my revision went, and i had to tell her my doctor–who is a renowned Hip Surgeon, totally screwed up my revision, and I had another successful surgery at a different hospital. But she said that she is reporting all failures to the FDA–huh! I doubt it.
Yes, we need that petition–I will personally bring it to Congress and the FDA, but we need it–we need names. If you know any other sufferers, lease inform me.
I hope you are feeling well. Thanks, Connie! All The Best, Cami
Jill Cleggett said:
Add me to this list-Jill Cleggett from NZ . Like Marlenursken, I have (still the same torturous device of nearly ten years) .a DEPUY ceramic/titanium coated cup, with a metal stem, far too long for my small frame. Also identical, the neurolgical l pain is contantly in the 10/11 range especially at night. Cannot walk far, can achieve nothing of my former life and lifestyle.and with high toxic metal lab tests, that were attempted to be hidden from me. My Case before the Court, waiting the outcome requested, to overturn the rulings of our ACC Medical Misadventure system, in my favour as is warranted, and , after being pushed into silence ‘legally’ for SO long, but have worked over board to remain Self Represnted, against the mighty weight of our ACC system, which appears to deliberately continue to go on and on, trying to wriggle out of decent compensation OR further treatment. (Full leg amputation was offered 3 years ago, as the unyielding pain, with multiple oxidative stress, nerve damage, and Iron anaemia, affecting previous healthy kidneys. There can be no excuse for these surgeons to ‘continue’ to put failed devices, that don’t seat well, and destroy tissue, muscle and leave the horror debris, inside,with leaving the victim of finding appropriate alternative treatments ‘ to counteract the toxities,whilst with every step I feel the stem, which sends my poor tired dancers leg, wasting away, with regular seizure,spams and violent jerks (Palsy) Whenever the the leg is tired,after attempting to achieve too much. I still wish to recapture ‘SOME’ of my past lifestyle,the only reward being ‘Finally recognition’ of the damage done ;Full body Impairments, ignored consistently by assesors some judges,and the the corrupt aspect of protecting surgeon stuff ups,by our ACC system, with wrong choices of cup and stem, glued in with Bone Cement Syndrome. Meantime surgical team, get a slap over the hand, whilst they earn?? their big dollars, and zealously work overtime to silence the Truth, when its provable beyond any reasonable doubt. Still reeling from the complaint lodged recently to the Human Rights Commission, who vaguely asks, how has this HARMED me. This I have to answer in Privacy Week, as the humiity of being forced to relay the most Intimate detail of ones life, which should have remained sacred only to those that I wanted to share with, , not carelessly thrown around by breeching The Privacy Act.and how does one rate and portray ‘Significant damage’ without sounding over emotive. .
Count me in collectively. Many voices are better than one. Systemic pseudo tumours.
9 half year of infections, and healthy kidneys taking the toxic overload, and suffer still from Iron Anemia, . United we stand, , as eaxh one of us has endured and suffered, in their own individual way. Always Thanks to earl for finding me, Thanks to the wonderful professionals who have stood behind me, in my quest for TRUTH and JUSTICE.Thanks to everyone whose heart and souls heart and have poured out into this blog, to make it, what it is today, and the belief, that whilst their is Life, there is always Hope.
Jill.Nz.
malenurseken said:
Oh Jill I hear you! Im so sorry! YES I am in same boat! The metal stem going down my femur, I can feel it! Whole thigh hurts! Knee hurts! Ankle hurts! Groin hurts! Testicles! Pelvis! They say metal and ceramic is excelent choice of implant? Why so many with problems? They GLUED my stem in too! BUT I do feel it hasnt held! I do think my stem is moving up and down when I walk! IN my femur! Causing the total leg pain I have! I dont dare try to turn around with any weight on that leg! Ive learned how to walk and stand that is less painful! Last tuesday after my hip biopsy the DR that did the procedure asked me afterwards why i walk like I do! DUMB ASS! I told him cuz of PAIN! And my hip makes popping noise when I walk! THAT causes pain! I do feel for you! Keep in touch! We need to all stick together! Ill see what my DR says after next appt! After his RE-EVALUATION!!
Jill Cleggett said:
Hi-When you next see your Orthopaedic specialist-get him to check for femoral palsy, and the associated problems this brings, with ‘walking, standing, Too much activity on a leg, that has suffered accordingly. (Mine turns blue intermittently, as nerve and blood supply were ‘cut off’ for too long), adding to the list of ‘permanent Impairments’ basically from overuse of retractors,in the leg lengthening/leg shortening process, coupled with overtightening of the femoral capsule before they throw in the cement-that hides a multitude of sins, and in my own case currently before the courts. was AGAINST consent, and against AGREED ‘no bone cement’ and no leg lengthening (A known discrepancy in my favour.) All the above lead to Unusual (derainged Gait) I was a precision mover, a lifetime dancer prior to this not needed procedure ‘at the time’ as x-ray results show early changes, and discussion indicated ‘IF needed would be 7-8 years away. Surgeon convinced me otherwise, and indicated ‘advanced and urgent’.
(A long story of co-ersion into a procedure not needed OR wanted, at the time)
but your symptoms sound identical to my own, and I strongly suspect, this is what has happened to you. I cannot balance, fall repeatively, and sustain regularl additional repeated injuries. ALL these permanent impairments one is supposed to ‘adapt to’ but its quite feat, to master the simple act of walking. Special shoes are my biggest
clothing expense. nearly ten years on, and the financial, physical, emotional burden also becomes crippling, in a country where we cannot sue the surgical team.Dont let this happen to you. The long, hard quest in ‘proving’ my Case, is worth it, if someone else can benefit from my experience’s. Wishing you best of Luck, Best Wishes in regaining your life.by becoming Patient Empowered, and sharing on Earls Blog.
