BHR, Birmingham, Birmingham Hip Resurfacing, California, Food & Drug Administration, Hip Replacement, Kaiser, Magnetic resonance imaging, Operating system, surgery
The following is an account of my personal experience with osteoarthritis, our healthcare system, and the Birmingham Hip Resurfacing device. All representations made herein are my opinion.
MY BACKGROUND: “IT HAPPENS”
I am a 39 year old, single mom of two who endured a divorce, a criminal prosecution against my ex-husband, the loss of my mother to sudden illness, the foreclosure of my home, and a LBHR (resurfacing) surgery in 2008. While this was all happening, I attended law school and graduated in 2010. In hindsight, it’s amazing I actually made it through school. There were 75 in our class when I started and only 25 graduates. In 2011, I made an attempt at passing the California bar but I did not pass. I do hope to try again, as I am eager to earn enough money to begin funding my own non-profit. Not having a license to practice is limiting my ability to earn. Anyway, I am not a lawyer and I can’t give legal advice but I am more than happy to speak on the subject of resurfacings based on personal experience and research. As I write this, I am in a lot of pain and I worry that I don’t always make sense when I write. I apologize if my writing isn’t linear or fluid right now. My LTHR (total revision) is scheduled for Friday:-) I am very excited and grateful for the blessings that this new pain-free opportunity promises.
PATCHES AND BAND-AIDES
Prior to the sudden onset of pain in my groin in 2006, I was a triathlete. My injury doesn’t appear to have been caused by any one particular event. However, it started immediately, was constant and became increasingly worse.
It took me 3 years to get the doctors at Kaiser to agree that I needed something more than random x-rays, pain meds and steroid shots. I pestered them relentlessly for answers but somehow they managed to convince me that my pain was in my head. In 2007, frustrated and unhappy with their lack of answers and desire to find reasonable solutions, I went out of network and paid for a left hip MRI that confirmed I had a tear in my labrum (cartilage). Relieved that I had found the source of pain and eager to find solutions, I brought the results back to Kaiser. The doctor reviewed the images but even then, questioned the technician’s assessment of what the pictures revealed. In his own frustration and desire to have me out of his office, he finally agreed to send me up the chain to their arthroscopy clinic.
In 2008, I saw an OS who specialized in hip arthroscopy. He ordered a contrast MRI and a couple weeks later, I had a scope to remove bone spurs and repair the tear. Unfortunately, the scope failed within a few weeks and left me with quickly progressing osteoarthritis. The new images revealed that my hip was bone on bone. I was in tears all the time. I remember sitting through my 3 hour classes on my knees because I was unable to sit in a chair. I took many of my exams on my knees, anti-inflammatories and various pain meds. Still frustrated and unwilling to believe I had to live this way, I started looking for alternatives.
“SURFACE HIPPY” IS NOT MY FRIEND
I began researching everything I could find on hips. For nearly every online search I did, somehow I always ended up at the “Surface Hippy” website. After hours and hours online, SH and their fully staffed and always available support team of “well-informed” nurses and advocates, had me convinced that a total hip replacement was an irresponsible mistake for someone like myself who is young and active. I totally bought it. I wanted to believe there was something short of lopping off my femur that would allow me to live a full pain-free life and this new and improved resurfacing device had to be it! It’s amazing how much fear influences our decisions, isn’t it? The messages constantly conveyed were, “Yes, you should do this, its better! Resurfacings are great because if you have a “total”, all your days of running and high impact sports will be over.” I never got a sense that anything serious could go wrong and the explanations for failure always seemed to be the patient’s poor choice of surgeon. Of course my surgeon wouldn’t be one of those! Right? At the time, I didn’t know much about how websites were maintained. I do recall being perplexed by the number of readily available doctors that could answer my questions almost immediately. They were there to generously review my films and physician’s reports if I so desired. Wow! I can’t even get my primary care doctor to respond like that. The endless advertisements for various “life-saving” resurfacing devices plastered on every SH page should have clued me in to whose site this really was. At the time, I wanted to believe and I did believe that there were organizations and laws in place that surely wouldn’t allow for something to be mass marketed that hadn’t been thoroughly researched. Of course! We have the FDA, right? There are still people in the world who value objective, honest reporting over profit, right? Well, I was naïve and given my desperate desire for relief, easily led astray. It didn’t help that I had all the wonders of a resurfacing confirmed by my new surgeon either.
