I am a 59 year old American male who has always taken pretty good care of myself. I did develop osteoarthritis and it destroyed my left hip. I had a Stryker Rejuvinate installed in early December 2010. Almost 4 weeks later I was in the Emergency Room with 25 blood clots around my lungs, my heart distended out to one side and the doctors shaking their heads. A savvy doctor decided to have my blood checked for Antiphospholipid Antibody Syndrome or Lupus Anticoagulant. I tested positive and then tested positive twice more weeks and months later. I was told that it is permanent in my case and that I will be on Coumadin the rest of my life.
I have had pain in the hip ever since the implant but all x-rays looked good. The surgeon did an amazing job, as I was fully aligned and the stem appears well rooted in my femur.
About a year ago I was diagnosed with hypothyroidism. Now I take Synthroid for this everyday. My blood testing is now up to 16 to 30 times per year for the rest of my life because of the clotting disorder and thyroid problem.
A couple of years ago I noticed my hands were shaking more. In the last 6 months they have gotten so bad that I can no longer write more than a few words at a time. After a sentence or two what I write can’t be read. It looks more like a 2 year old trying to imitate writing. I used to type 80 or so words per minute, with no errors. Now I am down to 30 or 40, with errors.
I have some ringing in my ears, sometimes short of breath, but not always, but fatigue has been the biggest thief. Since the hip replacement I just run out of energy after about 10 hours. If I didn’t have to get up for work, I could sleep 10 to 12 hours per day, but part of that is because pain wakes me several times every night.
After the Stryker recall my surgeon did more x-rays, but nothing showed up. I got a second surgeon to check me, but nothing. About a month ago my surgeon decided to run blood tests and found my cobalt was over 8, or in the toxic range. Now, what has been happening to my body makes more sense. He immediately called for an MRI. The MRI showed fluid accumulation around my hip. He advised me to have the revision surgery ASAP. I am having it April 22.
Stryker has agreed to pay for the revision surgery. My attorneys told me to be very careful with what I say to them and the company that is handling my claims.
Due to the fact that my femur looks very attached to the stem, my surgeon is expecting to have to cut my femur into several pieces to get the stem out. Then he will put bands around the pieces to hold them together and possibly some cadaver bone to fuse it all back together. It will be 10 to 12 weeks before I will be able to put any weight on my leg.
I also have brain fogs several times a day. The other day it took me 10 minutes to remember/find the name of my CEO, whom I have known for over a year and have used his name many times a day almost every day. (just one example)
Has anyone here ever developed Antiphospholipid Antibody Syndrome, APS or Lupus Anticoagulant from cobalt poisoning? It is an autoimmune disease and from what I have found, metal poisoning can trigger pretty much any and all autoimmune diseases. It all depends on the person.
My best wishes and prayers to all of you. I pray we all end up okay.
Barbara Ford said:
Good luck with your surgery on the 22nd Mike. Can I ask what kind of implants you are going to have put in? I have bilateral Stryker Rejuvinate hips and am being monitored at the moment. My metal ions were 5.9 a couple of months ago, up from 3.9 four months prior. I am trying to keep these hips as long as possible as I’ve also had failed Smith and Nephew BHR’s but I don’t really have an option. I have lost all faith in these drug companies and the FDA. I won’t go into my never ending saga, I just want to let you know you’re not alone.
I had my revision of a metal on metal hip on 16 th April, so just 13 weeks ago.
This has been the biggest challenge of the 6 hips I have had done. First off its the first hip replacement where the stem has been removed. The femur broke in one spot, and that was wired. I was told no PT/physio, so I have been going to the pool.
Saw surgeon at 8 weeks, told to come off crutches, so over the next 2 weeks I went from 2 down to nothing. However when I started to fuly weight bare, I had the most excruciating pain in my upper thigh at the front, it is so bad, I can’t put weight on that leg whatsoever. I rang the surgeon, as not sure if this is normal, the earliest I can get in to see him was 3 weeks later, on 1st August…Not happy with that I went to see my GP who sent me for blood tests to rule out infection, and make sure the implant is ok, it came back fine.
