Laura's trochleoplasty and TTO

[LauraB]

I'm going into hospital on Monday (17th December) for a trochleoplasty.

A bit of background - my left knee started dislocating when I was 11 and has been a problem ever since (I am 31 now). I had a lateral release and a Roux-Goldthwait procedure when I was a teenager, which didn't fix the problem.

This year my knee has been particularly bad so I went to see a specialist (Mr Mark Forster in Cardiff, UK). This led to an MRI scan which showed that I have a dome instead of a trochlear groove. It was great to finally understand what the problem is after all this time, and I'm hoping this surgery will sort it out for good!

I have health insurance with work, and tried to get the operation done privately, however AXA PPP the insurance company refused to fund it as the trochleoplasty is classed as an 'experimental' procedure. Luckily, Mr Forster also works for the NHS and I have only had to wait about 4 months.

I've been told I will be staying in hospital for 1-2 nights so I will hopefully start my post-op diary when I return home...

[LauraB]

I was in the hospital for only one night, and arrived home yesterday. I'm currently in quite a lot of pain so will be doing the diary bit by bit. I wanted to start it before I forget too much of the detail...

[LauraB]

Day 1:

I went into hospital on Monday morning at 7am. They showed me to my bed and the nurses went through some questions and I saw the anaesthetist. I very briefly saw the doctor who marked my leg - I guess to make sure they operate on the correct one! He said they were planning on doing the trochleoplasty, and possibly some further stabilisation work depending on how it looked. I also saw a physiotherapist who gave me my crutches and showed me the brace they would put on.

I was third on the list for surgery that morning and so I was then waiting around (nervously) until around 11am when they came to fetch me. I walked to the pre-surgery room where I was given a local anaesthetic in my hand, they gave me something to help with the anxiety (not sure what) and then I had the general anaesthetic. I came round in the recovery room at about 2:45pm. There was quite a lot of pain when I woke up. I was given some morphine straight away for the pain, this affected my breathing slightly so they gave me some oxygen. They then hooked me up to a machine that gave me a dose of morphine when I pressed a button. The brace hadn't been fitted yet and I was worried about moving my leg, but I was wrapped in the bedding quite tightly so I don't think I could have moved anyway. The physiotherapists came to put the brace on while I was still in the recovery room and I felt better knowing that my leg was fully supported.

I was back in the ward by about 3:30pm and pressing my morphine button quite frequently. Later on that afternoon my oxygen levels were low so I had an oxygen tube in my nose. I think this helped with the pain as well. I had some tea and toast at about 5pm. The physios came by around 6pm to see if I wanted to try a few steps with the crutches but I didn't feel ready yet. My husband came to visit for a couple of hours.

Since I wasn't able to walk to the bathroom they brought a commode to my bed (like a wheelchair with a bedpan in it). This was quite tricky and I got the feeling that the nurses didn't really know what to do with me as most of the other patients in the ward were having knee replacements and they seemed to be able to bend the knee straight away and had no brace. So they weren't really prepared for me having my leg stuck out straight and needing something to rest it on.

The pain was bad during the night I slept on and off and was using the morphine button a lot. The nurses came in throughout the night to give me antibiotics and to check my blood pressure and temperature. My leg swelled up quite a lot during the night and my foot was going numb so they loosened the brace, I think the pain was partly due to the pressure of the swelling so that helped as well.

[LauraB]

Day 2:

In the morning I saw the physiotherapists who got me up walking a few steps with the crutches. I was able to put some weight through my leg without too much trouble but had difficulty moving my leg forward to take steps.

I saw the doctor who confirmed that they had moved my patella tendon as well as the trochleoplasty, and they had also done some medial reefing. My leg brace has been locked at 30 degrees, and the restricted movement is mostly to protect the work on the tendon, rather than the trochleoplasty.

I felt a bit dizzy from the painkillers I'd been given (tramadol) which delayed things a bit but later on the physios came back and took me to practice going up and down steps. As the physios were happy with my mobility I was discharged at 3pm. Just before I left the nurses changed my dressing as the wound had bled out a bit. The dressing was underneath a load of tightly wrapped bandages, so they removed them but didn't put any more bandage on. I found it more difficult to walk with just the brace, so I think the bandage might have been helping to support it.

