Suffered with HFS for 5 years and decided to get it fixed . No Botox , no medication. Woke up from surgery spasm free.
Hi, I have suffered from HFS for the past 3 years, its awful. I have botox every 3 months which is a slight improvement but I would like to know more about MVD. Did you get it done privately or on the NHS? Where was it done? How much time do I need to take off? Is the cure permanent? I just can't imagine life without the spasms but I would do anything to get rid of them!
I would be really grateful for your input. Thank you. Mark
Sorry to but into your discussion Mark but thought I might be able to answer a few of your questions. HFS is awful; it takes a massive toll on your self esteem, work life and home life, and if there's a cure it's worth considering it. I live in Hampshire (UK) and it took me 9 years of 'pain' before I found the courage for MVD surgery. It's vitally important to find the right surgeon and it's also essential that you have an MRI scan just to rule out other causes of your spasms. I chose to go on a long waiting list to see Nik Patel in Bristol, because he trained under the previous national 'expert' and has 10 years experience of doing this operation on a regular basis. Professor Eldridge in Liverpool is also very experienced and has a great reputation. It's worth travelling for the right surgeon. The operation itself is a big one and needs respecting. You will have loads of risks spelled out to you, but from what I've read on these forums, the better the surgeon the less likely are the risks. Deafness on one side is one of the risks but I've not heard of any of Nik Patel's patients suffering this outcome (but not impossible of course). I was in hospital for 4 days and then needed 3 weeks of complete rest to feel anything like normal again. Nik Patel told me that it takes 4 months to feel at full strength again, given no extreme complications. Most people seem to go back to work after about 6-8 weeks but they talk about being tired when they do so. The body has to heal inside and out and can't be rushed! The cure should be permanent but I have heard of people who have developed a second compression, or who have not been fixed with the first operation and who have needed a second (but that's not the norm). For my own part, MVD was the best day's work I've ever done. I had a good recovery with no complications and I was aged 62 at the time of the surgery. My life is totally different without the spasms and I wish I had done it much sooner. Please be sure to also join the Facebook International Hemifacial Spasm Support Group and/or Facebook Worldwide Hemifacial Spasm Support Group. There is a wealth of experience and information on these sites and a fantastic group of men and women who really understand what you're going through. Please message me if I can be of any help.
Happy for you. Go gently as you recover; it does take time.
Sorry Mark, I also meant to say that I had mine done on the NHS. If you have private health insurance you will get it done within about a month rather than waiting a year!
Hello Roseann. Thank you so much for your input. Your advice is much appreciated and I am going to progress this because the HFS is just too much to bear. I'm concerned about the recovery period though - I run an extrememly busy company (I work 12 hours a day 6 days a week) and taking even 2 weeks off would be a problem. My wife and daughter went to Spain yesterday and are there for a month. I may not even go out there due to work. But I would definitely go through with this to get rid of HFS. Thank you again.
Mark
Hi again Mark, thanks for your reply. I really do understand about work commitments and also about the drain of having HFS. I have to give you some 'tough love' here.... There is no way that you can have this surgery and then work 12 hours per day x 6 days per week immediately afterwards; it is a BIG operation. If you are going to do have the surgery then you have to give yourself a fair chance of getting better, without complications, and that means rest, rest and more rest for at least 3-4 weeks and preferably more. It would be best if you could ease back gradually into work rather than hitting the ground running. Look at it this way..... If you, for instance, suddenly lost your sight (God forbid) the world would carry on without you at least for a while. No successful business can rely entirely on one person and you perhaps need to find a way of covering your input by training someone else up to replace you temporarily. I'd do it myself if it were feasible! Work is important but your health is much more important. HFS is not going to get better on its own and it will eventually wear you down so much that everything in your life will suffer if you don't pay it the respect it demands. Not one of us is indispensible so please listen to your Auntie Roseann and start putting your personal needs up there on the priority list. OK, nag over! Take good care and hope you can find a way to rid yourself of this 'b' condition.
Hi Mark,
I am in the U.S. And went to our leading surgeon in this country. Dr. Sekula has treated HFS sufferers from all over the world. While in the hospital ( for less than 36 hours) I was continuously asked where I was from as patients travel from all over the country and world to see him.
I was lucky enough to get an immediate diagnosis from an optimetrist who had studied under Dr. Geneta who really discovered this ground breaking surgery. I understand that many HFS sufferes may go years without a diagnosis .