In September of 2008, at the recommendation of my primary who insisted that I was too young for a total hip replacement, I saw an OS who specialized in hip osteopathy. This OS is a self-proclaimed “pioneer” of resurfacing. When I met with him, I waited over an hour to see him and spent all of 20-30 minutes in the examination room. He said that because of my age and desire to continue exercise that I would be a good candidate for this alternative to total hip replacement. I was desperate to be free from pain at this point, trusted his recommendation, all the web propaganda that supported it and I agreed to take his first opening: And so began my “dysfunctional relationship” with a Birmingham Hip Resurfacing.
MY “FAST-FOOD” SURGERY AND NON-RECOVERY
My BHR has never been right from day one. My experience in the hospital was beyond awful. During the procedure, I could hear saws and discussions about dislocating my hip. I remember looking up at the anesthesiologist and begging her to put me out. As I was being wheeled from recovery to my room, I asked the nurse if I could have some food. After all, it had been about 15 hours since I had eaten anything and I wanted some pudding or juice. The nurse brought me a plate of chicken and vegetables: Which I immediately returned to him in a bucket. I was freshly out of surgery, wasn’t thinking clearly and wasn’t aware that eating protein would make me sick. At least when I vomited, I was nice enough to manage putting in the bucket. When the nurse returned to take it, all he could say was, “I told you so”.
The following day the OS came to check on me and noticed that I had never been given compression socks for my legs. When he asked the nurse why I didn’t have them, the explanation was that they “ran out” and they decided that because I was young and healthy that I could go without. Instead, they elected to give the last pair to the lady next door. At least three times during my short stay at the excessively noisy hospital, nurses attempted to confirm WITH ME the type of pain medication the last nurse on the shift had given me. They always seemed confused and distracted. Needless to say, I left the hospital as soon as I could. As I was being wheeled out, I was told that I couldn’t take the wheelchair past the front door. I asked if I could have a walker and they said it wasn’t covered in my plan. They gave me crutches but because and I had to make my way to their parking garage through all of their re-construction, there was no way to get a car close to the door. So we took the wheelchair anyway and returned it once I was safely in the car.
When I returned home, I received two or three home health visits with PT which were discontinued because I told them I was required to go back to school or I would be required to drop my classes. Since I was leaving the house, I couldn’t get any more in- home physical therapy. So, I started back with a little walking and stretching on my own, only to find myself in extreme pain 3 to 4 days later. I asked the surgeon about this and he just said I needed to slow down. I pressed him about PT and was denied it at every turn. The explanation was that I was “a young athlete and understood exercise and didn’t really need it”. At my follow up appointment, my OS handed me a sheet with some little stick figures on it and said to go home. Unfortunately, my insurance premiums were raised another $100/mo at the start of 2009 (surgery was 9/08) and I could no longer afford to follow-up. The last appointment I had was to the pain management doc who told me that I “might just have to learn to live with the pain”. In the end, I addressed my pain by becoming completely sedentary.
Fast forward to March of 2011: Remaining sedentary became less effective and by October, I had to leave my job because I could no longer sit. My thinking had also become compromised and the complex legal research I was doing was no longer possible. Unfortunately, I had also become one of the many Americans with a pre-existing condition. Because of the BHR, I was now uninsurable and I felt like there was nothing I could do. I then began my struggle with MediCal. Longer story short, I was eventually approved for a THR at Stanford but it was cancelled the day before the surgery. The doctor at Stanford was so reluctant to deal with MediCal that he immediately excused himself from my care when he found out that they wanted me to get a second opinion with see someone at UCSF. After having my disability form for 3 weeks, the Stanford doctor suddenly decided that in his opinion, I didn’t fit the definition of disabled and he wouldn’t fill out my form for state disability. Because of his sudden rash decision, I have had to borrow money from friends to keep a roof over my head. I had to go on food stamps to keep food on my table. In addition, I have no family locally and I have had to navigate all of this alone. The good news: I finally have a doctor who is graciously willing to accept the revision of my BHR at UCSF.
