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Remitting Hemifacial Spasm - surgery or not?

Posted , 27 users are following.

Roseann
Roseann

Wonder if anyone else experiences long remissions from their HFS? I can sometimes get up to 3 months off before it comes back and this is bliss. I have been offered the MVD surgery at the Frenchay in Bristol and am agonising over whether I should or shouldn't. On a bad day it's yes and then when in remission it's no. Another question is whether anyone else has undergone this surgery at the Frenchay (NHS Hospital) and how they found the whole experience. Thanks if you are able to help me on this.

3 likes, 121 replies

121 Replies

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  • nickip
    nickip

    Posted

    Hi,

    New to this and thought HFS was unique to me!! Diagnosed in Oct 2009,had meds didn,t work.Had botox every 3mths for last 4yrs at St georges in Tooting.Really exhausted with not being able to feel one side of my mputh.can,t smile.and still spasming especially when stressed.Thinking of surgery,

    Prof Henry marsh at St georges does this .

    Any feedback please.

  • Roseann
    Roseann

    Posted

    Hi Nick/Nicki

    Totally understand how this makes you feel. Please join the Facebook groups where you will find others who have been treated by Prof Marsh at St Georges, Tooting. There are two groups on Facebook and both are excellent for support and information. The International one probably has best information on its FILES section, but there are more UK people on the other group. I'm in both groups and have found excellent info there. As you have probably read on this thread, I had MVD last June in Bristol with Nik Patel with an excellent outcome. I would urge you to find a surgeon who uses lateral spread monitoring as part of the surgical process. This seems to limit the risk of hearing loss and I believe it produces better outcomes. You should be looking for this and a surgeon who does lots of MVD for HFS operations with a total success rate in excess of 80%. Please send me a private message if I can be of any help to you in your delibaerations. All best wishes, Roseann

  • nickip
    nickip

    Posted

    Hi Roseann,thank you for you prompt reply.New to this so not sure how I find pts who have had surgery by Dr Henry Marsh .Can you please send me a link,.

    Thank you so much,feel not quite so on my own with this .

    Nicki

  • Roseann
    Roseann

    Posted

    Hi again Nicki

    It's difficult to put a link on this site because the administrator has to check it and OK it and that takes time. I will send you a private message on this site with my home e-mail address on it. If you e-mail me with a clear heading re HFS then I will send you the links. Alternatively, just key in a search on Facebook for Hemifacial Spasm Support Group and click on the JOIN button. Each group has a FILES section with a list of members and the doctors they have used for MVD. I know for sure that Henry Marsh has been mentioned but I can't remember the outcomes. Alternatively, just do a post (once you are a member) and ask if anyone has been operated on by the Prof. These groups are so friendly and helpful and you won't feel alone any more I promise. We all know very much how you're feeling and how devastatingly anti social this condition can be. If you don't get my private message then please post again and I'll find another way. Very best wishes friend, Roseann (known as Angela Bond on the Facebook sites)

  • nickip
    nickip

    Posted

    Hi Roseann,

    taking a risk here but think this is a safe site .

    my email address is if you want to get in touch .

    thank you ,

    will look at facebook site

    Emis Moderator comment: I have removed the email address as we do not publish these as spammers will find them. Please use the message facility to exchange emails if required as they will not then appear on the site.

  • YKL
    YKL

    Posted

    Hi Nicki,

    A forum member here (username: Suewithout) had her mvd surgery done at the Atkinson Morley wing at St George's Hospital, but she did not mention the name of the neurosurgeon. I have copied her post below.

    "Hi, I have suffered with hemifacial spasm for almost 6 years. one hospital told me it was because I had no back teeth, So I paid out for false teeth. But at last I got referred to Atkinson Morley Hospital in Tooting. London.

    I had a microvascular decompression op 3 weeks ago.

    I woke up completely free of any twitching. Its Heaven. Although I have almost lost all my hearing in the left ear. I may get it back or I may not.

    I have another ear. Its got to be better than the twitching I suffered from.

    I was planning to go back to work after 2 weeks, But won't be returning for another week. As my job is minibus driver. So I plan to be sure before I go back, that i am fit and well.

    I tried Botox twice before the op. what a waste of time, and I couldn’t think of living the rest of my life being injected every 2 months.

    So I don't regret having the op. so good luck to all.

    suewithout 17 Jul 2010 (thread ‘HFS and MVD’)"

  • nickip
    nickip

    Posted

    thank you,that is very helpful.trying to organise an appointment with Dr Marsh.
  • gladys39971
    gladys39971 Roseann

    Posted

    Hi Roseann I have the same problem. Although my spasms are not that bad, as the are on and off (meaning I might get up in the morning and am ok, then they start all of a sudden on an on and off basis. They happen mostly when I am speaking, like ordering things at the cheese counter etc. and this is most embarassing.  I have been offered botox but do not know if I should do them or not, as when I am spasm free, I start thinking I might regret it, then when I get them I start thinking of have MVD, althought in my country now one seems keen on it and have not yet found a surgeon who will do it. I am really at a loss on this.
    • Roseann
      Roseann gladys39971

      Posted

      Hi Gladys, I really know how you feel and also how hard it is to make a decision when nothing is consistent.  HFS generally does get worse, and since I originally started this thread life has moved on for me.  My spasms became almost constant, day and night and I was intermittently dizzy too.  I therefore decided to have the surgery and now, nearly one year down the line, I am completely healed; it's fantastic and i feel that I have my life back.  As for Botox......   I wasn't very keen after I had it x 3 times because they would only inject one side of my face and it make me look and feel very wonky.  It did help the spasms but not my self esteem or personality.  If you do go for Botox then it's best to have very small doses at first and just see how it feels for you and how it helps (or not).  Wishing you the best and sending you good wishes in your search for some answers.
  • gladys39971
    gladys39971 Roseann

    Posted

    Hi once again Roseann,

    thanks you so much for your reply, it feels so good to speak to people who have, or have had my problem. Unfortunately, the medical people I have spoken to are not keen on surgery and no one seems to perform it out here.

