I know what you are thinking-what is she doing writing about Botox-she looks 12, this is definitely not something she needs. Well that’s where you are wrong. This is all about Botox but maybe not in the same way as you had previously thought.. Botulinum Toxin is used as a treatment for cerebral palsy in the same way as it is used to treat your wrinkles. It works by helping the muscles affected by CP to relax. After Botox intensive physiotherapy is used to maximise the potential of the relaxed muscles.
My Botox treatment is definitely the worst part of my whole CP experience. This is because of how the process works. Botox is administered through injections directly into the muscles. It is most effective whilst the muscles are still growing, therefore it is something I had a lot of experience of growing up. I have had Botox every couple of years since I was about 5 until the age of 12. I hope that by sharing my experience of this process it helps others realise what people suffering with CP have to go through.
I would have regular check ups with my paediatric neurologist. I would dread these check ups due to the fear that the dreaded word Botox would be uttered. Every time it was brought up in these consultations, especially when I was younger, I would end up in tears petrified. I have vivid memories of always thinking my parents were gang in up on me as they always agreed with my consultant. I used to accuse them of putting me through pain. This was really traumatic for both me and my parents, I now realise that they only ever wanted what was best for me and would have swapped places with me in a heartbeat. The worst part of these consultations were that they would be months ahead of the actual injections. As a result I would be freaking out well ahead of the injection-not helpful when I had to seriously focus on the 12 times table in year 3..
On the day of the injections, I would have the full day off school(a positive of some sorts I guess) but I would have to travel to the dreaded Yellow Building of Doom and Despair.. Every time I go to that hospital to this day the memories come flooding back. Initially I would have my injections whilst I was awake. The only form of pain relief I got was magic cream. This is supposed to be a form of local anaesthetic which numbs the area. Trust me when I say it does not do enough when it is up against a needle going all the way into your muscles. I would be lucky enough to get 8 injections in each leg. Four in each of my hamstrings and 4 in each of my calf muscles. This is because these are the muscles most affected by my CP. As a result of my CP the muscles are continually contracting even when they are not being used. Therefore these muscles are very tight. This is why the Botox is so effective. So anyway back to the big day, after the magic cream had time to kick in (or not) it would be time to shine. I have vivid memories of having the injections in a separate (non soundproofed) room off the ward. The nurses would hold me down, one of them on each side. I have decided to call them the Wicked Women of the Ward (WWW for short). For some bizarre reason, I was desperately keen to see what was happening to my legs. I would be twisting and turning to try and get around and see what the Dastardly Doctor of Despair was up to. These injections need to be put in exactly the right part of my leg muscles.. To try to keep me distracted from the pain and keep me still, the WWW would try to entertain me with a Where’s Wally book. I know they were trying their hardest but I can tell you now, it was pointless. The pain was incredible as the needles had to go deep into my muscles-just as visual aid we are talking mega needles 3 times you average injection-think measles on steroids. The worst part was also that as soon as the first one was done, I knew how much pain was coming my way but stuck had another 7 injections to face(thank you DDD) It like the seven stairways to hell. From my parents account of the drama is certainly sounds hellish with all my screaming ( after I had it the first time, Mum didn’t want to go in with me as it was too hard to watch-witnesses say my screams could be heard by the doddery, deaf geriatrics on the 7th floor. I hope you now have a vivid image of a classic torture chamber, that would seem about right to me. Don’t panic though in this situation I was allowed to survive but these memories have stuck with me vividly for the past 20 years
As I got older, this experience did improve as I could then have the injections under general anaesthetic. However, this brought about issues of its own. Firstly, the anaesthetic would terrify me as I was only put under for half an hour but I would convince myself that I would not wake up. Trust me, that’s never a good feeling. I know that the doctors know completely what they are doing but it didn’t shake me nerves. However on the plus side, I didn’t rememberer any of the drama, a completely different ball game to my previous experiences. On the downside to allow me to have the anaesthetic, I was not allowed to eat anything beforehand. Also the process of having anaesthetic was just ridiculously long and drawn out. This is because the anaesthetist was in high demand so I spent a lot of time waiting around. Also, after the whole thing was done, I finally was allowed something to eat. However, the anaesthetic is inserted through a butterfly and I just remember it being a nightmare to eat afterwards whilst this was still in. In later years I think this was removed after everything was finished and I was still under. That way as soon as I woke up I could just devour copious amounts of marmite toast-trust me it is a culinary delight. Another memory that has stuck with me from this phase of Botox was a particular anaesthetist known as the Delightful Doctor of Dreamland (just to keep you on your toes he is not to be confused with the the previous DDD). He came around for the pre procedure chat and told me that if I could count to 10 seconds after the anaesthetic was inserted before falling asleep, he would get me a present. Needless to say, I made it to a strong 6 when the time came. When I came round and was back on the ward, the anaesthetist came to see me bearing a Terry’s Chocolate Orange. He was kind enough to bring me a present despite the fact I failed miserably at his challenge. So there you go, there are some benefits of such a traumatic process.
The last phase of my Botox journey was by far the best. Laughing Gas. This was a gamechanger for my experience of Botox but just to clarify it unfortunately didn’t result in me getting the giggles. The laughing gas worked by making me feel very lightheaded and dizzy so I was not fully aware of what was going on (it basically makes you feel high on life). This means that those mega needles just feel like a pinprick so the pain is much more manageable. It also is much faster than general anaesthetic as it cuts out all the time spent waiting around for the anaesthetist and waiting to come round afterwards. I remember one occasion when I was given free rein over how much laughing gas I could use. I was happily puffing away as they kicked off and by the end the WWW were very impressed as I had manged to polish off half a canister of gas singlehandedly. If this is an option available to you when having Botox, I would definitely take up DDD on the offer as it just makes the whole process faster and more bearable.
So all in all, I know that this has been a horrible experience to go through but I know it would not have been recommended for me unless there was a genuine benefit. As much as I hate to admit it, I know these injections have benefitted me by allowing me to maintain my active lifestyle and keep getting stuck into everything that I do on a daily basis.