MY PROBLEM WITH THE BHR AND HOW TO FIX WHAT IS BROKEN
My physical symptoms run the gamut. I have elevated cobalt/chromium, a large gouge in the neck of my femur from the cup rubbing into it, thinning of the neck, and constant pain. THE CUP IS TOO BIG EVEN THOUGH THE DEVICE IS SMALL. In my opinion, this device was created for the male structure. If one reviews the clinical history of the BHR, there were no focused studies of its use in women. In fact, the only data the FDA considered prior to its speedy 510k approval was the data provided by the designer of the device itself. Where are the unbiased clinical studies? Additionally, problems related to “stuffing” these in smaller frames was never considered for a second by McMinn/Smith & Nephew. All they could see were dollar signs and into the hands of our surgeons they went!
Interestingly, the most common explanation for failure that proponents of resurfacing use is “poor placement by inexperienced surgeons”. According to my latest OS, my BHR is placed perfectly. How do explain that? Except to say the problem lies with the design and manufacture of the device. Those same proponents also sight metal sensitivity as a cause for failure. Well, personally, I do not have a metal allergy. Yet, I have dangerously elevated metal ions in my blood. How do you explain that one? Except to say the problem lies in the design and manufacture of the device.
Let’s just put two and two together here folks. It doesn’t take a surgeon or a degree in physics to figure this out. This is a metal on metal device. And just like the DePuy and all the other recalled total metal hip replacements, there is direct and constant metal articulation. It is really quite simple. You rub any metal on another metal and there will be metal ion release. Again, the problem lies in the design and manufacture of the device.
I won’t know the extent of the soft tissue damage until my surgery. In addition, I guess I will have to wait another 20 years or so to see if I will have renal issues or cancers caused by heavy metal exposure. By then, there will be nothing I can do to recover for the damage already caused. All I can do right now is fight to get well and help others get the word out to the public and our representatives. Here is what I believe MUST happen:
1) All metal resurfacing devices MUST be removed from the market,
2) The 510k approval process must be revised to include mandatory unbiased United States based clinical studies,
3) When it comes to pharmaceuticals and medical devices, ONE SIZE DOES NOT FIT ALL! We must have clinical trials that are specific to women prior to mass market use.
- Another S&N BHR goes Sour – Brenda’s Story (UK) (earlsview.com)
- Bryan’s Story – 28 Years Old, Two Hip Replacements – One dud Smith & Nephew BHR (earlsview.com)
- Prisoner in own home at 43 – Smith & Nephew BHR disaster – again (UK) (earlsview.com)
- A comparison of Leg Length and Femoral Offset discrepancies in Hip Resurfacing, Large Head Metal-on-Metal and Conventional Total Hip Replacement (earlsview.com)
- More Smith & Nephew BHR Problems (earlsview.com)
- More Smith & Nephew BHR Problems – Katie’s Story (USA) (earlsview.com)
- BHR Metallosis – Trust your Body – it is more sensitive than X-Rays! (earlsview.com)
- Vicky – double BHR Success Story (earlsview.com)
- UK surgeon warns public about dangers of all-metal hip implants, especially for women | Depuy Hip Recall (earlsview.com)
- Howard View – on a few things (earlsview.com)
Dear Katie, What an ordeal you’ve been through and you are young! It’s just not fair.
Im 58 and have a similiar story. My medical bills from surgerys and dislocations left me bankrupt, and I had insurance!. It was what they would not pick up that left me broke.. It got to the point too, because I couldnt work , I lost my insurance . Not able to get disability(because I was a stay at home Mom back when I qualfied ,but not considered disabled ), nor SSI , I did qualify for $200 of food stamps and Medicaid.
