The Story So Far Part 12 (Botox and Tenotomy)

Despite Charlie’s routine therapy his growth has meant his leg muscles are not quite keeping up and his dynamic spasticity and tone have been steadily increasing. Mr Davies, Charlie’s fantastic Orthopaedic Surgeon, felt that his discomfort and ‘plateauing’ progress meant he was a again a suitable candidate for Botox.

The Botox was scheduled for just his hamstrings and adductors- more in his calves would potentially lengthen the tendon, shortening the muscle which might lead to problems in the future.


Mr Davies also discussed another procedure, a tenotomy – or cutting of a tendon. He felt if he ‘feathered’ the tendon slightly it would allow its relative length to increase and allow more movement. The muscle tendon targeted for this is called the gracilis; its function helps pull the knee inwards and flex the knee. Both actions which cause Charlie issue with his gait (walking technique)- particularly his right knee which turns in as he walks meaning he almost has to swing his leg forward from the hip.



I was initially a little concerned with the invasive nature of the procedure but I was quickly reassured- the incision is less than 1cm and the ‘feathering’ of small cuts reduces the amount of scarring. Mr Davies also assured us by telling us that this tendon is actually often removed to create an anterior cruciate knee ligament in knee reconstruction.

File 20-04-2016, 20 21 07So, the day arrived. Charlie was excited- his parents not so much. Although he was more excited about the Lego Batman that we had bought a few days before that I’d promised we could make at Sheffield Hospital. He had told everybody and anybody he was off the hospital for an operation and he couldn’t wait!

We arrived at 12 to Theatre Admissions and waited in a large playroom where the ancillary staff perform pre-op measures before the anaesthetist and Surgeons prep their charges. Charlie was 2nd on the list so he had plenty of time to play Batman and cause havoc with the other kids waiting. Charlie managed nil-by-mouth a treat- we did it too and felt like our throats had been cut!  He was extremely well behaved.

At 3pm Charlie and me went down to Theatres.  The Anaesthetists chatted with him whilst discreetly cannulising him and administering him- he was so nonplussed and quickly and easily fell off to sleep.

We were given a ‘buzzer’ to let us know when Charlie was in Recovery so we raced off to Starbucks to fill our bellies and drink coffee! Before we knew it it was 4 pm and the buzzer went off. We were allowed though into Recovery where Charlie had just come round and was curled up in a ball feeling sorry for himself. Poor lad was in obvious pain and was a little disorientated.

File 20-04-2016, 20 21 29We went back up to the discharge lounge where he recovered enough to devour a packet(!) of Jaffa Cakes and a packet of Pom Bears. He was given a morphine derivative and settled nicely into watching a film. He was more bothered about the ‘blue screw’ in his hand. The blue screw was the cannula and he was not impressed- ‘they can’t be very good Doctors and Nurses’, he said, ‘they’ve left this blue screw in and it hurts!’. Fortunately the kindly nurse came and removed it and Charlie went back to his Jaffa Cakes…

File 20-04-2016, 20 21 47By 5.30pm they were happy Charlie was ok and let us take him home. We had lots of phonecalls to reply to but Charlie was not happy with Mummy telling people he was fine- ‘I’m not fine mummy, my legs hurt’ he said on every call.


It was a late night, he didn’t go to bed until 10pm as he was a bit uncomfortable but he slept and only briefly complained of discomfort the next morning.

We are watching to see how he gets on…

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