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Does everyone's HFS seem to progress differently?

Posted , 5 users are following.

jessica_59892
jessica_59892

Curious as to how most HFS sufferers progress. I have been suffering with this about a year now and mine seems to be progressing very quickly. It has started in my eye to my nose area and now my cheek. Just wondering if this is typical as I've read that it can take years to progress like this. 

Also my neurologist has set up an EEG test has anyone else had this test suggested?

Thanks in advance!  

0 likes, 26 replies

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  • bea52
    bea52 jessica_59892

    Posted

    Hello Jessica,

    I believe that everyone's experiences do differ somewhat.  My own eye tics moved to my cheek and then on to the muscles around my mouth within about 6 months.  They are intermittent, but are much worse when I am under stress.  I have decided to pursue the option of surgery, but felt that I received some relief through the past 12 months with treatment using clonazepam (prescription drug, 3 times daily), SPZM (3 tablets 3 times daily), and the essential oils cedar and basil mixed with a carrier oil and rubbed on the spasm area, on either side of the ear, and near the brain stem.  My diagnosis, however, was based on an MRI and I do not have any experience with any other testing for this condition.  Good luck to you!

    • jessica_59892
      jessica_59892 bea52

      Posted

      Thanks for your input Bea! The neuro that I saw never confirmed or diagnosed me with HFS. He doesn't seem very knowledgeable about it. I think I will be finding another one ASAP. As far as the SPZM medication why exactly is it? Have your spasms decreases significantly while using it? 
  • april417
    april417 jessica_59892

    Posted

    Hi Jessica! I struggled for 5 years be fire I found a neurosurgeon who could help me. Mine started in the left eye and quickly crept down my face all the way to my clavicle. I live in Las Vegas and the doctors out here aren't very good. I finally found an AMAZING neurosurgeon. He's in California. Dr.Mark Linskey.  Mine got so bad that the last two years it went to HFS with tonus phenomenon. My left eye didn't open the last two years and my face consistently spasmed allowing me to never sleep. There is no known cause for HFS. HFS causes stress and anxiety. Stress and anxiety DO NOT cause HFS. My surgery took very well. I have some balance issues because it is do close to your balance nerve but it is still part of recovery. I am so blessed that it took. If you can Dr Linskey he is in California but so worth it. I had been to many neurologists before him. None could help me. Tried botox injections, and other things. They all told me surgery doesn't work. Dr Linskey studied under the dr who developed this surgery fir 7 years. He's highly ranked and knows his stuff. I know what it's like in the first year. And I know the progression through five years. It's embarrassing. You can't put make up on because the spasms take over. You stop wanting to go out in public. You change your hair so it covers one side of your face. So many emotions you'll go through. Dr Linskey can help you. He is through University of California, Irvine. He is AMAZING! Please get yours taken care of ASAP. Don't let it progress to what mine did. It doesn't ever get better. It's myelin around nerves in your brain that are deteriorating. They will keep deteriorating. I had two nerves deteriorated that were bouncing on an artery. Mine were extremely severe. That's why my recovery was so bad and still ongoing. Please don't let yours get that bad. I cried fir dad's when I found Dr Linskey.  I'm myself again. Good luck! 
  • april417
    april417 jessica_59892

    Posted

    Sorry about some spelling. Auto correct. I cried for days, not for dad's. Lol. I recommend anyone having issues to see my Dr. I have heard some not so great stories with some other Dr's. Do research on any Dr you're going to allow to operate on you. 
    • jessica_59892
      jessica_59892 april417

      Posted

      Thank you for your response April! I do live in the us and will be looking that doctor up. My current neurologist says that my MRI is completely clean and shows no compression or loop in my facial nerve whatsoever which is strange to me. I have 3 children all young, and it has just got so hard for me. I cry daily and pray that it will stop. I appreciate your advice. 
  • Roseann
    Roseann jessica_59892

    Posted

    Hi Jessica.  From all that I have read over the last few years of being a forum member, the progression of HFS can be either very fast, steady or very slow.  It is an individual thing unfortunately.  I had the EEG tests as part of my pre-op assessments.  These were completely painless but showed the consultant how my spasms responded to different audio and brain stimuli.  The only inconvenience in the tests is that you end up with some yukky gel stuff in your hair which can be a bit stubborn to get out.  Hope you get some answers.
    • jessica_59892
      jessica_59892 Roseann

      Posted

      Well then it seems as if I'm one of the ones who got the very fast progression unfortunately. 

      I am a little confused after speaking to my neuro today. I was told I have absolutely no loop or compression of my facial nerve at all. I was also told that sometimes HFS can be present without the nerve being looped or compressed by a blood vessel. Confusing to me because I was under the impression that's what's the cause of HFS is. 

      I'm just at my wits end and want to be able to focus on my young children without these horrible spasms getting in my way. It sure is mentally exhausting like everyone says! 

      What would you suggest my next step would be? 

