First time poster. I was diagnosed with myeloma at the end of March and a month later discovered via a full body MRI scan that 2 of my vertebrae have almost totally collapsed endangering my spinal cord.
Since then I have been told I need a custom back brace but nobody seems able or willing to arrange one. After ten days compulsory bed rest in hospitals whilst they examined risks, I have been given an adjustable off-the-shelf brace that is really painful and does not reach high enough to cover my damaged vertebrae (T4 & T5).
After a fortnight of chasing, Stanmore Orthopaedic hospital said they were not taking any referrals. I was sent to the National Hospital for Neurology and Neurosurgery in London 3 weeks ago expecting them to arrange it. They said my local hospital needed to place the order but they would get it sorted. Nothing.
Yesterday my haematologist seemed unable to help (it’s not her area of expertise) and she has just referred me to the spinal unit in the local hospital. She also thinks that it’s probably too late to now bother with a custom back brace as I’m 6 weeks into chemo.
Initially I had no back pain at all, but in the last fortnight I can now feel pain in the damaged vertebrae and am getting very frustrated with the farcical situation. Has anyone else encountered issues like this, am I wrong to be frustrated and concerned (the rest of my treatment and chemo is exemplary) and how do I remove this roadblock?
