Hello all. My 49 year old husband was diagnosed with HFS about 15 years ago and has been getting Botox injections every 12 weeks with moderate success. The spasms disrupt his sleep and cause headaches which affects his work at times. He's been told that his HFS is severe and that this is, "as bad as it gets". He's also been told he's too old for surgery. Does anyone have any input on that? We live in Canada if that makes any difference. Thank you, all.
Hello Wife of Dave,
Wow, a diagnosis fifteen years ago. This is quite unusual in the face of this condition of which many medics are in blissful ignorance. From your phrasing, I'm assuming he's 49 now, but even if he's 64 ( 49+15 !) I think its correct to say that this is not too old for a surgical attempt to correct this problem. I imagine that there are health issues which need to be taken into account - and suitability for surgery would obviously vary between individuals, but it's my understanding that many individuals of a variety of ages have had their lives transformed by the MVD operation - including me, who had mine at age 47
There's a facebook group for HFS sufferers. I know that this provides detailed advice and emotional support for the many people who's lives are blighted by this wretched condition. Being a techno-dullard, I'm not sure about the ways of entering this group ( quite easy I think!) but there are helpful folk who keep an eye on this forum ( Roseanne, for instance) who I'm guessing would be more than willing to point the way for you.
All the very best to you and Dave
Thank you for your reply, Ed. Yes, Dave is now 49 and is in relative good health. I'm not sure why the doctors have pooh-poohed the idea of surgery. He's on his second neurologist (due to a move) and both have been fantastic and well respected so we didn't question their opinions.
I'll definitely have a look for that Facebook group.
Hi wife of Dave. I can obviously only speak from my experience, but I had successful hemifacial surgery two years ago at the age of 53. So long as you are in good health I see no reason why thus operation couldn't be performed at any age! I live in UK and my operation was performed on the NHS. I would definitely seek the opinions of other surgeons/doctors.....please don't give up, it transformed my life and should this horrendous condition ever return, I would not hesitate in going through an operation all again. Good luck
Thank you, Debbie. I'm definitely going to talk to Dave about this. I'm hopeful that he may find some relief.
Good Evening,
I was born on 9.4.51 and I had my microvascular decompression surgery on 7.7.10. So, I was 59 when I received my surgery. I suffered with HFS for eight years. I wish that I would have had the surgery when I was first diagnosed.
Thank you, camas!
Hi Debbie, I live in the UK, would you mind telling me where you had your operation please? I am currently under Walton Centre in Liverpool and they won't entertain the surgery for me right now and want to keep on with botox - only had one round so far.
Hi Sharon
I had my surgery at addenbrookes in Cambridge, under Mr Kirollos. I too had Botox at addenbrookes for around 2 years. I would go every three months, but after a while it wasn't really working for me. I would suggest Sharin, that you ask if they would also inject on the other side of your face to prevent an imbalance. I had always asked fir the operation from day one, but I know that they like to go down the Botox route first.
Having the operation was the best thing I could have done and even though I suffered Bell's palsy about a week after surgery (completely went after three months!) I wouldn't hesitate in having surgery again if I had a relapse. Just persevere and keep asking for surgery. I'm a firm believer in 'he who shouts loudest'!! Good luck and should u need any other info, don't hesitate to ask me!
Bless you Debbie, that is so kind of you. I am really pushing for the op but I am being told mine is mild and they won't put me through such a big surgery, which I do get, but surely it pays to get it done whilst I am youngish (47) and it is mild, so less damage. I will keep shouting - I've even emailed a surgeon at the hospital, not sure how that will go down but I am desperate. Did they give you any stats about the likelihood of it returning Debbie, that is my big fear, to go through the op and it be for nothingx
Well done to you for emailing the surgeon! Unfortunately the condition is chronic so I suspect will get worse, although, believe it or not, my dad has it too! He's had it for around 6-7 years but he is now 80 and his hasn't gotten any worse, but he is still having Botox so it's probably working for him....obviously everyone is different.
Yes I was told of all the negatives concerning the operation, but to be honest Sharon I didn't take much notice because I was so adamant I was going ahead with it. I think if I thought too much about it I might have backed out! Sorry, but I can't remember what the odds were on the hfs returning - I do occasionally get a spasm in that eye and I do go into panic mode, but it only lasts for a few days and it's normally when I'm stressed it tired, and it is unnoticeable to anyone other than myself. It's like a normal flicker that everyone gets when they're tired.
The operation went well for me although I did feel sick for a good week after ( on the plus side I lost nearly a stone in weight)! As I said, my biggest problem was the Bell's palsy which knocked me for six, was very scary and upsetting. That completely cleared within 12 weeks, but think it was the fact that I wasn't sure whether it would ever go completely.
