Beginning Treatment

On Thursday I had my first ever injections of botox.  I received six injections of a very small dose of botox into my calves.  The hope is this will improve the position of my feet and thus my standing and transfers.  I was incredibly nervous about it (and still am) as for a lot of reasons I've always said I'd never have botox.  Saying yes was very scary! As a child I had a similar treatment (alcohol blocks) which left me weak and I lost function and needed calipers.

Unfortunately both the consultant and my physio feel that whilst I would benefit from botox in my quads I shouldn't be given it as it was very likely I'd be more comfortable in my chair but also lose my ability to stand, without which I'll be totally screwed.

My legs bled a bit after the jabs and needed plasters on for a few hours.  It stung when it went in, more on my left leg than my right but that may well be because the left leg was done second.  The rest of the day they were pretty sore but that disappeared with a dose of codeine (2x 15mg) and two paracetamol.  My legs did have a weird warm feeling for the rest of the day.  Sort of like when it's winter and you've been out in the cold then come home and wrap up in big socks and under a blanket and are all toasty. However my legs weren't warm to the touch.  Friday they were achy but the "warmth" had gone. Saturday and today they've been fine.

I spoke with the physio Friday morning.  The next step is that I will return to the hospital twice next week.  On the first visit I will have both feet put in non-removeable plaster casts.  As the botox takes 7 - 10 days to kick in it should be working by then and allow my feet to be manipulated into a slightly better position which is a gentle stretch.  They will be casted in that position and the cast will remain on until I return later in the week.  When I go back they'll take the cast off when they hope my leg will stay in the improved position and that they can manipulate my foot into an even better position and then put new casts on.  The plan is to keep doing this until my feet/ankles are in a normal position - 90 degrees.  I've been told this shouldn't take longer than a month but could take less.  From memory I think when I saw the physio at the beginning of the month she said my right ankle is 20 degrees out and my left, 30.  I know when I'm standing this improves and they are both 10 degrees out.

This process is known as serial casting

Once the casts come off I will get some form of splints to wear - specifically I will have AFOs (ankle-foot orthotics) but on the phone I forgot to ask if they will be night or day ones. I'm not sure what my preference is.  Getting splints will mean that I almost definitely have to have care input to get them on and off.

Oh and the other thing that was agreed was if I have no response to the botox in 2 weeks I'm to increase my baclofen slowly to 60mg (currently taking 40)

It's going to be a long road, I just hope it's worth it.