Hemifacial Spasm

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I have just been diagnosed with Hemifacial Spasms at the age of 46 - since suffering from daily fluttering in my left eye. Thankfully at this stage it is still only affecting the left eye (I have had this since May last year) and hasn't spread anywhere else. I am beside myself with panic that I am going to end up abnormally deformed and disfigured very soon as it does start to include the rest of the face. Can anyone give a complete novice regarding HFS some advice. I only got the letter yesterday and don't see my Consultant until April and I am out of my mind at the outlook prognosis and what to expect. Is it really going to leave me looking disfigured permanently?

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    Hi Bea

    I so admire your determination to crack this horrible condition and I wish you all the luck in the world. Wouldn't it be fantastic if someone/you could find a way of stopping the spasms without surgery being needed? There are many who would be eternally grateful to you for your perseverance.

    My own view is that our spirit plays a big part in how we deal with things, but, if there is a mechanical fault (like on a car) then the only way forward is to fix that fault. It seems utterly incredible that by untangling a few nerves and separating them with Teflon the surgeons can rid us of HFS, hopefully forever. It is not brain surgery, but nerve surgery in the brain area, and these surgeons are absolutely incredible in their skill. It took me 9 years to accept that surgery was the only real way of getting better, and BINGO, I am now spasm free. But the secret of success, in my less than humble opinion, is getting the right surgeon, even if it means travelling miles.

    I wish you and Sharon the very best of luck with the holistic approach and hope and pray that one way or another you will find a cure for yourself and others. All very best wishes, Roseann

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      Hi Roseann,

      What do you think caused this? How old were you? How did you find your surgeon? Who was your surgeon? How long did you live with it before you decided to have surgery?

      Have you had any pain or twitches since you had the surgery? I think mine was caused by a tooth implant that was not done properly. I'll have to look into this more but the timing makes sense. It sounds like most people feel it on the left side of their face. Is this true?

      Thank you. I hope to hear back from you. I liked what you wrote to Bea and found comfort in it.

      Kind regards.

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      Hi ajbr, I think HFS is usually just 'the luck of the draw' and some people are more likely to develop compressions than others - we may be born that way.  It took me a long time to find the right surgeon in the UK and I found him via one of the online forums (do join the Facebook Hemifacial Spasm International Support Group which has so much good and relevant information and some amazing group members who are very helpful).  My surgeon was Nik Patel at Southlands Hospital, Bristol, UK - he is very experienced and many people have given good feedback on his skills.  I lived with HFS for 9 years but should have had the surgery much sooner - a lack of knowledge and courage caused the delay.  My spasms were right sided by the way but it can occur on either side.  Please let me know if I can be of further help to you, all best, Roseann
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      Hi Roseann,

      i had an operation 9 weeks ago for hemifacial spasm and it does not appear to have worked.I have had a follow up consultation with the surgeon who has offered a further operation.Obviously I don't want to go through this procedure again but would be SO pleased to be spasm free.

      i wondered if you are in Britain if you would recommend a surgeon.

      many thanks

      Marilyn

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      Hi Marilyn, yes, I am in Britain.  It's always hard to recommend, other than based on what I've read and what I've personally experienced.  But, my man will always be Nik Patel who operates from Southlands Hospital in Bristol (or privately at the Spire).  I have known about 30 people who have had MVD surgery with him and I would say that 25 have been completely cured within the first year post surgery (some immediately and some after a few weeks included in this figure).  None have had hearing loss and only two have had a small CSF leak which Nik corrected easily.  The 5 people who weren't cured have seen improvement, bar one person who continues the same as before surgery.  I know that Professor Eldridge at the Walton Centre also has good results and I am sure there are others too.  Having said all of this, I think that 9 weeks is FAR too early to say that your MVD hasn't worked.  Are you seeing any improvement in the spasms?  If you are then there is a good chance of lots more improvement.  Could I ask who did your surgery and where?  I am very surprised that a failure has been declared so soon after the operation - very unusual indeed.
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      Hi Roseann,

      so glad to hear back from you and also to hear that you are based in the U.K.My surgeon was Mr Owen Sparrow in Southampton and although I have private health insurance the operation had to be done at the General .He telephone me yesterday and said he had just been to a conference and there had heard of a case where the surgeon found another vessel behind the one he thought was the problem.He is now wondering if that is my problem and is prepared to operate again(after my next scan which is on Thursday).I got the impression from him that relief from the spasms should have been instant.Is that not your understanding ?If not ,how long do you think I should wait before considering another operation?Also,I am wondering if it's difficult to change surgeons and how do you find out the real success rate?Are there any published figures I should study?

      Sorry to bombard you with all these question but you seem quite knowledgeable on this matter!

