MVD surgery 8 days ago

Hi all

Leon: Fantastic to hear that you're seeing some progress - fingers crossed that it may last.

Sean: So sorry that they've found another loop - that has to be more than bad luck after going through MVD surgery - really really hope that it's second time lucky. And thanks for your words of encouragement to all of us nearly first timers. What you say about quality of life/no quality of life with HFS is so true.

Chris: Great that you're feeling a bit more positive about being in safe hands. It's one hell of a decision to go for surgery and not something to be taken in the least lightly. How did your ESA reassessment turn out by the way?

Me? In complete remission again. It's been two weeks now without a hint of a spasm. I seem to be quite abnormal (and lucky) in getting these remissions but know that it could come back roaring like a lion at any minute. This must be my 5th period of complete remission in the 8 years I've had it. The only change in my normal pattern is that I've started on a statin and am taking it in the day rather than at night. I shall not proceed with surgery if I am in remission, so I feel a bit like 'dice woman'!

All best to you all and keep us posted on progress eh.

Hi fellow HFS sufferers. Sorry I've not been posting for a while - feeling a bit guilty about chickening out of the MVD op after being so well treated at my consultation at the Walton Centre in Liverpool. I was put into contact with a lady who had the op there and is now completely spasm free, although she did have a different problem - trigeminal neuralgia I think it's called - and she was in a lot of pain and on medication, which thankfully I'm not.. Anyhow, my excuse is that the spasms seemed to ease off at the time, but they'recertainly back now. If I was going to have the op I would definitely go to the Walton Centre, they appear to have a very good success rate and are listed second in the country after the NHNN in London.

Leon - how are you now? Hope the op has finally proved a success.

Sean - you deserve success this time around for bravery alone.

Roseann - do you think the statins are the reason your spasms have gone into remission? If so, I'll be straight down to the GP for a prescription.

Best wishes to you all.

Sylvia

Hi Sylvia,

Good to hear from you and thank you very much for your kind wishes. Exactly on week 16 post-op today, spasms are still there but noticeably lessened. There were a couple of days last week when my progress seems to have gone into reverse, fortunately not for long. I will give it another 3 months before doubting if the surgery was a success. The numbness on the skull has all but disappeared now, still very thankful for how speedy the recovery has been. It is good that you have confidence in your surgeon, I find that helps to allay much of the pre-op anxieties.

Wishing you all the very best!

regards

Leon

Hi again Sylvia and Leon

So pleased that you're remaining hopeful Leon. I'm positive that tiredness and stress cause the spasms to worsen, so keep getting good nights' sleep and duck the stress wherever you can eh.

And Sylvia, I totally understand where you are at, because I am in the same place! Only yesterday I rang the surgeon's secretary to ask to be taken off the MVD operating list. I did this because I am in total remission at present and I have no idea whether the statins have played a part in this or not - probably not, but I shall soon know because I have had to stop taking them because of pain in my muscles (what a wreck I am). I doubt that my remission will be permanent but I am so enjoying being normal and being able to laugh and smile again - bliss.

I may well be begging the surgeon to put me back on the list, but, for the timebeing, the time does not feel right for surgery. But, all the very best to everyone and hope we'll all see some light up ahead, particularly Sean and Leon.

All best, Roseann

Hi Roseann,

You are absolutely right - tiredness and stress do make the spasms worst, as well as being outdoors on a gusty day!

I would have cancelled the mvd surgery too, had I got these long spells of remission, or had the botox injections worked sometimes. Surgery is the last resort unless its success rate is closer to 100%.

Sylvia, I am pretty sure that you are only joking about taking statins! Your GP will only prescribe statins if you have high level of LDL cholesterol. Besides it will only be prescribed for a limited period because of its severe side effects.

Keep posting! we may reach 100 posts before long, surely a record (by a long way) on this website!!

Leon

Hi all my friends on this thread, and thanks Sylvia for your words.

I can understand the apprehension some of you guys have, sure I was the same at first, but you must grab the bull by the horns, and go for surgery, otherwise, this will be you for ever and the day !! twitching, avoiding people and situations...

