MVD surgery 8 days ago

Hi Jeffina and Sylvia

Jeffina - Sorry to hear about your very painful condition which requires the same treatment as we HFS folk. I am also under Nik Patel in Bristol and so shall be very interested to hear what you decide. My surgery should take place in May, if everything goes to plan and I don't chicken out! I don't have any of the same symptoms as you in terms of spine and jaw. I think Mr Patel told me that he treats a lot of people with your condition and trigeminal neuralgia which are both hideously painful conditions, also that the operation is the same as for hfs. All the very best with you decision, and please let me know if you have the surgery before I do. I am wondering if you have managed to get any very clear risk assessment from Mr Patel - I asked for risks tailored to my age and pre-existing condition but he hasn't yet provided them.

Sylvia - Hi again. My spasms are also on the right side and as we've discussed before, I remain quite petrified of the surgery, in spite of the encouragement from our friends on this forum. But, as things stand, I am minded to go ahead because life is pretty difficult and my husband is fed up with me being as I am (though he doesn't exactly say so!!). We could have conditions which are much worse, but this one is bad enough for me, coward that I am. Let's remain in touch and see which one of us succumbs to the operation first...... Good luck with your decision - I know how hard it is to balance the 'what ifs' with the possible benefits. Tossing a coin is probably our best option eh!

All best to you both, Roseann

Sorry, I meant to add that I get Excedrin Extra Strength tablets from America where they are widely available in Costco and other drug stores. Unfortunately they don't ship them so it's a case of finding someone who is travelling that way. If anyone wants to try a few then I can send you some when my next consignment arrives (any day now). Heck, I'm a drug dealer without knowing it! But, not for profit of course. Send me a private message with your address if you want to give them a try - they are just a common headache tablet in America, nothing sinister. But, please look them up for yourself before trying them - I don't want any law suits! Cheers, Roseann

Hi Roseann

Thanks for that, I will check those tablets out, but I don't want to get you into any trouble regarding supplying them to me. Will get back to you by private message.

X

Hi Roseann,

"Hideously painful", yep that's about right!

Must admit I was in total shock when I finally got the diagnosis as it's taken me almost 5 years to get to that point but we did discuss some of the risks in my appointment in a general way but I don't know what my personal risks would be (I have an under-active thyroid for example) as he asked me to go away and think about my decision and I have also chickened out up until this point when I am coming round to the idea.... and then changing my mind again!

I am not on any meds as cannot tolerate medication well but I can also related to the headaches and muscles aches as the rest of the body reacts.

Hi again Jeffina

You have my every sympathy with such awful pain and an intolerance to medication - your life must have been hell for the last 5 years. Sounds like you have travelled the same path as me with Nik Patel - he is, I am sure, a brilliant surgeon but he doesn't exactly encourage one to go for the operation and makes quite a big play of the risks. Hence I have been twoing and froing on whether or not to proceed for over a year now. But, this winter has been really hard with the spasms and other bugs too and so I've more or less decided to go ahead. BUT, I would like an answer to the personalised risks because I have had high blood pressure which wavers in and out of control for over 10 years and I am 62 years of age. I don't think my risks are going to be the same as those of a 'fit as a flea' 30 year old and so I need to understand fully before going ahead. I think I will chase this up with Mr Patel's secretary. If anyone understands 'changing your mind', it's me, so good luck with the decision and really hope we can both come out the other side fit and well again.

Very best wishes and hope that your pain will remit either with surgery or nature, Roseann

Roseann and Leon - thank you for your private messages. X

Hi all, and particularly Jeffina

Do hope that the brave ones are recovering well and that those still thinking about surgery are not too consumed by it. I did eventually get a telephone consultation with Mr Patel, my surgeon at the Frenchay, and was able to ask him a whole load of prepared questions. I came off the phone feeling that I had the full picture and I am pretty sure I shall go ahead at the end of May or soon after.

I just wonder if anyone else has had something called BPPV (Benign Positional Paroxysmal Vertigo) before going into the operation? This is a new symptom that I've developed in the last week and I'm not too impressed! I am getting very dizzy, particularly at night when I turn my head to the right, and sometimes to the left! I nearly fell into the Sainsbury's trolley today when trying to get my shopping onto the checkout belt - not a pretty sight! Yikes, I think HFS was enough to contend with without this little bonus ailment. Anyway, your tales of dizziness pre-op would be appreciated.....

Take good care you all, best wishes, Roseann

Hi Roseann,

"not too consumed by it" - sorry to say I can't promise that! It's pretty much all I think about from the moment I wake until I go to sleep.

Glad you got to speak to Mr Patel. I have a few questions myself but actually when I was first diagnosed my husband remembered to ask a lot of relevant things as I had gone into shock at that point so I am not sure he could answer what I want to know unti he's 'in there' if you see what I mean.

