The bad news itself

If you have read the previous two posts, waiting to hear what exactly happened during yesterday morning's appointment that has got me so upset, this is the place to be. I will post my x-rays and do my best to explain the complication that has arisen and how we will remedy it. But first, a quick shoot taken this morning as my mum and I waited to see my surgeon, just to prove that not everything was clouded by a grumpy haze like the last two posts may imply.

I was actually happy, smiling and making jokes with my mum while I waited for my surgeon. I was excited to see my x-rays and the progress I was making. Look at that smile. I had no clue what was about to happen =(

The last post left off with me telling my surgeon how I was feeling and him turning to my x-rays.
Between taking this picture and actually seeing my surgeon, my mum and had already seen the x-rays on the computer screen. We had looked at them, scrutinized every last detail, and discussed what we thought we saw amongst ourselves. There was already a growing feeling that something was not quite right, but I couldn't really figure out what, why or how. Instead, I pushed the feeling away and waited to hear the surgeon's verdict.

So I knew that the news wouldn't be entirely good, but I tried not to think about it until I had all the information. This next bit is really important to keep in mind. Before I say anything else, I want to stress that what I found out today is nobody's fault - not that of my surgeon, myself, or anyone else. The complication that I am now dealing with is rare and seemingly random - it cannot be attributed to any one action; it is just something that, for whatever reason, happened. Furthermore, despite this complication, I continue to receive amazing care and fully trust my surgeon and how he proposes we proceed with things. As always, I 100% believe that he has my best interest at heart. I also believe that although this complication is rare and therefore probably of interest to any orthopedic surgeon, he is as unhappy about it as I am. After all, he is the one who has to fix things and take responsibility if mistakes are made. Just remember, this is nobody's fault! And with that said, here is my latest set of x-rays. Take a moment to look at the second one and see if you can spot what it wrong.

Got it? Okay, time to explain what is going on.
These images show that the bone transport has been working. The fixator has continued to move the loose chunk of bone down, therefore increasing the gap at the top of my leg. Cartilage has been growing in that gap - it is most visible at the top of the gap where, of course, the bone transport started. This makes perfect sense. As cartilage slowly turns into bone, it becomes more dense; the denser it is, the more of it and whiter it shows up on an x-ray. Throughout the rest of the gap, you can see tiny stringy lines that are also cartilage. These lines represent the path the bone being transported downwards took. But this cartilage is still rather new, so it doesn't show up very well on the x-ray. As a result, it appears as if I just have a gaping hole in my tibia, but my surgeon assures me that I don't. This is all really good news! As of yesterday, I had grown about 5.6 cm or 56 mm of bone. Beautiful!

So that's going well - the top gap (which isn't really a gap at all but filled with lovely new cartilage that just doesn't appear on an x-ray yet) is all good. Now draw you attention to the much smaller gap at the bottom of my leg. There appears to be what looks like a splinter of bone sticking outwards, in front of my fibula, into my calf. This is what my mum and I noticed before the surgeon walked in to speak with us; it is this that had us a bit uneasy. And the surgeon confirmed out suspicions - something is wrong.

That little white splinter is called a heterotopic ossification. It refers to bone that is growing in soft tissue. Bone growing where it shouldn't. My surgeon was as surprised to see it that as we were. There was no indication in the previous x-rays that something funky was going on so this was completely unexpected. On top of that, heterotopic ossifications are rare so of course nobody would think that it might happen. So how on earth did it get there? Let me explain.

I am growing my new tibia from the top down. This means that we started growing new bone in the gap at the top of my leg and more bone, or cartilage I should say, is grown as the loose piece of bone is transported downwards. We will have completed the bone transport process and re-growing cartilage once the loose piece of bone reaches the bottom part of my tibia. This is called the docking site. No bone is supposed to grow in that gap because the two surfaces of bone need to be smooth/even to connect properly. Because the gap at the bottom is so large (although it gets smaller throughout the bone transport process), the bone has nowhere to reach out to and connect to - the gap between the ends of the bone is to large for the ends of the bone to bridge (in contrast to what is happening in the top gap, where the bones are pulled apart a tiny bit at a time, allowing bone to bridge the gap). Therefore, there should be no bone growth. But there is and that is because of this heterotopic ossification.

Here is a close up of my heterotopic ossification. Try saying that ten times fast!

For whatever reason, a tiny part of the bottom end of my tibia decided to grow. We don't know why because it had nowhere to go. This tiny piece of bone was only a tiny part of the width of my tibia. This new bone grew upwards. Meanwhile, the loose chunk of my tibia was being transported downwards. At a certain point, these pieces of bone bumped into each other. The pressure that the external fixator and the daily adjustments exerted was enough for the loose piece of bone to knock the new odd bone to the side, causing it to kind of splinter. This boney splinter thing is sticking into my calf, pushing against tissue, muscles, nerves, whatever is in its way. It is this that is likely causing the numbness in my toe, heal, and bottom of my foot. It may also explain some of the increased pain I have been experiencing over the last week. But this is not all that is happening.

If you look at the bottom gap of the x-ray again, some of the new bone (that should never have grown to begin with) is still sticking upwards, preventing the loose piece of bone from being transported downwards. Because of where this piece of bone is, the bone transport has stopped. While I am still able to adjust my fixator, and have been doing so twice I day as I should have been, doing so does not result in any downwards movement for the piece of bone attached to the top two pins. This means that the outer portion of my fixator and the top pins are continuing to move but the actual bone is not because the new odd bone is preventing it from doing so. This has resulted in a lot of pain. If I were to continue adjusting my fixator, meaning the fixator and pins, the pins would bend and possible break while my loose piece of tibia would stay in put where it is right now, prevented from moving. Scary!

