An Orthopaedic Surgeon to the rescue!

Getting a referral to an Orthopaedic Surgeon (OS) and being able to put a name to what was wrong with me was both a relief and yet another thing to scare me. For one thing, I now had the ability to type my ailment's name into Google and to go to town seeing just how bad things were for me. The problem was that I had no idea exactly how bad the defect in my knee was.

I knew from exhaustive internet searches that OCD's have a scale that measures...well...how much damage has been done to the knee. I was hoping that mine wasn't that bad, but as my local GP hadn't known much about it and my OS appointment was still a little while away, I could really only guess.

Stage 1. Cartilage begins to weaken
Stage 2. Cartilage begins to fragment
Stage 3. The cartilage has fragmented but hadn't come away from the bone.
Stage 4. The cartilage has separated from the bone and is loose in the knee.

I read about the usual symptoms of OCD and had trouble matching them up to my own problems because most pages talked about a slow onset or about a nasty accident causing them. Mine has happened while I slept and I'd had no slow build up of symptoms. I did find one website here that gave a pretty good description of what I was going through.

I could especially relate with misdiagnosis and with sitting in a doctor's office saying, "See? There was something wrong with me knee!"

My OS referral was to a surgeon called Dr. Ivan Astori and he turned out to be someone who was able to give me the answers that doctors couldn't. He was able to explain exactly what was wrong with me, what may have caused it and what my options were to have my knee fixed.

My first appointment was good. By then I was in tears each day with my knee. It was constantly swollen and I had a very noticeable limp. Not so much from the pain (although it hurt) but because my knee wouldn't bend properly and whenever I put my full weight on it; it felt horrible.

After much prodding and poking and looking at X-rays and MRIs, Dr. Astori gave it to me straight. I had a large OCD lesion in my knee that looked to be around 2x2cm - making it quite significant. The reason my knee wouldn't bend properly and the pain I was feeling was because I had 'knee mice' running around in my knee. 'Knee Mice' being the loose bits of bone and cartilage that had fragmented away from the bottom of my femur. They were getting stuck in my joint and causing me pain.

So, the surgery he recommended had two part to it. Firstly, he wanted to do an arthroscopy on my knee and pull out the fragments that were hurting me, as well as clean up the lesion in my knee. This, he said, would get rid of most of my pain, swelling and discomfort.

The second thing he wanted to do was MACI surgery - which involved him taking a sample of my cartilage, and it being cloned/grown in a lab. Then these cells that were lab-grown would be re-implanted back into my knee. It was open knee surgery, it would leave me with a big scar and it was expensive... Oh, and it would mean spending 6 weeks on crutches and a 12-18 month recovery period with a lot of Physio. Terrific! However, Dr. Astori believed that due to the size of the lesion, that it was my only option if I didn't want to get Osteoarthritis down the track.

                  

So off I went with some information brochures about knee arthroscopies and MACI surgery, an appointment for an MRI and a feeling that things were going to get a lot worse before they got better.

Finding A Doctor

The first doctor I went to after I hurt my knee was puzzled by my symptoms. 

Yes, my knee has swollen - but not too much. I was struggling to bend my knee properly though. Almost from the minute that I hurt my knee, I lost flexibility in it and the longer it went on the harder it got to bend my knee to any great degree.


Yes, my knee was hurting - but I couldn't exactly say where. I had two spots on my knee that seemed to have these round little lumps under them. Both of the lumps would pop out from under my knee cap or slide back under if I touched them. They were excruciating to touch - I almost passed out when I first pressed down hard on one.  

Other than that though, I was vague with my symptoms. My knee was aching and it hurt a little when I stepped on it- but nothing too bad. It felt a little tight and I didn't want to put my full weight on it because it...well...it just didn't feel right.

Doctor #1 said that she thought I'd possibly done something to the meniscus in my knee or that it was possibly a mild ACL strain. The fact that I had just woken up with my knee like this and that I couldn't remember hearing a snapping sound, meant that she really had no idea exactly what was wrong with me. She gave me anti-inflammatory pills, an X-ray referral and some pain killers and told me to take it easy for a week and then come back and see her.

The X-rays, when I got them, came back with a report that said that there was no sign or a break, fracture or dislocation. However, when I looked at the X-ray there was pretty obviously something wrong to me. There was a chunk missing from the bottom of my femur. The missing notch was pretty big too - it looked like it was at least as big as my thumbnail.

A week later (more than a week, if I'm honest) and I went to my normal doctor in West End, instead of the other doctor. My regular doctor didn't seem to think that it was an ACL injury and instead told me that it was possibly soft tissue damage or possibly some minor meniscus damage that should have healed up by now. He implied that I was making it up and that he didn't think there was anything wrong with me because my symptoms didn't match anything.