    • Roseann
      Roseann jessica_59892

      Posted

      Sorry if I am repeating what I've said previiously Jessica.....    Have you seen a neurosurgeon who has experience of HFS?  Several forum members have a diagnosis of HFS without the compression showing on the MRI scan.  What usually seems to happen is that, if you decide to have surgery, they find the compression when they are 'in there' and following EEG tests.  Can quite understand your confusion and really sympathise with you in terms of the exhausting nature of this condition.  It's like fighting a war with your face all day long and trying to be 'normal' for your childrens' sake.  Hope you can get some better answers and possibly a more expert opinion too.
    • jessica_59892
      jessica_59892 Roseann

      Posted

      No I haven't Roseanne. I'm probably repeating my questions and I apologize for that. I just keep getting so many varying answers and responses. I will indeed start looking for a neurosurgeon I suppose because I would much rather have the surgery and get this takin care of before it gets too out of control considering it's progressing at such a fast rate. I am realizing that a specialist is the way to go because no others offer the surgery. I'm starting to just feel so abnormal and self conscience. I am just so shocked that I'm experiencing this at 28 about to turn 29 years of age! Seems too young for all of this. 
    • Roseann
      Roseann jessica_59892

      Posted

      You are right in everything you say Jessica.  You are FAR too young to have this condition and it needs to be cured once and for all.  I am not sure if you are a member of the Hemifacial Spasm International Support Group on Facebook, but, if not, it's worth joining.  There are useful files of information and so many people who can give you good advice about the right surgeon to consult with.  It is absolutely essential that you pick a surgeon with the right experience of MVD surgery for HFS, even if that means travelling a long way.  Don't settle for anything other than the best if you do decide on surgery.  But, I know it isn't easy with young chlldren..........
    • april417
      april417 Roseann

      Posted

      You are so right. Travel if you need to. Many Dr's who perform these surgeries do not do them regularly and do not have success. My Dr has an amazing success rate. Dr Mark Linskey. At University of California at Irvine. I don't live in California but I traveled to see the best! 
    • Roseann
      Roseann april417

      Posted

      Your doctor sounds great April.  I think a potential patient for surgery should look for stats of at least x 2 operations per week over several years (MVD for HFS or TN).  And should also look for a success rate in excess of 80% with some success in a further 10%.  I know that Dr Sekula in Pittsburgh has stats which exceed these.  He seems to be the top doc in the US from what I've read on all the forums.  Many travel thousands of miles to see him, even from Asia!
    • april417
      april417 Roseann

      Posted

      I agree. My Dr studied on the east coast and I'm wondering if the Dr you mention is the one he studied under who developed this surgery? I believe it was Pittsburgh. I'm so glad you found someone great too! Yes. If I remember correctly Dr Linskey has an over 80% success rate that jumps to 90% if the spasms stop during surgery. Mine did. Again I feel so lucky. Changed my life and I'm me again. Just had surgery November 2013.  Still of balance but my case was so bad I'm told that's very normal. So I'm good. Hope you're still doing well. I know they can come back. No guarantees so I'll keep my fingers crossed. 
    • Roseann
      Roseann april417

      Posted

      Thanks April.  So good to hear that you too have your life back and that your Doctor trained in Pittsburgh.  I think Dr Sekula in Pittsburgh was trained by the original MVD pioneer who was called Dr Janetta.  We have a lot to thank him for eh?  I had my surgery in June 2013 and was spasm free after 6 weeks, with no ongoing complications.  I can't tell you how good it feels to be normal againand I am sure Jessica will one day feel the same.  Hope your balance improves as time goes on.  I find it amazing that people prefer to have almost anything other than the spasms - it shows how bad HFS is and how it affects us all.  Take care and keep on getting better.  All best, Roseann (UK, Winchester)
    • jessica_59892
      jessica_59892 Roseann

      Posted

      Roseanne and April thank you both so much for your input. I will be looking into not contacting the doctor in Pittsburg. I wouldmuch  rather get on the ball with the surgery route rather than try and deal with this as it creates far too much of a daily struggle for me. Others really just don't understand, and it is very hard as you both know all too well. This forum has been such a great thing for me. I'm sure I'll have more questions along my journey and I will keep you all updated smile thanks again! 
    • Roseann
      Roseann jessica_59892

      Posted

      Brilliant Jessica.  Dr Sekula is, by all accounts, a lovely, caring man as well as an absolute genius with this sort of surgery.  Just hope your medical insurance will allow you to go to him.  As you rightly say, no one understands how this thing impacts your life and I can't imagine how you cope as a young mother with HFS.  Here for you all the way girl.  Take care and stay positive.  There is a cure. x
    • jessica_59892
      jessica_59892 Roseann

      Posted

      Yes Roseanne my health insurance is my biggest concern and I'm sure this is beyond expensive. I just looked him up and I want to be sure this is right before I begin contacting. I found a Raymond Sekula jr. I'm sure this is the right one after visiting his web page. 

      May I ask how financially draining was your surgery? This is my main concern at this point. I will do just about anything I can to get this taken care of. 

    • Roseann
      Roseann jessica_59892

      Posted

      You are right that it's Raymond Sekula.  He has a PA called Ann Wilkinson (I think) and she's reported to be very helpful.  I only know of Dr Sekula from the Facebook site and all the rave reviews he gets.  I was extremely fortunate and had my surgery done 'for free' under the UK NHS system.  We don't pay for essential healthcare in this country and I know how lucky we are.  In the UK you could get the surgery done privately with my surgeon (Nik Patel in Bristol) for about £18,000 but I believe this figure can be treble if you pay privately in the US.  But, this is third hand info and so best to check it out with Dr Sekula's PA.  The guys on the Facebook site are really helpful with things like how they got insurance authorisation.  Do join and ask the question of them.
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