Welcome to keep in touch privately, if I can help in any way. (Ps The sciatic nerve, and peronneal nerves are likely to be affected also.) I have resumed yoga excercises
and if you can hold your balance long enough? Tai Chai is a definite light, relaxing exercise that causes no pain. Cheers
Camille Petrillo said:
Dear M,
I am so sorry to hear all the pain you are going through! May I have your contact info? Including address, and phone number? If so, please mail it to,
I am glad you are doing yoga and Tai Chi. yes, balancing is a big one to strengthen the muscles and the bones, and revive the nerves. Be sure to press your feet firmly into the ground—root as much of the bones of your feet as you can, esp the metatarsals. And even weight on the medial and lateral sides of your feet. Try to spread your toes. Then, try to engage your muscles into your bones, especially your inner thighs and muscles underneath your buttocks. Keep your core strong and lifted–you know this from Tai Chi–the importance of the Dantian– and lift up from the pelvic floor, and the torso, relax down your ribcage, shoulders, elongate your neck, lifting from the back of the neck (without lifting scapula off the back, and lift from the top of the head. And keep a steady gaze and feel the focus, bliss, energy. I have a 45 year yoga practice and have taught all over the world. Yoga is restoring my body that walked on elbow crutches and lived in horrific pain for 3 years to health. I have been very lucky. I wish we could all zap all of your pains away! Take Care!!
Camille Petrillo said:
Dear Jill, I am just seeing and reading this! I am so, so suffering for what you have been through and are going through! Please write to the firm Earl posted a few days ago, IrwinMitchell–they will do a global claim against Smith and Nephew if they have enough names. I mean, I believe this to be so, they are requesting US BHR citzens with failures. It look positive to you in NZ, iI think, once suit is filed in UK.
Meanwhile, Oh man, what you have been through really SUCKS! I feel such compassion. Please leave me your detailed contact information at:
My heart is with you, and wishing you the very best! xo
Susan Taylor-Hach said:
I would like to say thank you to all that have validated what I am going through. I had a BH resurfacing in 2010, that required revision in December 2012. I am actually a registered advance nurse practitioner, but in neonatology, so, I too. feel very duped by the Ortho world. I am small boned and have pretty bad osteoporosis, and was told I was bone on bone prior to my resurfacing. Now I know that my arthritis was not that bad and osteoporosis is a contraindication for resurfacing. Have been out of work since the revision. Contacted many local attorneys. but none have the balls to go up against the Cleveland Clinic and Dr Peter Brooks. There is an attorney in Texas that took my information and is planning a class action against the S&N crooks. Count me in!
Connie said:
Susan, is your Texas attorney looking for other S&N victims?
Susan Taylor-Hach said:
Just asked yesterday…will let you know
malenurseken said:
Gd luck with that Susan! Keep us informed!
Camille Petrillo said:
Dear Susan,
I can’t believe they would implant a small-boned woman with a BHR, esp with your osteo! The Cleveland Clinic? Shocking, and that you can’t sue them. I can’t file claim at my first revision hospital, also a famous hospital, Special Surgery in New York, for pretty much the same reason. Famous surgeon, famous hospital. Have you gone to the biggest, biggest law firms? It could be tricky. If there is enough in it for them, ie, a wealthy hospital like CC, they will pursue it, if they know they could win. But I have also found some of the biggest firms will stay away from renowned institutions, if they have any doubt in the decision ending in your favour.
Please sign the UK list at the Mitchell Firm, posted on Earl’s site a few days ago. They want US names, and my US atty wants to connect with them, for he feels it is the only way we here in America can litigate. and PLEASE give me your complete info, including address and phone number to;
And yes, do keep us posted on the Texas atty. As I have understood from my atty, as it stands now, because of the preemption, there could actually be sanctions asserted upon the Plaintiffs for trying to litigate Smith and Nephew at this time.
Most importantly, Keep Strong, and I am wishing you healing every day! xo
Rick Gatje said:
My horror story is not as bad as everyone, but I did have revisions on both hips because of the S & N system. I still have the original cup in my left hip because they could not remove it after a 7 hour surgery. I had the psuedo tumors and cobalt levels on the rise and am also disgusted that we all have to suffer daily because of this faulty system. Put my name on the list
Rick G
PSL, FL
Rick Gatje said:
Where can I find the list to sign. I would like to see how many people are signing the list. I would like to be on it, do I have to do anything
malenurseken said:
I dont know Rick! I never saw a list either! Hoping im added! Whether I see it or not isnt that important to me. I just want to be part of a support group! Even if its just here on this blog!
Camille Petrillo said:
Dear Rick,
Sorry it has taken me so long to reply. i am just seeing all these messages, I don’t know why I didn’t get them in my e-mail. I am getting the list going now. I am requesting people mail their info to me, including full address, phone number, date of BHR, hospital at:
i hope you are doing better, and i look forward to pursuing our quest with you! Thanks! Alos sign the list from the UK firm that Earl Posted a few days ago–Irwin Mitchell. My atty thinks we have a good shot of connecting with them and litigating S & N there, till the preemption law is changed. Look forward to hearing from you, thanks, Camille
You can also call me at 631 838-8451
malenurseken said:
Camille! That sounds like what I just experienced! Messages didnt come through in my email! Notifications whatever. Wonder why?