       

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      Hi Marilyn, sounds like we may live quite close to one another!  I live in a village between Andover and Basingstoke in Hampshire.  It's interesting to hear that Mr Sparrow did your surgery.  I know of two others who had surgery with him and unfortunately neither was successful first time around.  My advice is based upon what I've read on a number of forums and so can't provide anything in writing unfortunately.  In the main surgeons do not recommend a second surgery within the first year as far as I can ascertain.  My friend who also went to Mr Sparrow is probably going back for a re-do just over a year after her original surgery but I think he would have done it a bit sooner - I can put you in touch with her if you want to PM me your e-mail address.  I have read some research which states that, if you see improvements in the first four months then you are likely to be spasm free within a year - I can  find this for you if you want me to.  As for changing surgeons when you are covered by private health insurance........  not sure, but it may be worth checking this out with your insurer.  If they are willing to pay for a second surgery then they would probably be prepared to pay any accredited surgeon.  Nik Patel operates privately out of the Spire Hospital in Bristol if you want to get a second opinion from him.  He would be sure to need your newest scan in order to see what's going on.  Nik Patel will tell you that he has an 80% success rate with a further 10% seeing improvement, and I think my own small sample of 30 bears this out quite well.  Surgeons always seem reluctant to publish such data and this is probably because it can take up to a year for spasms to completely disappear after surgery - they do not always know the exact figures for complete recovery.  In answer to your question about how long you should wait before another surgery, I believe that this very much depends upon what the MRI reveals.  If a compression has been missed and not padded then I guess 'the sooner the better', but if the surgeon cannot see anything amiss then it's worth waiting a lot longer.  Sorry, I must sound very opinionated - I have no medical training at all, just a lot of interest in this particular subject and an ongoing membership of x 3 forums where I read most posts.  If I can be of any more help then feel free to private message me your e-mail and we can talk direct.  All the very best to you.  Angela
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      Hi Angela,

      i would welcome keeping in touch as you have obviously much more knowledge of this condition than I have.It's interesting that you know of two people who have had unsuccessful operations with Mr Sparrow.After my scan on Thursday things may be more clear,meanwhile I am going to speak to Nik Patel's secretary 

      thank you so much for your help.

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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      Dear Roseann,

      I have had a hemi spasm since 2005.  I too decided after years of botex injections that created unsatisfactory side results (droopy left side of face), decided to sign up for MVD surgery. I will have the surgery next month in Pittsburgh.  Do you have any advice for me regarding the surgery process?

      Thanks,

      Babs

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      Hi Babs.  Sounds like 11 years of HFS is quite enough and you must really have had enough.  You are so lucky to be going to Pittsburgh and presumably Dr Sekula - he has such a great reputation and if anyone can cure you he certainly will.  As for advice......   I would say it's important to bear in mind that recovery takes months, not days or weeks.  I didn't regain full strength until about 3 months post surgery, but I felt well in myself about 3 weeks after surgery.  You will need to rest lots and continue drinking lots of water in the first few weeks and don't be tempted to overdo things even if you feel well.  I would also advise getting yourself a comfy V shaped pillow, having lots of dried fruit to guard against constipation post surgery, a lip balm because lips can get very dry and some ear plugs for the hospital.  It's also important not to take any drugs pre-surgery that are blood thinning (eg aspirin based) unless your surgeon knows about them in advance.   One thing that you need to ask is 'what if I have any setbacks or strange symptoms after I've gone home?'.  You need a clear idea of what to look for and how to deal with it.  The two most common nasty complications are Spinal Fluid Leakage (where you may have a blinding headache and possibly clear liquid coming down your nose) and Bells Palsy (which seems to occur 7-14 days post surgery) where your face may drop on one side.  Both of these things are rare but not unheard of and it's important to know what to do if either should occur.  

      So, I hope that helps a bit.  I am sure you will be able to look forward to finding the joy in your life again after surgery.  It may take time for the spasms to disappear so don't be too disappointed if they are still present when you wake up.  My own went away at 6 weeks post surgery and I know of people who took up to a year for them to disappear.  I hope you'll let us know how you get on Babs and I wish you all the very very best.

      All best wishes, Roseann

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      Dear Babs,

      I'm going to Pittsburgh myself after a 13 year struggle to reduce my spasms. Was hoping to get there when Dr Jennetta was still on staff, but after the drugs, Botox, and two MVDs I have about had it. While going to local neurologist medical group for neuralgia, anew Dr has talked me into trying to get the head on straight! No kidding he is a graduate of Pitt so finally I hope I am on the right track. Much luck with your upcoming appointments and treatments.

