In the last couple of months I have been diagnosed with a condition called Hemifacial Spasms (HFS). My neurologist, before he saw the spasms first hand, thought they might be a form of epilepsy, but I actually had them while I was in an appointment with him and he immediately recognised them as HFS.
So, what is it? It is a rare condition where an artery in the base of my brain is pressing on nerve/s that control facial movements on the left side of my face. The pressure is making the nerves misfire and I am having spasms on one side of my face. At first they were only every few weeks and were minor (i.e. a small twitch near my mouth, kind of like an Elvis impersonation, for a few minutes at a time), but they have steadily gotten worse in the past couple of months and now I am having them most days, they are contracting the entire left side of my face (and sometimes go over to the right side a bit too), and they can last up to a couple of hours.
Initially I had Botox (yes – I was a celebrity for a while!) to try and stop the spasms, but that hasn’t worked and it left me with the side effects of not being able to open my left eye completely and of having facial droop.
The next option, one that is scary and has risks, is to have surgery. I won’t go into that right now as I have to talk to a neurosurgeon to find out more. I do know the recovery time is lengthy and can be very difficult. Activities after the surgery can be quite limited and are gradually reintroduced over a period of four to six weeks.
Anyway, the spasms make me very tired and I am having trouble getting a lot of things done at the moment. But, I promise I will do blog entries whenever I am able to.
I have been thinking lately that looking after children would be very difficult after the surgery. In some ways it is better that I don’t have children if I have the surgery, but that makes me sad. I am sad to think that not having children could be a benefit in this circumstance.
I also feel angry sometimes. I could have much worse health conditions to be sure, but I sometimes wonder why I have HFS, as well as major depression, as well as a rare skin condition, as well as epilepsy, as well as unexplained hot feet at night that stop me from sleeping, as well as infertility. It just doesn’t seem fair – but then who said life was fair…
Well – that’s enough of me sharing my despondency.
I will finish on a lovely note. I was outside by my fish pond having a cry the other day and my dog, Ari, came to comfort me. Sometimes pets make the best therapists.
|One of my three boys...Ari...|