My husband (Martin) came to pick me up and I sat across the back seat of the car as I couldn't fit in the front seat. The journey was quite painful and when we got home I had real problems walking into the house, and Martin had to push my leg forward for me. Once home we put a tubigrip on under the brace which gave me a bit more support. The stairs were difficult but I managed to get upstairs, with Martin's help, and settled. I was pleased to be home at this point!

[LauraB]

Day 3:

Stayed in bed, just getting up to go to the bathroom. I've had my leg elevated on a pillow to try and help with the swelling. I noticed when I woke up in the morning that my foot was less swollen. in general the pain has been quite bad, although it does come and go. I have been taking Paracetamol, Ibuprofen and Tramadol for painkillers, which they gave me at the hospital.

[LauraB]

Its now day 6 and the last couple of days have been fairly similar. I managed to get downstairs yesterday for the first time which was quite daunting. I still don't have very much control of my leg when walking with the crutches and I am afraid of falling down the stairs.

Otherwise the pain has been manageable - it comes and goes rather than being constant. I am getting the odd dizzy spell which I think is down to the painkillers.

I'm hoping to be a bit more mobile by Christmas which is 3 days away. May even be able to leave the house but will see how it goes...

[carty]

hey, I will follow your blog. Nice to read about trochleoplasty of an adult. As far as I understand it is seldom done and even more seldom in adults. Mostly it is done in teenagers and young adult.)
I'm in a similar situation. Have a bad trochleadysplasia (and due to that arthritis of my knee cap). My doc has offered trochleoplasty to me, to stop the process, but we both are not sure, since I have no real dislocations.

I with you the very best for christmas and for your knee. I will come back and would like to read more about your journey.

[LauraB]

Hi Carty - my surgeon said that they normally do a trochleoplasty on younger patients. He said that the cartilage is more flexible when you are younger, and when they deepen the groove the cartilage has to fit the new shape, so there is a risk the older you get that it won't work properly. In the past he has done a trochleoplasty on someone in their 40s, which was successful so I wasn't too worried!

[LauraB]

Day 11:

I am really starting to feel like things are improving. Today I left the house for the first time and went for a short walk in the park to feed the ducks (my favourite activity!) I am still very slow walking, but it isn't too painful. I am finding that the worst pain is when I first stand up after having had my leg horizontal for a long time. For example when I first get up in the morning, I get shooting pains down my leg, but they don't last very long. I am currently taking tramadol and ibuprofen for the pain.

Yesterday was another milestone - I had my first proper shower since the operation! Our shower is in the bath and so getting in and out was tricky. I was sat on a plastic box in the bathtub with a plastic bag wrapped around my brace.

I am also now able to get up and down the stairs without too much difficulty. If my knee is hurting then I go down the stairs sitting down with someone holding my leg. It's not very elegant, but it works!

Over the last couple of days in particular my knee is getting stiff and I want to bend it. I have a 30 degree movement within the brace , so I can bend it a little bit and often when I bend my knee it clicks. I was slightly concerned about this at first but I'm assuming it's normal. I currently have no idea where my kneecap is due to all the swelling, so I am wondering if the clicking is due to the kneecap moving around.

One thing I am concerned about is blood clots and DVT, especially after reading some of the threads on this site. Yesterday I noticed the back of my knee was tender and had gone purple so I panicked a little bit. I phoned the doctor who said it sounded like the purple colour was due to the blood from the operation pooling underneath. He also said that he would expect my calf to swell up, go red and be painful if I had a blood clot. Since I didn't have these symptoms I was less worried. I think it is better to be safe than sorry though!

[carty]

true, that is what my doc was telling mee too. in my case, im almost 33 years, he is not too worries with age, but apart from severy wear and tear on my kneecap, there is also beginning wear and tear in my trochlea grove, meaning my cartilage there is not very flexible any more. so although he told me, it might be an option, he was skeptical too and so am i. he told me, if i would not have the beginning wear in the grove, he would have recommended it to me very strongly.
now we want to wait and see how things develope. (i need to counsel him in the new year.)

i wish you good progress. so far it sounds fair enough. happy new year!

[LauraB]

2 weeks post-op:

Things are going well. I am walking around with the crutches much more easily and I can put weight on my leg without any trouble. I still have some pain, but it isn't as bad and I'm now only taking the strong painkillers when I need to, rather than every 6 hours. I'm not getting the shooting pains when standing up anymore which is great.

