I had my assessment session with neuro rehab physio therapy on Tuesday and it was excellent. The physio went back over my history and how I’d got to the position I’m at now. She asked what it was I wanted to focus on mostly – the pain or the balance. Given that I’m hoping the pain team will do something about the pain, I said I thought it best to focus on the balance. She then started going through some physical assessments to see what I could and couldn’t do. What she found was that, whilst I have all the sensory problems in my right leg, it seems to weaknesses in my left leg that are causing my balance and walking problems. In particular I have some quite severe restriction in the bending of my ankle, and weakness in my left hip and knee. As such, she has given me a range of exercises to try to release the tension in my ankle, and to start building up the strength in my upper leg joints. She has also given me some more balance related exercises to do, to try to retrain the signals down my spinal cord.
She thinks it might be possible to retrain the signals regarding the sensory problems as well. I need to do things like rub my right leg with different textures and put things with different temperatures on my leg. I then need to get Cat to test me by using those textures and temperatures on my leg whilst I have my eyes closed, to see if I can tell what she’s using.
The low point of my care this week was trying to get an update on the pain team. I have a follow-up appointment at Queen Square on 4th October, but given they are most likely to know if the pain team have been able to help, or do I want to consider surgery again, I wanted to ensure I will have actually been seen by the pain team or would it be a wasted visit. I rang the pain team yesterday, to be told they were waiting for info from the neuro team. I asked if that was the Southampton or London neuro team, and was told it was the London team. I therefore rang Mr Casey’s secretary, but she said she hadn’t received a request for any info. She has rescheduled my appointment anyway to December to give time to get sorted with the pain team, I rang the pain team back and spoke to the same person. I explained that London hadn’t received a request, but that I had Mr Casey’s secretary’s email address for them to send it through directly. She rather sharply told me they weren’t dealing with London at all and it was the Southampton team they are waiting on. Apart from the obvious “but you specifically told me London” (don’t ever ask her for directions!), I asked to clarify that she was talking about the Southampton neurosurgery team, she confirmed that, yes, they are waiting for info from the Southampton neuro rehab team!😱😡 I explained that I only had my assessment with them the day before, and she merely replied that it would probably be a while until I get seen then. Not helpful at all! Now this is the first I’ve heard that treatment from the two services has any dependency on each other. In fact, when the GP referred me to neuro rehab, it seemed very much an afterthought to the pain team referral.
I have emailed the physio to explain that the pain team are waiting on info from her, so hopefully that can be progressed soon.