MRI results

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Hi I had an episode of hemifacial spasm at the end of August and many more smaller spasms since, had the mri a couple of weeks ago but not seeing the neurologist until the end of this month.

Just been to see my GP who told me "lots of people have twitches" "its quite normal" made me feel miserable to say the least!! he then checked the results of mri and said everything is fine so thats good news, without any real conviction. I am still twitching and sometimes being woken up with under eye spasm which settles when I change position

My question is to all you lovely supportive people out there is; does the problem always show up on the mri?

I am begining to think that I am "putting it on" as they say.

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12 Replies

  • Posted

    Hi Christine, although mine did show up on an MRI, plenty of others have had the same issue as you where it hasn't.  My MRI was taken with contrast, ie I had a dye injected into my arm which circulated round the veins and made it more easy to spot the compression.  Perhaps this is what you need if you haven't already.  I've had my HFS now for 18 months, and officially diagnosed at the beginning of this year and had one round of botox, but I am absolutely terrified at the prospects of it worsening, as seems the norm.  Don't let the GP put you off, ask to be referred to a neurologist at the very least, who can give you the advice and expertise you need.  Sadly GPs don't know very much about this at all.  Good luck x
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    • Posted

      Thank you Sharon, you made me feel much better. Although having gone back to the doctors it appears that the mri scan results have not been sent to them, so no idea what he was talking about. The same doctor ignored my high blood pressure results and told me to go buy a machine if I was worried!!

      Went to see another doc who was brilliant and very sympathetic, put me on blood pressure pills and upped my amitriptyline to help me sleep through spasms, at least until I see neurologist at the end of Oct.

      I do hope you and your daughter are getting some relief from your symptoms and wish you all the very best.

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  • Posted

    Hi Christine

    Please change your doctor, first any doc that makes you feel uncomfortable is not for you. My daughter and myself have had twitches and along with a few other symtoms. I recently suffered from a grandmal seizure in DEC and she had a Grandmal seizure in 2012. The link was stress and I truly hope you are able to get the best answers for yourself. We are both doing fine however she suffers from a rare form of dimentia, I am not saying this is it however if you are in a extremely stressful enviroment never forget to tell your doctor. Hope this helps.

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    • Posted

      Thank you Catherine for your kind words. How distressing it must be for you both.

      Please look after yourselves and avoid stress!

      Although this must be very difficult for any of us.

      Kind regards, Christine

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  • Posted

    HI Christine.  It sounds to me as if your GP is very ignorant about HFS, as many are.  MRI scans need to be ordered and interpreted by someone who has expertise in this field and compressions do not always show up on a normal MRI scan.  The good thing is that nothing sinister has been noted on your MRI, so the worst case scenario is that you have HFS.  I think we've all been led to believe that it's just tiredness, stress etc and we've all been told 'I can hardly notice it' which is really annoying.  HFS is unfortunately a progressive condition but Botox is often used to control it well (with differing degrees of success and acceptability for the patient).  I hope you will get a good response from the neurologist and wonder who you will be seeing and where?  I had to see two frogs before I got to the prince who was Nik Patel in Bristol, UK.  After 9 years I opted for surgery which was completely successful, but I am sure that idea is for another day much further down the line, if at all, for you.  All best Christine. 
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    • Posted

      Thank you Roseann, you replied to my very first call for help a few weeks ago. The GP should retire, because when I saw another doctor yesterday she said that they did not have the results, they would be with the neurologist.

      I had decided to try and forget about it until the results but that has now become impossible, I went back to work for two weeks and since then many things are triggering them. The left side was the most severe at first but now the right side is causing the most distress. Concentrating and sleeping is becoming impossible but have upped my amitriptyline which stopped the spasms a little last night. Now got severe tinnitus which I am sure is connected in some way.

      I am pleased that the surgery worked and after reading the reports can see whay you would wait for some time before going ahead with it.

      Look after yourself. Christine

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    • Posted

      So pleased to hear that at last you have a sympathetic ear Christine.  Please let us know how you go with the neurologist and just ask if we can help in any way.  Wishing you well, and lots of sleep!  xx
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    • Posted

      Hi Roseann, I ve just reeived the results of mri from neurologist. It says it is clear and normal. Although I am pleased with this as no one wants an illness, I have just had the worst three days ever, twitching, tinnitus, and an episode/spasm that started in my cheek jawline and down into the front of my neck and throat, left my throat slightly numb for most of the day. I have been unableto speak, smile or chew.

      I think that I am going mad!

      How does anyone explain this to an employer? Did you have to stop work? I do a lot of driving and meeting people and at the moment would not be able to do either.

      On the good side it has been very quite a home and I might actually lose some weight.

      Hope you are well x

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    • Posted

      Hi again Christine.  Good news that there is nothing sinister causing your spasms, but, I can quite understand that you feel almost disappointed that nothing has been spotted to cause you such problems.  I would say that many people with HFS have had clear MRI scans, because only very experienced surgeons and neurologists seem to know how to spot compressions of the facial nerve.  In my own case, as I think I may have said, I paid privately to see someone who was an expert in this field and immediately I was properly diagnosed and sent in the direction of surgery, if I wanted it.  This was after 9 years of asking for help from different neurologists and doctors.

      I did eventually give up work because, like you, I had to do a lot of driving and meeting people (I was a social worker).  But, I endured the embarrassment and ridiculous tiredness for many years.  Thankfully I was nearing retirement age and was able to call it a day, but, I do miss my work.  I think it's very hard for employers to understand HFS, because to them it's just a bit of a twitch or not even noticeable, ha ha.

      I hope the quiet at home will help your face to relax.  A lot of people seem to be having a bad time this month (from what I've read on other forums); strange, but may be to do with changing temperatures etc.

      Please let me know if I can give you any further advice or help.  All best, Roseann (my real name is Angela and I think we may have connected on another forum?)

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    • Posted

      Hi Roseann, hope you are keeping well? Just to let you know that I saw the neurologist he explained that the mri was clear. I said that I had just had the worst three months of spasms and twitching. He said it was probably something begining with "M" I cannot remember what he said!! (am seeing the doctor this week and they have it written down) He has put me on a waiting list for botox but I am not sure I want to proceed after reading some of the side effects. Did you have your mri done at hospital then take them to a specialist in HFS? I suppose I might be a little niave in thinking that he knew what he was talking about. The comment "You can't see it though" has become a mantra in my house, we have a laugh about it but its only other sufferers who actually get it! Take care and enjoy retirement. 
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    • Posted

      Hi Christine, thanks so much for the update.   I totally understand the 'you can't see it' or 'we don't notice it' responses!   They made me want to punch the people who said this!  I certainly noticed it.  If you do have Botox then I would recommend going very gently with the dose and maybe just starting witht he eye area.  I had benefit from injections around the eye (and no side effects) but didn't like the full face job as it took away my ability to smile or communicate with my face.  I'm not sure what the M word stands for; usually they suggest dystonia!  But, I would not rule out HFS if I were you.  I had not had an MRI when I went to see Professor Coakham privately.  He did the MRI and then confirmed HFS diagnosis in consultation.  Total cost to me about £750 as I recall.  I am doing really well now thanks.  What a difference it has made to be rid of the spasms and the tiredness from trying to control my face.  I hope you might get there too.   Please keep us posted. xx
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