I am a suffer.
Posted , 4 users are following.
I have had my Hemifacial Spasam since 1999. Why it ever started I do not know.
Had a MRI scan at the Q.E Birmingham - such along time ago I do not remember.
Just last year I have had another - don't really understand why!
My experience of this condition has taken over my life. It started with just a twitch then came down my face and into my lip.(left side). I have has one single Botox injection then I found I was pregnant this was in 2001. This was so strange it made my eye stay wide open.
My neurologist put me on Tegretol and Rivotril tablets but this doesn't help the spasams.
I also suffer really badly from depression which started in 2001 and have been on antidepressants which Have just been changed as I have had the most horrendous time. Even going out through the door for me has been a struggle, but hopefully I just feel I may be turning a corner.
I still have a mixture of good & bad days.
Does anyone else have the same problems?
My GP has referred me to go and discuss SURGERY however this scares me to death, the stories I hear make me wonder if this is the answer!!!!
0 likes, 3 replies
YKL
Posted
Welcome to the forum, you will find many fellow hfs sufferers here who understand your condition, our stories to be found on the others threads under Hemifacial Spasm.
I think it is safe to say that none of us took the surgery option until years after the onset of this horrible ailment. Personally, I only opted for surgery 5 years later when botox stopped working for me and surgery became the last option. This was just over 2 years ago but unfortunately the surgery has only reduced the spasms by 20-30%. I wish there was as much discussion about mvd surgeries back then, for now thanks to the exchange of information here and the 2 support groups on Facebook, it is widely accepted that Nik Patel at the Frenchay Hospital is the man to fix this condition in the UK. There are success stories elsewhere but I have asked my GP to refer me to him for a second surgery as I feel he offers me the best chance to become spasm free. By the way, I had no complications from the first surgery and the recovery was smooth.
What I experienced is - you just know when the time is right for surgery. I am terrified at the thought of undergoing the knife but then the spasms affected my life so badly that I just want it gone no matter what.
Very best wishes,
Leon
Roseann
Posted
I'm so sorry to hear how HFS is affecting your life and your mood, and, believe me, I have also been where you are. Please do join the Facebook Hemifacial Spasm Support Group where you will find young people like yourself who know exactly how you feel. So may of us have felt alone until finding others who can really understand on these groups.
I had HFS for 9 years before finally agreeing to have surgery at the Frenchay Hospital Bristol with Nik Patel last year. It was a massive decision and one which petrified me. I echo everything Leon has said above and would encourage you to at least consider the surgery option. It is a big operation and a big decision but, for me, it was the best thing I have ever done. I am 62 years of age and quite unfit, but I went through the operation without any problems at all. Six weeks after surgery my spasms disappeared and my face returned to normal. I have my life back and I can't tell you how good that feels. HFS blunts your emotions, your relationships and your sense of who you are, and it's worth giving it your best shot to be rid of it forever. We are here to help you in any way we can and can give you a list of questions to ask your neurosurgeon if you decide to have surgery. I know that they don't use something called lateral spread monitoring for HFS surgery at the QE and this is something which Nik Patel thinks is really important to the outcome.
Take care and don't be alone any more. There is light at the end of the tunnel. Roseann/Angela
patty73737
Posted
if you have been seeing a neurologist and have to ask why and also don't know why you have had 2 mri s...go see another neurologist and don't wait. This disease is so strange and crippling to the face and you desrve comfort and straight answers. I too suffered from depression and never wanting to go outside. I'm so happy you joined our group. My eye started to twitch first. As years passed spasm moved down my face and neck. Botox helped for a few Years- then nothing worked. I agree surgery of any type is very scary but as you will read in previous posts is a last resort. I hope you can find some relief on this blog. Not all surgery stories are horror stories. I had a successful surgery just last month. (See my previous posts) their are lovely women on here with great information. Please stay and hang in Helen. You are not alone!