Well anyway After 4 surgerys (left and right hip THRs) I was given a S&N implant, hoping this was the end of my problems . Forget about it! One and half years after, my leg swelled , I was in pain, limping, Toxic levels of metal,muscle and tissue damage, you all know the rest of the story. After a revision, and dislocations I am now with a constrained cup.and So far it has worked for me.
My confidence and dignity are suffering and so Ive been saving positive thinking quotes and Im learning to be kinder to myself and take care of me.Even though we’re not to blame, and it wasnt in our control, it’s difficult to get through when you have so much anger in you. Don’t let it get the best of you as I did me.
Im going through a divorce ,lost my Mom in May and had to put my best friend,Molly down All in one year.I never believed I could endore so many let downs and get through it, but surprisingly I have .
Like Howard says , it’s important we keep ourselves well and strong and let the word out about all metal on metal devises.etc.How Im not sure but I think someday we will be heard. Best wishes, hugs and love to you Katie, regards, Dodi p.s. I read back what I wrote and what I didnt want to do was complain about me , and appears to me I have. I was thinking that it’s comforting to know you are not alone.
katie kingsley said:
Dodi, Thank you so much for writing. You are NOT complaining at all and I am happy you shared your story. It is hard to hear all of these horror stories but I think what you hinted at is true: We can find encouragement in comfort in knowing we are not alone in our struggles. Through our common pain, we can find the strength to enact change. I am looking forward to being on the other side of this so I can help others avoid the pitfalls. I really hope you are doing well and that you stay pain-free and healthy from here on. katie
Katie, Thinking of you and sending you the most positive thoughts and wishes for Friday. My husband has a very similar story to yours. He had a Smith and Nephew Birmingham Hip Resurfacing at age 39 and now will need revision surgery very shortly. He also had similar experiences in the hospital and with physical therapy at home. This was marketed to young people and it is the worst possible thing to do to a young person financially (having over 20 years left on a mortgage and needing both of our full salaries in order to pay it) and medically facing a revision surgery at too young of an age, wondering what we will be facing 10 – 20 years down the road. Thank you for sharing your story.
katie kingsley said:
Thank you Lisa. I do hope your husband can have it revised soon. I will check back in when I am feeling better and let you know how it goes/what device was used. I hope that your husband and others like us will share their stories. I am a pretty private person and sharing this was very much out of my comfort zone. Having said that, I really wasn’t expecting how therapeutic it could be. . . .I spoke to my new surgeon this morning (whom I respect very much) and everything is a go! Its gonna be a good year!!!
Hi Katie, I too am living in BHR MOM hell at present, and I am awaiting results on trace metal levels as well as a scheduled MRI. I plan to file a full report here when I have all of the data. For the record, I am fifty eight years old but have been an athlete all of my life, am still in relatively good shape and am very limber. From what I hear and read, it seems that when the FHA says only a small percentage of patients have trouble with the revolutionary “Oxinium” MOM BHR, they are talking about younger, historically active people who still have good musculature and flexibility. My mother had no problems with her MOM hip, because her exercise was limited to driving to the market and playing cards — she is representative of the majority of patients who have no problems. As I have told my doctor, “use equals pain” — my mother (and many other seventy and eighty year olds) are predominantly sedentary, hence their inclusion in the statistically ‘successful’ majority.
I’m in the states, and my co-pay is 20% (after a 500.00 deductible), so my THA did not come cheap — when it was ‘installed’ in in March of 2009 by my local ‘Bonesmith’. (Yes, that is quite simply what they are, and we are their ‘bonestock’ — nothing more). I was told last week (Jan. 26) I needed a revision ASAP, and that gosh darn it, some people are just ‘hypersensitive’ to a metal on metal prosthesis (Why didn’t I hear such possibilities before my surgery in 2009)? This craftsman was adamant at immediate revision, and I had to request the MRI to be sure. It’s as if this orthopod knew full well what I was experiencing, and it took five minutes of consultation — I listened, he talked — before he wanted to schedule a revision. Unlike you, I still have insurance, but am now disabled and can ill afford another THA, and my share will run into the thousands — just under three years later!. (My co-pay for physical therapy alone totaled around $2500.00 these past few years). In short, this could very well break what’s left of the dilapidated bank.
