I'm due to go in hospital on 14th May to hopefully have MVD to sort out my HFS.I'm 42 and have had HFS since 2004.It started with the tic in the left eye.After seeing an optician a couple of times he said it was likely to be something neurological and told me to see my GP.
Before I did this I did some checking on the web and HFS fitted all the symptons.I was referred to a neurologist and he sent me for MRI scan,which came back clear. I was then put on anti convulsant drugs which made me nauseous.Had EEG and then eventually was put on botox injections.
In the meantime the condition had deteriorated to include the whole of the left side of the face and the left eye was constantly trying to close.
Have been having 5 injections every 3 months.The effect has been hit and miss. It stops the eye closing but you can still feel the sensations.Also instead of the muscles of the left side of the mouth being pulled up by the spasms,they just don't work at all so the effect is the same.
You feel like two different people,when the spasms hit you withdraw,try to avoid conversation as you battle to control the spasms.The relief for the brief time the spasms abate is bliss in comparison and you return to being a 'normal' person.Spasms are brought on by concentration whether it is reading a book,loooking at computer screen,driving,watching TV.Any kind of stress is also a trigger.
In the middle of last year I asked my specialist if I could have another MRI as the original one had been done at the onset of the condition which had now deteriorated and I also thought that this hospital may have better scanners.He agreed to this and I had the scan. And they found where the problem was.
The surgeon has said that the lay out of the blood vessel and the nerve in my case is unique so they may go inside and find they cannot do anything.However,I'm prepared to take the risk in the hope that if they can they I might be rid of this.If it doesn't work then it's back to the injections.
I'm lucky at work as my boss has had hfs and has had mvd which worked so he is very sympathetic.Everybody at work knows what I've got now and they've been brilliant.
So roll on 14th May(if its not delayed again!).To anybody who reads this message who's got this I know and understand what you're going through.And to those who've already posted thanks for sharing your problem, it's very difficult to understand how bad it can be unless you've got it. 0
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