So what now? My surgeon said that the only option is to surgically remove the odd new section of bone. He needs to clear out the bottom gap and cut a tiny bit of either end of bone to make the surfaces smooth so that there is a proper docking site. In addition, he needs to see if he can remove the splinter of bone sticking into my leg. There is a big muscle about where the splinter is. He won't know what exactly the splinter is sticking into or touching until he opens my leg up. He does suspect that it is pressing on a major nerve which is why I am experiencing all of the numbness in my foot. If he thinks that it is safe to remove, he will do so. if not, he will leave it as is and it will slowly be absorbed back into my body over time. The risk in removing it is that it could damage something can cause permanent damage. We hope that the numbness I have now is reversible.

According to me surgeon, I need to have surgery as soon as possible. If we wait too long, there is a risk that the new cartilage at the bottom of the gap at the top of my leg knits to the piece of bone being transported. If this happens, I would require surgery to cut those pieces of bone in half again (another osteotomy). The earliest date that my surgeon can fit me in for surgery is next Friday at eight am. He has to make some phone calls, however, to make sure that this is possible; he has to have the OR time, staff, etc., needed to perform the surgery. He seemed confident that he could get that date and that he would see me next Friday. In the meantime, I am waiting for his assistant to call me with a fixed date and time for surgery and a date for my pre-op appointment. Yes, I still have to go through pre-op even though the surgery is on such short notice. This isn't an emergency as in a life or death event, but it does need to be done as soon as possible if we want the bone transport to continue to work. I am unhappy about having to do pre-op again and said so to me surgeon, that it is a waste of time. He agreed.

This is obviously not the news we were expecting to hear. It is a rare and unpredictable complication. I felt stunned and shocked when I found out, kind of suspended, not knowing what to think. I was rather quiet for the rest of the day; something my mum can tell you only happens when I am really upset or pondering really bad news. This doesn't happen often. The few instance it has happened include getting MRI results last year in January, coming home after a bone scan several weeks later and being told I would need surgery when I saw my surgeon on my own several days after that - that's about it since I found about the relapse. Before I went to bed, my mum told me I looked frazzled. Even today I still I still feel stunned. The prospect of needing surgery within a week without prior notice is daunting. Out of all the complications I knew could happen, including a lack of bone growth and infection, I never imagined this would happen. I didn't even know that this was possible! If there is a bright side however, it is as my surgeon says: if my bone is already producing bone so quickly, even if it is in the wrong spot, there is a good indication that it will heal properly once the ends of my bones do meet. And that means that I could avoid more surgery after the one next week (50/50 chance).

Furthermore, this complication means that I have to stop adjusting my frame. As of today, my surgeon estimates that I would have had about 0.9 cm, or 9 mm, of bone left before the ends of my bone met. Until the heterotopic ossification/odd need wrong piece of bone is removed, however, I cannot continue with the bone transport. This makes sense because the odd new bone is in the way - I would only be moving the fixator forward and bending the pins, along with causing a world full of unnecessary pain. In the meantime, I was actually instructed to turn the bone transport back a few millimeters. This means that I am turning the knob on my fixator counter clockwise, thus increasing the length of the bottom gap, increasing the length between the pins/clamps and of the external fixator and most importantly, undoing some of the bone growth I had already done. I will be losing 3-4 mm by doing this. I don't like it, but it has to be done to reduce the amount of pain I have been in and a bit of tension on the fixator caused by the fixator moving forward and the bone remained behind, caught on the odd piece of bone. Furthermore, the surgeon has to trim some bone off of each end of bone around the bottom back to ensure that the edges of the docking site are smooth.

So, here are the numbers:

• As of today, I had approximately 9 mm of bone growth left.
• 9 mm of bone growth equates to 12 days of adjustments (9 mm/0.75 mm growth a day = 12 days).
• Given that, I should have been done growing bone/with the bone transport on March 16th.
• BUT we have to stop making adjustments for at least an entire week until I can have surgery to deal with the heterotopic ossification,
• AND I am backing the fixator up a bit,
• AND the surgeon has to remove a bit of the ends of my tibia to create even surfaces for the docking sit.
• This means, according to my surgeon, that I will have about 15 mm more to grow.
• So, 15 mm to grow/0.75 mm of growth per day = 20 days of adjustments.
• If surgery is on March 11th, I would start making adjustments again right away. This would probably start the morning of March 12th.
• Add 20 days to that, which brings us to March 31st.

So here's the deal. I was originally told it would take 95 days to regrow the missing section of my tibia. This would have brought us to March 6th, which is tomorrow. But, because things went a bit slower than expected (maybe there was more slack in the system, but I don't actually know), I should have been done on March 16th. No big deal. Thanks to this complications and this surprise surgery to save the bone transport process, I won't be done re-growing my tibia until March 31st. *sigh* It will be worth it when it is all over and I can walk again. I just have to keep reminding myself - keep going after the carrot on the stick. It is just frustrating to now that my body is healing itself, it's just healing itself wrong. My bone healed wrong. If it wasn't so damn serious, it would almost be funny to say that.

And now to end on a good note, here are some silly pictures my mum took of me while we waited to see my surgeon.