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more twitching

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simon71981
simon71981

Diagnosed with hfs about 3 yrs ago and kept reasonably in check by Botox. 2 wks ago, twitching now on other side as well and leg. Any ideas

0 likes, 11 replies

11 Replies

  • sue15958
    sue15958 simon71981

    Posted

    Simon,

    I suffered from HFS for 20 years.  I only experienced twitching and eye closing on left side of my face.  I had Botox injections for 10 years and truly wish I had not taken that route.  Gradually the Botox weakened my facial muscles.  It also caused the left side of my mouth to droop.  I had surgery, MVD, 10 weeks ago.  The hemi-facial spasm is completely gone.   I feel like myself again and wish I had the surgery 10 years ago.  Getting Botox is just putting a bandaid on the  problem.  It does not address the cause.  I saw a wonderful neurosurgeon in Philadelphia, Pennsylvania where I live.  I strongly recommend that you discuss your HFS with a neurosurgeon who specializes in that area.   MVD is the way to go!

    Sue

  • Roseann
    Roseann simon71981

    Posted

    Not sure if you've had an MRI to rule out other causes Simon?  It is possible to have HFS on both sides but, by all accounts, very rare.  I've not heard of anyone with leg spasms associated with HFS but have heard of people with something called a 'tic disorder' which causes involuntary movements elsewhere in the body.  Hope your neurologist or neurosurgeon will be able to shed some light on this.  I've noticed that a lot of people have had worsening spasms over Christmas, which is, after all, a very stressful time for most people.  Hope you can take it easy and that they unusual movements will disappear of their own accord.
    • Roseann
      Roseann

      Posted

      The other conditions which spring to mind are blepherospasm and dystonia Simon.  I have very limited knowledge of these conditions but it might be worth looking up the symptoms.  I am not a medic and only pick up information from reading these HFS forums.
  • lynne85105
    lynne85105 simon71981

    Posted

    Hi Simon, As Roseann mentioned it is really rare to have hfs both sides, also I have never heard go it affecting a leg. I would diffentately get further checks. Botox is just a bandaid as all the other alternatives. MVD is the only way out but in saying that it's a scarey operation with possible complications.

    i had mine 16 weeks ago. I went in very healthy and fit, I'm now deaf on op side, loud tinnitus which I finding harder to handle than hfs, to date I'm dizzy and out of balance I'm told balance will come back, hearing gone forever -it's been the worst imaginable 4 months.

    I'm spasm free that is the good news....as some folk end up with all the above and still have spasms...

    sorry HFS sucks!

  • suzi57
    suzi57 simon71981

    Posted

    Hi Simon, I've had HFS for 10 years & had botox for about 5 years which I stopped 18 months ago as it didn't really work in the end.  I'm waiting for my operation date which should be around March.  I've also had movement around my other eye on occassions over the past 4 years (very minimal), but lately it is progressing.  I have had my pre op tests and am hopnig to find results out when I go for my pre op assessment soon.  I'm not sure about your leg and suggest you get referred for MRI scan as there must be a connection. I will let you know my results and please let us know how you get on.  Good luck, Sue J  
  • camas
    camas simon71981

    Posted

    Hi Simon,  I totally agree with Sue.  When I began having HFS symptoms my general practitioner refered me to a neurologist.  The neurologist recommended botox treatments, which nver worked.  He then started prescribing different prescription medications.  Te problem that I found with neurologist's, anyway the ones that I was referred to, is that the majority of them are arrogant.  After I did a lot of research I found that there was a surgeon on the other side of the state that I live in (Washington), that specialized in microvascular decompression surgery.  I contacted his office, explained my symptoms and they scheduled an appointment for me within a week. He said, "How have you been able to live with this all of these years?"  He told me to go back to my neurologist, get a referral and his office would schedule a date for sugery.  When I told my neurologist about this surgeon, he didn't even know his name.  Since the surgery I have been spasm free.  The problem with my HFS is that it affected my trigeminal nerve, so I was in constant pain and the years of twitching left me with nerve damage.  While I had HFS I had two of the teeth on my upper left side extracted hoping that it would relieve the pain.  My personal recommendation is if you know that you have HFS and it is getting worse ... get microvascular decompression surgery.  The sooner the better.

