Too old for surgery?

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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.  

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  • Posted

    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

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    • Posted

      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.  

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  • Posted

    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 
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    • Posted

      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.
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    • Posted

      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!

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    • Posted

      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
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    • Posted

      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

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    • Posted

      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

       

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    • Posted

      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

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    • Posted

      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
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  • Posted

    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.

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