Ed Larsen said:
Dear Camille, My thoughts are with you and having most relevant issues with BHR myself, I support any and all efforts to seek justice from S&N!.
I previously wrote into Earl’s View in 2012 with all of my experiences following BHR MOM device fiasco:
Ed Confirms that S&N BHR MoM’s are Ticking Bombs… by earlstevens58 I applaud your compilation of experiences and data on issues with Smith & Nephew BHR (resurfacing) MOM implants..
I too have similar experience to share in the hope FDA and the medical community begin to wake up and address the issues…
My initial BHR resurfacing was done in August 2009 by one of the leading surgeons for the same in the NY/NJ metropolitan area…In April of 2012, ONLY as a result of reading and seeing class action suits evolve, I became concerned about the possibilities of cobalt/chromium toxicity in the case of MOM devices and subsequent recalls of MOMhip replacements such as the J&J product and elected to have my blood tested ….I found my levels were literally off the charts!
I had NO symptoms of this wear and device failure at that point while having alarmingly high levels of cobalt & chromium, that is the scary part..People can have this toxic blood poisoning w/o knowing for years! A ticking time bomb.
Fast forwarding to July of 2012 and following having a MARS ( MAVRIC) specialty MRI at the NYC Orthopedic, “Hospital for Special Surgery” which detected the presence of metal debris, beginnings of tissue damage and bone erosion it was validated the device was failing after less than 3 years! The solution, a DO OVER..extract the device and have a total MOP hip replacement..This is now scheduled for December.
During my last consult with the original surgeon, he confided that his confidence in the Smith & Nephew BHR ( Birmingham Hip resurfacing) was definitely shaken and questioned just how many patients out there since 2006 would show evidence of this problem if they in fact did have their blood tested for Cobalt & Chromium. As of July of this year he was NOT taking on any new patients for this hip resurfacing and it is my understanding that the #1 surgeon at the Hospital for Special Surgery ( relative to #’s of devices implanted) has also subsequently discontinued performing this surgery as well.
Unfortunately, this could be the tip of the iceberg for this problem and I encourage all BHR patients take the initiative in the interest of self advocacy to have their blood tested because there is NO present medical or post surgery protocol to monitor cobalt/chromium levels for patients having these MOM devices.
Ed Larsen
Ed Larsen
Camille Petrillo said:
Dear Ed,
Thank you for your reply, and I am so sorry t hear about your horrible experience with the Birmingham, as well. My first revision surgeon at Hospital for Special Surgery was Edwin Su. He was (and is) the ringleader there for BHR, so, I am curious who this other surgeon is–not saying Ed was the only one doing resurfacing. I also had the MARS test at HSS, and like you, off the charts, but I had already become symptomatic, having lapsed into severe pain before my metals were tested at any capacity. Encouraging people to have their metals tested is certainly the right idea, and it befuddles me that the FDA issued a cautionary statement for MoM patients to have their metals tested, but WHERE do people who may not know this actually access it? I had the device in my body for over six years before I had great pain–all those six vital years eating away–and I never heard any big loudspeaker announcement from the FDA.
I am a bit confused. Did you have your revision surgery, or is it scheduled for next Dec? (You mentioned you had the diagnostic testing at HSS in 2012.) We have got to get these doctors to come forth, too. They are the direct witnesses–we are the direct victims. I am also amazed, there is no data on calculating the amount of failures from a defective device, to a central unit like the FDA.
Like you mention, Earl has done a stellar job at compiling information on MoM implants, and safeguarding those who may not realize it is vital to have their metals regularly checked. Now, we have to be POLITICIANS–we have to sell people on the demerits of these ghastly products, and we have to sell the bureaucracy on US–what we have endured, and that which we will no longer endure and accept.
Be Well, hope to talk to you soon. Camille
Camille Petrillo said:
Dear Ed, How are you doing? Please contact me at: and give me all your info, including date BHR was implanted, hospital, complete address and phone number, if you don’t mind. I also want to talk to you about Special Surgery. feel free to call me anytime 631 838-8451
Also, please add your name to the UK firm, IrwinMitchell, that Earl posted a few days ago. My atty thinks we have a good shot of litigating through them in the UK.
I hope you are feeling well. Please contact me, Warmly, Camille
Andy said:
Hi Camille
Wow. Thanks for voicing this. You are being heard and I for one, agree that we need action.
I am in Australia and a female BHR sufferer with cobalt levels of 809 nmol/L and chromium of 1361 nmol/L. I am waiting on my revision, which was unfortunately cancelled due to an unrelated infection…but I believe that we do need to unite and to speak loudly. I agree there needs to be a list, a petition, whatever it is and global at that. It is the only way anyone will know what is going on. Media is an option.
In Australia, a program called Four Corners, high profile, serious journalism ran a story on the failure of the ASR which many saw and it had a huge impact. Is this a good follow-up story/avenue for Australia? Who would do it in the US. Have individual cases of BHR been reported to the Therapeutic Goods Administration TGA in Australia? Individuals can report, not just doctors. Imagine if one one day at a specific time we all sent in our downloaded reports of BHR device failure this would get – these reports have to be investigated once reported.