One thing I came across in my fastidious — OK, obsessive — internet research was the following legal advice, and I paraphrase: “A study found that only a fraction of recalled medical devices had been approved through the more stringent pre-market approval process, or PMA, which is used for devices with a higher risk factor. The FDA 510k process is much easier for the device peddlers, as a company seeking FDA approval merely stipulates that the device, (and I’m reading from 510k summary # K083566 sent to the FDA by a Nicholas Tabrizi of Smith and Nephew) in this case the ‘R3 Constained Liners’ were “similar to the following commercially available devices regarding design features, overall indications, materials, sterilization and manufacturing”:
1. Osteonics Constrained Acetabular Insert (Submission #P960047)
2. Smith and Nephew REFLECTION Constrained Liner (Submission # K021803)
3. Smith and nephew Global Bipolar System (#K03743)
Under ‘Summary of Technological Comparison’ we read “The intended use, design, and materials of the R3 Constrained Liners are substantially equivalent to the previously cleared” […] Liners. Design Control Activities (“See…it’s just like those other ones… trust us”) have been completed and the results indicated (to S&N of course) that the subject device is safe and effective”. Ah, I’m reassured — the screaming pain in my hip is at least safe, and has been very effective in tormenting me! The FDA just ‘rubber stamps’ this stuff — astounding! Big Pharma has a huge lobbying influence in our oligarchy, whereas we (the guinea pigs) have no voice. It’s dollars vs. democracy, and we can see who is winning.
But here’s the possible opening for us: ‘If harm is alleged by a device that was endorsed under the more rigorous PMA process, the patient cannot file a lawsuit under state law” (The PMA process requires extensive clinical testing and inspections) “Yet if a device was not reviewed under PMA, but rather the 510k” (trust us, it’s just like those other ones we made), “a patient can file a state lawsuit”.
Short of a recall and subsequent ‘class action’, it seems this is our only hope.
I will post my entire ordeal later, as I said somewhere back there, but I saw your comment about the slipshod 510k FDA approval process and just had to comment here.
Kristin Hadley said:
Brooks & Katie,
I too have had a similar horrific experience. I just had revision surgery 1/2014. Im hoping & praying, since your surgeries, myou were able to find surgical relief. Has anything changed by filing a state lawsuit in either of your cases? Every attorney. I’ve spoken to has said unless its specifically recalled, they won’t touch it. I know there was recently (11/2013) a case in Illonoise, Tillman vs. Smith & Nephew, that made it past the 7th Circuit court based on the state litigation but I don’t know of any attorneys that are willing to pursue this. I’m horrified, our futures are unsure & the FDA, S & N, the surgeons & now the attorneys, all are suppose to do what? Be here for our protection?
Praying for the highest good for all,
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Katie, I cringed when I read you story! I am 51 with arthritis in one hip. I have an excellent orthopedist who says I will need a THR in my 50s and that “I shouldn’t wait too long.” Well, I just lost my job and, for the moment, I’m on COBRA. I found your story because I was searching for hip stretches. I am desperately trying to strengthen and increase the flexibility of my hips.
Reading your tribulations using our health system made me sick. I wish you the best and hope that the future will be brighter and less painful for you!
thanks for your comment. I lost $6m at the time of the first hip and I lost my job two days before my hip revision – so I know how it must feel. Fortunately in Australia we pay for out medical insurance independent of the company and so I could carry on and have the operation. I am not sure that stretches and flexibility will do too much for the arthritis judging from my own experience but I hope it does! I am currently using voltaren to keep the left hip under control as it is screwed too.
Katy had her surgery yesterday and so she will be recovering at the moment – hoping to hear how it went soon.
About a week ago, I did my first hip stretch. It was a simple hamstring stretch (I’ve read that quads and hamstrings need to be stretched with hip problems). Instantly, my hip felt phenomenally better! This, of course, only lasted about a minute. But given the incredible feeling of relief, my takeaway was that I desperately need to stretch my legs and hips…something which I, heretofore, have never done.