I know it's a big decision, be strong, be positive, and hey, just think of not having this problem again !! heaven indeed..

I'm waiting for my 2nd mvd as some of you will have read, let's hope it works this time, there was a 2nd loop adjacent to where the surgeon put the sponge in the 1st op, pity he didn't notice it then !! hey ho..however my friends, I wish you all success in what ever path you take, good luck, I'll keep you posted re my next op...bye for now...

Sean.

Hi Sean,

Really admire your strength of character and I am sure you don't need any further encouragement with mvd #2. For what it's worth, I have counted over 70 reported mvd #2 on the hfs assn website and more than 50 were successful. Surely that is a high success rate and I noted that the complications were no worst than mvd #1. Hope you get scheduled very soon, and of course a successful outcome.

Leon

Hi friends, I had no idea statins were so dangerous - I believe they can be bought over the counter without a prescription? Anyway, it's back to the drawing board to try and find another solution.

Try to keep smiling.

Sylvia

Hi Leon,

Thanks mate.

Sean.

Hi everyone,

I have just been diagnosed with HFS today after 10 months of progressive twitching to the left side of my face. The consultant has given me a letter for my GP and recommends that I take anti-convulsion tablets ( don't know what they are yet ). He thought they would be better for me than Botox as my HFS starts with a pounding and noise in my ear followed by twitching from my eye to my chin and apparently Botox wouldn't help my ear. I have looked at videos on You Tube and I am really upset at how it will develop. I had an MRI done and the consultant said that because of where the blood vessel is touching the nerve surgery probably wouldn't be an option so I don't have the hope of getting rid of it.

Glad to have found this forum.

Esther

Hi Esther - sorry to hear about your experience trying to get help for HFS. The anti-convulsion tablets sound like an epilepsy drug. My consultant said they would not help me when I asked about them. (I even asked about cannabis medication, which can actually be prescribed in my NHS area, but was told this would not help either.) I've tried botox, acupuncture, herbal medication, massage and exercise - all useless I'm afraid. If you decide to go down the surgery route, I think you really need to go to a neurology centre which specialises in this sort of surgery rather than a general hospital. I don't know where you live but, as I've said before, I would recommend the Walton Centre in Liverpool. The surgeon there is Mr Eldridge, who appears to have a good success rate, but I have been unable to find a league table of success rates for surgeons in this field. I did find one some time ago but it has since disappeared from the net.

Anyhow Esther, welcome to our little forum and good wishes for your search for help.

Sylvia

Hi Esther,

Welcome to the forum!

I have researched quite extensively on this subject and it is first time that I heard surgery may not be an option if the blood vessel loops round the facial nerve in a certain position (but what do I know!). I would certainly seek a second opinion, like Sylvia suggested, from a surgeon who has more experience with mvd surgeries. I wonder if the mri files may be transferred to another hospital, without you going through the hassle of having another done. Through my own experience (and others), botox will only work for so long before losing its effectiveness, so I hope you don't waste your time down this route.

Best wishes

Leon

Thanks Leon and Sylvia

I live 20 miles from Glasgow and I don't know yet what drug is being prescribed. Sealed letter to my GP. I pick up prescription on Friday. Have you both tried drugs and do they work at all?

Esther

Hi Esther,

I have not tried any oral medications for hfs. Have had botox treatment for just over 3 years but they stopped working for me after 2 years.

do let us know if you have any other queries.

all the best!

Leon

Hi Esther and welcome,

I can't understand why your surgeon said that !!! this is why you get this operation, the blood vessel pressing against the nerve causes the spasms !! I have had an MVD, which I might add, failed, and waiting op no 2, as for anti convulsion drug ! well, it wouldn't be me.

I also live 20 miles from Glasgow, I'm wondering who your consultant was, Glasgow/ Edinburgh ?

Get a 2nd opinion, demand one, and make sure it is someone who has had experience with HFS.

Good luck

ps if we can help on this forum, we will, a great bunch.

Sean.