Earl, you are in Australia aren’t you? How can we get all the Aussies together as one voice (acknowledging already the amazing job you have done bringing all of these voices together so far) and doing something like reporting to the TGA? We need a planned campaign – I for one would be willing and have some skills to assist with that in Australia and perhaps in other countries we need similar champions, all running planned campaigns in tandem. It is possible…
I phoned S & N in December and surprisingly got a called back from a senior person in Australia. I have a letter from him, saying that that do not compensate, they would consider my case if they had my medical history and, as I still have the implant in-situ, it could be sent to them for examination as part of the case. I haven’t followed up on this and I feel that legal advice, before I release my medical records, let alone the implant ( which might be better going to TGA), would be wise.
I am on board and willing to commit time and energy – what have we all got to lose? Everything to gain?
Best to everyone Andy
Connie Marotta said:
Andy, don’t send them the device/medical records! They are only trying to cover their own asses – they do not care about us (money!). They tried to do the same to me and it left me shaking – I can’t believe they have no remorse for leaving us the way they are. They are not to be trusted!
Camille Petrillo said:
Dear Andy, WOW! So much I want to say, but just wanted to touch base, sleep calls. Your ideas are brilliant–will write more tomorrow–thank you for your passion and your energy! And, yes–Connie, you are right–don’t send the bastards anything–they are not to be trusted! More Soon! Thank You SOOOO much! I see this synergy creating, and I feel so charged! Cami
malenurseken said:
have a good weekend everyone
mickeypamo said:
Yes, it is good for us all to conciously take deep breaths from the belly and truly relax in quiet, just watching and feeling the good air moving in and out of you in an infinity sign. Counting them helps to be still. 5 mins.? be kind to yourself, . . . and others, mickey
mickey morgan Cincinnati, OH 45206
http://WordsofaWanderingDakini.wordpress.com http://OleagaPhotoGallery.wordpress.com http://KarmaLifeReadings.wordpress.com http://TheKarmaPress.com http://HarknessBallet.wordpress.com
Camille Petrillo said:
Dear Andy,
How are you doing? i love your idea of joint downloads! I am going to appeal to our US programs, 20/20, 60 Minutes, and Dateline, as well as any other venue who will do an expose’ I can think of. We do have to unite and be strong! Can you please add your name to the UK firm that Earl posted on his site a few days ago? IrwinMitchell. They seem to be the firm firm to take on S7N, and although they expressed interest in US citizens, I am sure they compile global lists and litigate with all the numbers of us they have. And please send me your complete info: address, phone, date of implant, hospital. Send to:
And please, take care, Andy! thinking of you, Darlin’! Much Good Healing
Andy said:
Oh and thanks Ed. I totally agree with a wave of mandatory cobalt chromium screening for all MoM hip recipients. I have a letter ready to go to the Australian Orthopeadic association saying the same. Perhaps we need to bombard this idea via letter, petition to all relevant governing bodies in each country? That’s the only way we, or they, will really know the extent of this problem. Seems like a glaring omission to me. We are all angry about what’s happening. Let’s channel it into something positive.
By the way, I have never been a crusader and am surprising myself by how I feel about the injustice of all this. Think Erin Brocovitch, Aussies, think The Castle…
Bedtime Andy
karen said:
Add my name to the list.
I’m an Aussie female whose BHR was implanted 2006.. I have shared some of my experiences before but to put it briefly….had my cobalt /chromium levels checked in 2011 due to the publicity surrounding Depuy. Levels also off the chart and immediate revision arranged.Lots of metallosis and muscle loss.The procedure involved a bone graft for my dissolving pelvis, a full hip replacement, leg lengthening and a metal plate inserted to keep everything together.
After 8 weeks on crutches still could not walk as I apparently had a stress fracture in my foot.. Eventually returned to work only to experience more pain in my hip. Had bone density tests and an aspiration of the hip which saw me in emergency in 2013 for yet another hip replacement…this time cement. I still experience pain and consume bucketloads of painkillers.
I too am a small boned female and was 49 at the time of the initial operation.It has dramatically reduced my quality of life..
So………..lets do something about it !!
Camille Petrillo said:
Oh, Dear Karen, I am so sorry! We are gong to be such a strong force–I feel it! All the ideas are wonderful. We need to create outlines for our strategies–Media, Attorneys, Government Organisations, Doctors. We need to verbally spread our plight to as many people as we could. I find when I tell someone, I hear in response, “I know someone who also got poisoned by a MoM device.” Or, as my PT relayed to me the other day, “I have a patient who had the BHR (she has more than several) and he just wants to run and run marathons, for he believes he got a great device for himself, being an athlete. But, he is in so much pain but in denial about it . . .” stuff like that. The more media attention we get–the more people who do not come forward because they just deal with it, or more so, do NOT deal with it, just fix or hope to fix it, or try to hide, by the thought of being public about what they had been through–will be inspired by us and come forward as well.
I hope you feel better! Cami
Camille Petrillo said:
Dear Karen,
How are you feeling? better, I hope. PLEASE add your name to the UK firm, IrwinMitchell, that Earl posted on his site a few days ago. They would be most interested and are taking on s&N there.. The more cases they have, the stronger they will pursue. And PLEASE send all your info (including full address, date of surgery, hospital, phone, over to me at:
My heart is with you, I completely understand your pain and distress. It’s incredible, but not surprising, because I know mine were probably the same, had I had them checked, that your blood metals were off the charts, and you had no symptoms of pain. By the time I lapsed into pain, it was too late. But, what you went through afterward, having the insight to get your metals checked and have the implant removed, but it still caused all this damage, and your revision did not fare well. How is the latest revision doing? Thinking of You! Take Care, Cami
malenurseken said:
Thanks Jil! YES it all does sound the same! My body compensates for the pain in way i walk!
i been asked why my head and body tilts left when i walk! Its obvious anyone knowing anything about it. Its to maintain balance and lessen the weight on the RT leg! Id love to keep in touch private! But how? Give out emaill address here for everyone to see?
