R. sided twitch round eye and lower face

Hi Joanne,

You don't have to take anything less than complete courtesy from your GP. Having worked in the NHS all my life I know we all have off days and it is hard to keep cool, but they have to remember the patient is worried and probably been waiting at least three weeks if it is like my surgeryIJust keep going back and asking, that is what I intend to do when I get over the initial weakness and get my husband sorted out.

I used to have severe migraine which always followed this same course where the twitch is now hapening, wonder if that is anything to do with it?

good luck.

Jenny

Awwww jenny I was diagnosed with migraine last year but not given any meds my doc said to me any one can slurr there speech and droop there mouth like I was making it up I found his attitude totally disrespectful and him saying I needed to see a physiciatrist was very disrespectful I'm an intelligent woman and I know for a fact something isn't rite I've since found out they are checking out my heart afta I mentioned it to the stroke doc my own gp even said that the stroke doc had discharged me I have symptoms of mini strokes but again givin no meds I'm at a loss has to what to do next about getting an undestanding doc who will listen and adhere to my concerns

Best bet is to change your doctor and don't take No for an answer

 

I was goin to put in a complaint but has I'm new to these docs I didn't think it was wise even the nurse said I'd deff got a droop on the left side of my mouth but getting my gp to take notice is all most impossible he doesn't know me from Adam and didn't know me before my speech went and my accent changed and my sense of smell went and so on so who is he to judge and why would I make anything up I'm an intelligent woman and I know my own body and mind I just need support not riddicule x

Hi Roseann,

Thanks so much for taking an interest. I had a CT scan which showed the stroke up in the left lobe of my brain and an MRI to see if that was the cause  of the twitching due to a bleed in the brain stem. Nil found so they don't know! Since then it has got a lot worse due I'm sure to stresses at home, but no one is taking much notice of my concern apart from fixing me up with social services and suggesting a home for Fred. I could not do that to him as it is my state which is making me feel so rough and not him.If I could see properly all the time instead of perpetually wangling my eye open I could cope, but no neurologists appointment until August and a three wait for a doctor's appointment! I have spoken to my GP on the phone, but nothing forthcoming except for a visit from Social services and when that will be is anyone's guess.

Interesting you spoke of a compressed nerve as an old friend who is a cranial osteopath wondered if it was that and the fact that it is now involving my right cheek and upper lip makes me even more concerned. I think I had better press for an emergency appointment at the surgery on Monday, don't you?

I am so pleased you got complete release from your problem, but doubt I could hold on as I am for two years!

Thanks again

Jenny

Hi Jenny, thanks for telling me about your situation; it must be very tough, particularly when your husband is not well too.  I am actually a retired social worker so if you need any advice or help re Social Services I am your girl!  I also had difficulty getting my HFS diagnosed and doctors were quite dismissive at times.  I ended up paying for a private appointment in Bristol with someone who was considered an expert in such things and it paved the way for me to transfer over to the NHS and have the surgery.  If surgery isn't an option for you then it's well worth trying the Botox to keep the eye open and functioning.  This sounds to be very important and not something that can just wait for an appointment in many weeks/months time.  Stress is definitely a factor with HFS and many of us have found our symptoms worse when life is stressful, which yours clearly is!  Please send me a message if I can be of any help to you.  I live in Hampshire by the way.

Hi Roseann,

OH dear, I must sound very needy, but life is very difficult at the moment and I do appreciate your very helpful comments. So much of what you get here is not all that helpful!

I am a retired radiographer and have been married for 57 years to Fred, who has Alzheimers(7years duration) and recently a chest infection for which he was in hospital. Since coming home a fortnight ago he has deteriorated mentally a lot more and physically is very frail. At the neurologis's and endocrinologist's advice I applied for Attendance allowance for me, which was refused, then we tried for Carers allowance, also refused because my OAP pension is too much. I get the basic one paid for by Fred's contributions so guess it only applies if you are not yet pension age with no income. My friends are urging me to appeal, but I just haven't got the strength to go through all that again. I did fill in a form for reduced Council tax yesterday on the grounds of severe mental impairment, but expect that to be refused as well!

On top of that whilst doing a doppler scan they found a lump in my thyroid,  for which I have now been referred to a surgeon as the endocrinologist says that radiation plays a large part in these things and I have had plenty of that in the days before lead plaster was a standard safety  precaution. I have that coming up in April and am wondering what they will suggest.

On top of that add one son going through a divorce, another having both eyes operated on for acute angle glaucoma within a week and a brother dying of renal failure!Luckily my other two ,another son and a daughter are both OK. As you can see it is one damn thing after another or as we say ODTAA time. I feel I cannot switch off.

