OK so it’s not quite a year later but it’s as close to a year later as I’ll get.
Last July I had my first lot of botox and that was then followed up with serial casting in August. The TL;DR version for anyone who doesn’t want to follow that link to all my entries on it is as follows. Serial casting was not a particularly fun experience but I saw a lot of improvement. Unfortunately not as much improvement as to get my feet into a “normal” position but the amount (approx 20 degrees improvement in range and position improvement) is agreed by everyone to be huge.
Yesterday I had my four monthly appt in spasticity clinic. It was a good appointment but has had me, my sister, both of my parents and one of my besties going “oh, I didn’t expect that”
It was the quickest I’ve ever been in and out of that hospital. Of course a big part of that is the fact I didn’t go on hospital transport but my dad took me. Spasiticity clinic is a physio, a nurse and a neurologist. And my neurologist always runs really late. It doesn’t both me because although I know people who can’t stand the guy I’ve always felt like I get all the time I need, I’m not rushed and I can’t ask a stupid question. Plus he’s very open to hearing how it is for me. Anyway I had I think the second or third appt of the clinic but I was the first patient to turn up (I was ten mins early). I wheeled in and she said she’d call the drs down. I ended up going in a few minutes early and we were at the car at 10.05 having made a loo stop on the way out (my appt was 9.40)
My physio from last year is on maternity leave I think and I don’t think I’d met the one that was there before. She had a good look at my legs/feet in my chair and then the Prof came in and asked if they could examine me on the bed. He had I think two observers with him, not sure who they were.
The really good news is that I have maintained all of the improvements I got from the casting. That’s huge. Really huge. I think it’s unexpected too, usually a there would be some deteriorate if not complete deterioration expected (I think). Keep up with the standing frame and increase the time if possible. Work on a goal of an hour. My feet haven’t started turning in again like I thought they might have so no new contracture.
But it is now official that I have both spasticity and contractures. That’s just basically confirmation of something we’ve all suspected for a long time. I am being referred for surgical assessment to see if it’s time for a tendon release proceedure on each of my ankles.
Growing up I didn’t see a neurologist, I was assessed once or twice a year by an orthopaedic surgeon. I saw a really lovely man who always greeted me with “hello sunshine” and made me feel special. Most of my friends with CP saw a different consultant but I was born with a hip problem (dislocation) and was seeing my consultant about that before my CP diagnosis so I stuck with him.
The surgeon I’m being referred to? Is the one that my friends always went to. I’ve heard very good things about him. So that’s good. But I am a little sad that my guy has retired and I can’t go see him
The aim of a release would be to help maintain my independence and improve my standing. The issue is that I’ve had it done twice as a child (that was amusing, I left my dad in the waiting room but when the prof started asking about previous surgeries I suggested getting him in as he’d know better then me. So he did but then basically didn’t ask Dad any questions) and no one there seemed sure if a third go is possible. I need a definite answer abou that before any decision because with CP contractures will always develop. And I’m not sure I want to use my last shot at release surgery a 30 when I’m managing well and at 35 or 40 or later I might need it more. But then if I do decline to have it now am I running the risk that at 40 I need it but things have deteriorated to such a point it can’t be done?
Lots to think about. And a few month wait to clinic I think.
In the meantime I had six more lovely botox injections and I’ll wait to see what the surgeon says. That will be a joint clinic with my neuro. Depending on when it comes through I may skip my next spasticity clinic appt. Basically if it’s in a couple of months or say six months then I’ll go back in four months as planned for more jabs. But if I see the surgeon around the time I’d be due jabs they’ll combine giving me them with it even if it’s not in spasticity clinic.