I didn’t realise I was so nervous until I looked at my worried thumb nail. Emily and I drove silently to Lidcombe, this morning, to attend her physiotherapy session. Both of us wrapped up in quiet contemplation. Nothing needed to be said, it’s perfectly obvious that we’re both in an emotional holding pattern, circling thoughts, held in a queue, waiting for her time slot to be confirmed for surgery tomorrow.
This process started early last year in Royal Ryde Rehabilitation as Emily was referred to the tetriplegic hand clinic at Royal North Shore Hospital for assessment and monitoring. Walking into clinic 5, waiting to be seen by the specialist is daunting and exciting all mashed into a butterfly stomach. The surgeon didn’t look up as we entered the consulting room; the walls were lined with therapists, students and trainees. I settled into the chair I was offered, Emily had her own chair. Our saucer eyes scanned the room for any familiar faces. The surgeon asked questions and came to sit on the front corner of her desk. Any questions we uttered seemed naive so we listen.
“This is not like shopping; you cannot have what you want. You can only have what I can give you”
Nearly a year of tests and consultations have led up to tomorrow’s planned surgical intervention. Emily will be nil by mouth from midnight, prepped and dressed in a hospital gown because we have placed our faith in this serious, medically competent and precise surgeon. Only when Emily is under a general anesthetic, only when Emily’s nerve is dissected and exposed to reveal its viability, only when her tricep is proven to be stimulative will the operating team led by Emily’s surgeon decide to transfer a nerve and attach it to the tricep muscle. If the nerve is not viable, if the muscle stimulation is “piddly” then the surgical team will alter their course of action and transfer a tendon to the tricep. We will pace the corridors of RNSH waiting for the watershed news, which decision will be made while our daughter sleeps.
The recovery time is impacted by whether the nerve or the tendon is transferred. Nerve transfer requires three weeks in a sling, while the nerve slowly regenerates into its new position, so the success of the transfer is not known for some 3 months. The nerve transfer has a reduced post operative immobilization phase but there’s a delay in the revelation of success. The tendon transfer requires a plaster caste for 4 or 5 weeks, then a splint allowing gradual flexion at the elbow. The tendon transfer means Emily will be immobilized for far longer although as the surgeon says “ The advantage of a tendon transfer is that it works anytime, anyplace, basically in the middle of a desert.” The tendon transfers can be reversed if in 10 years science moves on to offer other mobility options, the nerve transfer is permanent whether it regenerates or not, the nerve tract is altered and could in theory impact on future options due to revised message pathways. The big question is – does Emily wait for 5 to 10 years for bionic options, wait for current research to be completed, tested or does she get on with life now. Improve her function now.
There are so many variables with disability, spinal cord injury comes in many classifications, complete and incomplete, Asia scale A – E, Cervical (neck) to lumber (pelvis) and everyone’s injury is individual. I read avidly and post relevant news and links but these new medical concepts and ideas; will they be developed to be of any practical use to Emily, in a useful time frame for her? See the latest – Melbourne research team’s ambitious plan to develop a bionic spinal cord Will any of these fantastic, ambitious plans be affordable or available to her? I am optimistic and I hope and pray that Emily will be one of the first generation of quadriplegics to experience robotic movement and nerve recovery but until these are commercially available we can only place our child in the care of experts, specialists and into the experienced hands of a practicing surgeon.