So here I am sitting and waiting, for my appointment, I think having to wait 3 weeks after major surgery is unacceptable. It has gotten a little better, but can strike at my time with no warning. Like when I get up in the night to go to the toilet. Early morning late at night. ..so I can’t walk any where without a crutch as this can strike any time with no warning,i am so fed up now, as time is pushing along. I thought 13 weeks was plenty if there are no complications.
I had my femur split, bone graft and 4 wires to hold it back together. At the same stage you are at, I was still on morphine. I was on crutches for 3 months and it really took about 5 months before I was reasonably normal. But I had nerve damage and foot drop so that took me a bit more time to compensate for.
I agree with you, 3 weeks is unacceptable and I have never heard of a surgeon being so uncaring. With my recent problems, nearly 2 years after the operation, my surgeon will slot me in with only a few days notice.
I would ring your surgeon’s office and let them have an ear full and then camp there until you get to see him. Even if there is nothing wrong, you still should be treated with more respect.
I thing it is still early days and you will be stuck with a crutch or a stick for a few more months but it should come right. These are big operations and take time to recover from.
Mary-anne, this isn’t right; I agree with Earl. Even though your femur was split and banded; during the 8 to 12 weeks of “no weight bearing” you should have been receiving therapy daily. During the bone healing time it is normal to do therapy and strengthen and tighten the muscles. Also, you should have progressed from crutches to walker and walker to cane, not just drop everything and start trying to walk.
I have not heard or read of the way that you were treated as anywhere close to the prescribed methodology. I was given therapy information about what I would do if they split my femur, and it was almost identical to the therapy or a normal hip replacement. According to the instructions and my surgeon; when I was able to bear weight, I would transition, as I mentioned above. Your problem may be able to be resolved by therapy, but there is no way to know until you are seen by the doctor. Again, I agree with Earl. Tell them that you are not doing well, that it is critical that you see the doctor. If they won’t make an appointment for you, then just tell them that you will be there on a date that you choose and that you will stay there until you are seen by the doctor. I just had to do something similar to see my eye doctor about my vision problems. They finally worked me in to see him this coming Monday, July 22.
I pray you do well and that you regain your ability to walk without pain. I know what something like this does to you, but don’t let it get the best of you. Take charge of your own therapy if he won’t help. You can download the therapy from a multitude of websites.
Best Wishes – Mike
Hi Mike. I am sorry I didn’t make myself very clear, I did progress from walker to elbow crutches, which I prefer, as I have had both my shoulders replaced also. It makes being non weight bearing a nightmare for my arms. I went from two crutches, down to one then after another week ditched the last crutch. For some reason this surgeon doesn’t think physio is necessary he thinks you should walk then increase as you get stronger. I have in the past 5 hips always done physio.
The pain I am experiencing doesn’t feel muscular, it feels like my thigh bone. I guess I haven’t been very pushy to get an earlier appointment because I don’t have this pain all the time.when it first came on, I had it for most of the day, now it’s gone down to about 50/50 … I feel like I am being a real pain in the rear end. I normally get going and recover quite quickly. I’m assuming if there was a fracture it would have shown up on the X-ray and also if the stem or cup was loose that should show up. However all my X-rays before the revision, were supposedly normal.. when the cup was removed there was metal debris inside, that had shaven off.so I am not really convinced by X-rays. I will go to the appointment even if it gets better, I want to know it is how to prevent it, and how to cure it. I’m. Bit over the whole thing,, thanks for your quick replies.
It sounds like you are having thoughts like mine…but I could be wrong. Since I had metal colored tumors and metal colored tissue removed with my revision; the current pain that I have, 3 months after surgery, in the soft tissue, I fear that there may be some growth or irritation left over from the metallosis. Only an MRI would show that, not an X-ray. The X-rays before my surgery never showed the cysts/tumors or necrotic tissue. Only the MRI can see that.
Keep posting your progress. I am hopeful that you get what you need…help!
All the Best! Mike
Yes good Luck Mike, I am having a revision of MOM hip on the 16th, and like you my stem has to come out, but its been there for 18 years so I have no idea how thats going to work.
