MVD surgery 8 days ago

Hi Sean

I have private health care through work and my GP sent me to Ross Hall Hospital in Glasgow.

The MRI scan was done last year when I was referred originally - at that time I only had a twitch in my eye and numbness on the left side of my mouth. The consultant said that the MRI was clear - the only thing showing was a loop on a blood vessel but it wasn't touching the facial nerve. He told me it could be viral and if I still had it a year later then I would just have to live with it.

A couple of months ago it got much worse, I started searching the web and Hemifacial Spasm seemed to tick all the boxes. I went back to my GP but didn't mention HFS. He said he would refer me back to the consultant at Ross Hall and to take a video of my face twitching.

I saw him on Tuesday and he said it was HFS. when I asked about the options available he said an op wasn't a good idea because of where the nerve and blood vessel were touching.

I am going to try the drugs just now and see what happens.

Thanks for your reply

Esther

Having a suspicious mind, I wonder if they are just trying to avoid the cost of an op ?? usually around £15,000 privately, as it seems to me you should be a candidate for surgery, however, you are your own boss, and it may work, hope so for your sake.

Cheers Esther.

Sean.

Hi Esther and all

Welcome to this really useful forum Esther and commiserations on joining this elite club that we'd all rather not be a member of!

I'll echo what others have said and recommend that you go to see a neurosurgeon who has experience of HFS. I'll also add my tuppence worth to the anticonvulsant drug argument because I have taken them. I was prescribed them by a consultant with little expertise in HFS and I think the name was carbomazipine or something similar. When I went to see Professor Hugh Coakham (who I believe has the most experience on offer and is well regarded) he assured me in writing that anticonvulsant drugs are known NOT to be helpful to HFS. I became very depressed on the anticonvulsant and so was relieved to boot it into touch.

I am fortunate in still being in complete remission, but I do not kid myself that I have seen the last of this 8 year problem - I'm just odd! I've also tried Botox but it didn't work for me - just made one side of my face completely paralysed and made communication even harder than with the spasm. But, it works for some I know.

Very best wishes to everyone, cheers, Roseann

Hi Roseann

Thanks for your comments, I will bear them in mind. When you say you are in complete remission, what do you mean? Have you had surgery?

Esther

Hi Esther

When I say that I am in remission I mean the spasms and the twitching have completely disappeared. Over the 8 years that I've had this condition it has done this about 5 times, sometimes for a couple of weeks and sometimes for several months. My consultant in Bristol describes me as 'atypical' but is certain that I have HFS. I can't identify any real reason why the spasms should disappear because I have the arterial loop which we all seem to have. I am on a waiting list for surgery (haven't had any surgery before) but can't justify having the operation when I am in complete remission. It's a 'wait and see' job for me, but, because of my history, I am realistic in expecting the spasms back at any time now. But, fingers firmly crossed....

All the very best with your thoughts and consultations, Roseann

Hi Esther,

If you have the time, do read the other discussion threads re-HFS / MVD on this website. Many sufferers have shared their experiences with prescribed drugs, botox injections and mvd surgeries, including 2 very successful ones whereby the patients woke up from surgery SPASM-FREE!

And the hfs association website is very informative.

regards

Thanks everyone for your comments, I will certainly be reading all I can on HFS.

Regards

hi nuggy

sorry to hear about you expriance, just like all of us discovering you have hfs is like being kicked while your down...regarding your post about being told you cant be operated on because the nerve is touching the blood vessel well thats the whole idea of the op which is to seperate the 2 so you have been given false information there im afraid, i was diagnosed with the mri scan 2 years ago,was refered to a surgeon in my home town of sheffield and offered to do the operation staight away..this is all on the nhs as well so no costs involved..only now have i plucked up the courage to go through with it as after trying everything else from botox to epelepsy medication nothing has seemed to work for me, i was told from the begining though that these were not a cure only to help calm it down..dont live your life thinking nothing can be because the operation is available, i dont know where your from but if you want any help i can give you names of surgeons in sheffield who you can wright to...

best of luck

after reading your posts it sounds like no one want to take responsibility for the operation, my surgeon was like yes i can do it, there are risks and it might not work ect but i could tell straight away he was fully confident that he could it...find other hospitals even a new doctor if thats what it takes...i saw 3 doctors who all didnt have a clue before the 4th doctor refered me

HI Esther and all - I fear Sean is right about this being a money saving cop-out. My first MRI scan showed nothing was wrong but the second done at the neurology centre with the dye injection showed the problem clearly. I really think in this instance you should go through the NHS system, I can't fault them. I too have been prescribed drugs in the past. The first was an anti-depressant the name of which I can't remember, and last year was prescribed Tegretol Retard - neither worked of course and the latter made me function like a zombie! My HFS can go into remission for short times each day. A good trick which works for me is to stop and completely relax my face for a few seconds - this often stops the spasms. But it's a nuisance to say the least. Also, I find that the worse the spasms are in the morning, the less frequent they are for the rest of the day. Has anyone else noticed this?

Sorry if all our information seems to be doom and gloom!

Try to keep cheerful.

