Precise Nail Femoral Lengthening Complete

We have reached the end of Ava’s lengthening of her femur. The consultant opted for 4cm in the end rather than 5cm as this would have put Ava’s knees out of alignment. The 4cm has made a huge difference but there is still a discrepancy of c.2-3cm (on her lower leg and due to the shortening of her foot). You can see from the x rays below that the 4cm break is healing well and Ava is now weight bearing and able to walk small distances without a crutch. The reason for her being able to do this with a broken leg is that she still has the metal rod inside the middle of her bones holding everything in place. This remains in Ava’s leg for around 2 years and is removed via surgery.

This has definitely been the easiest of treatments so far. Yes it still involved a long and complex surgery and a long period of time where Ava couldn’t walk or do usual activities but the positives vs the illzarov frame are huge. No pin site cleaning, no infections, no cumbersome frame for people to gawp at and far less pain. For femoral lengthening I would highly recommend the Precise nail if it’s offered to you by your consultant. 

Ava is allowed to start walking but is not allowed impact or to participate in any sports until March at the earliest. I suppose because of Covid and the many lockdowns and restrictions this hasn’t been a huge problem at all. We now wait for the bone to completely heal and for our next appointment in March.

Ava has also been to an orthotics appointment. This was to create a mould of her foot so they can build a shoe raise for the inside of her shoe to help balance her out. Due to lockdown it’s likely this will be delayed but hopefully not for too long as this puts lots of pressure on Ava’s hips and foot.

The pictures below show her new lengthened leg in all its glory. It just needs a bit of sun on it to help heal the scars. Roll on summer 2021!

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6 Weeks Post Op

 It’s been 6 weeks since Ava’s surgery to break her femur and fit a long magnetic rod (called a Precise Nail) into the middle of her bone. We are now at a 3cm break and so far everything is going according to plan. This weeks hospital visit was to check in with the consultant and assess progress, have an X-ray (see image below which shows the break and what’s been achieved so far) and have a physio appointment. 

Ava is doing incredibly well and is coping with not being able to walk. She has settled back into school, gone back to her drama class on Saturday’s and has seen friends. It’s much easier to get through this process if your child and you are positive. Of course there are days when things are harder, perhaps brought on by pain or frustration, but generally we’ve all adapted. On the whole Ava can do most things herself now - getting dressed, showering (although she has to sit on a special stool as is unable to stand). She can’t carry anything so she’s being waited on more than normal ;) 

Compared to the Illzarov frame, the Precise Nail is a much easier form of lengthening. There are no open wounds so no infections and no pin site cleaning. Apart from the twice daily lengthening and the fact Ava needs to wear a knee brace and use crutches, you’d have no idea of what’s happening.

The consultant is happy with the progress so the plan is to see if we can achieve another 2cm, which would bring the break to 5cm. Fingers crossed for the next 4 weeks! 

0.5cm break and back to school

 We are now 2 weeks into lengthening and Ava’s leg is now 0.5cm longer (based upon the fact that we have pulled her bones apart via the magnetic process). We have had our first follow up hospital appointment with the consultant and you can see from the X-ray below how everything is working. It is truly a remarkable procedure and because it’s on the inside of Ava’s leg no one can see what’s happening.

The consultant spoke to us about the risks associated with the procedure - pain once the leg break gets bigger due to muscles, tendons and nerves also being stretched, and dislocation of the knee which is major as this would mean the end of the treatment entirely and would result in another big operation. To minimise the risk of the latter Ava must do quite intensive physio exercises several times a day. So lots to fit in with school, homework, lengthening and physio. 

Ava returned to school yesterday and while most kids would be feeling apprehensive after such a long time off, Ava is doubly so due to the fact she is returning with a broken leg and part way through a lengthening process. I think this is more about discomfort and potentially other kids reactions. I now have to perform the first of the day’s lengthening before school at 7am to ensure we allow sufficient time between the 2 distractions. 

The first day seemed to go ok and the school once again have been really supportive in making adjustments for her. This is obviously harder due to them managing the social distancing and year group bubbles due to Covid too.

We’re back at the hospital next week for another x ray and where the leg should hopefully have grown some more. X Ray images to follow! 

Lengthening Begins

Lengthening started yesterday and so far so good. The magnetic device is pre set to the amount we need to lengthen which is 0.33mm twice a day. Ava has to remove her knee brace for this and we place the magnet on her leg on the spot that the surgeon marked with a cross - which is where the magnet on the inside of her bone is. We need to clear the room of any other magnetic objects, otherwise they would be pulled towards the device - so no keys, phones, scissors etc

I then press the switch while keeping the magnet in place and it does the job for you. Very clever! Ava says that it feels like a small tingle in her leg when it’s happening and it’s quite noisy. It may start to get uncomfortable later once the muscles, nerves and tendons start to stretch alongside the bone, but hopefully this is minimal.

I’ll update more after we’ve seen the consultant for the first X-ray next Wednesday.

3 days post operation

We are 3 days post op. The operation itself lasted around 3.5 hours. It was difficult being there as 1 parent and without Simon as we usually share everything. It’s pretty tough seeing your child go under general anaesthetic, particularly when they’re petrified of the surgery. Although Ava’s has many operations and GAs it does not get easier for her or us.You then have to wait around the ward for surgery to be completed and for them to come round. Anyhow that’s over with for now.

