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What do do next-

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sarah80712
sarah80712

I have had a hemi-facial spasm for about 5 years. In this time I tried medication, a chiropractor, and most recently botox. The adjustments helped when I was getting them 2-3 times a week but when i dropped 1 time a week it came back and was no longer practical due to the expense. The botox that I have been getting for the past year has helped but lately I cannot smile and my eye seems to bulge. i canceled my recent appointment and decided to try a cranial message with a massage therapist. It gave me some relief but I am concerned it may also be more of an expense than I can handle If I need it weekly. I have thought of surgery, and from what I have read, it may be worth it though surgery makes me very nervous, and not sure I could get enough time off from my job to recover. I have not tried essential oils. I only take klonopin at night to help me sleep because I did not want to get dependent on it if I took it three times a day. Any suggestions?

0 likes, 22 replies

22 Replies

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  • barb_99377
    barb_99377 sarah80712

    Posted

    Have you tried increasing your mineral intake? Magnesium and niacin seem to help me. I have found that fault yoga helps. I also take klonopin to help sleep. Sleeping is the most frustrating time for me.

    I have started taking Tumeric and ibuprofen during the day.

    I pray for a remission from this very annoying condition .

    Good luck to you and keep me posted on the cranial message.

    Wishing you a lovely day

    • sarah80712
      sarah80712 barb_99377

      Posted

      the cranial massage helped. at first. an hour massage. then began 30 min massages due to the lower cost but didn't really help anymore. i have not tried increasing my mineral intake but i will. thanks so much.
  • Roseann
    Roseann sarah80712

    Posted

    Hi Sarah.  I'm not sure where you are in the world, but, if it is possible, then surgery really is the only cure for this progressive condition.  Many of us have been 'round the houses and back again' with alternative therapies, and whilst some give a little relief, none is actually going to make this horrid condition go away.  I had had HFS for 9 years when, at the age of 62, I decided I had had enough and went the surgical route.  I did not do this lightly and procrastinated for a couple of years.  However, it turned out to be the best thing I ever did.  My surgery was completely successful and I now have my smile back; it has made a massive difference to my enthusiasm for life and my confidence to socialise again.  If surgery isn't an option then I think your money is best spent on Botox.  I wish you luck as you face these difficult times and hard decisions.  Happy to help in any way I can (I am in the UK).  You may also like to join the Facebook Hemifacial Spasm International Support Group; there are lots of helpful members and loads of good up to date information on the site.
    • ruchishobhu
      ruchishobhu Roseann

      Posted

      hi Roseann ...I did surgery on 10th Aug .....80% spasm has gone but day by day I can feel it's increasing bit by bit ....is it normal ...today is 15th Aug ......am I trying to b too anxious ...can u Pl help in knowing immediate and long term symptoms of MVD surgery
    • Roseann
      Roseann ruchishobhu

      Posted

      Hi Ruchishobhu.  Congratulations on your surgery; the worst is now over!  It is perfectly normal to have spasms after this surgery; in fact, at least 40% of people seem to have these residual spasms.  I think they sometimes get worse before they get better because steroids given during the surgery are wearing off and you need to allow time for all the swelling to subside naturally.  My own spasms went away at 6 weeks after surgery, but I know of many others who take much longer.  Research states that if you are seeing gradual improvement in the first 4 months then you are likely to be spasm free at one year after surgery.  Please rest lots, drink lots of water and be very patient.  Weeks 2 and 3 after surgery can be quite tough with headaches and feeling very tired and weak, but things should pick up quite soon after this.  If you do get a really really bad headache which does not get better with painkillers and which gets worse and worse then it's important to go immediately to the hospital, because this can signify a spinal fluid leak which requires immediate treatment.  But, hopefully things will get better and better for you as the weeks progress.  Please let us know how you're doing and where you had your surgery.  Very best wishes to you.
    • ruchishobhu
      ruchishobhu Roseann

      Posted

      Thank u sooooo much for the reply.....It is giving me a lot of respite psychologically. ..The doc and hos was best and surgeon was very happy with the surgery ...but I thought that spasm go away instantly ...love u for u r response
    • ruchishobhu
      ruchishobhu Roseann