Sylvia

Hi Chris,

You are spot on with your impression of the surgeon at the consultation! In general, they downplay the chances of success and concentrate on detailing the things that can go wrong - loss of hearing, bell's palsy, csf leak etc. I gained a lot of confidence in my surgeon after the professor in charge of the botox clinic hinted to me that Mr K has a high rate of success with MVD surgeries, and also through reading other patients experiences on the internet.

I think you may have slightly misread Nuggy's (Esther's) situation. She mentioned that it is due to the position of contact between the blood vessel and nerve, that her surgeon advised against surgery. Is the point of contact at the top, middle, bottom end of the nerve, or too close to another nerve? I have not read anywhere (yet) that this makes a difference. Someone on hfs-assn said that she had 8 - 10 pads inserted against the usual 3 - 4! so I can imagine there are probably touching at several points along the facial nerve.

Hi Sylvia,

I was experiencing more or less the same as yourself about the spasms before my surgery. They don't occur throughout the day but yes, more frequent in the morning it seems. After surgery, I find that I am able to stop the spasms more easily by looking up and relaxing the jaw area (probably doesn't make much sense unless you experience this personally!)

Kind regards

Leon

Hi friends,

I have come to the conclusion, through lots of research, that Prof Coakham of Bristol Spire Hospital, is thee main man for this surgery, he is 67yrs of age now, but still works in surgery, this HFS being his field, he does not do NHS work now, so it would be as a private patient, unless your healthboard can't provide a surgeon for this op, then they may refer you, but it's all about money ! but they have to be able to supply a surgeon for you, so be sure the surgeon has done this many times before you let him operate on yourself.

Cheers for now folks.

Sean.

Hi again everyone

Just following on from Sean's post above................... I did the same research and came up with Prof Coakham as the main man for HFS. I went to see him privately and he quoted me £12,000-£14,000 for him to do the operation privately. As I couldn't afford this he suggested that I might like to be referred to Mr Nik Patel who is the Senior Neurologist at the Frenchay Hospital in Bristol and who, I believe, was trained by Prof Coakham. I do not live in the Bristol area but my GP was quite happy to refer me to Mr Patel on the NHS. I saw him in January this year and he put me on his waiting list for surgery (the wait being approx. 4 months). Anyway, hope this is helpful. As I've already posted, I have decided to wait a while for the op because I am currently in complete remission from the spasms, allelujah!

All best, Roseann

Hi,I have suffered with hemifacial spasm for almost 6 years.one hospital told me it was because I had no back teeth,So I paid out for false teeth. But at last I got referred

to Atkinson Morley Hospital in Tooting. London.

I had a microvascular decompression op 3 weeks ago.

I woke up completely free of any twitching.Its Heaven.althoughI have almost lost all my hearing in the left ear.I may get it back or I may not.

I have another ear.Its got to be better than the twitching I suffered from.

I was planning to go back to work after 2 weeks,But won't be returning for another week.As my job is minibus driver.So I plan to be sure before I go back,that i am fit and well.

I tried Botox twice before the op.what a waste of time,and I couldnt think of living the rest of my life being injected every 2 months.

So I don't regret having the op.so good luck to all.

(Posted by suewithout on 17 July 2010 on the thread ‘HFS and MVD‘ started by JackieH)

Hi

I had MVD surgery in Leeds in Dec 2010 and it is the best thing I

ever did!!

I had suffered from Hemifacial spasm for nearly 6 years prior to this and it really was the bain of my life!

The very thought of having my photo taken sent me into a panic and I constantly covered my face with my hand.

I fully understand how you feel....

The surgery was a complete success and despite the first 2 days

of feeling really groggy and sick, I had NO PAIN at all afterwards as the wound was numbed.

I was in hospital for 5 days and had the best care from the consultant. I was off work 8 weeks to recover and I can honestly say it has changed my life.

I am much more my old cheery self and have now had umpteen photos taken........the change is unbelievable.

I no longer have ANY spasms or twitches and my smile is back to normal!

I wish you all the best whatever you decide but I would certainly encourage you to have it.....it's definatly worth it.

Linda

(posted by loobyloo59 on 8 Feb 2012 on the thread ‘Remitting Hemifacial Spasm - surgery or not?’ started by Roseann)

Hi there, In reply to the last poster. I've now gone through the MVD with Prof. *****, Bristol. Its 10,000 privately or if you want it doing on the NHS I'd get in touch with Prof ******via his website and ask him for a good NHS surgeon in Bristol.

Post surgery I was twitch free altogether but now get the odd flicker in the eyelid when eating or brushing my teeth.

Its a shame there isn't a British version of the hfs website.

My condition is much much improved and I'm just waiting to see if it disappears altogether which I'm hoping it will.

You may struggle with balance and potentially swallowing food for the first week or so but after that you should make a good recovery.

There was an article in the Mail on Sunday about me the other week too at the request of the surgeon. More people should know that MVD is a viable option, but something thats needs careful thought and consideration.

Good luck.

CW

(posted by guest on 16 Jan 2010 on the thread ‘HFS and MVD’ started by JackieH)

Hi again everyone

Just picked up the prescription the consultant gave me and it is Tegretol. Has anyone been prescribed this and was it helpful?

I don't want to start taking it yet as I would have liked to talk it over with my GP but I can't get an appointment for another two weeks.

Thanks.

Esther