I have had odd health issues going on that no one can give me answers to Palpitations, insomnia, restless legs, UTI’s by the dozen., metal taste in my mouth. but my levels aren’t quite as high as yours not far off though. so it will be interesting to see if they disappear once its done, the hardest part for me was to get a surgeon to listen to me, and thank heavens I have found a really good one, thanks to Stuart on this site, who has enough to contend with. all the best, and let us know how you go.
I had my revision a week ago, and am doing so so. I went home on day 5 but it was too soon, and I was re admitted to the local private hospital, Brisbane did offer me rehab, but I thought I could do it alone, but I have never had a stem removed that’s the big deal in all of this.
I have to tell you that the 2 surgeons who basically couldn’t have given me their time of day and the second one out right lied to be about my metal levels. and MOM hip. Then thanks to you and Stuart Caine, I met Prof Ross Crawford. My metal levels were not that high three times what they should have been and Dr Crawford didn’t think this played much in my hip pain, more because it was 18 years old.
When be did the surgery, he found metal debris in the cup. The metal was worn also.
So the motto is don’t be fooled if you think your levels aren’t high enough to cause a problem, they sure can be as mine proves it.
So thanks to you all on this group, I have now come home and been re admitted for local rehab. I didn’t want to be away from family And friends any longer than need be.
So it’s a good thing I kept going when the other surgeons couldn’t have cared, I’d love to send them the surgical notes. I didn’t believe it, so I made them show it to me.
Camille Petrillo said:
You are in our hearts and prayers, for sure, Mike. Please let us know how it goes. I developed a very bad case of metallosis from a failed BHR implanted in 2005. My surgeon says it was happening for a long time, but no symptoms until last year, and my cobalt was 60 ppb, and 35 ppb for chromium. After tough revision–still not a success–my cobalt came down, but chromium is still high. These past few years, I have had odd neurological symptoms–mostly vasovagal–causing syncope, but nothing like you describe. My compassion is with you. Sometimes, I feel sorry for myself–I live on daily meds with still so much pain, and walk with a cane at 53, after an extremely athletic life, but I read your story, or Howard’s, and other’s, like Stuart, who have suffered much, and my heart aches. I am glad, at this point, at least Stryker is paying for your revision. We are all here for support. GOOD LUCK, MIKE! Camille
Stephen S. Rodrigues said:
Hello, My name is Steve, I’m a family doctor in Dallas. I have to apologize because I read your stories with 3 critical views. One with the view of a patient who battles with pain issues too. (Not at your level). 2-with the bitterness and disappointment at how many patients are being treated in the world of pain and orthopedic issues. 3-how can I help by explaining what is known about myofascial dysfunction which is vital to our well being.
In medicine, stuff happens and we have no idea why or how … Murphy’s Law.
The metal may have triggered the auto immune issues.
The surgery may have triggered the clotting issues.
You may have a predisposition to the clotting issues.
We don’t know and trying to figure it out will cause a lot of unnecessary stress.
What is most important is how to get you back to healthy.
I hope this gives some insight into joints and pain suffers. Before and after replacement surgery.
Your case as are thousands of others in the world are the result of a key fact. So simplistic that it is overlooked. Trigger points or microscopic errors in muscle repair called myofascial dysfunction. Janet Travell, C. Chan Gunn and Edward s Rachlin all MDs who noted 50 years ago that joint pain and disability was not emanating from the joints proper. The muscles and fascial tissue components are what corrupts the joints structures. Care for the myofascial issues and the joints will recover. MF tissues issue are NOT part of the standard orthopedic or medical school/MD curriculum but more in the world of D.O.s.
The degeneration of a joint can be slowed to a trickle as long as the MF tissues are released and nourished. MF therapy must be a part of your present care for you to have less pain and allow the artificial joint to last. If not, the metallic components will breakdown due to the same overwhelming forces of stressed MF components.
Melinda Killen said:
Steve , (Mike please read)
How dare you minimize the pain of Stryker’s victims! Just because you are a Doctor does not give you the right to disseminate false information or validate the crimes that have been committed to hard working, healthy Americans who trusted in a bought and paid for Stryker surgeon or Styker pharmaceutical.