     

  • sue15958
    sue15958 simon71981

    Posted

    Simon,

    Camas is correct.  The only possible cure for HFS is MVD.  It is very dangerous surgery and has many risks; however, it is your only hope for ridding yourself of the awful spasm.  I had MVD about 10 weeks ago.  I was petrified about the surgery.  I had a wondeful neurosurgeon in Philadelphia, and awoke from the surgery spasm-free.  I don't want to minimize the surgery.  It was tough.  I felt awful afterwards.  I was dizzy, nauseous, and in pain for a few weeks.  I live alone, and luckily, my friends and my son came and helped me.  I needed a lot of help!  I could not drive for 2 months because of the dizziness.  I have not worked since the beginning of October when I had surgery.  I plan on returning to work in the middle of January.  I still have ringing in my ears but it is improving.  My left eye no longer closes when I smile, talk, or chew, and the spasm is completely gone!  I feel great!  Talk to a neurosurgeon about MVD.  You need to find someone who has performed the surgery and is an expert in the field.  If you cannot find anyone let me know and I will ask my neurosurgeon for a recommendation.  Do not waste time with Botox!  Good luck!

    Sue 

    • lynne85105
      lynne85105 sue15958

      Posted

      Hi Sue, sounds like you are doing well...it is a long road back. I had my MVD 17 weeks ago (3rd Sept).... I'm still not back on planet earth.

      i have lost 100% hearing in op. side with LOUD tinnitus, it hasn't let up since waking from anaesthetic. I'm still dizzy and out of balance. Only just started to drive to shops close by. I thought I would be ok by the 4 month mark. MVD is the only answer to hfs but it is really scary, I took the chance for a better quality of life sooner rather than later but at this stage I'm feeling like I made a big mistake...I just have a new set of problems to deal with.  I'm looking forward to feeling great...2015 can only be better

    • sue15958
      sue15958 lynne85105

      Posted

      Hi Lynne,

      I am starting to realize that it is a long road back after MVD surgery.  It's so good to hear from someone who is in the same boat.  I tried to act like everything was fine for friends who were coming to my house to offer help.  I live alone and didn't want to inconvenience people.  I quickly learned that I did need help, lots of help!  I'm sorry to hear that you lost hearing in one ear.  That must be awful.  I knew that was a possibility.  Isn't the loud tinnitus annoying?  My dizziness is almost completely gone.  I only get dizzy if I do something strenuous.  I'm still glad, though, that I had the surgery.  My quality of life was minimal.  I never wanted to go out and dreaded seeing people.  My mouth drooped on the left side and I could not smile.  My left eye was constantly closed or twitching.  I had no self-esteem left.  Since surgery I feel better about myself, although I still have a long way to go.  Like you I'm looking forward to a better year in 2015.  I wish you all the best!

      Sue

    • camas
      camas sue15958

      Posted

      Sue & Lyne,

      I'm sorry about the results of the complications from your surgeries.  When I decided to have the MVD surgery I knew that there were chances of serious complications from an MVD including: death (0.1%), stroke (1%), hearing loss (3%) and facial paralysis/weakness (0.5%).  But, I had suffered so long from HFS/Trigeminal Neuralgia that I didn't even think twice about the possible complications.  During the 8+ years there were several times that I considered ending it, but I didn't because of my two daughters.

      When I first began to develop the twitch I didn't have pain. When the twitching became worse, it wasn't gradual it was very rapid.  As it became worse, so did the pain.  That is why I asked the neurologist, that I was seeing, what the long term problems that could occur if we didn't cure the twitching?  I wanted to know if the longer the twitching continued the more chances there would be of permanant nerve damage.  The neurologist did not answer my question.  The neurologists never told me, "Without surgery HFS can only get worse."  As I said in an earlier post, "When the surgeons found where the artery was putting pressure on the nerve a mass had developed."  Just like a river or a stream, when an artery is blocked it will try to find a way around the object that is blocking it.  So, if my neurologist explained to me the chances of my HFS getting better and told me that there was a surgery to relieve the pressure I would have had the surgery as soon as I was diagnosed.

      Through all of my research, doctor visits, and disussions, I have never heard of a doctor tell a patient that the medications (botox, gabapentim, phenytoin, etc.) could eventually cure HFS/trigeminal neuralgia.   

  • camas
    camas simon71981

    Posted

    Simon,

    When is the last time that you has an MRI?  Just my opinion, but if you haven't had an MRI recently that is where I would start. 

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