Jill Cleggett said:
Hi- Thought it was on this Blog, but is . If not already in Earls catalogue, I can give phone contact via email. A collective registry is also needed. Interesting to note I am barred from the Injury Board in the states, but have had contact with them and Universities, globally. Some information I have managed to keep, and is under lock and key, until required. My own case involved a Huge element of Medical Misadventure, , so cannot be in 2 camps at once, until a resolution from this.
When their is a data base, I will do the Erin Brokivitch, that this country needs fpr the FDA to allow our non ethical surgeons to purchase in bulk, what was rejected by country of purchase. I have media very interested, although not overly keen to go down that avenue-would if I had to.I deemed this the biggest medical mistake, globally of the last decade’ and I stand by that comment. Its amazing how many attempt to silence you. I have learned from earl, and Law study, that one has to be so very careful with chosen words to express.and repeaditively accused of psychological overplay…… I feel sure you have Femoral Palsy and femoral ante-version. and like others on this Blog, difficult to get GP’s that were so dissmisive from the outset. Their is no part of your life that don’t dissect, to find in their favour. They do ALL stick together when the ‘One of their own’ are under scrutiny. Truth and Justice will prevail ultimately. Don’t give up, we can all be of assistance to each other.
Jill.NZ
Camille Petrillo said:
BRAVO, JILL! Brilliantly Put! xo
malenurseken said:
What is femoral palsy? Never heard of it! My lower leg (ankle area) turns blue too! And pitting edema! Push finger into flesh and leaves a dent! for those who dont know.
Jill Cleggett said:
yYou have acutr/chronis ‘inflammation’ that is par for the course, following Trauma Surgery,and/or toxic overload from Bone Cement leaving your kidneys or lungs too often taking the brunt, with toxic overload. Bone cement has a lot to answer for,and certainely not suited for every recipient, with too often generic devices from to0 many manufacturers and why I requested NO CEMENT. I wear compression banadages, and braces, around the hip, knee and ankle.With the need for legs elevated, frequently. Mine was passed off, as mild idiopathic oedema, but is cover up, for
wrong size prosthesis for small boned, small framed body type, It is imperitive that you have, Lab tests, testing for
not just what is ‘visibly evident’ but testing for that ‘which kills silently,and is too often the ‘bone cement syndrome’ that in my own case I had requested NO CEMENT. This was AGRRED to, but surgeon in haste and speed, 7 hours later then scheduled
Took the quick and easy way out, against CHARTERED INFORMATION
and X-Ray results, and brief discussion.. It was my then Healthy kidneys took the brunt. Will put what I can, into your newest suppled Hotmail address, that is indictitve ‘specifically’ to the Duron Cup and stem prosthesis and with lateral positioning procedure.
Best Luck everyone. Please read more backdated info on this blog, as many co-operative Law Firms globally are mentioned. specifically around the 2011/2012.time frame. Will post ‘At a later date’the ‘bones’ of the all telling to-from communication I have had, with manufacturer, that would NOT be made available now in todays climate. You are right” That far too many basic healthcare providors, have not got the balls to put their money where their mouth is. Too afraid to be held accountable. To those that have, I admire immensely, but you can count on one hand, those that will and have. The ethical humanitarians of the Orthopaedic affiliated world. huddle together and are as much responsible for our collective pain and suffering as the device manufactures.. The Resistry is long overdue’
Jill.Nz
malenurseken said:
I do feel for all of you! Ed! Andy! Karen! Jill! ….. life sucks when your forced to live with those medical mistakes/problems! And others just dont understand what you are going through! I wish im dead many times!
malenurseken said:
I will try to ask my Dr to check for femoral palsy! Or ante-version. Im having difficulty with that link Jill!
Jill Cleggett said:
M My mail is always ‘Tracked’ I am on Skype, in name of Jill cleggett, with many postings on Earls Blog, in the 2011/2012 time frame. ‘My Experiemces with the manufacturer of, and our acc (American Law) system, when we follow English Tort Law, and cannot Sue.
Doubt the average GP would assist-They are not skilled based enough,to recoginze the ‘rare and severe 1per cent category ( One in every one thousand proceedures where surgeon ‘ lack of training,in seating our Durom cupe which is known not seat well, a MUST is
The need to see ;Independent Orthopaedic, or muscoskelital specialist. The Mayo Clinic, Harvard, St Lukes, Boxhill Ortha paedic in Australia are ‘Tops’, with statistics putting this rare adverse event at 1 in 1000 hip/knee replacement surgeries. Muscle wastage and shrinkage almost always accompanies this, and nerve biopsies, nerve conduction tests, neorolgist are in the category of assistance in diagnosis. phone 0223003915nz should reach me, if email tracking throws you from linking to me. 2nd Opinions are a must,initially. Hope to be of help. REGISTRY in Australia and new Zealand Zealand is a MUST, as so many have pointed out.Earl and I both have guest memebership, to Medscape, Science Direct, Elsvier etc. If you live in OZ-Earl best person, Sadwin in the states, Try me via skype if all else fails. Its a long road to stable recovery and then follows the fight for justice. All on this site will be walking that walk with you.