Thousands of people were given death sentences and left crippled and poisoned (oh yeah, some are dead) by Stryker surgeons. I guarantee the only reason Mike’s surgeon agreed to order an MRI and revision surgery is because finally Stryker’s secret of cheap, inadequately manufactured, and fatal metal on metal devices is public. If is wasn’t, Mike’s and the other victim’s surgeons would have gone on playing the game of “blame the victim, it can’t possibly be our device that contains fatal metal that are destroying the bone, surrounding tissue and muscle, blood, organs, and immune system..”
Maybe if Mike’s surgeon didn’t try to get away with giving him a death warran (for profit)t and revised his hip sooner, there wouldn’t be as much metal poisoning and irreversible damage.
So, dear Dr. Steve, you and your indoctrinated medical Gods who stick together and know nothing about healing, only profits, can take your “all that matters is that you heal now…” motto and shove it.
I’d love to see you suffer at the hands of a multi-billion dollar company that intentionally and knowingly crippled you. Real doctors and surgeons have known about articulating metal poisoning since the 1950’s. They just re-branded it. Promoted it with their millions and got suckers ( aka- hard-working, decent Americans) to trust that they would get their health back and out of pain. What a joke. The American people have been “had” and the surgeons and pharmaceutical companies are laughing all the way to the bank.
How can I be so cynical? (and knowledgeable) I could go on for pages about the corruptness of Stryker but I’m in litigation since they did to my CERVICAL SPINE, what they did to thousands of hip victims.
Mike and other Stryker victims, I live your pain, after 4 revision surgeries. I know first hand the loss of living. I know the abandonment of surgeons and unintelligent MD’s who are too compartmentalized to know anything except how to prescribe drugs for stipends. I know the intractable pain and fear of waking up completely crippled. I too am a victim of my greedy surgeon and Stryker.
Mike, if you are in litigation, I hope your attorneys have someone in that operating room to demand the Stryker hip. It wouldn’t be a bad idea to have it analyzed by a bio mechanical engineer. Stryker has been known to use “nickel” in its devices. PS nickel is deadly. Also, make sure to get every single mri, xray, operative report and especially pathology…. This is crucial for metal poisoning has signs of Black Grey, Yellow substance surrounding the device and killing (necrotizing) everything around it. If it wasn’t for my attorney and me getting all of my records and films immediately, I’d have nothing, for all of Stryker and their surgeons records “go missing?” How convenient.
Dr. Steve, until you get a Stryker metal on metal, fatal device put in you, please don’t diagnose because you have no idea of how sick and debilitated Stryker victims are!
The only simplistic key fact overlooked is that you are ignorant when it comes to metal on metal posioning and anything to do with the astronomical consequences involved for the victims.
Mike and the others, you are not alone. I know many victims who are presently awaiting their bleak future because Stryker put a faulty medical device in them.
My prayers are with all of their victims.
Joleen Chambers said:
https://stori.es/share/your-joint-replacement-experience Please go to the link that leads to Consumers Union Safe Patient Project and share your joint replacement experience. Consumers Union (U.S.) provides policy and research support to patients and advocates. Your story will bolster their ability to add personal accounts to the data and influence legislative change to prevent harm for other patients.
Joleen; I will check this out. Thank you!
Mike here! I had my revision surgery on April 22 as scheduled. My surgery went much, much better than expected as they did not have to cut my femur to get the stem out. This may be due in part to the rejection that was occurring because of the metal fretting.
I am doing very well, but a little frightened at the same time. My surgeon removed a large ugly grey cyst from my hip, along with other damaged tissue. From what I have read, this sounds like the description of typical cobalt rejection by the body and pseudo-tumors that the body forms to try and isolate the metal particles. I’m not a doctor, so I hope I said this correctly. The pathology should be out tomorrow and we will know for sure.
I am not going to comment about Dr. Rodrigues comments, as I just want to share information to try and contribute to the overall knowledge of this group; not cast blame in any particular direction. I will say that my surgeon has been fantastic through this whole ordeal and has performed at a level that I would call “due diligence.” He ordered the blood test when he suspected a contamination issue and I am grateful for his insistence on taking care of me ASAP.