I am interested as to why you had to pay to get some help as the same thing happened to me re apalling abdominal pains. In the end I saw the same surgeon privately and the first thing they did was ask for my credit card details and medical insurance. Not veryprofessional I thought. Having given his opinion I was transferred back into the NHS where he  had not forwarded his findings. I had to take full responsibility for an op to cut away adhesions and sign so many get out forms, but it did the trick! It was a real battle, but hey presto, no more pain!

I live near Croyon and attend Croydon University hospital, where everyone is very kind even though they obviously expect someone rather senile at 82. So are all the social workers I have met, all so willing to help, but such a raft of phone numbers and I am not certain just where I have been referred. All of them seem to have about a 6- 10 week waiting list though!

Many thanks, you have cheered me up.

Jenny

Hi again Jenny.  Please don't apologise for having so many challenges in your life; it must be hell, as well as very worrying on so many fronts.  I worry for England, Scotland and Wales without half the problems you're contending with!  As an ex health professional it must be very frustrating not to be able to get the help you need from the NHS, and my experience was much the same.  I think we're always better at advocating for others than we are for ourselves, don't you.  And just because you're 82 doesn't mean that you are obliged to be helpless and senile!  I'm a bit younger but really get fed up with being called 'dear and darling' and being patronised on account of my age/appearance.

Your husband's condition must be very difficult to cope with however much you love one another, and periods of hospitalisation always seem to make memory loss/orientation/confusion that much worse.  The question I'm asking myself is how on earth you're managing to cope with so much being thrown at you both.  But somehow we do cope even when every last bit of strength has been sapped from us.

I found that Hemifacial Spasm was a hard nut to crack with the neurologists and the two I saw more or less dismissed me as making a song and a dance over nothing.  It was something that deeply affected every aspect of my life and my work but I couldn't convince them of this.  I did my own research on the web and found out that this country's 'expert' was in Bristol; I decided to see him privately and it was the best day's work I've ever done - so vindicating to be told that he could see the compression on the MRI scan and that I could be fixed.  Sounds like you had a a similar experience with your abdominal stuff, even if they did want to see your credit card before they looked at your abdomen!

I am sure you should get the reduction in Council Tax on account of your husband's illness, and I am surprised and sorry that you didn't manage to get the Carer's Allowance.  Much depends on your knowledge of how to fill in the forms and here in Hampshire it's possible to get help from Age Concern Hampshire or CAB.  I always advise people to think of themselves on a bad day and to write down all they help that, in an ideal world, they need and would like to have - it's not about the help you actually receive but the help that you really need.  I am sure you are very capable of completing forms, but there is something of a knack to emphasising your deficits rather than your strengths!  I can understand why you wouldn't get the Carer's Allowance, but it surprises me that you didn't qualify for an underlying benefit (meaning that this could entitle you to extra premiums on other benefits you might be claiming or need to claim in the future).  The system is just so complex and I have a strong sense that you would tend to underplay what you do for your husband and what help you might need yourself.  As for appealing......   It's all such hard work when you have so much else on your plate, but there may be an organisation that would help you to do this and carry some of the burden of bureaucracy for you.

If there is anything I can help with please just give me a shout; you sound like an incredible lady.

Take care Jenny and keep smiling if you possibly can!  All the very best, Roseann (my real name is Angela!)

Dear Angela, Bless you.

I had a friend call in this morning and what you say about forms is quite right as she is an ex- physchiatric sister and tore up the first Attendance allowance form I filled in for Fred and re wrote it. The doctor then added lots of other points and we got the full allowance. Perhaps I should have done that for myself, but I filled it in as honestly as I could.

Mary could see my eye jerking and closing this morning and told me to get an appointment somehow tomorrow. I would really like to get a referral for this chap in St George's Tooting asap before I go completely up the wall with it. Would you mind if I updated you from time to time?

It is comforting that you too had such a job to get anywhere, though in fairness when I saw the neurologist my eye refused to move and also when I had the EMI ( I think). It was jerking away until they attached the sensors and then stopped! Sod's law maybe.