I’m sure the stretching will be helpful in trying to maintain a somewhat “normal” life. What will it mean in the long run? Maybe it will extend the time I have before a THR is required. Maybe. Will I start stretching religiously? Absolutely! I also bike and do squats (with weights) most every day. When I do these exercises, I am completely non-symptomatic.
It’s been a week since my first stretch and my condition keeps improving. I feel that I am getting closer to days where I will be almost non-symptomatic.
About two weeks ago, I had a terrible day. I was pretty much crippled and felt that I would no longer have anything resembling a normal life. I am 51. Katie is only 39. My heart goes out to her for being able to deal with her situation with strength and optimism.
By the way, the cause for my hip arthritis was an imbalanced “skeleton” where more weight was placed on the bad hip than on the other hip.
katie kingsley said:
How are you? Do you have a BHR or are you just beginning to research THRs? I hope you are doing better and things are progressing for you.
Every day is a bit of an adventure – I never know what I’m going to wake to in regards to my hip. For now, I’m better that I was two weeks ago but I’m been going crazy with 2-hour long bike rides every day, large doses of ibuprofen (not mega-doses), and lots and lots of stretching. I’m sad to read Earl’s comment about weight-lifting. That is one time where I feel l wonderful, healthy and powerful in my life. I am totally non-symptomatic when I lift weights.
I also use visualization (manifestation). I’ve been building this skill for two years. When I have mild pain in my hip, I visualize my hip as healthy and well and the pain goes away. I know that sounds a bit odd but I’ve become quite adept at it. I also use it as a methodology to try and improve my hip and my overall health. My health has improved significantly over the last 3 years. I’m like a new person. We’ll see what I can do with my hip – wish me luck!
I was just desperately looking for some answer regarding hip arthritis when I found this site. Since then, I’ve found some great hip stretches and I do them quite often.
didn’t mean to depress your enthusiasm – the relief you get when exercising is most likely due to the bodies natural pain killers, endorphins, which are released when we exercise. So maybe that is a better thing than artificial pain killers.
I was an avid weight lifter and loved it – used to leg press up to 750 kg regularly – but it was actually lunges that caused my first hip injury!
I think at the end of the day you have to do what works for you and there is no way I would like to ruin what is giving you relief – and who knows maybe your body can repair itself?
All the best
Hi Earl. In retrospect, I greatly appreciate your comment.I actually think it was my weight-lifting that set me off and has left in worse shape than I was a month ago. The timing seems to indicate this. My bad hip became quite bad and I discovered also, based on the type of pain, that I most likely have some arthritis in my “good” hip as well.
So, I’ve dropped the weight-lifting completely and now I do core work on a mat (including hip work), biking, stretching, and resistance bands. I seem to be getting better and better – not sure what to credit for that. I hope I get back to where I was a few months ago.
I have been there – was a gym nut – weights, rowing, you name it. Now I am less impressive!
katie kingsley said:
Hi. I’m back and a week post-op. It has been a rough go but I am doing remarkably well. It seems like the recovery from a total hip revision is far easier than the original BHR surgery that brought me to this point. It is still early, so we’ll see if I still feel that way in a few weeks. I moved from walker to crutches yesterday and my pain level is markedly improved from one day to the next. It seems almost like a miracle. Hope everyone is hangin’ in there! Katie
welcome back! I found the same thing – so much easier recovering from the revision. Go figure. I get the toxic hip was causing us both such grief that the relief is even more pronounced!
Go get ’em!
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It seems exercise and movement does help – if you can overcome the pain. That is the battle I face and since exercise caused the problem in the first place, some moderation seems to be called for.
Weight-bearing exercise, squats etc are only going to aggravate it further but exercise in the pool is recommended.
