I wanted to post something online for the rare chance that someone else will face a similar problem. I've searched high and low, but I seem to be fairly lonely out there with this medical situation.
In 2002 while I was training aggressively for an Ironman I developed an odd pain on the front and middle of my right tibia. I was xray'd and a ever so slight line showed up and I was diagnosed with stressfracture due to overtraining. The treatment was 3 months off my legs. 3 months passed and the line showed absolutely no change, and pain was the same when running.
To abbreviate this story, I went from doctor to doctor, took Fosamax for slight osteopenia, wore a bone stimulator for 3 months, stopped running completely - and by 2004 the line on the tibia had made absolutely no sign of improvement. And pain persisted. I was told by doctors that there was nothing more they could do for me - but I was really counting on being able to run again and kept pushing.
By then I had made it to a surgeon who suggested an IM rod. There was some hope that it would stimulate the bone around the suspected stress fracture (and no doctor ever question if it really was a stress fracture). I was open to all ideas and agreed to surgery in March 2004.
After waking up from surgery I was told the rod never got screwed in place since it had been a tight fit (and it might have saved me some discomfort over the years). But... quite soon after surgery I started to experience a different kind of pain. It was very difficult to describe, and quite honestly it felt different at different times. Back to the doctor! Now they started guessing it could possibly be compartment syndrome, although this was never proven. This was in the later part of 2004.
The pain never stopped me from going on with every day life, but it kept me from the thing that I love the most - running!! But around this time I also got pregnant (twice, back to back) and I put off any form of treatment for these years. But in 2008 I went back to at least have a bone scan done, and the result was: abnormal. Doctor could not say why, just that it was not what they expected to see if it was healthy. No infection was found though.
It's interesting to note that this doctor that I saw in 2008 recommended the following treatment: Removal of existing rod, placing in a new, thicker one, screw it in place, do a bone graft on the suspected stress fracture (that still looked the same) and for recovery EIGHT weeks completely non-weight bearing (no swimming even). Overall a pretty disruptive and invasive option! I live in a 3 story house with 2 kids under 4 - so I opted to wait since it still was not a matter of urgency or unbearable pain.
About a month ago I saw surgeon #555 (or so it feels!) and by now I have increased pain. Not bad, but to the point where I take anti-inflammatories at night to escape what now feels like dull ache or even like growing pain. The new approach - he does NOT believe that what I have is a non-union stress fracture! Wow! That's a thought - I never responded to anything that was done to stimulate it to heal so it makes sense. But after that many doctors all believe the same thing, so did I. Until now... now I'm just not sure. This new doctor suggested some possible bone abnormality around this area, but he was also cautious with saying that he knew for sure. Which I appreciate.
He took a look at the xray and basically told me the truth - this rod will be a pain to take out - it is very deep into the bone, and my previous surgeon did not cap it, meaning there might be bone growth down into the rod, and it will be difficult to get to and grab it. But other than that he is fairly convinced, based of new xray's that the rod is LOOSE in there! And my pain might be coming from the movement.
This particular type of pain from an IM Rod is impossible to find any info on. If you happen to come across this and have felt misdiagnosed and/or mistreated with an IM rod, please post! It would be very interesting to hear other situations and possible solutions.
I will have my rod out at the end of April, 2010 (in less than a week) and will try to post something about that experience during recovery.