Maybe I will look in the Bristol area too for the neurologist you saw as my daughter in laws parents live in Bristol

Best wishes

Jenny

And bless you too Jenny.  I'd love to be updated on how you're doing and if you want to send me a private message any time then that would also be fine.  I am convinced that you could get Attendance Allowance based on the difficulties with your sight and any weakness caused by your CVA.  It's jut a matter of digging right down to the finer details of your life and explaining the difficulties of everyday living (eg seeing to brush your teeth when your eye is spasming, seeing the writing on medication bottles, being able to do up buttons or zips etc etc, seeing whether your clothes are completely clean, seeing when food is out of date).  It's undignified to have to admit to everything being difficult, but it may get you the allowance!!!  I am a member of another group on Facebook and I seem to remember that a Mr Thorne has not been particularly well thought of at St Georges but Henry Marsh is/was well received.  My man in Bristol is called Nik Patel - he was excellent and operates out of the Spire Hospital privately and Southlands on the NHS - people come from all over the country to see him and he is very experienced with surgery for HFS.  I'm not sure if this is something you would consider, given your CVA history, but he certainly knows is stuff and could give you a good diagnosis.  If you have a mobile phone then it's a good idea to video your spasms - mine always went away when in front of a white coat!

Take good care of you and your man and keep fighting the good fight.

All very best, Angela

Thanks Angela,

I had a chat with youngest son last night and he was adamant I get an appointment today. It took me over 35 minutes to get through and I said emergency and got one for later this morning.

The points you make are incredibly helpful, but even so I don't think I can go through that again, but if this thing  in my thyroid proves to be malignant and the eye doesn't stop spasming I will hand it over to youngest son to fight my corner for me.I am just so tired of it all.

One thing puzzles me, surely the MRI of my brain stem would have shown an obstruction in an artery? I have the report here and it says" no evidence of a stroke causing your right hemifacial spasm. If it bothers you ask your GP to refer you to Dominic Paviour at St .Georges for botox injections!"

Did you have your MRI scan before you saw Nik Patel or was he the one who ordered it?If you did was your obstruction reported or was it simply not found?

Having been a diagnostic radiographer I always put absolute trust in rdiologist's reports, but that suffered badly three years ago when I fell heavily over an obstruction in a car park and broke my elbow. For three weeks not one of the three Xray reports found it although it was a classic head of radius fracture and I knew it, as it is the standard result of a fall on outstretched hands and every student was taught it from day 1. By the time a  private physio referred me back to my doctor  and the fracture clinic there was nothing to be done with it as it had started to heal. That is the story of my life sadly and you won't be surprised to learn that my nickname at the hospital was " Calamity Jen"

Have you any ideas about what I should say to whichever GP I see this morning as I tend to say I am fine? Everything goes out of my head and I am conscious of the ten minutes allocation we are given. Wish me luck and I will fill you in, but maybe a private message would be better. How do I do it?

Jenny

Hi again Jenny

Sorry I am a bit late in picking up this message this morning and am probably now too late to give any help re the GP visit.  In answer to your other questions, I paid for my MRI in Bristol (with a Professor who has now retired but he trained Nik Patel).  He ordered the right MRI scan (which is apparently pretty specialised) and was able to see an arterial loop pressing on the 7th cranial nerve.  Your story of the broken elbow is horrendous - it really does worry you when something so basic is missed, especially with the background you have in this line of work!  You must have suffered unnecessarily, poor girl.  In terms of your MRI in respect of your HFS, it doesn't sound as if it was actually looking for the cause, just eliminating the possibility of stroke.  It may well have been ordered by someone who knows little about HFS but lots about CVA!  If you do have another MRI for the spasms then I can let you have the right 'order specification' (given by Dr Sekula in the US who is a world expert and highly respected).  I think Botox is probably the way to go if you simply want some relief from the spasms and eye closure, but it needs to be done by an expert of course and someone who will start with just a small dose and build up as needed.  It sounds as if you need to get this thyroid business out of the way before you seriously consider anything more radical for the spasms.  If I had been in time to give you any help with what to say to your GP, I think I would have suggested stressing that you are a full time carer for your husband and if this eye problem cannot be sorted then you may not be able to carry on caring - this is usually quite a good trigger for action because GPs have a duty to support carers with their own health problems.  I think you also need an urgent referral for Botox, if you decide to go that route.  Sorry this is a bit hurried and garbled; my husband is chomping at the bit to get out and about today!  Let me know how you get on please and keep smiling Calamity Jen!

Hello Angela,

i hope you managed to get out today with your husband and that you enjoyed it?

As for me, a complete waste of time. I saw a young Indian doctor who doesn't know me at all or I him. He was very polite, but says it is a self limiting condition and if still giving me trouble in 3 -6 weeks perhaps a referral for Botox...........? Very dubious. He couldn't seem to understand that though my right eye was closing that I could not see with my left one at any time very well.

In the end he told me to use eye drops at night and tape the eye shut. I said Good bye and Thank you and came home. The chemist laughed her socks off when I told her as she dispensed some micropore tape. So onward and upward again. I wonder what else is coming my way. I really ought to write a book, it might be a best seller!