      Pam Fifer

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      Hi Roseann,  I really appreciate your sharing. I already have a Bell's Palsy droopy look from muscle atropy caused by botox treatments over many years. I smile and talk out of one side of my mouth.  Not pretty!  I got a second opinion from another neurologist who suggested I could get botox injections on my good side to even out the asymmetry. That would mean that I couldn't smile or talk normally but I would be even? In addition using botox on the good side of my face would be considered cosmetic and not covered by insurance!!! So surgery seems the only way to go.  I hope this atrophy of my muscles will reverse its after the surgery.  I know it will probably take years! It will be interesting to see what happens. Whatever happens I will never ever get another botox injection!! I will ask my surgeon about the possibility of true Bell's Palsy occuring though.  Thanks, again for your thoughful and kind response!

      Babs 123

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      Hi Pam,

      Thank you.  I am looking forward to the MVD surgery with Dr, Sekula.  When are you planning to be in Pittsburgh?

      Babs 123

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      Wishing you all the very best Babs.  Your face may still be a bit wonky after surgery but I'll predict with great confidence that your face will look so much more relaxed and 'free'.  I was told by my surgeon that Bell's Palsy occurs in about 5-10% of cases, so still good odds.  Will be rooting for you.

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      I will be there for my consultation on Nov 1st.  Staying at the Doubletree in Monroeville.  My Neurologist does recomend Dr. Sekula.  This is my fist indoc appointment with UPMC.  Funny,  I grew up in this area not more than 10 miles away.  Work took me away for 30 yrs... (ha ha) Who would have thought I'd be going back.  Anyway.  I will be in the area from the 31st to the 4th.  Perhaps if you have time,,,, I can recommend some sight seeing and restauraunts.  The MVD surgury 1st day is a blur. Second day your are up and moving about.  Day three you usually get sprung.  After both of mine I went back to work after a week. Luckily I had lap top and could keep up during the week off.   I will be thinking of you and hoping for your full recovery and elimination of your symptoms.  Most folk don't realize how hard  this is.  You go on until that one twitch that is the straw that broke the camel's back.  Just getting treatment has been a journey.  Suppose all of us could write a tell all book about our experiences with the medical community, insurance, and plain just getting folks to support us.  

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      Hi Pam,

      I hope your consultation goes well. I was wondering if you would share where you had the other 2 MVD surgeries done? How far apart did you have them? There certainly don't seem to be many neurosurgeons who specialize in MVDs. And thanks for you offer to recommend tourist activities but I have a sister in Pittsburgh and she has been our tour guide on several trips. It really is an interesting city!

      Babs  

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      Dr Sekula is a gifted, caring, knowledgeable neurosurgeon and a true gentleman. He treats housekeeping personnel as well as he does his collegues. If you grew up near there, you know all cool spots. Point State Park,Station Square, etc. You will be in the very best doctors care there is in my opinion. I had my surgery on July 26 and am almost completely cured. I'm one of the 50% who takes a while for spasms to be completely gone. I pray your one of the 50% who are cured immediately. You have nothing to fear with Dr. Sekula. Prayers and best wishes for a speedy recovery!

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      My surgeries were done at senara Norfolk General by 1. Dr Bob Waters and 2. Dr Singh. Both overseen by Dr Straznick. Neurology Specialists. Only two neurology groups here in tidewater VA. 1st surgery in June 2009 the second in September 2011. I could get no entre to Pittsburgh MVD from either group here as they thought they could handle my case. Ever notice neurology appointments come in threes, The first they are happy to help, the second it is, Oh you're one of those. Followed by How do we get rid of you. I take notes, My first visit the Dr was like, no Botox, it will make the nerve structure brittle. But by visitno 3 he was like, I didn't say that. Even when you have done all the leg work with the insurance co. And received approvals. Tell me if this has been your experience

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      Thanks for the information. I really hope your recovery continues. They probably are tracking the mylon growth on the nerve. That sometimes takes a while. Mine did not come back. God Bless. Hoping you will be fully spasm free son.
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      Dear Roseann,

      I had the MVD surgery in Pittsburgh last month.  Dr. Sekula is a magician! Not only did my spasms immediately disappear but my droopy left side straightened back to normal as well! (No wonkiness) smile I like the word wonky.  It's really quite British.  My recovery has been great-- with an occassional headache only. It is so wonderful to be "normal" after living with this affliction since 2005. Thank you for your post surgery advice which I have followed.  And to the others who follow this site, if you decide to have the surgery please select your surgeon based on experience and percentage of successful outcomes.  Then go for it!!

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      That's fantastic news Babs; I know how great it is to feel like yourself again after such a long slog with HFS.  And just as good is the fact that you're no longer a wonky-face!  I couldn't agree more that the choice of surgeon (based on firm statistics of experience, success and no deafness) is crucial for anyone considering surgery.  Hoping that you r recovery will continue to be smooth and that you will be thanking Dr Sekula for many years to come.  Thanks for keeping us all posted Babs.

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      Hi

      i know your post is old but I also believe mine was caused by a tooth implant also. Have you had it removed?

       

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