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Hemi-facial spasm

Posted , 8 users are following.

jess37744
jess37744

I was diagnosed with HFS when I was 17, I am now 20 years old and have been getting the Botox injections for 3 years now, when my face was twitching at its worst I ended up having 3 injection in one side of my face which caused drooping of my eye, cheek and mouth, I then went back to having one injection. The one thing I have found that has helped my HFS is cutting out all alcohol (no easy task) this has massively improved my spasm! Well worth a try!

2 likes, 16 replies

16 Replies

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  • Roseann
    Roseann jess37744

    Posted

    You poor girl Jess; HFS at age 17-20  must be really really tough.  There are many other young people with HFS and you may find that the Facebook Hemifacial Spasm International Support Group is the best place to connect with them all.  Hopefully you will be able to keep things under control with Botox and cutting out the alcohol for a while, but, if things do get too difficult, it's always worth considering surgery.  I had HFS for 9 years but had successful surgery with no complications at age 62 - I am very glad to be shot of it!  All best wishes to you.
    • jess37744
      jess37744 Roseann

      Posted

      Since being diagnosed i have had confidence issues, and have had a lot of problems with anxiety and panic attacks, which have made working sometimes very hard. It's very nice to hear the success stories from people having surgery, but the thought terrifies me! It's also quite scary that I've got to put up with this for years to come sad
    • barb_99377
      barb_99377 jess37744

      Posted

      I know how you feel!! I was a dental hygienist and sometimes the twitching so so bad I would want to excuse myself.. But could not. I was so thankful I wore a mask!!

      I did see my neurosurgeon and he said I was not a canidate for surgery because of the anatomy of the vein /artery complex.

      I stopped caffeine and do a lot of yoga... Some days I think it helps. Sleeping is the worst time for my spasm to act up... But at least no one is there to see it! Good luck to you Jess I know how you feel !

    • jess37744
      jess37744 barb_99377

      Posted

      I've recently been having a massage once a week (full body) which has relieved pressure in my body which is helping specially after having a face massage, and yes I used to be a waitress and now I'm a florist and I find it's worse when I'm having to talk to customers, the more nervous I get the worse my HFS becomes haha just a horrible cycle! And I know what you mean about sleeping, it's a nightmare getting to sleep!
    • opoku55281
      opoku55281 Roseann

      Posted

      Hi Roseann,

      I find it heartning that you have had a successful, uncomplicated surgery. Would you kindly impart information as to the where, and by whom, it was done?

      Thank you.

    • Roseann
      Roseann opoku55281

      Posted

      Hi Opoku (sorry, probably not your real name).  I am in the UK and had my surgery with Nik Patel in Bristol.  I know of at least another dozen people who have had successful surgeries with him.  He operates on the NHS and also privately from the Spire Hospital.  If you are not already a member then it's useful to join either of the two Facebook Hemifacial Spasm Support Groups - one is called International and one Worldwide, but both are very good.  I think the International one has most US and UK members whilst the Worldwide one has a lot of Australians as well as UK members.  There is information on all sorts of subjects on there and the groups are very supportive and informative.  Hope this helps.  Roseann.
  • barb_99377
    barb_99377 jess37744

    Posted

    Wow that is interesting Jess. I have not noticed a difference from when I do have a drink and when I do not... But I will start to notice!! Thank you for the reply!
    • jess37744
      jess37744 barb_99377

      Posted

      It took me a while to notice. after not drinking for 3 months I started to notice a massive difference, how ever now if I do have even a small amount of alcohol for example one glass of wine my spasm goes crazy ha! I hope it can help someone even if it is just a small change smile
    • barb_99377
      barb_99377 jess37744

      Posted

      Worth a try! Have you heard of this reaction with any other HFS folks?
    • jess37744
      jess37744 barb_99377

      Posted

      I've only just joined this forum so this is my first time talking about my disorder so no haven't heard anyone who has had the same reaction, I'm sure I can't be the only one lol
    • barb_99377
      barb_99377 jess37744

      Posted

      You are right! I am on the Face Book site also. Most folks there have had the surgery or are going to have it.
  • camas
    camas jess37744

    Posted

    I was officially diagnosed with HS on 8/26/05.  The first neurogist that I consulted with told me that I had two options botox or presciption drugs.  He encouraged me to try botox, because of the possible side effects of presciption drugs.  My general practioner also prescibed hydrocodone, because the twitching was effecting my trigeminal nerve.  I also quit drinking alcohol, but that didn't help.  So, I ended up with a saggy face on the left side that twitched with constant pain.

