Sunday, March 20, 2011

….. While awaiting a decision from my team: Depuy hip Revision or not?

I have been thinking a lot about the process I have gone through since the announcement of the Depuy hip recall last year in an attempt to assemble the requisite information to make the decision: revise or not. I have sought information from the people who are “experts” in this field because I was unable to make this decision due to the lack of information available to guide a decision. In retrospect, my personal thoughts:
 The overriding observation: the overall approach to this problem seems to be somewhat problematic to me.
o   Symptomatic vs non symptomatic should not be an issue in proceeding with testing for underlying problems that may be present.  If we know that the soft tissue and bone damage is progressive and we don’t know how often it occurs with MOM asymptomatic patients, appropriate medical protocol should be undertaken: “Do no harm”.  Up holding that oath should be the key defining the procedures. Simple, albeit expensive tests, can be done to uncover any harm/issues if the tests are conducted by the right people with the right protocols and equipment.
o   The tests used should be those that are KNOWN to provide the optimum ability to detect any damage that has occurred and the severity of that damage and  then assessed in concert with all information.
§  The sonogram on the hip recommendation- The sonogram provides a very different resolution on the hip vs a MRI Mavrick protocol. In my case, had I based my decision based on that sonogram, I would have likely done nothing.
·         My sonogram indicated “the soft tissues are grossly unremarkable.”
·         The MRI did not indicate that all.  There was instances of both soft tissue damage and bone damage (osteolysis), albeit no infection was evident  which is likely why I have no pain at the moment.
§  The toxicity tests should be conducted with the appropriate reporting data in order that the test results are put in a meaningful perspective. What does it mean to have “high” levels if the levels are being compared to toxicity derived from the environment (skin, inhalation etc?.)  The answer could be something or nothing.  Who knows? 
o    Don’t wait to seek testing until you have pain.  Pain is something that develops over time and exposure to problem situations.  If there is evidence of something that might cause progressive deterioration, should that evidence not be surfaced prior to it causing pain and irreparable damage?
o   Don’t make decisions based on one piece of information but rather look at the big picture.  I don’t think any one of these items listed below alone, would make me replace this hip other than perhaps the pain.  Pain however, is not the only determinant for replacing this hip. These are the 4 things that one of my consults recommended reviewing:
§  Bone damage surfaced through the appropriate MRIs.
§  Soft tissue damage surfaced through the appropriate MRI
§  Metal ion levels associated with  chromium and cobalt
§  Track record of the hip implant (in this case the depuy implant)
·         Understand that there is not a lot of information out there on the progressive nature of the ions on the hip because baseline MRIs and toxicity levels are not run routinely in order to measure anything pre or post surgery.  You should also know that hospitals don’t run routine toxicity levels post mortem so we don’t have a lot of information surrounding the long term effects of this MOM hip on anything.  Pain is the first thing that would draw attention from the medical community but my question:  Are the patients experiencing pain just the initial tip of an iceberg?  If we know that the metal can cause progressive deterioration, how long does it take to surface that pain and once it does, it a bit late in the process?  Is there something that could have been done earlier to detect the start of the deterioration?
·         Make sure you steer your own ship of consultants to a decision that is informed on all sides with input from your team.  A decision rendered from any member of your team is uninformed absent collaboration between specialists.  Does it really matter what the radiologist says if that person doesn’t understand the toxicology issues?  NO. Does it matter what the lone surgeon says absent clear radiological evidence describing the situation that has occurred? NO.  I learned a lot from one of my consults that you must look at the big picture and put all of the puzzle pieces together before you make a decision. 

