Recently diagnosed with HFS...completely confused...

Hi 

I was diagnosed early this year with right sided hemifacial spasms and since then they have become progressively worse affecting the whole side of my face and like you my eye closed fully. My neurologist referred me for

Botox which I had in June and they were awful for me, they think I must be sensitive to them as the doses given were very small. Like you I experienced droopiness in my face especially my top lip I couldn't pout or even smile. (I've got a bag on standby :-) ) although never experienced the choking that you explain.

In my opinion Botox will only lessen the spasm not totally stop them all the time you continue with the injections. I wasn't prepared to have these done for the rest of my life as I was worried I'd end up with a totally frozen face eventually. Didn't know what would be worse.

I went back to the consultant and asked about surgery which I was referred to a neurosurgeon in Southampton General Hospital and I had this appointment last week. I have been lucky in that the surgery is an option for me.

My MRI does show some blood vessels but not enough to show how they are lying on the nerve. My surgeon has told me that he will only know more once I'm opened up, however if it looks like their position is awkward he will just stitch me back up.

I think you should talk to the dr who gave you Botox to ask about the choking. Read through the discussions in hi

Hi kate, you sound just like me, completely fed up and left to deal with it alone! Things have progressed quickly for me , my spasms started really badly in august this year when I flew to portugal, seems odd,  but i think flying might have triggered it. When I returned I went straight to a gp who diagnosed focal epilepsy incorrectly. I returned for a second opinion and got referred to neurolgy who confimed it was hfs as i feared. Luckily,  i already knew a lot about hfs from my own research but the consultant told me nothing , other than just diagnosing it , which is bad. I had an mri within 2 weeks of that appt ( that was a week ago) but I've not had the results yet to see if a compression is found. I have done a lot of research and found that a compression is only found in about 50% of mri scans , if its not found then you still have hfs its just not picked up. Without it being picked up I have been told surgery is

 not an option (not 100% sure if I have been told correctly but it seems plausible that you cant operate on something not seen) so evetually once my mri results are known I too

 will be offered botox which I will try but I it doesnt agree with everyone and the effectiveness does eventually fade. I think surgery will eventually have to happen but does it all depend on finding that compression on an mri? The

 problem is I have 2 young children to care for so resting

 after surgery would be a problem for me.  I go to the hemi

 facial international support group on facebook, you get great support from everyone in the group, join up!

caroline

Hi Katebet.

You don't say how long the time period has been between you first noticing the twitch and your diagnosis, but from your post, it doesn't sound a long time, so well done for not letting the grass grow and letting this distressing malady stun you into inertia.  Apart from Elvis impersonating (a crowded market!) you sound like you are well into the process of considering your options-one of which is surgery. My own opinion would be that once you find out that you definitely have HFS, finding out as much as you can about surgery is the way to go. Once you gain the necessary knowledge about MVD, it's likely you'll start asking questions like "How do I go about having this?" and " Who are the best surgeons in the field?" As you will note from the other helpful posts on this forum and other international/ facebook ones, this is the one proven way of consigning HFS to history. Botox is a sticking plaster which can work for some. It rather depends on whether you are content with continuing temporary fixes or feel that you want to get right to the root of the problem. This can only be decided by you. The decision to have surgery, whilst never an easy one, is not something I've regretted for an instant. I wish you all the very best. Please draw comfort from the many folks with an intuitive understanding of how you're feeling who are regular visitors to this and other internet sites. Your sense of humour will also help you, but its clear thinking and evidence based decision making that are key.

P.S re your question about botox and choking

Prior to surgery, I had botox injections every three months for eight years ( very minimal amounts as I had the problems with lopsidedness to which you allude), but I dont recall any night choking being associated wth these treatments.

Take care

Ed