Tuesday, January 21, 2014

19 months post surgery - many questions...few answers

I was recently contacted by an on-line medical device recall website. The editor had read my blog and asked me to write an article about my metal on metal  (MoM) total hip replacement revision surgery and subsequent recovery for their community forum.  I was happy to do this since there is little useful information out on the internet about this type of surgery and recovery.   
I began by going back and re-reading my blog from the very beginning of my hip revision ordeal.  I realized, that while I am on the road to recovery - I have not recovered as I would have expected to be 19 months post surgery. In fact, I think I feel even more betrayed by the medical industry since I am still not whole - not mentally or physically as a result of the defective MoM hip implant.
Many questions - few answers...
I am 19 months post surgery as I write this. I still suffer from leg, muscle and joint pain as a result of the second THR revision surgery. As of October 2013 my Chromium levels are still elevated ( Cobalt is in normal range). I will have new labs taken in January 2014  to see if there is any change.
While the pain is not excruciating, and at times is just a mild discomfort -  it is always present. The Doctors in their infinite wisdom (sarcasm) say the hip is stable and everything looks great! But I’ve found that the Doctors really don’t understand – because their knowledge comes from a text book – not from a real life experience. They are doing the best they can (within the confines of managed health care and their experience) – but I live in this body and I would really like some answers as to why I feel this way.
  1. Why would after two surgeries and 19 months of recovery would I still have hip weakness, joint instability and pain in the surgery area and leg?
  2. I’ve been working hard to recover – I am not just sitting around waiting to get stronger! I am physically and mentally working every day toward 100% recovery – why then I am still struggling and having issues?
  3. What are the long term affects of the high levels of chromium and cobalt? No one seems to know the answer to that question. What will this mean to me long term?
  4. I can’t understand why the doctors aren’t more interested in these questions as well?
  5. Wouldn’t this knowledge help them as they treat future patients?
Some days all of this makes me angry, some days I learn to accept and let go and other days I wonder when and if I will ever feel normal again. But the fact is I worry – A LOT - about my long term ability to stay active and lead a normal life.  I worry that this new prosthesis is bad or incompatible (even though the doctors say it is fine) and perhaps that is why I feel all this pain. At other times I chalk it up to my active lifestyle – I still continue to cycle and do yoga (These two activities help to keep me sane and strong).

My hope is that all these muscle pains are just my atrophied muscles coming back to life – a little at a time. Perhaps these pains are compensating muscles that now have to overwork to make up for the muscles that are not working properly?

As always...Many questions – few real answers…