Weirdly I have problems with vertigo and balance. (remember I am 9/10/11 and not 7) but the 8th nerve is obviously right next to the 7th and that one could cause vertigo. I had vestibular testing last year and was found to have a partially paralysed right ear with unknown cause. I've had this problem for over 4 years.

I do find my balance is better when my neck alignment is better but I struggle to get it to stay aligned. Been trying for a long time to balance my bite to help my neck but I can't get on with the methods and I think the nerve pain scuppers me a lot so I end up going round in circles. Might be time to just go for it with the op.... eeek!

Hi Roseann and everyone

Yes, I too have been experiencing dizziness on and off recently. Today it is particularly bad, but until you mentioned it I hadn't thought it had anything to do with the HFS. Just thought it was old age or something - I often have a stiff neck. Like you say, the HFS is bad enough, now this! It could be because I've had the HFS for 12 years or so - which is a pretty long time and goodness knows what damage it may have caused over that time.

On another note, how do you all manage with driving? I find that I am only confident to do short, familiar journeys these days. Motorway driving is definitely out of the question now.

I hope everyone who has had the surgery is recovering well and those that haven't are at least managing

OK.

Kindest regards

Sylvia

Sylvia & Roseann,

Have either of you ever tried chiropractic manipulations to help your HFS?

Hi Jeffina

No, to be honest I've never heard of it, please tell me more. It definitely sounds worth giving a shot - can you get it on the NHS? Did it help you or do you know anyone it helped? If it just helps with this increasing dizziness it would be worth it. (Just had a chuckle - how to get rid of a health problem - get another!)

Regards

Sylvia

Hi Syliva,

No, you can't have it on the NHS I'm afraid but there does seem to be some connection between neck alignment and cranial nerve disorders. I am sure if you google it you'll find a lot of info.

I went to a chiropractor for about 3 years when my nerve problem started up. It would always help with the pain but the adjustments would never hold very long. Then last year I found out about the connection between jaw alignment and the neck so have been working on that but struggling with it - the other people I am in touch with seem to be doing well with it though so perhaps just me for some reason.

Personally I don't advocate long term chiropractic manipulations as I think they can do more damage in the long term but it could certainly be a diagnostic tool in helping work out if neck alignment is a factor... especially if you have a stiff neck as well but then that's hard to say which came first with these types of problems.

Hi Sylvia, Jeffina and all

Thanks for letting me know that I am not the only dizzy Lizzie! As you say Sylvia, it's kindof funny to get a new problem that trumps the old one............ but not very funny eh!

Driving? I am continuing to drive but recognise that I probably shouldn't. I generally let someone else drive if at all possible. But, don't fancy letting DVLA in on the secret of my dizziness. They might make me take another test to get back on the road and that would probably mean never driving again.

As for neck problems and chiro Jeffina..... About ten years ago, just before I started my HFS journey, I had a very stiff neck. It disappeared when I stopped taking HRT - really strange. The chiro I visited said my neck looked as if I had had a serious car crash (which I hadn't) - wonder how I got the mushed up neck? Maybe it was in the birth canal? It sounds as if problematic necks have some bearing on our conditions. And we'll all be able to become doctors after all these findings!

Hope that as time goes on you will be less consumed Jeffina - it can't be easy dealing with all that pain and the big decision about surgery. And, poor you Sylvia - I am becoming convinced that we are the same person, other than the fact that I have only had HFS for 10 years - a mere novice.

Take care you both, Roseann

hi everyone

just thought i would post an update of how im going on..

well its been a little over 3 month since my surgery and unfortunatley my spasms come back about 2 week ago, but please dont let this put anybody off as for 1 they are no where near as bad as they were before, so thats an improvement in its self, secondly my surgeon said after the op that he was a little dissapointed because there was nerves touching close to my brain stem but he didnt want to start messing about that close because if you damage that then you've got major problems..but thats just my case not everyones hfs could have that issue so like i say please dont let that put you off.. got to leave it another 3 month now, then more scans to see if there is any more work they can do so could possibly be a 2nd op.. anyone out there pondering about having the op i was in the same situation for years untill i made my mind up, maybe if i would have made it up sooner i would be fully recovered at this moment in time.. ive come out fully recovered from the op spasms or not and i will go in for the 2nd op without hesitation... think im more dissapointed in that i had no spasms for nearly 3 month after having them on a daily basis, got my hopes up and maybe i shouldnt have, id say there once a week now, so like i say a definate improvement.. sorry if it sounds a bit morbid but as you the know the spasms seem to get the better of you

post again soon

kind regards chris

Hi Chris, really sorry your spasms have returned, although not as bad as before. It is something I dread happening. I'm just over two months post op and so far so good. I did send you a couple of private messages asking about your hearing as I understand you lost it in your left ear. I have had the same problem and am still suffering. Did your hearing come back? And how is your balance? I am still feeling wonky in the head but I guess this is down to the hearing problems. Look forward to hearing more on your progress. Best wishes Amanda