Neurosurgeons who perform Microvascular Decompression Surgery?

I am due to have surgery in 3 weeks at addinbrooks hospital under mr kirollos think that spelt correctly. Is he good??

Hi Hailey

I can't speak with any personal knowledge, merely on what I have picked up on when reading various forums.  I have never even heard Mr Kirollos name mentioned (which I suppose is good news and bad news!) and so my advice to you would be to ask him some very specific questions about his experience of MVD surgery for HFS:  How often does he do this precise surgery?  For how many years has he been doing this precise surgery?  What is his percentage success rate?  What percentage instances of hearing loss?  Does he monitor auditory responses during surgery?  I would suggest that you should be wanting this surgeon to say that he does at least a couple of these surgeries per month and that he's been doing them for at least a couple of years, but preferably longer.  You would hope for success stats of at least 80% cure, with very very few instances of hearing loss (because he will be monitoring hearing during surgery).  If you don't feel confident in your surgeon then choose someone different to do your surgery.  I have heard of a Mr McFarlane at Addenbrookes but unfortunately the reports were not exactly encouraging.  This does not mean that Mr McF is a bad surgeon, simply that the few reports I've read have not been as positive as for other surgeons.

Do hope that all will go well for you.  Please let us know how you get on, very best wishes, Roseann

Thank you for your advice. He said that the most common problem would be a droop , but should resolve. Then they say all the other risks like stroke, hearing loss . I am so scared do you think I should have it done. On the other hand if all goes well and the spasm goes how fantastic it would be!! Who is a good surgeon around east Anglian area?

Oh gosh, I'm not sure I can answer these questions Hailey.  As you say, it is absolutely fantastic to be spasm-free but you need to give yourself the very best chance of this outcome by knowing as much as possible about the surgeon who will perform your surgery (and his success stats).  I was also petrified but went through with it in the end and am very grateful.  I used Nik Patel in Bristol (Southmead Hospital) - he is very experienced but still has some cases that are not totally straightforward.  My own surgery was thankfully problem-free.  I know a couple of people who have travelled from East Anglia to Bristol for their surgeries.  Here's something I wrote about surgery - hope it helps a bit:  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 surgery to the brain itself; 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. There is a list of surgeons who have done MVD surgery for group members in the FILES section – use this as a starting point, but do not treat it as a recommendation for any one 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.  Only about 30% of people will be spasm-free immediately after surgery, the other 50-60% may have to wait weeks or months for the nerve to heal and to become spasm-free.  Patience is a virtue!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. 

I wish you all the luck in the world in your decision making and in your outcome.  It would be great to know how it goes.

Thank you for you advice. I will let you know how it went.

One more question how long were you in hospital for. And how long have you been spasm free for?

Thank you

You're welcome Hailey.  I was in hospital for 5 days but could have come home after 4 if they had got my meds sorted sooner.  I had a very simple and uncomplicated time and didn't need to go to HDU (but many people do spend a night there).  I was taking day time naps for 3 weeks post surgery and had quite a few headaches, particularly in weeks 2-3 - these were well controlled by Co-codamol.  You will have good days and bad days in those early weeks and it can be two steps forward and one back.  I felt quite well after 3 weeks and almost normal after 6 weeks.  But, I really didn't recover full energy until 3 months after surgery - best not to go back to work too soon, or to have a phased return to work if you can.  Driving is very individual - some people drive after only 2 weeks but it was 6 for me because my neck was not very supple after the surgery.  One thing to look out for after surgery is a blinding headache (which does not respond to meds) and/or any clear liquid coming down nose - this can be a sign of a CSF leak and needs urgent medical attention to prevent infection setting in.  It only happens to a few people but it's worth being aware of the risk and knowing what to do.

I have now been spasm-free for 4 years.  I get very occasional flutters in my eye but these tend to be when I am tired or stressed or ill - they always go away again.  It is fantastic to be rid of this thing and I wish you all the luck in the world.

HI Hailey99089,

   I am thinking about doing this surgery with Dr.Christopher Bogaev.  

   Can you please let me know how your surgery went, successful , I hope.

   How long was the recovery? Did you  have headaches, dizziness etc...

   I hope you are Spasm free.  

  Appreciate any information you can give me. 

Hi Madulla, sorry to but into this conversation!  Just wanted to say that you might want to join the Facebook Hemifacial Spasm International Support Group where I know that others have had surgery with this surgeon.  All best wishes.

Thank You, I will join the support group.