I am due to have surgery for hemifacial spasm. Extremely worried due to all the risks.
My surgeon said there is a risk of death!! Stroke! Also facial droop. Really want to have the surgery to stop the spasm, but so worried about all the thing that could go wrong. I am 39 with 3 children, I really don't want to leave them without a mum!! Can anyone help?
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Hi Hailey, I can certainly understand your worries and went through similar myself before my successful and uncomplicated surgery. I wrote something about surgery, based on my knowledge and experience and will copy it here for you. I hope it helps.
Surgery – decisions, risks and recovery – a simple explanation based on the experience of group members (who are not medics)
HFS is a debilitating and disempowering condition. It can sap confidence and make even the most outgoing person become withdrawn. It punches well above its physical weight and most of us have been desperate for a cure at some time in our HFS journey. There is only one potential cure for HFS and unfortunately this is surgery. Yes, which one of us ever thought that we might willingly have our skull opened up? Certainly not me! If you don’t feel frightened at the prospect then you are in a minority.
Members of this group appreciate how frightening the thought of surgery can be; we also understand that surgery isn’t available to everyone in the world. Contrary to what many believe, this is not brain surgery; it is a surgical procedure to the nerves at the base of the skull. It involves the surgeon separating the vein or artery from the facial nerve which is being compressed. This is usually done by placing Teflon threads between the vein and the nerve. It is a very skilled procedure, but, in the right hands, the success rate is very good.
If surgery is available to you then it's worth careful consideration and it’s best to gather all the information you can before you make up your mind. Seeing a neurosurgeon does not mean you are committing to surgery – you are just arming yourself with the facts with which to make your decision. If you consider that the time is right for you to consider surgery then the first thing is to find the RIGHT surgeon - local is not always best. Never be afraid to reach out to other group members who may be able to report their personal experiences of a particular surgeon.
Your proposed surgeon should be able to boast a success rate of between 80-95% cure, with minimal instances of hearing loss. He or she also needs to have done a lot of these surgeries (Microvascular decompression – MVD - specifically for HFS). We know that all surgeons have to start somewhere but maybe not with you! Look for a surgeon who does at least one or two MVD for HFS surgeries per month if you can.
Few surgeons publish their success statistics so it’s a matter of asking him or her some very direct questions about experience, cure rates, and instances of hearing loss. Never be afraid of doing this; your surgeon should have nothing to hide!
The most common side effects of surgery are: nausea and dizziness immediately after the surgery and almost certainly some headaches in the first few days and weeks. Some people also have taste and/or swallow problems for a little while. No two experiences are exactly the same and so you have to be prepared for some discomfort or setbacks, particularly in the first 2-3 weeks. About 5-10% of people may suffer from Bell's Palsy at the 7-14 day point post-surgery - this does get better but it can take weeks or even months. One sided hearing loss used to be very common, but with modern methods it is much less so - it's important that the surgeon monitors hearing during surgery. Some people (5%?) have spinal fluid leakage after surgery and may need either steroids or a further surgery to correct this. A very small number of people are left with permanent balance problems or tinnitus. There are of course all the other major risks which any surgery entails.
Most people find that it takes between 2-6 weeks to feel well after surgery and it may take up to 3 months to be at full energy levels – surgery will almost certainly knock the stuffing out of you for a while.If you are considering surgery then reach out to the group and ask about the best surgeons in your country/state/area. Do not be afraid to put a surgeon’s name on the forum – replies will be honest and respectful.
It's also important to remember that only about 30% of people wake up spasm free and stay that way. The other 50-60% take weeks, months or even up to 18 months to be spasm-free. Nerves take time to heal so it is not realistic to expect instant recovery in all cases. I was lucky and my spasms went away for good after 6 weeks, but others have waited a lot longer. The most important thing is that spasms are improved after surgery - this is a very positive sign.
Hi Hailey I would like to know what happens?do you have the surgery done? I have been suffering with this for 6 years only treament Botox every 3 to 4 month but I'm thinking surgery . please update.
Hi Roseann,
Thank you for this detailed analysis .
Please can you recommend a neurosurgeon to carry out MVD for specifically HFS whom has a a very good track successful record.
Hi oloyede 13222, can you please tell me where in the world you are living? Once I know this I will try to help you with suggestions of a surgeon (if I know of any). Thanks.
Hi Roseann,
I live in Abuja, Nigeria but open to travel as long as i get a very good health care surgery for HFS
Hi again Oloyede
I'm very sorry but don't know the names of any surgeons in Africa, though I do know that a few people have had surgery in South Africa. You may be able to find the names of these surgeons if you sign up to the Facebook Hemifacial Spasm International Support Group. In terms of the best surgeons in the world...... I don't know them all by any means but those who get excellent reviews are: Dr Kaufmann in Winnipeg, Canada, Dr Sekula in Pittsburgh, USA and Nik Patel in Bristol, UK. If you need to pay privately then you are probably looking at in excess of $100,000 in the USA and around $40,000 in the UK. Hope this helps. There are also surgeons in South Korea, China and other European countries who perform these surgeries with success. My knowledge is by no means complete.
Thank you for info.