Hemifacial Spasm..There are others!!!
Posted , 13 users are following.
Hi,
Firstly, can I say how chuffed I am to find that there are many other people suffering from HFS, for a longtime I have felt alone, but also sorry that you're going through this aswell.
I am a 35 year old living in the UK and this is all started, it started with a slight twitch in my lower right eye, then over time it became very annoying. I consulted my GP who told me it was "tiredness and stress, and would solve itself" I have now had this problem for three years and during this time the spasms became worse, no longer just in my eye, my whole face would spasm, my nose, cheeks and mouth, quite serverely. After changing GP's i finally was referred to a neurologist and the appointment took about 3 months to come through. As i sat in the waiting room, the spasms were doing the norm and then typically when in with the consulant nothing, he referred me for an MRI.
The MRI results were clear, leaving me with the explanation that I have a "Primary, right hemifacial spasm".
We spoke about the treatments on offer, however the consultant said that he didn't think that the symptoms were severe enough to undergo surgery.
A few months later it just felt that the spasms were getting worse, i didnt like going out meeting new people or putting myself in any situation that would cause me to feel nervous as this all contributed to the symptoms.
I went back to my GP, who referred me once again to see the neurologist. Once again we spoke about the treatments available and decided to give botox injections ago, again another referral as my local hospital could not offer this treatment.
I had my first lot of injections nearly three weeks ago, they put one in each corner of my top and bottom right eye lids and two injections to the side of my nose between my cheek. Everything happened that the doctor said would happen regarding the side effects, it started with dry eye that felt irritated (a little like conjunctivitus) drops helped with this. My eldest daughter then noticed that my right eye was not closing when i blinked just staying wide open (great another thing to feel concious of) about a week ago, i went to put some make up and when doing my mascara i noticed for the first time that my eye did not close up, i thought great its worked, i then tried to put lipstick on, to find that i could not "pout" my right side of my top lip is drooping. My speech has become slurred this past few days and the side of my nose feels really tight and tender to touch.
So sorry for the "essay" but its nice to be able to tell someone/people that understand exactly what i am going through.
I am now concerned as to whether to continue with the botox, i know its still early days, but i am due to go back in about 8/10 weeks, for another session. I know its still trial and error as to how much to inject and how often and i am keeping a diary to discuss with my consulant when i next see her. For now i dont know whats worse, the eye/face spasming with the eye totally closing happening almost every day for the duration of the day on and off, or my lip now having no muscle function!!
confused i am :-(
2 likes, 51 replies
Lynathome clare04574
Posted
iI am 78 years old and came to this site as Ii want to leave my brain for research I cant remember when my doctor described to me the condition , before there was a name and 17 years later in 2003 I was sent from Canada to Pittsburg and had the "new" surgery I went through four and a half years of botox first and I thought the condition was much improved, maybe under control for good but then I had to wait for 10 months for all the botox affect and hair due to be gone out of my system before the surgery I was shocked at the end of that time my mouth drooled and hung open my eye was closed and difficult to open yes the botox had been highly successful but it was a questionable success. Now as a senior citizen the effects of all that botix creep into my face that eyelid slightly droopy and lip so much thinner on that HFS side believe me, these really show up in photos but none of this matters we all age but that surgery allowed me to continue working until retirement and stopped me from biting my inner cheek and trying to hold my lip still the surgery saved the quality of my life everyone needs to do what is best for them I would like to know if and where there is research as my sister had MS and my daughter in her fourties' is experiencing a loss of brain cells I think my fraternal grandfather died from a brain tumour there is a much bigger picture here and if my experience helps anyone so be it I have been looking for research does anyone know where that is happening?