MVD surgery 8 days ago

Great to hear Roseann has finally had the operation, and that she's doing well! Looking forward to hearing her news! Chris, I am wondering how your balance is since losing your hearing, or whether you had any improvement in hearing? I'm still far from feeling 'Normal' at least when walking, and stagger about still quite a bit. Saw a hearing balance specialist who gave me brain retraining exercises but its slow progress. I've been told hearing is unlikely to return now. The tinnitus drives me mad, but still reminding myself how irritating those spasms were!!

Hi adnama

Balance is good after 4 month, keep having a little stumble out of no where though, its strange as I feel OK, my head still a little fuzzy on the top left hand side, bit like pins and needles.. Not concerned though.. As for the hearing no luck in that department, got used to it though I only notice when someone is speaking close to me.. I've had the odd spasm, suffered yesterday actually but overall I'd say I'm 80% better than before the op.. After reading comments on the Facebook page I'm optimistic about success further down the line.. Hang in there

How long since your op

Chris, Thanks for your reply, I had my op on 4 march so still early days. My head still feels tight and numb but I guess I need to wait a while yet. Looking forward to getting back to normal. Have you been in a plane since your op, I will be doing this in a couple of weeks, wondering how it will feel in my ears! Sorry your spasms have come back a bit but 80% is pretty good. Best wishes amanda

Hi Amanda,

It is great to hear that you remain free from spasms since surgery and sorry that you have lost hearing in one ear (a comparatively small price to pay?).

I suffered with dizziness for about 3 weeks before it went away on its own without medication. I have suffered from labrynthitis years ago and also shown how to do the set of 20 exercises to correct the sense of balance. Like you, I find them tedious and totally useless. Maybe I did not persevere long enough to get the benefit. If it is indeed labrynthitis (or BPPV) that is affecting you, it may take a few months to heal. I find that the dizziness is worst when crossing the road, turning the head right/left/right quickly!

The numbness on the skull will last several months after surgery. Even now, 17 months later, I can still feel a little tightness on the incision scar. Nothing to worry about I was told.

kind regards

Leon

Hello my friends and thank you for all your kind thoughts and support after my MVD at Frenchay Hospital, Bristol, UK with Mr Nik Patel on Thurs last 20th June. Allelujah, I'm home from hospital today and feeling pretty good, with a little help from my steroid and analgaesic friends. Here's my story in brief which I hope helps others. First mistake was going into 15 bedded ward the night before the operation - got no sleep and if I had had a suitcase and a taxi number I would have been out of there before dawn - thankfully my bed neighbour was a resilient girl who told me to 'man up'! Lucky in being first on list, Nik Patel came to see me and we struck a deal that he would do nothing if it put my life at risk - GO Nik. Came round feeling fab and feeling nothing - apparently I had been burbling about the attractive anaesthetist on my way back to sanity............. oh errrrrrr! Back to ward by 13.00, 4.5 hours after going down. Didn't need HDU so all looked good. Tried to eat and drink - very very sick and dizzy on mobilising for rest of day - meant I couldn't keep down any meds but still no pain as such. Nursing staff under enormous pressure that night so another one without a wink - got very tired and a bit aggressive too, naughty me. But please be aware that next year the Frenchay moves to a new (non World War II) site and 80% of patients will have private rooms, so don't desert this hospital where the care is magnificent in the main. So, back to Saturday - pain increasing in site of wound, still taking x 6 steroids, plus heavy doses of codeine and paracetamol, plus injection in stomach to prevent blood clots, plus antibiotic for small UTI that I developed day before surgery! Packed full of pills I have felt more of less OK most of the time, so don't fear pain which is, in the main, dealable with. OH, the main news of course..... Mr Patel came to see me soon after the operation and told me that whilst it had 'gone well', he could not be at all sure of the result. He felt that he had affected some improvement at upper end of the nerve where the loop existed, but it would have been dangerous and triggered potential side effects if he had gone deeper down into the brain stem - apparently there was an artery sitting very close to facial nerve and this could not safely be touched. I've had many less spasms since the op but those I have had have been quite protracted. Time will tell how it all works out, but at least I know that I've given myself the best possible chance of recovery with a surgeon who is straight, honest and put my safety first. So far, I have had none of the side effects which worried me. I am mobilising well with no dizziness and have no hearing loss (a bit of hearing loss would have been good on that ward!). My blood pressure went very low after vomiting on first day but all of that is already history. I'm writing this from the quiet of my own bedroom and am SO glad that it's all over and I hopefully have a smiley better future to look forward to. Photos will follow. Lots of staples to come out this coming Tuesday - just hope our rural practice nurse has dealt with head staples before................ Stay positive you all, it wasn't a walk in the park but I'm home, alive and happy (on my pills!). Thanks for all your love and positivity and sorry I wasn't brave enough to forewarn you of my surgery date - it's a me thing. x

6 minutes ago

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Allelujah! Hail Mary! Rejoice!

It's good to hear that you are doing well so soon after surgery. Thank you very much for giving us a detailed account of your personal mvd surgery experience, very useful to all contemplating surgery. Perhaps you could use your own advice previously and repost this on a new thread as it is very likely to be lost on this marathon thread as you put it.

Have a very well-deserved rest and look forward to regular updates on your recovery.

best wishes,

Leon

All the very best to you. Time is a great healer and i am sure over the next few weeks you will see massive improvements.

Hi Everyone, not been on here for a while but just back from seeing my consultant as the spasms are

getting worse.

