Personal HFS History - Ursula Kennedy

I would like to start by thanking every one of you who has contributed to this site. Your input has helped me to understand and make one of the most important decisions in my life.

Like a lot of you, my symptoms first started with a very slight occasional twitch in my left eye. It was 1990 and I was 35 – not much of a problem so I just ignored it thinking it would go away. Slowly over the course of the next few years the twitches got worse and I eventually consulted my Doctor who referred me to a Neurologist. After a CAT scan, an MRI scan, various blood tests and numerous visits to see the consultant, I was eventually told, 6 months later, that I had HFS (a mystery ailment that no one had ever heard of). I was then prescribed Carbamazapine and left with the impression that if I kept taking the tablets the twitches would miraculously go away. Mention had been made of some operation that existed (this was very dangerous and not really recommended) and injections of poison into your face which were new and not tried and tested. Off I marched with my packet of tablets thinking thank God it's all over.

How wrong can one be – the Carbamazapine did very little, if nothing at all, to help but I persevered over the course of the next 7-8 years. Every now and then I would mention it to my Doctor in case something new had come out but the answer was always the same – you are probably better off just living with it.

I stopped taking the Carbamazapine in 2003 (with no change). My twitches had developed to spasms, which were effecting the whole left side of my face and going down into my neck

It may sound dramatic, but over the years I learnt to suffer in silence. No one I have ever spoken to has ever heard of HFS. I just kept telling myself that there are people who are far worse off than I am.

Has it affected my life? YES. I didn’t realize it at the time but all my efforts were put into hiding the spasms. Hair over the face, sun glasses, looking away at that particular time, head down……. I could go on but I am sure you have all heard and felt it all before. Did I realize how greatly it was affecting my life? NO.

I have always been a busy person, busy at home and busy at work and my HFS was just something else I had to cope with in every day life and of course one day it would just go away – or so I thought until a few months ago.

I have recently been off with depression (I must add at this point that it is not due to HFS) and have had some time on my hands – time to look at life and rearrange some priorities. It has given me the time to realize that HFS is a major contributor to how I have changed from a confident, outgoing and lively person to someone who spends each day fighting a battle and trying to hide from the world (and probably myself). It has also given me the time to spend on investigating HFS further which brings me to this site.

After spending a considerable amount of time reading all your contributions to the site and making other inquires my mind was made up. I wanted to be referred to Prof. Coakham in Bristol on the basis that I would like to proceed with an MVD and that is exactly what I told my Doctor who, very kindly did just that.

I have just returned from my consultation with Prof. Coakham in Bristol (a 360 mile round trip) and am delighted to report that I am booked in for an MVD on Tuesday 28th September 2004 – just over two weeks away. As it is a little distance to drive, he has arranged for me to have my MRI scan on Monday 27th late afternoon and hopefully the operation will be on Tuesday morning at 8am. Am I delighted?….. What do you think?

At this point can I add that if there is anyone from the UK considering MVD or looking for someone who will give you sound advise then please consider contacting Prof. Coakham.

My consultation with contacting Prof. Coakham, on 09/12/04, lasted over an hour, my questions were answered before I even had a chance to ask them, he was honest and open about any complications that can arise and very positive about the benefits of an MVD. Even if I had not decided to proceed with the MVD I would still have left knowing a lot more about HFS and I would urge any sufferer to take advise from a specialist like Prof. Coakham. As for the operation, scheduled for 09/28/04, hopefully the outcome will be as positive as my initial consultation

If there is anyone in the UK (or anywhere) that I can help with further information about my consultation with Prof. Coakham then please feel free to email me at jegla1@onetel.com.

Thank you all once again for your help.

Permission granted the HFSA to post Personal HFS History on website.
Ursula Kennedy, October 20, 2004

 

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