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Hello Katie. I read your post with both sadness and anger. Sadness at what you have endured, and anger at the attitude of the surfacehippy members. During my research into replacements I too witnessed their messianic approach on various support groups. I was appalled at intensity of the THR vs resurfacing debates, and discussions about strategies to encourage new members across to their site. The question is why wouldn’t you be convinced! They would have you believe a THR is huge mistake for us ‘younger’ patients (I am the same age as you), that bone-conservation is somehow necessary, and that any surgeon who says otherwise is either inexperienced, ignorant or has a hidden financial agenda. Of course none of this is true. I was fortunate enough not to be convinced, thanks to a wonderful surgeon who felt the failure rates were too high, and to studies I found that supported this. I am now the proud owner of a ceramic on ceramic THR, and I can assure you I do not miss my femoral head one bit! I have returned to my active and pain free life and couldn’t be happier with my new hip. I can run, ride, swim, bend and play sport as well as anyone. And every day I marvel at the difference it has made to my life. I truly hope you are able to do the same, you certainly deserve to. Thankyou for posting your story, and best wishes for your recovery.
Camille Petrillo said:
I am so happy to hear you are doing well!! YEAH!!
Ironic– the, self-professed, unpaid, “moderator,” of the Fame SurfaceHippy Site told me that I would have a VERY LONG, VERY PAINFUL recovery after my upcoming revision surgery, than with my initial BHR, due to all the tissue and bone damage caused by metallosis. More Ironic: She and I had the same Renowned surgeon, and we both had Perfect Placement. Once again–Perfect Surgeon, Perfect Placement–Gee, all of the increasing amount of patients coming forward with failures must be mutants of sorts!
Dear Earl and Katie,
Thank you for sharing that your revision recoveries went better than the first time around. It instilled faith, and shrank the voice of the biased woman’s predilections from my head—it gave me peace and confidence moving forward! You rock!!! Camille
I am pleased you are finding the Blog useful – I started it because I was so frustrated trying to understand why my hip had failed after only 2 years.
Now over 100,000 vistors have used the site in 6 months so I guess I was not alone!
Camille Petrillo said:
I had my revision/conversion surgery just over two weeks ago, on Feb 29th. Again, I express my gratitude to you, Earl, for bringing us all together.
I wish the, “SurfaceHippy,” Founder, would stop blathering we are in a, “less than 1% failure rate,”—- the failure rate of MoM implants is increasing all the time. And everyone at Smith and Nephew, and the Top Surgeons, and all the surgeons performing BHR, for that matter, know it. But now they are, ‘restricting,’ the candidates, rather than, rah-rahing them in. They are now excluding: “small boned,” patients, like Alison and me; “perio-meno,and post-menopausal women;” and other less than ideal bone density patients. The good, conscious surgeons are doing this. Sites like, “SurfaceHippy,” are not. And lots of people, who wholeheartedly believed they could find a surgeon to give them the, “newer, better,” bone-perserving,” surgery are needlessly suffering terribly. (Oh, I could hear the founder of, ‘SurfaceHippy’s,’ retort to this right now: “No one ever told you there would be a 100% success rate. What surgery has a 100% success rate? You should see all the THR failures . . . etc. etc” I am sickened by her redundant rhetoric. Spare Us, Please! Earl, you are most gracious and equitable to allow her to post on your site.
I am coming along GREAT! Although that very same, “SurfaceHippy,” Moderator, assured me I would have a VERY SLOW, VERY, VERY PAINFUL recovery, due to my gross metallosis, as I had previously posted. What kind of human being, nonetheless, self-proclaimed altruistic, non-profiting pure advocator, would wish anyone this less than a week before going into surgery? Anyway, nothing she could say could miff me, but, when I read others have had the same experience, and they have suffered much more than I, I become incensed all over again
And I have told Katie, via e-mail, and you, Earl, as well, you have all encouraged and relaxed me, moving closer to my surgery date, for you had such great results with your revisions, and were just so relieved to have that poisoning bloody metal implant out of you!
