MVD surgery 8 days ago

hi

really nice to read this, im 33 and have been suffering for the last 5 year with the spasms also headaches...surgery is there for me waiting to happen if i want it but the whole process like you mentioned loss of hearing as well as other difficulties really scares me, ive had botox before over a 3 month period but with no effect. i was told recentley by another specialist it took take up to 7 month to take affect...really not sure what to do as aparentley you have to wait a year after for the surgery once botox has been used, its like 2 steps forward and 1 step back. hope it all comes good for you and i hope im brave enough one bite the bullet and get this surgery done

sorry about awfull spelling mistakes, im suffering with the spasms as i type and concentration is really difficult

Hi Chris, I can fully appreciate your reluctance, at this stage, to opt for surgery. Like so many on the US support group website (hfs-assn.org), I think you just know when the time is right to consider surgery. I was hesitant for quite a long time, but when the twitches have become so frequent and severe that they have completely taken over my social life. Even though I am still having the spasms now 20 days post-surgery, I remain hopeful that they will disappear in due course, and I have no regrets about the surgery. I know that I will be wondering 'what if' had I not gone ahead.

PS. I had my surgery about 4 months after my last botox injections. The neurosurgeon does not think that this affects the outcome of the surgery.

Hello. I am so pleased that I have found your experience of the MVD operation at the NHNN hospital. I am a 58 year old lady also from North London and have been to the hospital and seen Mr M. I have had HFS for 12 years. It affects the right hand side of my face. I have been having 4 Botox injections around the eye and two into the Platysmal band down my neck . These used to be every 16 weeks but the last few years I have been having to have them every 12 weeks at the Royal Free Hospital .They have never actually stopped the spasms but they must take the edge off. I Have now decided to have the op at the NHNN and am in the process of seeing the surgeon again. I would be so grateful if you could tell me a couple of things. How was the stay at the NHNN? Only asking as I had an awful time at my local hospital CFarm when I had a Pulmonary Embolism in June 2010 that I am really worried about going into hospital again. How long was the op ? Did you get any side effects like spinal fluid leakage which I have been told can happen ? Were you told what the percentages were of the op being a sucess. Thankyou so much

Hello Harleygirl, I had my surgery on Tuesday morning and was discharged from hospital on Sunday afternoon that same week. This is my first stay in a hospital let alone having my first surgery! You can imagine how much I hesitated before deciding to go ahead, but once the decision was made, I did not look back. I was very well looked after at the hospital (with the exception of an agency nurse from hell one evening!) and feel that I was in safe hands. I don't know exactly how long the op lasted but would say 2-3 hours at a guess. I went to the op room at 8am and woke up in the recovery room around 1pm. I have read each and every one of the mvd diaries on the hfs association website, and all too familiar with the possible side effects. No nausea, loss of taste, csf leak, chipped teeth, sore throat, loss of hearing nor facial palsy, and no pain because the painkillers were working well. Some dizziness and tightness around the head were all I felt and that is all to be expected. I ate everything laid before me from that evening onwards. Also managed to walk around unaided from day 1. From the research I have done on the internet, the chances of success of this procedure was put at 93%. I was told differently by the surgeon but I think it is best for you to be told straight from the .... (no offence to the surgeon whom I have the utmost respect for!) I don't know if I can say that the surgery has been a complete success as the spasms are still there (I remain positive that they will disappear in due course) but as far as the op itself and the recovery process goes, it is as smooth as anyone can pray for! Thank you Mr K and all at the NHNN.

Hi,

I am 53yrs of age from Scotland, I had my MVD operation in Nov 2011, I still have my right side spasms, and I am very dissapointed they are still present.

I am hoping that through time they will go away, maybe nerve damage can take many months.

I go for a post op chat with my surgeon in mid Feb, so I'll wait and see what he says.

Are your spasms still present ? did you get any indication of how long it can take for full recovery ? hope you are well, and hope you get spasms free...

And I was very worried also about maybe loosing my hearing, but it remains ok, thankfully...

Hi Sean, thank you very much for your kind wishes and hope your spasms disappear too. I am only 3 weeks post-surgery, my follow up session with my surgeon is at the end of Feb. The registrar who saw me after the surgery told me that it may take up to 5-6 weeks to see if there are any improvements. However I have read that some took many months post-surgery to become spasm free. I noticed that for a couple of days since surgery, my left side spasms seem more intense especially around the mouth and neck area, followed by days when the spasms are less frequent and less intense. Are you back to full health now? (other than the spasms) At this stage, day 21, I just feel tightness around the incision wound, and slight dizziness when I move around, which I am sure can be controlled if I asked for medication. Leon

Hi YKL,

I'm more or less well now, my recovery was not the best as I took a wound infection the day I was home from hospital, that was not very nice, a weeks antibiotics and it was ok.

I still have no feeling around the skull area where the operation was, and that's 12 weeks now.

I did feel tired easy in the 1st month / 6 weeks, but slow but sure I got my energy back, so, if I can manage to get rid of the spasms I would be in heaven !!

As for your dizziness, a short course of anti sickness tabs should remedy that, don't wait, just ask your doc, there is no point feeling that way when a quick course of tabs will fix it mate.

The tightness around the incision will last for a few months at least, after all, it was major surgery, so it will take a bit of time.

Hi Sean, thank you very much for your advice about the dizziness, I shall make an appointment with my gp straight away.

It is also helpful to share your experience of the recovery process, I would describe the numbness around the skull akin to the feeling you get when you have been wearing a helmet for too long. And the skin around the incision feels like rhino skin!

All the best!

Leon

Leon,

Your description of the numbness around the wound area is spot on mate, we may never get the feeling back in that area !

Sean.

Hi Sean and Leon, It has been very useful reading your experiences of the MVD surgery as I'm in the process of being referred for this op. I'm very disappointed to hear you are not spasm free though. I've had HFS on the left side of my face for over 12 years, the last 5 or 6 being the worst. I too have been down the Botox road - which I found pretty useless to be honest. It's got to the stage where I avoid social situations because of the embarassment. However, I find I can be spasm free for quite some time if I do not "use" my face to speak, smile, etc. I was pleased to hear you didn't have too bad a time after the surgery and were well looked after - no loss of hearing etc. I do hope your spasms go away in the near future. Sean, would you have the op again if the surgeon suggested it?