I went to Queen Square yesterday to find the outcome of the latest MRI and subsequent MDT meeting. The clinic was overrunning by 1.5 hours by the time I was seen. I saw one of the registrars who explained that the imaging report confirmed spinal cord adhesions between T1 and T2 vertebrae. The conclusion of the MDT was that surgery was the way forward. The registrar seemed quite surprised when I queried the sense of having further surgery without any assurance that it would have a longer-lasting effect. Ok, so I suppose I knew there’d be no such thing as an assurance, but I wanted to feel going through major surgery again was going to be worth it, particularly after she’d explained there were increased risks opening the same site a third time, – and let’s face it, the risks weren’t exactly trivial the first time round.
Another thing that concerned me a little was that, when I’d re-read the letter from my first OP appointment there, and when she went over my history, there was no mention of my second operation, and I had to fill in the gaps before she explained the plan. When I raised my doubts about surgery she said she would get the consultant. Unfortunately, due to the clinics overrunning I had to wait again to catch him between appointments. Consequently it was a very brief discussion in which he quite politely but succinctly explained that, because of the rareness of my condition, the options are to leave it and my symptoms will continue to worsen, or operate to relieve the adhesions, and they might be able to at least stop me deteriorating. I already knew he is basically top of the tree when it comes to this sort of thing, and he explained that he has been a consultant neurosurgeon for 20 years and works across two specialist centres, and yet has still only come across 8 instances of my type of case. Of those, he has only had two where there has been a reoccurrence, and both of those were where the original cause was tumours, so I am the very first of my particular kind. As such, the options really are limited to do nothing, or try surgery. He referred to me as a very special and important patient! The cynic in me makes me wonder if that means I’m a chance to prove his prowess, but I’m sure I’ve just watched too much of Professor Gaskill’s trials in Holby City (yes I know it’s fictional!!).
Anyway, he said that the choice was obviously mine, but that he suggested I see him face to face in clinic to discuss it further, but if I do decide to go ahead with surgery he wants to do it fairly urgently, so would like to see me next week if possible. Due to lack of availability next Friday, I am being booked in to his clinic on Friday 28th.
It’s fair to say my mind was in overdrive as Cat and I left. On reflection I’d set myself up with the view that I wasn’t going to have surgery unless they could convince me I’d improve as a result of it. To be told it was the only option to even keep me as I am therefore threw me, and for most of the afternoon I didn’t know what I’d do. On reflection though, I think much of my torment was that I knew what my decision would be, I just wanted the option that wasn’t on the table – surgery to fix me, or at least improve me. The other thing is that I don’t relish the idea of having the op in London, away from everyone, but there’s always Skype/FaceTime instead of physical visits each day.