I couldn’t believe what the consultant was telling me. He couldn’t see anything on the MRI scan that could be accounting for my pain, but as it was December he wanted to help me through Christmas and proposed a manipulation under epidural. This was the first of many smaller procedures which all failed to eliminate the searing back and sciatic pain that had taken over my life. For me this minor procedure resulted in a cerebral spinal fluid (CSF) leak, which I later found is a complication more common in those of us with EDS. Within 6 months I’d lost my career as I was declared medically unfit – a horrible process which is very similar to a disciplinary procedure, yet shouldn’t be as the employee has done nothing wrong. Thank goodness for my nursing colleagues and great friends, Lilian and Angela, who stood by me and attended meetings with me.
Throughout the next couple of years I lost count of the number of times I was asked what was causing the problem and nearly always feeling that I was making excuses for the fact that nothing concrete had been found. I remember a meeting before I had left work, when even my boss, a nurse, said ” but surely they must be able to find something, Claire” and unwittingly sowed the seeds of doubt in my mind. This is one of the worst feelings and the inevitable issues that accompany this self doubt are those little voices whispering “am I imagining this? Is it all in my head?” When test after test and operation after operation not only fail to bring relief, but also to pinpoint a specific cause, the sense of despair can be overwhelming. Meanwhile the pain is increasing in severity and duration; the longer chronic pain is present, the harder it becomes to treat. The other thing is that you can’t see pain –
Once my contract was terminated, so my private health insurance ended- a perk for hospice staff from the neighbouring private hospital. By this time I had been transferred from the care of an orthopaedic surgeon to a neurological surgeon. He sent me for an upright MRI scan and I needed to head for a clinic in W1, London as there were so few available. This was my old stomping ground, Goodge Street and Mortimer Street, the site of my training hospital. But it also was a major point in my illness both physically and psychologically. As I walked along Goodge Street, the spot where The Middlesex hospital should have been standing was now an empty space, marked out by workmans’ hoardings. Somehow that image was what psychologically marked the end of my nursing career, and I found the demolition of my teaching hospital soul destroying.
I went on to have my first spinal fusion at a London teaching hospital performed by the neurosurgeon – this was a very poor experience. He really wanted to help me, but it felt like even he wasn’t sure what the best course of action was. When this procedure failed to alleviate the pain, I was discharged early and back in the care of my GP. She then referred me to the Surrey Back Care Clinic, where ironically I would have been sent in the first place, had I not had that perk of health insurance! I understood that the clinic would assess the patient and marry them up with the best suited health care professional, and I became convinced that I would see the psychologist for therapy. I was wrong! I saw yet another neurosurgeon, Mr B – a great man whom I immediately felt comfortable with and had faith in. Strange that my nursing friend Katie, who years earlier had been on the same induction day as me at the hospice, was also referred to the same surgeon.
I was told that the original fusion had been poorly performed, the bone graft had failed and more worryingly was at the wrong level. After my dreadful experience before, I had vowed that I would have no more surgery – my EDS symptoms had also started to rapidly worsen following this with a deterioration in mobility and worsening dysautonomic symptoms and soft tissue/joint pain. My consultant was not going to force me and at this point spoke with me about neuromodulation, a procedure that he had performed in Liverpool. But he still felt that a revision of the spinal fusion and extension of the screws & rods was worth a shot prior to referral to the pain unit at St Thomas’ hospital, London. It felt like a means to an end, and so it was with reluctance that I went back into hospital in October 2013. My youngest had just started secondary school, whilst my eldest was entering his final year and in the process of applying to university. One final stipulation before I went on that operating table was that his bl…y UCAS form and personal statement had to be finished and in his tutor’s inbox!
I should probably add here that between the two fusion surgeries, I was seen in the Hypermobility clinic under Professor Grahame at University College Hospital, London. Here I was told that someone with EDS should not be given a spinal fusion without very careful thought as additional stress will be placed upon the joint above/below the fused joint/s – this will cause already hypermobile joints to overextend even further! This has happened and my lower back is a mess of painful fusion and painful bendy lumbar/thoracic
After nearly 7 hours on the operating table, I was sent back to the ward with numb, motionless legs, and a plastic specimen bag containing, what is best described as, the fixings for kitchen units from a certain infamous Scandinavian store! I kid you not, the screws removed from my back were several inches in length and Mr B thought I would like to keep them. He had kindly replaced them and also added more, along with a new artificial bone cement for good measure. You know the outcome.
Whilst the surgery itself was successful, it failed to ease my pain and initially left me unable to move my foot. At my next consultation Mr B was a lot less upbeat, and told Duncan & I that he knew almost as soon as he opened me up that this would not help me. The difference this time being that he could see the nerve root damage and it was exactly where I had always maintained it was – the site of my original surgery from all those years ago, L5 – S1. The next