He referred me to Qscan for an CT-Scan and  told me to take it easy for a week and take some pain killers if I needed them.  I decided I needed a new doctor.

I went to get my CT scan and got told when I got there that although the CT scan would be bulk billed, it wasn't going to show any injuries that the doctor was looking for. They recommended I get an MRI, which would cost me $300. Unfortunately I couldn't afford it, so I went ahead and got the CT scan.


Luckily, the person who wrote the report for my scans was better than whoever wrote the X-ray report. They saw the chunk missing from my knee and several other bits floating around in my knee. They correctly stated that I had an OCD lesion in my knee and that there were several fragments floating freely in my knee.


When I went back to see a new doctor, she read the report and did some reading herself told me that I had an Osteochondral Defect in my knee - something which was quite rare in women of my age who don't engage in high impact sports. She explained that reason that the other doctors hadn't picked up on it was because OCD's usually happen to men who play sport  and was especially common in football players. 


There was nothing that she could do for me, she explained, other than give me more medication to handle the swelling and the pain. In the meantime, she gave me a referral to see an orthopedic surgeon and informed me that depending on how bad the lesion was, I would probably need at least one round of surgery to clear it up.


Not a happy start to my 2011.

I’m starting this blog to share my story with other people who might find themselves in the same situation as me. There is a lot of information about OCD on the net, but not a lot of it really tells people what is wrong with them and what symptoms to look out for! Let alone what you can do to get help.

My name is Lena and this year I found out that I have a 2x2cm Osteochrondral defect in my left medial femoral subchondral. Sounds crazy-complicated doesn’t it? It’s not -  basically, I have a massive gaping crater in my knee – specifically, I have a crater on the bottom of my femur. Chunks of cartilage and little bits of bone have come away from my knee.

You’ll see the terms ‘OCD’ ‘Osteochondritis Dessicans’ and ‘Osteochondral Defect’ thrown around a lot in this blog. Sorry about that, but if you’re here then you’re probably here because you have OCD yourself or you know someone who does.

 I’m currently one month away from having MACI surgery to fix the defect and now seems like a good time to reflect on how this started!

Things fall apart...

I’d always had a bad left knee. As a child I’d been heavily involved in competitive sport – much of it high impact like sprinting, hurdling, triple jump and netball – so in retrospect it was no surprise that I’d damaged my knee at some stage.

I remember that I first hurt my knee when I was around 12 years old. I was skateboarding down a hill and I fell off. Although I wasn’t seriously hurt, or even slightly injured, my knee felt oddly tight. I didn’t think much of it and almost immediately went back to doing sport again, but within a few days my knee was swollen and almost too sore to walk on. The doctor thought I’d damaged my cruciate ligament and he prescribed rest.

A few months later and my knee seemed to go back normal. Well…almost. It would slightly lock up and give way on the odd occasion and if I did too much sport it would ache slightly and swell. But hey, I was a kid and I ignored it and kept on doing what I did best – sport.

Fast forward a few years later when I was in my final year of high school. Unexpectedly and seemingly without any reason other than me stumbling awkwardly down some stairs, my left knee swelled up to the size of a rockmelon and began to seriously hurt when I put pressure on it. My mother took me to a doctor after work and he gave me some anti-inflammatories and pain killers and told me to keep off it. He also said that I should get an X-ray and sent me on my way.

The swelling went down overnight and the pain vanished within a few days. I never got that X-ray – and it’s something which I have now come to regret.

I’m now 26 years old and my problems have come back with a vengeance. I’m not overly sporty, but until these problems started back in January I was swimming 1.5km a day and going to the gym every second day.  Everything changed one morning in January when I woke up and my knee felt wrong.

I didn’t have an accident. I didn’t fall over or bang my knee or have some sort of sport-related incident. I just woke up and my knee was swollen, stiff and was having problems moving. It didn’t hurt initially; it just felt like it was ‘out’. I felt like my knee needed to click back into place.

I did make one critical mistake on that day – I underestimated what was wrong with me. My knee had been bad for years – catching and feeling ‘out’ from time to time, but always it went back to normal. Not this time though. I remember kneeling on the floor to pick up my cat and putting weight on my knee…and then I remember pain.

I couldn’t tell you if my knee made a cracking sound (although I think it did) I just remember pain shooting up from my knee in this haze of red. I think I almost passed out from pain, and I know I certainly spent a long time laying on the round cursing and carrying on.

That was the start of this long, painful journey that I’ve been on, and the first step in one of the most confusing and frustrating periods of my life.