There are more incisions on Ava’s leg than I thought. A large one on her hip which was used by the surgeon to drill a hole into the top of her femur which he then used to core out the centre of her bone. This is where the magnetic metal rod has been placed. There are a further 3 incisions - one where nails have been inserted which are attached to the rod, another to break the leg and one near the bottom of her thigh.

Ava is on strong painkillers and seems to be coping ok with the pain so far. We’ve had a few moments where she’s been in more pain but this eases if she doesn’t move too much. She has managed to get up on crutches but not for long as it tends to tire her out and she’s quite uncomfortable.

She’s a bit teary but I think this is more frustration than pain and is something that we’re used to as it tends to happen post surgery while Ava gets used to everything. At present she needs help washing, dressing and going to the loo - particularly as there are wounds all down the leg and quite a large one by the side of her bum. This may change once she is stronger and more comfortable. 

She will have to wear a leg and knee brace for the duration of the procedure which is to ensure she doesn’t dislocate her knee which can happen during lengthening. It’s something we really need to avoid as it will set back the treatment considerably. Ava also has quite a lot of physio that she needs to perform twice a day. The exercises last around 30 mins and involve various stretches of calf and thigh muscles. At present because of the surgery and the painkillers she is struggling to complete them all but hopefully the tiredness subsides soon as it’s really important that her muscles remain flexible during the process. 

The lengthening starts on Wednesday and we will be looking at 2/3 millimetre a day. The movement will happen twice a day via the large magnetic device. I’ll post again once this has started.

2020 What a year! – Brexit, Covid-19 and now LEG LENGTHENING Part 2

Hello again

It’s been 9 months since the end of Ava’s last procedure, which was an illzarov frame to correct the alignment of her foot.  This involved breaking her foot in several places, as well as her ankle and the bottom of her leg.  Overall, the process has made a difference to the positioning of her foot but it’s not perfect.  It’s also quite difficult to see the change in her foot as she currently has a 7 – 8cm leg length difference. 

We were due to have the surgery to commence leg lengthening in June, but due to Covid it was postponed. During lockdown Ava has grown quite considerably so the leg length difference is causing Ava pain and is making it very difficult for her to move around.  The pain is predominately in her hips and lower back as she has to tilt her body to balance and she walks with a severe limp.  Some days during lockdown Ava’s easiest way to get around was to walk on her knees.  Not nice to see as a parent and not great for her.

Due to the severity of Ava’s leg length difference the consultant has given us a date for the operation (and for the procedure to begin) which is next Thursday 20th August. So,we are 5 days away from the procedure and Ava and I are now in self-isolation due to Covid.  Anyone going into hospital has to do this and as I am staying with Ava throughout this time I have to self-isolate too.  This time around it’s going to be strange as Simon is not allowed to visit Ava (no visitors are allowed at all and only 1 parent) and I’m also not allowed to leave the hospital until she’s discharged, so I’ll be sleeping on the ward with Ava in a camp bed.

This procedure is to lengthen her femur (top of her leg) by 4cm.  Since Ava’s previous lengthening when she was 6 medicine has advanced, and rather than have a frame fitted, she will have the treatment with a Precise Nail.  This involves the lengthening happening inside her bone rather than with an external cage.  This is such a relief to Ava as she will have no gruesome frame attached to her leg, no pin site cleaning, and hopefully no infections as there will be no open wounds into her leg.  The Precise Nail treatment involves the surgeon breaking the leg and then drilling a hole into the bone at the top of her leg and inserting a long magnetic rod into the centre of her bone where the marrow is.  The lengthening process begins about a week later and is done via a huge mains powered magnet that I have to rest on top of Ava’s leg and set to a specific prescription.  The magnet reacts with the magnetic rod on the inside of her leg and gradually each day will pull the break in bones apart until we reach a 4cm break.

Much like the previous lengthening with the frame on Ava’s lower leg and the frame on her foot, the manipulation of bones has to be done incredibly slowly (2/3 millimetre a day).  The reason for this is that there are numerous muscles, tendons and nerves attached to the leg which will also have to be stretched during this process, so it has to be done with care to prevent damage and reduce pain.  The whole process is expected to take 4 – 5 months and much like before Ava will not be able to walk.  We will have to attend weekly hospital appointments for x-rays and to meet with the consultant to discuss the progress.  We are really hoping that this procedure, while still major, will be less problematic as there is no frame but I suppose until Ava has the surgery we won’t know.  She is thankful that there is no frame though – particularly as it should reduce the number of stares from strangers when we are eventually able to venture out.

At the moment Ava is understandably apprehensive about the surgery, which has started to happen with the recent operations as at 13 she is so aware.  She hates the thought of general anaesthetic, even though she’s had over 15 of them (the first when she was 3 months old).  She’s not mentioned much about the procedure after the surgery when we start the lengthening, but we are all viewing this more positively as it doesn’t involve the frame.  We’ll find out soon enough.

I’m now taking just over 3 weeks off work to prepare Ava for the surgery and gather enough supplies and lists of Netflix box sets to keep us entertained while in hospital.  Once discharged I have a meeting with Ava’s school about the logistics of her returning – due to Covid and social distancing, as well as the fact that she will be on crutches with a broken leg for 4 months!  We really want her back in school as she (like all kids) have missed enough school this year so returning to some kind of normal routine will be better.

I’ll update again after the surgery and will continue with regular updates including the x-rays so you can see the progress.

Nicole x