He now want's me to try Botox. When I asked about an operation he said that I couldn't get one as the

affected nerve is the main one at the base of the brain stem (not the usual one at the ear) and no

neurosurgeon would carry out an operation on me as it was far too dangerous. I am really upset about this

as I thought at least if it got really bad then I would have that option. Does anyone else have the same nerve affected?

Hi all

A quick update on Day 6 post surgery........................... I had the staples out (20 of the little devils) yesterday and it was more or less painless thank goodness. I'm home and resting lots and feel OK other than a lot of discomfort and swelling around the incision site - this is apparently quite normal and will go down when it's good and ready. Guess we have to remember that it's a 4-hour operation and quite a shock to the body as a whole. My spasms are massively reduced, but, as I said, I am probably not a candidate for a full recovery due to the proximity of the artery to the facial nerve. (This might be of interest to you Nuggy and my view is that it's worth getting a second opinion here.)

I've noticed from others who have had MVD that the euphoric mood seems to go down a bit on day 6 or 7 - this is definitely the case for me. I've gotten over the massive relief of it being over and am now dealing with the day to day aches and pains which are entirely normal post op. But, I can safely say that it was nothing like as bad as I had feared and I am still ecstatic that I eventually found the courage to go through with it. I'm not feeling any way smug because I know how hard it is to decide upon surgery and to see it through, given all the risks that the doctors insist on telling us about. When the doctor came to consent me for the op I told him I wanted to sign his form without him giving me any further explanation of the risks, and thankfully he went along with this on the basis that I had explored the risks fully already and was realistic. And allelujah, I have come out the other side with no major side effects at all. I was lucky to have a surgeon who was cautious as well as a bit of the luck of the draw as well.

Thanks for all good wishes, I'll keep you posted of anything else I think of which might be helpful. love Roseann

It seems that we will soon be able to access surgeon's operations success rates. If so that is very helpful to all of us.

http://www.bbc.co.uk/news/health-23079571

Thanks for this Leon - it will be useful in identifying those who do lots of MVD surgery and helpful to all those who are in the early stages of considering MVD. Just hope they don't quote percentages rather than actual numbers of operations - these can be hugely misleading, especially if a surgeon has done one operation and it's been successful! I reckon our forums, here and on Facebook, are the best way to get good information about particular hospitals and surgeons, and also the overall experience.

I'm now on Day 8 and having a slightly more difficult times as the drugs get out of the system and the body carries on its healing process. Nothing awful, just nagging headaches most of the time (which can be dealt with by Paracetamol) and some eye ache too. I've posted a photo of my wound on the Facebook site if anyone is interested. It's not too scary and shows how well the body heals in only a week. I'm sure there's still a lot of healing to be done inside and am giving myself lectures on being patient. I don't always listen to myself unfortunately..........

The twitches continue to be less frequent and only troublesome and prolonged in emotional situations (laughter unfortunately). But heaps heaps better and entirely livable with. Again, time will tell how it all shakes down and I'm not counting any chickens just yet.

Take care y'all and look forward to smiling again one day. Roseann x

Hello all

It's now Day 11 post surgery for me and I'm pleased to say that I'm getting stronger and more pain-free every day. The neck aches if I stand up for too long or walk too far, but I'm up and about and getting to be less obsessed with how I'm feeling. I'd say that I'm currently running at about half my normal pace but I feel an improvement each day. Today was the first without regular paracetamol, so quite a milestone. The headaches have almost gone and it's just the wound that gives a little grief here and there. The wound is healing beautifully, so I have much to be grateful for.

As for the spams.............. I am definitely not spasm free but my mood is altogether lighter and my eyes are less light sensitive too. The spasms are much less frequent but are more prolonged than previously, so not a bad deal all round. It's unfortunate that laughter seems to trigger the spasms so I shall have to continue to be a grumpy old git.

Hope you're all in good shape. If anyone wants to know more about my experience then I'll leave you to get in touch from hereon. Take care y'all, Roseann

Hallo everybody. I read some of the post on mvd here. I did my in 2010. Spasm has subsided. I am left with hearing loss, dizziness, fatigue, sore throat, soar tongue (brushing dioes not help ) headaches. About 3 months ago I went to the hospital because of these headaches and dizziness, sometimes it feels that my brain is being stired, You know like being blown up, Like being mixed with alcohol. It is a feeling I do not know how to describe properly. Anyway the docters at this hospital diagonised brigde angle tumor because of a white fleck found inside of this area. They contacted the surgeon that did the operation in 2010. He said it not a brigde tumor but that my complains are typical after effects of an mvd op.

I have an appointment with him this january. I want to ask if the white fleck is an operation scare. Ofcourse I will be very glad if it is not a tumor. I hope he is right. Nevertheless, I will like to know if any of you have this white thing in the head as a result of the mvd op. Thanks a lot.

Hi 'Thankx', sorry I don't know your real name. I am so sorry to hear of these after effects of surgery. I'm a member of x 3 groups (two are on Facebook under the heading Hemifacial Spasm International Support Group) and have never heard of the 'white fleck'. I guess you have had a further MRI scan which has shown this up? Your side effects do sound very severe and I so hope that you will find a way of getting some relief. If it is not a personal question, may I ask where you had surgery? Wishing you well, Roseann.

I just looked up 'bridge angle tumor' and found this information quite good. If you should have this condition then I guess the good news is that it is not cancer and can be treated. But do hope that your surgeon is right in his or her diagnosis of your symptoms.

http://slu.adam.com/content.aspx?productId=117&pid=1&gid=000778

Emis Moderator comment: there is also a leaflet on this condition in patient here https://patient.info/health/Acoustic-Neuroma.htm