Once my surgeon got in there, he told me afterward it was the worse case of bone loss in the pelvis due to metallosis he had ever seen. He had to do extensive bone grafting. I must only, “toe-touch,” on my operated leg for the next eight weeks, to assure a safe fuse. Luckily, I have great upper body strength from athletics, but unluckily, my other weight-bearing hip is now very osteo-arthritic, and is doing the brunt of the work. I will have THR done on that hip down the line. My surgeon also told me that the friction releasing the ions into my systems had been happening for a long while, though I was asymptomatic for six years, and quite active, I must say. My only symptoms, though I wasn’t privy to this being a, ‘Red Flag,’ were periods of excessive clicking when activity level arose, and squeaking whilst squatting or bending only. These did become much worse toward the end of the six year period, when very acute pain did, indeed set in. I am walking with a walker, but just starting to maneuver crutches. I went with metal/poly, for although my surgeon suggested an oxinium head, he agreed, the metal head had a longer track record. (I must say, the idea of putting a co/chro head implant made me cringe, but, I know this to be the choice of many well-researched revision patients.)
My blood levels pre-conversion were 37co/60chro. About a year and a half ago, at a time I was dancing in a very vital, rigourous modern dance production, I developed a very dry cough. My G.P. thought it was an air-bourne allergy, since we were rehearsing to also perform outside, in the grass. At night, something odd started manifesting itself. It only happened at night, just as I would start to drift off to sleep, or if I dozed while watching a film. I’d have these attacks–they awakened me– started with extreme vertigo, accompanied by this dry cough, thightness in the throat and difficulty swallowing. It was similar to a vasovagal syncope response, though I couldn’t associate it with any kind of trigger.. I would do everything in my power to avoid losing consciousness. I would walk, I was really spacey, had difficulty answering questions or formulating sentences, though I was aware of what was happening. Sometimes I had double vision, sometimes my heart would pound, but this was out of fear of not knowing what was happening. My limbs would go numb. My teeth would chatter. On an occasion of a severe attack, I asked my boyfriend to take me to the E.R. Other then slightly elevated blood pressure, heart rate, and high glucose, not the given CT. scan, or blood work revealed anything. They diagnosed it as a, ‘panic attack,’ an, ‘anxiety attack,’ which it very well could have been. These episodes lasted just over two weeks, for an hour to two hours every night. I sought out a litany of specialists. Nothing was found. During the day, I was a, “normal,” person, functioning great, and the dance was so extremely athletic, there was lots of clicking occurring in my BHR joint. Night turnd into a horror show. Anyway, they disappeared after our production, and I never thought about them again, until I had a very bad one three weeks before my upcoming Feb. 29th revision. Since I hadn’t known back then, I had metal poisoning, I never thought, at first consult, to mention it to my hip surgeon, or hospital medical doctor, for they hadn’t happened in so long. Though, prior to surgery, I then did give them the history when that attack happened. Not one physician seemed to think these attacks were related to my elevated co/chro levels, though my surgeon did admit there is much they do not know about the affects of cobalt/chromium poisoning.
Sorry, didn’t mean to ramble, but if they were anxiety attacks, i sure didn’t have one when they were gurneying me into the operating theatre! I had two mild episodes with vertigo my last few days in the hospital post-surgery. Actually during the day. Just wondering anyone’s comments on this? Similarities? I did ask to have my thyroid tested. Two times it came back in the high end of the normal range.
Anyway, I am making great progress everyday, and I so thank the inspirations of Earl and Katy, Alison, and all you others who have posted. My heart goes out to those of you who are still suffering so. Blessings to Us, All, Camille
Lynn Frank said:
Gosh it’s been a while since all of your posts. Wondering if you’re all still following. I am about to have a THR and doing research. I really appreciate the time you all took to write of your experiences. I was in a jacuzzi today and a gal told me about BHR and has a friend who’s happily skiing after his. I was excited to check it out but now…umm I guess not. LOL I saw a surgeon last August who was so obviously not interested in entertaining any questions (kind of a jerk) that it gave me a good excuse to tell myself I’d just do without the surgery. I’m now worried about other joints suffering due to compensation so I’m seeing another surgeon in a couple of weeks. I hope he gives me confidence and takes some time to listen. Anyhow…an update on revisions and/or THRs from you all would be totally awesome. So how are you all doing???? 🙂
There hasn’t been a lot lately. Nearly 2000 posts and another 30 pages of information has pretty much drained the swamp but the Facebook page I set up Total Hip Replacement News has just over 750 members all sharing their experiences.