I strongly recommend getting MVD. It was immediate relief for me . I feel like myself for the first time in five years. No shying away from eye contact, avoiding conversations and social situations, not to mention how incredibly aggravating the constant spasms can get. I woke up spasm free it is minimal down time. I went in on a Thursday morning and was out to dinner on Friday night. No running marathons or lifting elephants but overall a pretty uncomplicated recovery.
You are absolutely right of course Roseann. I am going to arrange the surgery and for the business to survive without me! Thank you for your sage advice. Mark
I am definitely going to go ahead after hearing from you! I am in London, England. Do you know if we are as advanced here? I seem to be getting feedback that recovery is far longer than yours. I am 57 but pretty fit and healthy (except for the damn HFS!). Mark
I read your post above to our US friend Mark and can tell you this........... Dr Sekula does seem to be 'the man' in the western world and his patients do seem to recover more quickly than some of us here at home. I have noticed that his incision seems to be smaller from the photos I've seen and I've also noticed that our US friends put far greater pressure on themselves to get back to work (possibly because they, like you, cannot absent themselves easily). Surgery with Dr Sekula would set you back over $100,000 whilst surgery with Nik Patel would cost around £17,000 at the Spire Hospital in Bristol. And, no, I am not on commission! There are members of the Facebook group who have had surgery in London with Mr Neil Kitchen and with Henry Marsh who has recently retired and has handed over to Mr Jones (I think). I am pretty sure that Romford also has someone experienced but can't remember his name. Here's a list of surgeons which members of the Facebook group have used, but please note that this is not a recommendation for any of them and it's always best to ask some really searching questions (I can give you a list!) before committing to any one of them:
Mr. Dev Bhattacharyya
Royal Hallamshire Hospital
Shropshire
Professor Garth Cruikshank
BMI The Priory Hospital
Birmingham
Mr. Laurence T Dunn
Institue of Neurological Sciences
Southern General Hospital
Glasgow, Scotland
Prof Paul Eldridge
Walton Centre for Neurology
Liverpool
Mr. Mansoor Foroughi
University of Sheffield
Sheffield
Mr. Timothy Jones (replaced Marsh) *
St George's Healthcare
London
Mr. Ramez Kirollos
Addenbrookes Hospital
Cambridge
Mr. Neil Kitchen
National Hospital of Neurology and Neurosurgery
London
Mr. Robert MacFarlane
Addenbrookes
Cambridge
Mr. Otto Major
Newcastle Royal Victoria Infirmary
Newcastle
Mr. Alessandro Paluzzi
Queen Elizabeth Hospital
Birmingham
Mr. Nik Patel
Southmead Hospital & Spire Hospital
Bristol
Lou Pobereskin
Derriford Hospital
Plymouth, Devon
Mr. Quigley
Belfast
Northern Ireland
Mr. Owen Sparrow
Spire Southampton Hospital
Southampton
Mr. Girish Vajramani
Spire Southampton Hospital
Southampton
Hi Mark, I've just sent you a list of UK surgeons but it seems to have to be moderated. Hopefully it will come through eventually.
Hi Roseann, thank you for that, If it doesn't show up could you just email to me directly ____ Written like that in case they block email addresses, That will fool them! :-)
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
I am not sure if it is advanced. I am 42 and in good health. Dr. Sekula performed 3 other MVD surgeries that day and in talking with the other patients , one with trigeminal myalgia, we all seemed to be feeling about the same. Within 24 hours of surgery we had all been up , walking and reported for hearing tests.
The other 3 patients I would say were an average of 10-15 years older than myself.
Congratulations! Will you be kind to let me know who did the surgery and where it was done?
Have sent info to your e-mail address Mark.
As the info has been emailed I have deleted the post by Roseann. Also, do not try to get around moderation otherwise your account may be deactivated. If you want to exchange contact details or pass information on and cannot wait for moderation then use the private message service.
Dear Moderator
I totally understand about e-mail addresses, but the information that I was sending to 'Marble' may well have been useful to other people on this forum and I am confused as to why it should need to be deleted. It was simply the names and hospitals of surgeons who I know to have performed MVD surgery in the UK. I attached a caveat about not seeing this as a recommendation and the need for individual research. I am a frequent contributor to this site and always try to abide by the rules. Sorry if I have inadvertently crossed any lines. If you are able to reinstate my list of surgeons then I should be grateful.
Ok it's been approved above.
Many thanks for your understanding and for reinstating my post.