I was getting desperate when my daughter suggested we research the Internet medical sections. We soon found the condition – HFS! I printed the information and took it to a different doctor at my Health Centre. She immediately referred me to a Neurologist as I requested. I saw him privately in Cambridge. He said I seemed to have "classic" HFS, starting at age 54 and caused by thickening of an artery looping around the facial nerve. Nothing could be done apart from Botulinum injections to suppress the symptoms. He said surgery was dangerous and a last resort for very serious cases e.g. children; he had successfully operated on a 7 year old girl but would not consider it for someone such as myself, even privately, due to too many risks.
He said I had to have a MRI scan to check nothing sinister and if all as expected could only offer Botulinum treatment. As I was exhausted and depressed by then I agreed. The scan was fine – showed the offending artery – so treatment began. My first injections were in April 2005, two above the eyebrow and one just below the eye socket in the outside corner. I was told to report back after 2 weeks, so 2 weeks and £220 later I called to tell him nothing had happened. I was then offered the treatment on the National Health Service, so went to see him at Addenbrooke’s Hospital, Cambridge, 3 months later. The dosage was increased minutely – apparently it can only be done in minute increments in case of reactions – and after a couple of weeks the spasms were as frequent but less intense.
The next treatment again saw the dose increased minutely (don’t know what it is but shall ask at next treatment next week) and has carried on 3 months ever since. The current situation is that the spasms are not as frequent and are no longer painful or as noticeable to the observer. The fluttering noise has abated, but I still feel the "pulling" sensation and can see a slight twitch from the corner of my mouth upwards. They increase under stress etc. and lately I’ve found that when tired the right side of my top lip seems to become paralyzed, making my speech a bit odd. I shall have to ask the doctor about that.
Towards the end of the 3 months the spasms also become more pronounced as the Botox effect wears off.
How long do I keep on? The consultant says I can only have them for about 5 years and then I will develop immunity, so I shall have to have breaks from the treatment. I was very depressed by his pronouncement that HFS is for life, so I try not to think about that. I do sometimes though have bouts of thinking why me? I start getting angry, but then other folk have far worse things to cope with, so as my old Grandma always said, I must count my blessings! Also my 8 year old granddaughter made me laugh when she asked when I was going to see the "twitch doctor" again!
I have read others accounts of their Botox experiences and have come to the conclusion that these must depend on individual reactions to the drug and the expertise of the doctor, like many other medical treatments. As the neurologist has scared me off surgery I’ll continue with the injections for now until I get a better offer!
If anyone wants to share Botox or HFS experiences with me I’d be pleased to hear from you, especially anyone else having treatment in the UK.