Jill NZ
H
malenurseken said:
I asked my Dr last tuesday about femoral palsy and ante-version. He had no comment about the femoral palsy. And the Ante-version his comment was that is to do with the anatomical position of femur and we dont see that on xrays! My reply was that perhaps lying still on an xray table shows the femur in anatomically normal position BUT anatomically INCORRECT when im walking and bearing weight on the leg! No reply from him.
Camille Petrillo said:
Boy, you know your stuff–thank you for giving so much of your time and energy–I am learning much from you. You are a true inspiration–along with Earl and Howard, of course
malenurseken said:
The Dr I saw in St Cloud Minnesota said i can try finding a DR at Mayo Clinic who will help me but he DOUBTS anyone at Mayo will do anything different than he did! Or agree that anything even needs to be done! And Thank You!
Connie said:
Oops….!
malenurseken said:
he said we all went to same school. Im thinking what he didnt tell me was that HE would contact Mayo and make sure im rejected! My daughter was with me. In St cloud! She got same idea from his message. In other words go try! I know the Drs there! your F&*ked!
Camille Petrillo said:
I can say with all confidence, I have one of the most STELLAR doctors in the world–Patrick Meere, at NYU’s Langone. He is quite renowned, but very low-key. he is not only a brilliant surgeon, but also a spectacular doctor and human being, and you know the difference.
New York’s Hospital for Special Surgery is, by many reports, voted number one Orthopeadic hospital in the united States. I went for my first revision there, with one of it’s highly publicized hotshots, Edwin Su, and he not only runs his office like meat market, he was under qualified to do my gross revision, led me to believe I had to accept my fate, and would never walk without pane a cane or crutches again, and that I had permanent tissue damage. I had the most painful rehab with him, and the hip fractured after four months of his insisting I place more weight upon it to stimulate the bone graft–he didn’t even come into the office that day.
Patrick does not work with a PA. He gives undivided attention to every patient. He used to call me from his mobile phone at 9:30 at night, on his way home from his office or surgery, to give my diagnostic results. I NEVER even had my test results given to me by Su at Special Surgery–I had to beg the radiology and hemo depts.
Trust me, Meere knows everything about anteversion and retroversion–he looks t the body as a whole. He is truly, truly the most incredible surgeon one can ever hope for, and I URGE you to see him. Google him for his number, and keep me posted! Please Call Him! (I wish I knew your first name–I am not getting it from your e-mail address?)
malenurseken said:
my email
Camille Petrillo said:
Ah, just seeing this–I meant to say from your user name. I mean, I thought it was Ken, but wasn’t sure. Okay, thanks for the e-mail address, too, Ken! Call Meere!!
malenurseken said:
Thanks! for the support! Yes its Ken. And ive never got an email from you yet.
Jill Cleggett said:
Have sent you an email Ken. Now that I know you are in the States. I have mentioned, my best dealings with the manufacturers, the orginal whistle blower, and have just emailed you privately, as whenever I speak out, with helpful knowledge, My computer freezes, I get immediate ‘Locking of my equipment and forced to leave it for awhile. Sounds like Mayo Clinic are attempting to work against you. We all know what that is like, so hope you have received my email,as I recognize ALL your symptoms only too well. 1st steps first-outligned in email. good luck, best wishes. Don’t give up. This is what they want you to do. Becoming Patient Empowered
is the the best avenue you can go down, as a starting point.
Willing to share my to=from correspondence with the manufacturer when the time is right. Its enlightening information.We need that registry, just as we need a registry for surgeons that did not do justice to their patients. compromised their safety, or did not take advantage of the training offered from manufacturer of our particular Device.
You will be feeling very very angry right now, just as I did in 2011, but believe me, our sanity returns we suffer and learn, and then pass on ‘what we can to others and be of help when and where can. I have a sign on my desk.
Never Never Never give up. I have walked in your shoes and the emotional turmoil well. I believe I have become a much nicer person because of it
malenurseken said:
I tried emailing Jil. Dont send for some reason
malenurseken said:
I tried emailing you again too Jil. They never send!
malenurseken said:
Thank you. My new Dr office called this morning. I have another appt for another evaluation next tuesday. And Ill have to check junk folder for your email. Dont recall seeing it in inbox!
malenurseken said:
couldnt find email from you in hotmail junk folder either. Try this account.
Susan Taylor-Hach said:
I’m goingto guess that you are also a nurse, like me. Don’t you feel especially duped?
malenurseken said:
Yes Susan! I do! And when I had my hip aspiration test the nurses were explaining about how everything needs to be sterile! Im sure its standard procedure for all patients! But I told them I knew all about it!
malenurseken said:
and yes susan. Im a nurse too. I remember when my dad was in hospital dying. (he was only 59! I got so pissed off. Dad put his call light on needing to use bathroom! I HEARD the nurse scold him for putting the call light on! Told him YOU HAVE A URINAL! Pee in it! Hehehehe, Dad had a indwelling foley cath! He ended up messing himself cuz the NURSE wanted him to pee in a Urinal while he had a Foley! Cuz they wouldnt give him a bedpan!!!!!!!
mickeypamo said:
Reblogged this on Harkness Ballet and commented:
Calling All Hip-Replacement Dancers: let’s unite
malenurseken said:
im in
Susan Buxton said:
Count me in too. Thanks Camille for getting this started.
