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

After all these years of back and forth, I wanted to update that I finally had surgery at the end of last year and have face and smile back.If anyone else suffers from HFS, there is a cure.

Hi @LetMeGoogleThat i have looked at the FB group but it seems to be very US focussed? I am glad your surgery went well. I fear I may have this condition although praying I am wrong. The symptoms have only just started but rather than hang around I’ve made an appointment for a private consultation with a neurosurgeon.

I’m terrified of things progressing. At the moment it’s the noise in my ear that’s the problem. I can’t sleep. I only have a mild twitch but at my mouth. Maybe it will end up being something else.

Hiya! Yes, the fb page is global and has a fair few Americans, but as the condition is so rare it's a great place to actually meet others and compare. There is also a UK one, but obviously gets less traffic.

When you say you're paying for a private neurosurgeon, what do you mean? Have you had a diagnosis yet? And is it the first MRI you are paying for? The one thing to look for in a neurosurgeon, is experience as they don't all specialise in this area. Maybe go to your GP and ask to be referred to the closest regional neurological centre.

Thanks for reply. I don’t even know if this is HFS and am driving myself mad thinking about it. GP wasn’t concerned and said just wait and see if it goes. And symptoms don’t fully fit but seems near to HFS. Mild twitching that comes and goes, fluttering in ear on left side. However the twitches are near mouth and chin which I understand is atypical and are indiscernible to anyone but me. Dr Google came up with HFS but an ear related issue could be the cause too. And of course I am stressed to hell which I doubt is helping!

im just a panicker and have made an appointment with a neurosurgeon privately to discuss.,its not for a few weeks so may cancel. I suppose I'm just doom mongering.

Hey! I bounced back forth to the GP for almost a year, it starts to feel as if you are being gaslit! I've had 2 misdiagnosis, a suggestion it could be menopause and more shrugs that I can tolerate! It took me to break down in tears before a GP finally took me seriously. This is not uncommon, and that's why the fb groups were a lifeline, as at last I was speaking to others going through the same. HFS is incredibly rare, but very real! And the symptoms are horrendous, they touch every part of your life, and self esteem becomes non existent. Diagnosis is only yhe first hurdle, as next comes the battle for treatment and have your MRI read by neurosurgeon. I'm not sharing this as a woe is me, but you are going to have to advocate for yourself in the UK, it's not even listed on NHS direct. When it starts, try getting video and photos for appointments, as it never seems to trigger in a medical office! Until it's so advanced that it never stops.
Twitching around the mouth and cheek are not atypical, the facial nerve spreads across your entire face, and it can all be triggered. I really would recommend posting on fb groups for advice, there is a wealth of it, as most of us stick around as after 5 years, we know more than an average GP, and the mods are really helpful.

And also, whatever the outcome is, remember there is one cure, and it's not medical botox