As I said Sharon, I wouldn't hesitate in going through it all again, not because the op was a walk in the park, but to be spasm free and have my life back was so so worth it. X
Oh crikey, is HFS hereditary Debbie, I have two boys, couldn't bear to think I could have passed this on. That is good news that the condition hasn't worsened for him during that time - that is what my neurologist said, everyone is different and you can't predict the outcome for anyone, sometimes botox works and is all you need for the rest of your life, others worsen and have to have the op, there is no way of knowing. Thanks again for your comments, Debbie, I am on the Facebook Hemifacial Spasm Support page, not sure if you are, and sometimes there are such sad stories on there, they terrify me, but good to know there are successes xx
Hi Sharon
For some reason they say no, it isn't hereditary, but I think perhaps it's something to do with the shape of our heads? Obviously me and dad must have same shape! Anyway, it's quite rare in men, more common for women for some reason. I too have children, all grown up now, but I'm sure it would have to be very unlucky for one of them to inherit it from me....try not to think about it! Persevere with the Botox Sharon, on the plus side, just think of the wrinkles you'll be getting rid of!! As I said, mention you'd like the other eye botoxed as well-I did after around a year and he agreed to do both eyes no problem! X
Thanks Debbie, really enjoyed talking to you today and hank you for taking the time with me. I will persevere with botox for now, but after your reassurance, I won't hesitate if and when the time comes for surgery. I like the idea of less wrinkles. Thank you again sweetheart, you've been really kind x
Hello there Dave's wife! Just to say that I had HFS for 9 years before having surgery at age 62 in Bristol, UK. I am now spasm free. As Ed has indicated below, age is not a barrier to having surgery and the surgeon will ensure that Dave has all the necessary pre-op checks and tests to ensure that surgery is safe in his individual circumstances. I would highly recommend joining the Facebook International Hemifacial Spasm Support Group. It has some very helpful and supportive members and a lot of useful factual information about surgeons, members and outcomes from surgery. Dave will need to become a member of Facebook (if he isn't already) and then just do a search on this group. It is a private group so only members can read one another's posts. I've found it very helpful and think others would say the same. All best to you both and do hope that Dave will find a cure to this debilitating and emotionally blunting condition.
You are so so welcome Sharon. I truly hope the Botox works for you and in the meantime feel free to get in touch any time x
Thank you so much, Roseann. I'll pass on the Facebook info to Dave. This has all been very positive.
Hi there,
I suffered from HFS for 20 years. I tried the botox injections for years but once my smile became crooked I could not continue with Botox. I am 63 years old. I had the surgery, MVD, for hemifacial spasm 8 weeks ago. I cannot tell you how happy I am that I had the surgery! I wish I had done it ten years ago. I awoke from surgery spasm-free. I live in the USA in Philadelphia, PA. My surgeon was incredible. Please tell your husband that he is not too old to have MVD. I feel like myself again. If you want more information about the surgery and recuperation email me . I'd be happy to share my experience with you and Dave. Best wishes, Sue C.
I started to develop a twitch on the left side of my face in November of 2003. Prior to that I remember that my left facial cheek and left side of my tongue would periodically become a little numb. In the summer of 2003 my upper lip, on the left side, would swell up. I had my dentist and doctor baffled. On November 9, 2003 I had a heart "incident." That is what my cariologist called it at the time, because it wasn't a heart attack. I felt clammy. I went in to emergency and they were going to send me home, but I was adament that there was something wrong. Finally something showed up on the EKG. They found that one of my arteries was 90+ blocked, so they implanted a stent. It was at the post-op that I complained about the twitch. The doctor said, "We all get little twitches, it will go away." Well it didn't.
I don't know how you put up with hemifacial spasm (HFS) for twenty years. I don't know what I would have done if I hadn't found a surgeon that specialized in microvascular decompression surgery (MDS). I had that surgery on July 7, 2010. I still have real bad pain in the muscle and nerve on the left side of my face. I was so determined to free myself of the pain and twitching that I had two of my upper teeth extracted. One of the doctors at the University of Washington Medical Center told me that they have had patients come in that have had all of their upper teeth on one side extracted. On one of my posts I personally recommended that an individual with HFS get MDS sooner than later. HFS was controling my life: I couldn't work on the cars, I felt awkward smiling, I never wanted to go out in public, etc.
Good news!!! Dave's neurologist is referring him to someone in Winnipeg who does the surgery. Could be a long wait to get a consultation and then another wait for the surgery but it's a light at the end of the tunnel.
Thank you all for the feedback that helped Dave push the doc a little more.