I got my BHR in Aug 2007 at the age of 52. It felt great for a year or so. When the pain started, I assumed it was related to my fibromyalgia so I dismissed it. After all, how could it be the implant…..it was going to last 30 years! Besides, I had other health issues cropping up and was spending way too much time with doctors. (Not a clue the implant was affecting my overall health.) Finally, after putting up with the pain for way too long, I contacted my surgeon to have it checked. That was Fall of 2013. I had developed large pseudotumors and had cobalt and chrome levels 50 times normal. My revision was 10 Jan 2014. My surgeon said there was a 15% chance I also had infection. Turned out the infection was massive. Surgeon said it was an allergy to the nickel in the BHR. So I was given a Prostelac, loaded with antibiotics. In addition, I had 6 weeks of both oral and IV antibiotics.
I am scheduled to receive my permanent hip in 2 days, 9 May 2014.
Let me know if I can help in the battle with S&N.
Camille Petrillo said:
Dear Susan, Thank you for sharing, and thank you for your support. My thoughts and heart are with you tomorrow!! You will come through this, Please let us know how you feel. Many blessings, Camille
Camille Petrillo said:
Oh My! I have been out of town for several days and have not checked my e-mail. And now, I apologize, it is late here in NY, and I happened to check my e-mail just to see if anyone had responded to my plea, and I feel so emotional–with a bittersweet sense of overjoy. Certainly not in the suffering, I don’t mean to downplay what we are, or have all been, going through. But in the global sense of unity–of sharing–of not allowing this atrocity to continue. I want to respond to every one of these blessed entries, I shall. Thank You So Much For Your Support! I will begin to compile the list–Earl, I am not sure if you want to do this all upon your site, or if we want to create a group in a place like Facebook, or some database. We can do it through my e-mail–I don’t know, Earl, please share your thoughts. I can start a whole new website, if you want, I just don’t want to inundate you. All of us on the list will individually need to give your name, address, all the details of your surgeries. I see not all the replies were for the BHR, but also, the goal here is for us to appeal to the FDA, and on a universal level–about how these metal on metal implants are severely hurting us, and will continue hurting future patients. I will begin to do extensive research into the channels in which we can present our cases, I will make appointments to present our list to the appropriate officials (oh Gee–sounds so corny,OFFICIALS–yeah these are the people presiding over our WELL-BEING and Health!) We do need exposure on a media level, for sure. I had written once to A New York Times Writer, Barry Meier, who writes lots of things about medical controversies and debacles, particularly Dupuy-I stated my whole case to him, at a time I thought i would never walk properly and be out of pain–but I never heard back. I will try again and again. And call him, as well. He is only one outlet–there are many others. Remember, the more people we have joined up, the more THE OFFICIALS–heeeheee—have no choice but to listen. My direct contact info is:
Camille Petrillo
28 Turtle Pond Rd, Southampton, NY 11968
631 838-8451
Let’s Get The List Going NOW. Earl, Thank You with all my Heart!
Camille Petrillo said:
I want to add one more thing. What many of us were feeling at first–in our shock that this product had actually stripped much of our quality of life–was confusion, anger, questioning. We were sharing lots of stories about our symptoms, about our surgeries–pre and post-op.We were, and still are, one big support group of frightened people–previously brave, but stricken by the realisation that something that was supposed to make us feel better, threatened our well-being. Now, we know all of this–we had no choice but to deal with it, accept it–fight to get better, endure more pain and more surgery. NOW, WE FIGHT FOR JUSTICE. Yes, to The Castle and Erin Brockovich!
Andy said:
Hi Camille great to touch base. Thanks for your reply. So good to know we are all like-minded. I think we all tippy-toe around the medical profession. I know when I mention things about my symptoms which I believe are related to my implant, I get pretty much no reply, as my comment is processed. One of my surgeons did say he felt partly responsible because he put the BHR in. I appreciated that and thought that was a big admission and that I was speaking with someone with heart. How can we be heard? How can we orchestrate it? Let’s keep talking. Let’s be heard. YES indeed to Erin and The Castle. Everything to gain…
Best Andy
malenurseken said:
im glad to be part of support group. 4 more days till my next appt and evaluation! And something else i noticed lately! Wake up with bad back pain during night when I lay on the HIP replacement side!
malenurseken said:
happy moms day moms
Wordpress Linkendin, twitter said:
Sleep and lack of is a huge unpalatable aftermatch of these botched proceedures and devices. Nearly Ten years later I still, cannot sleep on my right side (A lifetime good sleep habit) I sleep on my back, which does often give rise to lower back pain , not known pre my over sized Duron Cup and stem -Zimmer device, that was withdrawn from sale in country of origin.-
that was khnown to be difficult ro seat, when surgeon was urged to train for this technique and did not, . Just one of many aspects of the procedure that he appeared to perform in his sleep, following stopping me from existing, when became obvious he was not going to be able to perform surgery that day. I now sleep in pain and discomfort on my back, often with the affected entire right leg, out of the bed, resting on a stool.Have been researching for years as to how to gain better
sleep and failed. Morphine helps, positioning is elusive. Good matress and pillow essential. Medical answer from the Orthpod world. -Amputate the entire leg. That is the only paid for relief that was available under our system in New Zealand.The need to massage the leg, and get the blood flow going in the morning, is paramount. Every aspect of our collective pain and suffering, needs united effort. Lists are very hard to start in New Zealand, where one is constantly silenced
,Too much all telling factual evidence available to ‘upset the establishment” and forbidden from taking my cse any further.,
I cannot in NZ starta list alone, but anyone with shared experiences, could unite by contacting , and work from there.
United we stand. Having been a lifetime dancer with great flexibility, is of little value now. Sincere wishes to all sufferers.
malenurseken said:
I feel for you! Unbelievable they think total amputation is an option!