My attorneys did take care of getting the removed hip taken care of. They are doing a fantastic job of watching out for my best interests and I am very grateful for that.
I will try to post any new information that I obtain, for the benefit of this group, and those who, like me, have more questions than answers. I still have questions about getting my cobalt level down so that the damage stops. I know that the damage is not reversible, but I still hope for stopping further damage. I will be working with my hematologist on the cleansing since I don’t fully understand if hemodialysis is safe for someone with Lupus Anticoagulant.
Thank you all for your prayers and well wishes; I really am grateful for them all.
My best wishes and prayers go out to all who are trying to work through this maze of uncertainty, pain, suffering and mental anguish.
I have been doing very well with my rehabilitation. I am walking very well without an assist of any kind. I have pain while walking and still struggle with stairs, but I am very grateful that I can walk without even a cane.
As I mentioned before, there was a lot of metal infected tissue and pseudo-tumors or cysts that had to be removed, so I am not surprised at the extra pain with this procedure over the original. I am also about 3/8 inch taller than I used to be. It is very, very difficult to get ones legs exactly right on a revision, especially when dealing with the infection, tissue and bone damage. Still; I believe that my surgeon did a wonderful job.
What has bothered me the most is that something happened that I had hoped would not; my autoimmune disease that had no name became much worse. Well, it has a name now; Relapsing Polychondritis. I have had a very mild version of this disease for a while; not sure exactly how long. It did get worse after the first implant. This time it really ramped up. The disease causes inflammation of cartilage in one’s body. For me, it has always attacked my ears, throat, sinuses and ears. Sometimes even my teeth hurt. My Rheumatologist started me on Colcrys, which immediately helped some. then, after about a week, it seemed to stop working. He has now increased my dosage. The problem with this disease is that it is very rare and he says that he can only treat me just so far and then he will have to send me to Mayo Clinic in Rochester, Minnesota for evaluation and to determine an appropriate course of medication.
Relapsing Polychondritis, or RP, caused my voice to be very weak and hoarse until last Thursday, or almost 2 months after surgery. The tinnitus has gotten worse and my fatigue has been terrible. I still don’t have a good idea about what is causing the fatigue. My cobalt level in my blood is down to 1.7 from 8.7. That is very good. I have been drinking fluids, mostly water, like crazy ever since I learned that I had the poisoning. Several of my autoimmune disorders can cause fatigue, so I suppose that the trauma from the surgery and the temporary spike in cobalt immediately after surgery, which they don’t measure, kicked everything up a notch or two.
My neuropathic problems are very frustrating. From what I have read about toxic metal poisoning, these problems will likely NOT improve. I really can’t write with a pen or pencil anymore and can only type for short periods. My hands shake very badly and I am beginning to question my ability to work, even though I have returned to work. I have had to leave early a few days because I couldn’t handle any more. This whole thing has really put my life plans in a tailspin. I really hoped to get better and be able to re-marry and enjoy a reasonably healthy retirement. Now, all of that is in question. I have disability insurance and assume that I would qualify for Social Security, which would hold me till I get old enough to draw my regular pension. But what is my quality of life going to be? If it is like the last couple of days, there won’t be much to it. With my brain fogs, I may not remember much of it though.
Well, I am tired and my fingers aren’t working so well. I will continue to fill in my experiences as they continue; well, till you all say enough already. Till then; I pray that anyone reading this is having a better experience than I and that you are able to resume a normal happy healthy life.
May you all be blessed with joy and good health!
July 19, 2013 – Mike here,
Well, it’s been about a month since I last updated my recovery. I went back to work shortly after my last post. It has been a real struggle, as the Relapsing Polychondritis that got ramped up by the hip revision has been unstoppable. I am on the Colcrys three times a day and now, my doctors has me injecting myself with Methotrexate once a week; still trying to stop the flares. I keep hoping that something will stop them, but so far, nothing has worked. The one thing that the Colcrys and Methotrexate have done is reduced my cartilage inflammation enough that I can sleep. The nearly two months without a good night’s sleep was very hard on me. I still have nights when pain of one sort or another wakes me up and keeps me up.