  • sally44295
    sally44295 Roseann

    Posted

    Hello Roseann, I have had hemi-facial spasm for about 6 years (I'm 64 now) and have been having Botox injections every three months. I hate the feeling of tension I get on the left side of my face and of course being lop-sided, and am beginning to worry about the long-term effects of having poison (Botox) injected into my face. Can you tell me how to go about getting surgery? Is it available on the NHS? I go to St George's Tooting for my injections but I suppose I could go to Bristol for surgery if that is the only tried and tested place to have the op. (I have never experienced any remissions from my HFS by the way.)

    I look forward to hearing from you.

    Best wishes,

    Sally

     

    • Roseann
      Roseann sally44295

      Posted

      Hi Sally

      Sorry to hear your spasms/botox are beginning to give you real difficulties.  Like you, I didn't like the lop sided feeling or appearance following Botox and I decided that surgery was the only way forward, even though it terrified me!

      I am pretty sure that there is a surgeon called Mr Kitchen at St George's but I may be wrong.  He has operated on other members of the Facebook group, but not totally sure with what degree of success or resultant one sided hearing loss.  I do not live in Bristol but just asked my GP to refer me there, which she did without any quibble - this was via the NHS.  The thing I particularly wanted in a surgeon was a long history of doing MVD for HFS and success rates in excess of 80%.  I also wanted a surgeon who used lateral spread monitoring as part of the operating process.  Nik Patel at Southlands Hospital in Bristol (this is the hospital which replaced the Frenchay last month and is all new and shiny, with mostly individual rooms in the neuro department) fulfilled all these criteria.  There are certainly other surgeons with good track records, but I wanted the best one I could find.  Nik Patel was trained by Professor Coakham (now retired) who was previously reported to be the country's expert in this surgery.  Please feel free to private message me if you need any more info at all.  I did write a list of questions that I asked Mr Patel before opting for the surgery so that might be helpful, as might my diary following the surgery.  Surgery is not a walk in the park and does carry some risks, but I can't tell you how great it is to be rid of this problem once and for all.  Wishing you the best Sally, Roseann  PS  Initially I opted for a private appointment with Prof Coakham and this is also possible with Nik Patel at the Spire Hospital in Bristol.  My private appointment and MRI cost me about £700 in total but it gave me a quick appointment and reassurances that I was really dealing with HFS and nothing else.  If you haven't had an MRI then I would ask for one right away.

  • gladys39971
    gladys39971 Roseann

    Posted

    Hi Roseann I have heard of the surgeon Nik Patel in UK and I was trying to see how to contact him. Being from Malta I have to see what it would cost me to have the op done in UK. as I would have to do this privately. Any help. Many thanks. My email is _____.

    Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

  • sally44295
    sally44295 Roseann

    Posted

    Dear Roseann,

    Thanks so much for your speedy reply. You have answered all my questions and I feel inspired to go ahead and try to get the surgery done at Bristol.

    I will see if I can get a private consultation with Mr Patel first, as you suggest.

    How did you go about doing that? Was it via your GP? (I haven't had an MRI scan.)

    All best wishes,

    Sally

    PS How do I private message you?

    • gladys39971
      gladys39971 sally44295

      Posted

      Hi Sally I am suffering from the same problem as you, but I there is nobody that performs MVD. Would you please be so kind as to let me know once you do the surgery in Bristol as I am toying with the idea of surgery, although I have been told to go for botox first. Am so confused as the moment.

      Wish you the best and good luck.

      If you would like to contact me privately my email is _____

      Patient Moderator Note: I have removed an e-mail address from this reply as it is the policy of patient.info to not publish these within the forums. Please refrain from distributing this information. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

      Patient Moderator Reminds: You provide / exchange personal information at your own risk.

    • Roseann
      Roseann sally44295

      Posted

      Hi again Sally

      If you look up at the top right hand corner of this page, below the Orange tagged 'Patient Access' you will see your own ID with 'Messages' underneath it.  If you click on messages you will find one from me telling you an address where you can e-mail me privately.  Please mark your e-mail with Hemifacial Spasm or something similar so that I don't lose it in my junk folder.  Look forward to further discussions.  And, yes, I did ask my GP to refer me to Bristol.  Nik Patel operates out of the Spire Hospital, Bristol and I think he usually sees patients privately on a Friday.  An MRI scan is really important and you might be able to get this done at St Georges to avoid paying privately??  If not then Nik Patel will arrange it on the same day that he sees you so that he has your results in front of him.  All best, Roseann

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