Andy said:
Hi Camille and everyone!
Hope you are all doing OK. I think the post by Earl about Irwin Mitchell in the UK who are going to pursue litigation against S & N for BHR femoral head size 42mm or less is a start. I know this is not inclusive of everyone with a BHR, which would be disappointing for those not meeting that criteria. I wonder, seeing as Irwin Mitchell are pursuing it, if this gives the impetus for an Australian law firm (for those of us here) to pursue a similar line.
Anyway, let’s keep the momentum going, like we have all promised each other and keep sharing info.
Best
Andrea
mickeypamo said:
I’m with ya, Andy . . . my two 50mm’s failed. 4ops since 2007. Statute of limitations out. And now my most recent (Dec. 1, 2011) revision is loose in the cup. Gads!
(ms.) mickey morgan
2334 Ashland Ave., #4
Cincinnati, Ohio 45206
2 S&N resurf. ops done by Dr. Suresh Nayak at Mercy Anderson Hospital (2007 & 2008)
2 revisions by Dr. Edward Lim at Christ Hospital
malenurseken said:
Hi everyone! I wish I knew what happened! Its as though this website was blocked from my email for awhile! And yesterday I got 20 of them! At once! I hadnt heard from this blog site for long time! Was it down for awhile? Or is there hackers viewing? Controlling? I still havent had MY surgery! They keep putting it off. I complained! They are going to try getting me in June 30! This month yet! Yea right. So they say! Wish you all the best. Hang in there. HMMM wonder why i wasnt getting updates for so long?
mickeypamo said:
Hey, Malenurseken, if you’re serious about gathering info, here’s mine: my two 50mm’s failed. 4ops since 2007. Statute of limitations out. And now my most recent (Dec. 1, 2011) revision is loose in the cup. Gads!
(ms.) mickey morgan
2334 Ashland Ave., #4
Cincinnati, Ohio 45206
2 S&N resurf. ops done by Dr. Suresh Nayak at Mercy Anderson Hospital (2007 & 2008)
2 revisions by Dr. Edward Lim at Christ Hospital
p.s. Disappearance of posts, etc., happen to me on facebook when I write politely about serious issues for example: I believe Sgt. Bowe Bergdahl to be a Buddhist Conscientious Objector, not a traitor. That got whipped offline as soon as I posted it! You bet, they are getting it all at the NSA
malenurseken said:
Thanks Mickey. And sounds like revision surgerys arent very long lasting. Cant they do another total for you?
malenurseken said:
im having revision this month yet possibly.
Lori Showers said:
I’m Lori from New York. Been frustrated like all of you trying to find a lawyer to represent me. Had the BHR in 2007.Had major surgeries on both my hips in 2000 in Boston,MS, no implants but broken bones & a long recovery to say the least. Years later started having pain in my right hip only to find out I had bone on bone & went for the resurfacing. Its been a long road and now to have to do another surgery is unbelievable. Like all of you been very pissed not being able to find anyone to take my case. If there’s anything a group of us can do, I’m in. My email is . Oh, and I’m 51 and have always been active & try to stay healthy! Just sucks!
mickeypamo said:
Lori, I too am a Smith & Nephew Eat Crow 4 Time Hipster dumped by a lawyer just so my statute would run out . . . been in bed since 2007, may have developed chemically-induced MS, had cobalt poisoning, had doctors lying on med records . . . my own long horror story compounded with the horrible betrayal of the corporate medical pharmaceutical complex. My life has been stolen from me. So, I’m in: mickeypamo at g mail dot com.
We need to find the name of the CEO of Smith & Nephew, and draw him out.
We need to find a lawyer with the courage to contest the federal “pre-emption” status, and hence is used to throw out resurfacing cases (apparently the FDA gave it a more careful inspection . . . so how could it go wrong! I guess we’re all lying). So S&N is hiding behind this pre-emption clause which immediately excludes them from any accountability. Is this sick or what?
mickeypamo said:
Does anyone know of a website that provides surveys? We need a survey of all the S&N Resurfacing victims in order to get together. Or . . . anybody else have a better idea?
ken said:
I had revision surgery August 2014. Had to break my femur to get old stem out. VERY painful. Now I got a new replacement. Stem goes over halfway down my Femur. And I dont think ill ever be good again. Glad I can walk better than i did before the revision. BUT I ruined my knee! That will be next im sure. And I give up on the hip. Ill live this way.
earlstevens58 said:
Check out https://www.surveymonkey.com for designing your own online survey.
Barbara Ford said:
Sorry I missed all this conversation. I’ve gone through 6 years of hell and have been trying to focus on getting well. I now feel, though still a long way to go, that I am in a place to fight the fight against S&N. I’ve written to the FDA a few times in the past few years and written to the NYT when thy were doing their bit on MOM hIps. They were disinterested in my BHR stories. Now that S&N are owning up to failures and have issued yet another urgent field safety warning they might take more notice. I too was very ignorant of the PMA process. I didn’t really understand what Howard was telling us. I am ready to join the fight and do whatever it takes to get the preemption status removed. My lawyers, here in the US, are taking S&N BHR cases. I haven’t discussed my situation regarding the BHR with them yet (I’m signed up for the Stryker MDL) except to ask if they are taking S&N failures on. I will discuss further this next week and let you all know.
scott said:
I am a karate instructor who now has issue which will take me out of my profession and cripple me for life. I am interested in suing SN. contact me