Remitting Hemifacial Spasm - surgery or not?

Hi Vivian, glad to hear you've joined the FB groups - I saw you there because I am a member too.  Good that you got a referral to the neurologist - some doctors don't have a good understanding of this stuff and tend to think we are all making a fuss over nothing.

You must try to keep in mind that it may actually be nothing and that would be the best outcome of course.  But, always a good idea to get these things checked out.  The blood tests may be helpful in just ruling out other conditions too, so all very worthwhile.

The MRI scan does need to be very specific if you are looking for Hemifacial Spasm - if you look in the FB Worldwide Support Group I think you will find a file in the FILES section (I think uploaded by Steven Dean) and written by Dr Sekula - it details the exact MRI which should be ordered.  The only problem is in getting a doctor to accept this fact!  The MRI scan will not necessarily show the compression which indicates HFS but it will rule out other much rarer causes of twitching.

As to which doctor is best for the MRI......   I would wait and see which appointment comes through first and then start from there.  Hopefully the neurologist will see how anxious this is making you and will sort out an MRI scan for you.  In my own case, I had to wait 7 years for an MRI scan, so you are doing pretty well to be honest!

Try not to get too worried, this may be something which will just go away.  My mum used to say to me 'It will get better or get worse and then you'll know what to do' and there's a lot of truth in this.  Let us know how you get along, there are many of us here to hold your hand or to give you the benefit of our experiences.

 I looked through the file in a group, however, i was unable to located the file that you told me about MRI. Would you kindly let me know which one?

Thank you. 

Herewith the information for MRI scan Vivian.  It is in the FILES section of the Worldwide FB Group under 'What "type" of MRI do I need to get ....', towards the bottom of the list:

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.

hi i talked to gp yesterday and he put down that instruction for MRI. However he said we are just scanning that specific spot, he said there is no need to scan the whole brain.... he had to nurse to talk to me. He said it's that specific area thats giving me problem, so we only have to scan that area but not the whole brain.

I told him that the whole idea of MRI is to eliminate other factors like tumor, and the nurse wouldnt listen. 

would that be a problem? Please help.

I think you've done really well to get such an urgent MRI scan Vivian.  I am not an expert but my guess is that this scan will give the medics what they need to make a diagnosis.  I don't honestly know what is needed to rule out the other rare conditions, but the fact to hang on to is that the other conditions are rare.  Let us know how it goes.  Take care and try not to worry yourself silly. 

how to join to FB worldwide group/ by which name I should search.

Regards,

First of all you need to be a member of Facebook.  If you are a member then search on Hemifacial Spasm Worldwide Support Group.  When you find the group you need to 'Request to join'.  An administrator will admit you to the group in a day or two and will post a welcome to you.  From a personal point of view I find the information in the Hemifacial Spasm International Support Group slightly better - member lists and doctors are kept very up to date and you may find others from your part of the world.  The admission process is just the same in both groups and you can of course join both of them.  Hope this helps.

Mann thanks.

I am member of Facebook and willtry as youmenmentioned.

Hi Vivian, that sounds like a very good deal to me.  You will have the MRI scan to show to the neurologist so you have done really well by this approach.  We wouldn't be able to do anything similar in the UK - just one GP per person!  Anyway, good luck and do let us know how you get on.  And try not to worry, HFS (if that is what it is) will not be harmed for waiting a few weeks.

Thank you for the kind words. Roseann.

It's the twitching that is driving me crazy..i am starting to feel like im a monster..my close ones would only say im worrying that's why the twitching are there....

Few people really understand how it feels to have these uncontrollable twitches Vivian, it's really hard.  I think people are just trying to reassure you by saying 'it's just worry/stress' or that they can't even notice it, but it's rather annoying to be dismissed so lightly isn't it.  One thing is for sure and that is that you are not a monster and that the real you shines through these twitches.  Hoping that your appointments will offer you a way forward in how to deal with it.  I found that a definite diagnosis was very helpful to me, even though i would rather not have had HFS of course.  But, at least this is a curable condition so it has to be kept in perspective.

Hey Roseann, yea people they dont understand this condition, like my GP, he was like you're just stressed, youre anxious....I have nothing in my life that I have to be stressed about honestly. (I am not a rich girl lol) But for life condition, I would like I am good enough and not have to worry about what to eat the next meal, so there is not much stress going on in life. It was really frusting and they make me feel they are very dissmissive cos they do not want to refer or treat me. My GP even told me there is radiation in MRI, I told him nope there isnt (I majored in psychology in University so I know a bit) and he was like ' so you're teaching me how I do my job?!'..I was like....okay whatever you say but there is no radiation in MRI. I really do not know what they studied in med school.....But It is good that I am having my MRI on Sept 6 and seeing a neurologist on Sept 15.