    The pain was so bad that I had one of my upper teeth on the left side extracted.  That didn't help.

    I gave up on the first neurologist and made an apointment to see another.  He diagnosed me as having trigeminal neuralgia and gave me trileptal.  In short, I went t several other neurologists in Spokane, tried accupuncture and other therapies ... no luck.  I finally went to a neurologist that was a specialist in gamma knife.  He did not think that gamma knife would work.  He wanted to prescribe a presciption for epilepsy, I said, "No."  I had another tooth pulled and that didn't help.  I did some research and found out about a surgery that cured HS.  I finally e-mailed a Dr. Hebb that worked out of the University of Washington Medical Center.  He contacted me and requested that I travel to Seattle.  I had an appointment with Dr. Rostomily on 6/16/10.  He said, "How have been able to deal with this for so many years?"  He told me that he could stop the twitching with a procedure called microvascular decompression.  I had the surgery on 7/7/10.  Since the surgery I have not had any twitching, but the trigeminal nerve is still very irritated.  I am still taking hydrocodone and muscle relaxers.  If the first neurologist had told me about the microvascular surgery I would have went for it.  Instead I suffered for five years and have a damaged trigeminal nerve.  The only reason that I don't still have HS is because I became pro-active and found that there was more that botox and prescription medicine to keep HS "under control."        

    • laurel3865
      laurel3865 camas

      Posted

      Hi Camas,

      I had MVD surgery for my TN one year ago. Immediately no TN shock after surgery and I still don't have the shock. My right surgery side was totally numb, but I regain 90% of the feelings back within 10 months. Lost partial hearing but got full hearing back after 2 weeks of surgery. Unfortunately, I developed hemifacials spasm after the MVD surgery. I'm not sure how this happened. My surgeon was very surprised as well. I just had BOTOX injections 3 days ago. I was told it takes about 2 weeks to get results if it works. I'm hoping that it will and I won't be lopsided in the face/mouth. My spasm is only around my mouth and lips areas. Medications, acupunture, acupressure, massages did not work for me. My only other option is another MVD, but I'm afraid that may not work either. Can you tell me what they found with your MVD surgery? Is it the same as for TN where the blood vessels are wrapping around the nerve? If so, what nerve? TN is 5th nerve, what about HFS? What nerve is hemifacial spasm? I was told that's the 7th nerve. My surgeon who performed my MVD for TN is assuming my spasm is due to the teflon possibly rubbing against another nerve, but he is not sure until he goes in to see what's going on. I just hate to have brain surgery when a surgeon is not sure of why the condition exist.

       

  • Roseann
    Roseann jess37744

    Posted

    Sorry if I've said this before Jess, but you might find it helpful to join the Facebook Hemifacial Spasm International Support Group.  There is also another Facebook Group called the Hemifacial Spasm Worldwide Support Group.  I'm not sure where you are in the world, but there are more Aussies on the Worldwide Group and lots of UK and US members of both groups.  There is a wealth of useful information in both groups.
  • gladys39971
    gladys39971 jess37744

    Posted

    Hi Jess so0 sorry to hear cause you are still a very young person.  Where I live there are only 2 other people with my condition, and of of them is a guy of 33 years.

    I am 70 years and I have had HFS for nearly 2 years now.  The botox did not work at first, but with my third shot, there was some difference. Please do join thre HFS Group on Facebook, as you will certainly get loads of support and information.  Yesterday one of the members mentioned "Carbamazphine" so will be getting them once I get a prescription from my doctor.  MVD is not performed here, so I have to try whatever I can get my hands on.

     

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