I went to my local doctor's surgery a couple of days ago to have the nurse check the wound. She said it is healing nicely. The stitches are dissolvable and look very neat - it looks much better than the last operation I had where the stitches were plastic and quite thick. My knee is still swollen (although the swelling has gone down) and it is also very bruised so quite unpleasant to look at! The stitches end with a loop at either end, and there was some confusion about what to do with them - the doctor came to have a look and he wasn't sure either so they had to phone the hospital for advice. In the end they decided to leave it until I go back to see the surgeon next week.

The nurse also said it is fine to remove the dressing and that it's ok to get it wet, so I have been able to shower without the brace on (sitting down in the bath). I have also started putting ice on my knee to try and get the swelling down more.

I have been trying to bend my knee up to the 30 degrees which the brace allows, but am struggling. Sometimes I can bend it ok, and other times I try and bend and it feels like something is stopping it. It doesn't hurt, but just won't go any further. I don't know if this is due to the swelling, or if things are not quite lined up properly. Sometimes my knee will click and then it bends ok.

So in general I feel like things have improved a lot. It's good to be able to move around without pain. I haven't left the house for a couple of days but that is more to do with the bad weather than anything else (lots of heavy rain - typical winter weather where I live in South Wales!)

Happy New Year!

[LauraB]

Day 18:

The swelling has come down a lot, in particular around my shin which now looks back to normal apart from the bruising. My knee is still swollen but I'm exepecting that to be the case for a while yet.

I have also started back at work - I work for a software company so I am able to work from home. My current setup is sitting on the bed with my laptop on a little table. It is nice to get back to normality.

Yesterday things were going very well - I had very little pain and am able to walk about without the crutches for short distances. This was great because I was able to do some cooking and not feel quite so useless! I have also been able to bend my knee up to the 30 degrees that my brace is locked at, and I have started to activate my quad muscles (although they are very weak still).

So since things were going so well I didn't take any painkillers... and then I woke last night with really bad pain which felt like it was coming from inside the joint. I took a tramadol but it took a while to kick in and I couldn't sleep. Maybe I overdid it yesterday, I'm not sure.

[LauraB]

3 weeks post-op:

Yesterday I went into the hospital to see Mr Forster for my first follow-up appointment. He confirmed that I have had a TTO as well as the trochleoplasty. I thought this was the case, but not entirely sure of the terms!

The only concern at this point is that I can't bend past 30 degrees at the moment, which is probably due to scar tissue. My brace has been extended to 60 degrees so I will keep trying to bend it as much as possible.

I have been given the go-ahead to start gentle excercises so I am going to my first physiotherapy appointment tomorrow. There are some things I am not allowed to do at this point - such as lifting the leg. It seems that the restrictions on movement are down to waiting for the TTO to heal, rather than the trochleoplasty. At the moment, the patella tendon is being held together by the screws but after 6 weeks the bone will have healed and then I will be able to start physio properly.

The swelling has reduced around my knee and the wound has healed well. The pain has not been too bad - it does get quite uncomfortable at night so I have had some trouble sleeping.

Annoyingly I have been getting dizzy spells, including once having pins and needles/numbness all over. I've looked it up on the internet and it sounds like this could be withdrawal symptoms from the tramadol. I don't need it so much for the pain now so I am trying to reduce the amount I take gradually.

[LauraB]

4 weeks post-op:

I had my first physio appointment at the end of last week and have been given some excercises to do: gentle squats holding onto the back of a chair, activating the quad muscles and trying to bend my knee as much as possible. I'm still quite restricted due to the brace, so the physio will start properly in a couple of weeks when I get the go ahead to stop wearing it.

The excercises are going ok, but I am still worried about my lack of bend. My brace is locked at 60 degrees and I'm nowhere near that. I have been trying to push it as much as possible and I can get to about 40 degrees. It doesn't really hurt - just doesn't want to go past a certain point.

I haven't had too much trouble with the pain - I'm occasionally waking in the night with it hurting. Also painful when I jolt or knock my leg, but in general it doesn't hurt when resting. I can get about quite well without the crutches, so feel like I'm getting a bit more back to normal. There is still some swelling and I have been putting ice on it.

[LauraB]

4 weeks + 1 day post op

A couple of milestones worth mentioning:
- I can now sleep on my side! I'm still wearing the brace at night so this involves propping my leg up on pillows.
- Today I managed to get in and out of the bath without assistance!

Small steps I know, but its nice to be on my way back to normality