I saw Mr Casey today. Once again UCLH had an admin cock-up. We got there at about 11:30 for my 12:15 appointment, checked in and asked the receptionist if the clinic was running to time. We then sat and waited. It was around 1pm when the nurse came out to check who we were waiting to see, because she believed all patients had been seen. Evidently we hadn’t actually been recorded as arriving, so were presumed to be a no-show.
Anyway, after a further delay, we went to see Mr Casey. He asked about my symptoms and how they are deteriorating, and then showed me the MRI. He said my cord is tethered at the front and back, and there is clearly an area of oedema between. He reiterated that surgery was the only option for trying to deal with it, and said he was happy to go ahead, but there are things to consider. He had already mentioned that he didn’t necessarily think I would see an improvement, but would hopefully not get further deterioration. He then went on to say that we need to consider the impact of potentially being paralysed from the waist down!
I’d known from the first op that paralysis was a risk, but to have it spelled out quite so clearly was a real shock. In the two weeks since I’d briefly seen him before, I had gotten my head around the fact that I would have to accept further surgery, and over recent months I’d even come to accept (if that’s the right term) that I might end up in a wheelchair eventually. However, this makes the decision so much harder. It also made me realise that, whilst I had perhaps come to terms with ending up in a wheelchair, and how I might cope with work etc, I hadn’t considered how it affects Cat and her needing to look after me.
He explained that, had my previous surgery been done elsewhere or by a different surgeon, he might take a view that he knew he could do a better job, but he knows Southampton, and he particularly knows the quality of Mr Sepahi’s skills (Mr Sepahi was Mr Casey’s registrar), and so he can’t say he is significantly better, having only had a small number more cases.
We had a bit more of a chat about how he would operate if he did. He said he would try to free the cord from the dura, but if that wasn’t possible, he would cut the piece of the dura away that the cord is attached to, and let it “float” with the cord. He would then patch the hole in the dura.
His recommendation is that we try altering the drugs for a while to see if that helps with the nerves and pain. He said the three most useful are amitriptyline, gabapentin and pregabalin. I explained I had already tried amitriptyline for about 5 years before being changed to gabapentin. He therefore suggests I speak to the GP about increasing the dose in steps and see if I get any improvement. If no improvement after about 3 weeks, move on to the next option.
He dictated the letter to my GP and me whilst we were there, which was useful in giving us another chance to hear the points discussed again. Clearly with things as they were I wasn’t going to jump into requesting surgery there and then, so he will arrange another MRI and see me in 4-6 months. He has suggested I keep a diary of my top 10 most annoying symptoms, giving them a daily score out of 10 to see how much and how quickly they are deteriorating. When we meet again that will then help in deciding if the risks associated with surgery outweigh the do-nothing option.
As nice as Mr Casey was, I’ve come away feeling like I’d taken a kicking. Lots to think about.