Hemifacial Spasm

[LetMeGoogleThat]

After suffering this condition for many years, having the typical UK journey to diagnosis, which includes seeing on average 5 Doctors and having at least 3 misdiagnosis. I and a few others from around the world have decided to try and turn our experiences into positive action by raising awareness. There is a single source of support, which is a global Fb group and that's it! So, anyone here either living with it or support someone with it?

My DM had this awful condition, now touchwood treated after surgery. She had to go private for a diagnosis as the NHS wait was appalling while it was having such a profound effect on her life. The first private consultant said it was idiopathic and couldn’t be treated but thankfully the specialist she saw next totally disagreed while looking at the same MRI scan and she went on the list for surgery.

She was completely exhausted living with the condition.

I do get occasional pulls/ twitches by my lips and eyes and have a huge fear of getting the condition too!

Sorry that you have been affected OP, we haven’t met anyone else with experience of it in real life.

@GGodspeedJune wow! I didn't expect to get any responses, so thank you! And yours and your DMs experience is very typical of the UK in general. Really interesting that you are also having symptoms, I keep reading that it's not hereditary, but my aunt (mum's sister) also has the condition, so is it a coincidence or a lack of research?? Here is the link to the fb group, it's been a god send to many and stops us feeling so alone, come and join us www.facebook.com/groups/HemiFacialSpasm/?ref=share

Anyone else? Or is it really that rare?

@LetMeGoogleThat

Wow, I didn't expect to see any posts come up when I searched hemifacial spasm!

Can I ask how you got diagnosed with it? What did they see on your mri?

I believe I may have this. My mri shows vascular looping around the 7th and 8th cranial nerves. I have been having vertigo, hearing distortion and tinnitus. I also get a tightening in my eyelid, especially when tired. Sometimes, in the middle of the night, I cannot open my right eye. It doesn't flicker though. I am waiting to see ENT on Wednesday when I'm going to mention it. But I've read that most hfs is caused by a compression of the 7th nerve, which is what I've got. What do you think?

I'll have a look at your Facebook group if I get diagnosed this week, but from pp it sounds like it won't be a quick process.

@Puppupandaway It often starts with the eye twitch and mostly on the left. I get hearing distortion too. Mine was picked up on an MRI, but it took 2 years back and forth to the GP to get finally heard. Its often a compression of the nerve, but it can also be idiopathic and it's really difficult to get seen by a neurosurgeon in the UK and neurologists often just treat the symptoms. The USA has a much better response to doing the MDV surgery, obviously medical care is a business over there. I'm under the neurologist and they treat with botox every 3 months to reduce the spasms. Join the fb group as it's a great source of info, that we just don't get anywhere else!

Gosh my late mum was diagnosed with hemifacial spasm but she was told that there was no treatment and she simply had to live with it.

I mentioned it to my gp a while ago as I had a persistent tic around my eye and corner of my mouth and they said they'd never heard of it.

Interested to know more, particularly if linked to other conditions, as mum had a series of TIAs around the same time

How would you describe your hearing distortion @LetMeGoogleThat? Thanks for your response xx

@Puppupandaway it's like a constant whooshing in my ear, and I can hear my own heartbeat. I think it's down to the artery connecting with the nerve, but close to my ear. Some days are better than others, but it's ever present.

I do get that, but not matching my heartbeat. My issue with sound distortion is that all music sounds out of key and voices are robotic. This happens for days until I get an attack of vertigo which clears it. I really hope ENT know what I'm going on about and have a solution for me! Thank you @LetMeGoogleThat