      Posted

      hi ....u always respond spontaneously and methodically ....its post 21 days of my surgery ....slight twitching can b felt sometimes but 90% has gone ..lol am very very happy for that but I can still feel my voice echoing inside me ..or ear has some liquid or air bubble ...maybe like the feeling when the aeroplane takes off ...means ear drum not comfortably placed in its place every ...This started after 4 days of surgery ...is it normal ...is am little tensed ...Pl suggest
    • Roseann
      Roseann ruchishobhu

      Posted

      So happy to hear that you are progressing well.  It sounds as if you will be spasm free within a year if not a lot sooner!  As for the voice and the liquid feeling in your ear...................   I am not an expert in this but have heard many others describe the same sensations.  It seems to be normal that they get better in time, but most people also like to check this with their surgeon to see what he thinks.  Try not to be tense, it is still early days and your body is healing on the inside; this takes longer than the outside healing I think.  Be patient and be optimistic; it sounds as if you are doing really well and your body is just settling down after major surgery.
    • ruchishobhu
      ruchishobhu Roseann

      Posted

      Thank u for the reply ....I will check with the doc too ...looking forward to heal fully and echoing of my voice goes away ...
    • ruchishobhu
      ruchishobhu

      Posted

      hi ...these days I can feel progressive increase in twiching around my eye ...it's sooooooo scary.......did the MVD surgery on 10th Aug.....that time twiching was very less ..

      is it normal for it to increase ?????

      why there is a trend of increase in eye twiching.....

      is the surgery not successful....

    • Roseann
      Roseann ruchishobhu

      Posted

      So sorry to hear that your spasms have increased again.  I am not a medical person but, from what I have read, this can happen if you have been overdoing things or are particularly stressed after surgery.  But, if the trend continues to be of increasing spasms then it might be worth asking for another MRI scan just to reassure yourself.  I believe it's normal for things to gradually get better rather than going backwards like this.  I hope it's just a blip and you will soon be back to feeling well again.
    • sarah80712
      sarah80712 Roseann

      Posted

      i am in the U.S.  surgery is not an option at this time for me. how long is recovery? my concern is living alone and being unable to drive for my job and the leave time i would have to take. and thanks!
    • Roseann
      Roseann sarah80712

      Posted

      Hi Sarah.  Recovery is a very individual thing from MVD surgery.  I have heard of people in the US (particularly those who go to Dr Sekula in Pittsburgh - he is viewed as the country expert and gets amazing results) who recover very quickly.  I would say the average time from what I've read would be that you leave hospital in 3-5 days, you have 3 weeks complete rest with day time sleeps, you feel loads better at this point, then you may be able to go back to work at 6 weeks post surgery.  You will not recover full energy levels again for about 3-4 months so you need to respect your body, particulary if your work is in any way strenuous.  The above schedule assumes no complications of surgery.  It is a big operation and has to be respected, with your body being in charge and time being available to rest and recover.  Surgery with Dr Sekula has, I am told, a 90% success rate, but much lower with other less experienced surgeons.  If you want more info then please be sure to join the Facebook Hemifacial Spasm International Support Group - there are some real experts on that site who can advise you better than I can about how things work with insurance etc in the US.  There is also a list of US surgeons on that site (those who have been used by members with different degrees of success of course).  It is hard when you live alone and can't take a lot of time off from your job, but the surgery can make a huge difference to your life if it's successful.  Hope this helps.
    • ruchishobhu
      ruchishobhu Roseann

      Posted

      hi Roseann.....its over 14 weeks my surgery and twitching is increasing ...I AM SCARED .. went to doc...he says think positive ...he seemed to b clueless ...what to do now ???????????,

      very few people have this problem and amongst them very people have unsuccessful operation and I find myself as one of those ######

    • Roseann
      Roseann ruchishobhu

      Posted

      HI Ruchishobhu!  I'm so sorry to hear that your spasms are increasing; this does not sound to be a good sign, but it's also not hopeless.  Many people I know have taken up to a year to be completely healed after MVD because there was damage to the nerve which needed to repair itself.  But, it is normal to see improvement, not deterioration.  I think it would be wise to ask for a new MRI scan so that your surgeon can check that everything looks OK and that there are no new compressions.  I agree that it's always good to 'think positive' but you also need to be realistic.  Hope that things will calm down naturally and that a new MRI will give you renewed hope and patience.  All best wishes to you.
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