Jenny

Hiya jenny I should write one too my doc told me I need to see a physiciatrist for my symptoms idiot him I've had a 24 hour monitor and now I'm bein followed up with a heart scan. I'm sick of this hemofacial droop too all my friends keep saying you've been havin mini strokes but idiot doc thinks it's in my head even my old gp said I'd had a stroke laSt july

Oh Jenny, that is so disappointing and frustrating.  I fear that you have to go back and be more assertive.  If you have a diagnosis of hemifacial spasm then it definitely is NOT a self limiting condition and you have very real and pressing problems right now.  My feeling is that you should ring the Practice Manager and say that you are not happy with the response you received and ask for another doctor to telephone you.  As a minimum you should be entitled to have the Botox.  Doctors can be very ignorant of this condition and I was put on all sorts of unnecessary and useless medications before finally taking matters into my own hands and requesting the private referral.  Please don't give up!  And thank you for asking, we had a lovely walk in the sunshine.

Hello again Angela,

You must be fed up wth this saga  just like me. I thought about what you said and sat down and wrote a note to my own GP just saying how it is and how I feel. I also dropped in a canny question about the MRI and would anyone have specifically looked for signs of nerve compression as you suggested? It might bear fruit and I would be glad if you could pass on the  right order specifications too as I feel I shall be better looked after if I show I know what I am talking about. I really hate doing this, it is not in my nature at all, but it seems needs must!

Jenny

Hang in there Joanne and maybe you should do what I have just done, compose a letter to your doctor and tell him/her how it is for you and how you feel about it. It certainly makes you feel better and it may get you some results fast.I am not giving up and neither should you.

Good luck

Jenny

Hi again Jenny, not at all fed up with your saga and just want you to feel that you are being heard.  Well done on being a little bit assertive; there really is no shame in it and I think it often causes the doctors to respect you more than they might have done!  Here is the spec for the MRI as recommended by Dr Sekula, Pittsburgh, USA.  I have cut and pasted this from another site so it may give you a bit more info than you need at this stage.  And I am sure, with your background, all of this means more to you than it does to me!!

 

What "type" of MRI do I need to get, to identify a compression (if a compression exists)?  Coming from Dr. Sekula himself, the type of MRI one should get to identify if a compression (or compressions) exist for someone suspected of suffering from HFS, is to order the following MRI:

"Brain MRI without contrast, 3D, T2, Inspace, acquisition with CISS or FIESTA sequencing thru the 7th cranial nerve, less than 1mm thickness"

In relation to the above, here is a bit of an FYI:

CISS - Constructive Interference in Steady State

FIESTA - Fast Imaging Employing STeady-state Acquisition

Although the type of sequencing (CISS vs. FIESTA) differs, in actual fact, the sequencing is essentially the "same". The reason why Dr. Sekula mentions CISS OR FIESTA, is due to the brand/model of the MRI system where you get your MRI done.

Generally, CISS sequencing is associated with Siemens MRI systems, while FIESTA sequencing is associated with General Electric (GE) MRI systems.

 In addition to the above, it is also one thing to get the correct type of MRI...and then another to have a NEUROSURGEON skilled enough to locate/identify the compression/s from the MRI scans.

 

So in summary, to give yourself the best possible chance of identifying if you have a compression/s:

1. Order the correct type of MRI scan (as per above). If you don't get the correct type of MRI, you are more than likely wasting your time.

2. Ensure you consult with a neurosurgeon who is skilled/qualified to "read" your scans properly to locate/pin-point the compression/s from MRI scan.

NB: Having said all of this though, there have been reported instances where even Dr. Sekula himself has ordered the correct MRI (obviously LOL)...looked over the scan results...saw no compression/s...yet still insisted in carrying out the MVD...and then saw the compression once the arachnoid membrane was dissected.

All the best in your latest battle Jenny, Angela

Hello Angela,

I dropped my letter into the surgery this morning and got a call just now from my own doctor. She is referring me to St George's for botox and read out the results of my scan. I asked if it would exclude compression, but she was not sure. I have made my point anyway and got somewhere.Thank you for the stats. I will take those when and if I go,Needless to say I didn't tape my eye shut last night!

Jenny 

That's great news I think I'm gonna write a letter myself to my gp he might take notice and try fobbing me off to a physiciatrist

Good for you too Joanne.  We really have to advocate strongly for ourselves with this condition.

That is really good news Jenny; so pleased your perseverance elicited a good response from your own GP.  Here's hoping that you won't have to wait too long and that other health issues will also be resolved happily.  Please keep in touch and let us know how you're doing.  With love and great admiration for the way you are dealing with so many challenges in your life. Angela