A year later

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.

>The Man With The Needles

>I’m going to see my neurologist tomorrow in spasticity clinic. Hopefully this will be a joint appt with my physio (it’s meant to be but the track record on that isn’t good) to discuss whether I need more Botox. And for me to have the jabs if so. I suspect that will be the case. I also wonder if my baclofen will be upped.

I described that to a friend as “going to see the man with the needles” last week and thought that was an intriguing idea for writing.

Today is day 35 of 100 which feels like a huge number of days achieved. Especially as I almost forgot to write at all.

The Man With The Needles

“I’ve got to go and see the man with the needles tomorrow”

“you’ve got to go and see who?”

“the man with the needles.”

“oh… Ok and who is he when he’s at home?”

“I told you. He’s a man. With needles.”

“Right. That’s cleared things up.”

“I think he specialises in needles you see.”

“Does he not have a name?”

“He does”

“Which is?” You might be out there but I doubt even you call him The Man With The Needles to his face.”

“It’s… It’s… Oh god what is it?! I know this, I know I do.”

“You’ve forgotten, haven’t you?”

“No… Give me a minute, it’ll come.”

“Told you your nickname habit would get you in trouble someday.”

“Oh Jesus this is pathetic, even for me.”

“Whatcha gonna do? Walk in there and ask for The Man With The Needles, hope they know who you mean?”

“I might have to. Oh god this is going to be embarrassing.”

“it is. Bet they laugh. I would.”

“yeah, thanks for that.”

“So anyway, what does he do with these needles this specialist guy? Its gotta be something skilled to hear you talk so what is it? Tattoos, piercing, fillers, Botox?”

“He sells them”

“He sells them?”

“Yup he sells sewing needles.”

♥ Emma