The hip has done fairly well. I have to put about 3/8″ insert in my right shoe now, because the new hip caused my left leg to be a little longer and walking without the lift causes a lot of back pain. There is still a good deal of pressure sensitivity in the soft tissue around the hip that seems to be getting worse. If it continues, I will have to get that checked. It also still hurts to walk, but I can walk without a cane. My balance stinks, but that could be leftovers from the metal poisoning or from the RP flare.
I have gotten my cobalt blood level down to about 1.5 since the surgery. When I found out that my cobalt level was around 9, I started drinking lots of fluids every day. I read a lot about how to decrease it, and urination was the only safe way. I am surprised that it came down so quickly, but as I said; I have been drinking a lot of fluid all day every day and even night.
The ringing in my ears has not gotten worse or better. The constant RP flare has, I am afraid, caused my right ear to feel like it is about half full of stuff and my hearing is weaker in that ear. Sounds are different in that ear as well.
I am having vision problems now. I look at words on the page and some of the words seem to be blurred. Also, the words appear to be in waves diagonally across the page at times.
Fatigue is the biggest thief of my joy. I can sleep well and wake up feeling pretty good. That lasts about 2 to 4 hours and then I am fatigued and ready to go back to bed. I force myself to go to work, but some days I can’t make it all day. I also have to make myself do my exercises and cardiovascular exercise, which I do only on my elliptical, as I am trying to conserve my hip since it is ceramic and plastic. I am not looking forward to the next replacement.
I still have the problem with my hands in that I can’t really write with a pen or pencil. Typing is the only way that I can write, so I take a computer with me everywhere. My typing speed is way down, but it is much better than my writing and can be read when I am finished. Two of my doctors have, on their own, asked me if I have considered going on disability. If things don’t improve soon, I just won’t have any choice. Working makes the flares worse and the flares are destroying my body. I just don’t like the idea of not working.
I hope that those of you that are having problems with your replacement hips are doing well and remember to drink lots of water.
May you all be blessed!
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Mike here, with another update and another journey ahead.
I completed therapy and the pain with the revised hip continued, especially when I would bend over; straightening up is a tremendously painful effort and has been so since a few months after the first implant. The pain in my left hip and thigh has continued to get worse with the passing of time. It finally go so bad that I started therapy again, hoping that perhaps more was needed. It didn’t help at all; matter of fact, therapy seems to make it worse. I also noticed my left thigh and buttock was getting larger. I then made an appointment to see an orthopedic surgeon for a checkup.
The surgeon examined me and then sent me in for x-rays. When he came back into the room he had a very stern and worried look on his face. He was a very sweet guy. He looked at me and put the x-ray image up on the viewer. We studied the two views and he stated the obvious; that there was Osteolysis around the femoral stem. There seemed to be a space about half way down the stem where the bone was just gone. In previous surveys, the implant was completely surrounded by bone. He advised me that this was beyond his level of expertise and referred me to a bone specialist.
Between visits, I was given an MRI with one of the new 64 machines that gives much greater detail and produces the results quickly. I then spent four hours with the bone specialist. He laid out all the details before me, explaining the probable routes for correction and several alternative surgical methods.
Three hip replacements of the same hip in four years is getting to the point of both serious and ridiculous, but something has to be done. My hip and thigh have gotten so large that I have had to order new pants to accommodate them. Walking is quite painful and I am now walking with the assistance of Canadian or forearm crutches. They are quite helpful.
One thing that is quite troublesome and something that I don’t have an answer for yet is the fact that I have lost over 2 1/2 inches in height. The bone specialist measured me and my legs and found that my left leg is 5/8 inch longer than the right. I don’t know what is causing the Osteolysis, but they believe that it is plastic shavings coming off the hip that was used in the revision surgery. We should know something in a couple of weeks, as I am to return to the bone specialist. He will likely perform a bone biopsy and pull some fluid from one of the sacs for lab testing.
One day I won’t be writing any more updates, because all the work will be finished and maybe; just maybe, I will begin to get some normal back into my life.
My best to each and every one of you.