       My team consists of:

o   My orthopedic surgeon who initially performed the surgery
o   My internist (coordinating and serving as a quarterback who will collect all of the evidence and render her decision along with your orthopedic surgeon.)
o   A radiologist skilled at using the right protocol to provide optimum visibility into the soft tissue and bone ramifications.  These protocols are available by the leaders in the field so make sure you ask about the radiological protocol used before you do the MRI.  Is it MARS or MAVRICK protocal.  If it is neither, I would look elsewhere or ask about the most current methods to adequately uncover soft tissue and bone damage with this problem.
o   A toxicologist who “gets” the implication of these metals and who can ask appropriate questions about other symptoms or issues that you may not have linked to this problem.
o   A second orthopedic surgeon, experienced in revision surgery who can verify that the original hip was placed properly.  I surely wouldn’t use the same surgeon you used initially if the original surgery had placement issues. The exact angles of placement can be measured with the right equipment. Further/make sure you ask the surgeon doing the revision how many he/she has done and what the results were of them. (A general rule of thumb.  A normal orthopedic surgeon conducts about 500 surgeons per year…yep, about 10 a week. I would want to work with one who has 10-15% of his practice in revisions…Revisions are not simple procedures!  They are NOT!   They are not routine.  If you are dealing with someone who has only done a few of these, seek another surgeon who has the experience and understand thoroughly their track record before you move ahead.)
o   An orthopedic specialist who is very familiar with the research underlying the ions and the hip.  These are few and far between.  You have to do your homework to find them. This person may not be the best person to conduct a revision surgery by the way.
o   In my case, I added a nephrologists’ opinion due to my having only one kidney remaining knowing that the kidney is a “targeted” organ for one of the metals.
o   The toxicologist is recommending that I consult with an endocrinologist due to my diagnosis of something related to the thyroid.

Is it necessary to have so many opinions?  Absolutely not as most people dealing with this issue are symptomatic with pain. It is likely that if you are experiencing pain, this decision is quite a bit easier to make since you are in the category of being symptomatic.  Getting rid of the pain is the most important focus at that point.  I would however consider having the MRI and the toxicity tests prior to removing that hip and I believe this is the recommendation of Depuy.  If you are asymptomatic, assembling the pieces of the puzzel is more difficult.  The answers are not as obvious.  You have to collect the requisite information from your team of specialists.

The American Orthopedic Association assembled a panel of experts which I reported on at the end of January in a 5 part series. You can look at those panelists.  They all have active practices and are informed on all of the issues.

 Hope this all helps provide at least one perspective, a non medical perspective or patient perspective at that! Now that I have seen all of the consults, hoping to have a decision from my team in the next few weeks.
Best,

Connie

3 comments:

  1. Ervery person with a depuy hip should read this their are doctors out their that look at the xrays and do nothing more.

    ReplyDelete
  2. There are indeed doctors who only look at the xrays. My husband (44) has had both of his hips replaced with the depuy model, and has had pain in the right one for quite awhile. His original surgeon called all of his patients together and only offered xrays. He did not think it necessary to conduct any of the testing reccomended by depuy.Patients who wanted at least the testing reccomended by depuy were referred to other doctors for follow up as he did not want to be involved with the recall. The followup doctor would not treat anyone who did not sign the release for depuy and did not see the necessity of looking beyond the xrays either. We had to basically push him into testing my husband for metal toxicity (which was elevated) and a regular MRI. He wanted to followup on the elevated cobalt and chromium levels in 6 months instead of the recommended 3. Needless to say that was enough and we have a new doctor as we do not understand having to push the previous ones into following protocol. This is ridiculous and I worry constantly about all of those elderly patients who took the surgeons advice , got an xray and went home. I wondered if that is how he would have treated a family member?

    ReplyDelete
  3. good comments. I really believe that patients have to serve as thier own advocates. Unfortunatley, many can't and that is unfortunate.

    No patient is required to sign a depuy release of any sort. Depuy is interested only in obtaining some proof that thier hip was in fact placed in the patient. I fing that to be a complteley resonable request. If a physcian insisted that you sign a release form of any sort, you need to change physcians. A physcian is not in a position to insist that you sign anything.

    Thanks for your comment!

    ReplyDelete