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had a crainiotomy for HFS 6 still dizzy

Posted , 5 users are following.

dirck38123
dirck38123

I had HFS for about 18 months and my MRI identified a tangle of blood vessels wrapped around the 7th and 8th nerve. I opted for surgery to put a Teflon stint between the nerves and the blood vessels. Overall the surgery was a success, which I had done on July 8th 2014. My face still spasms occationaly but it is much better. The reason I am here is because I have been very dizzy ever since my operation. The first week I could not even walk nor hold any food down because I was so dizzy. My surgeon said I got a pocket of air in my brain and it would absorb after a couple of weeks. I also had a little spinal fluid leak into my ear, but the leak had been repaired. I guess what I am looking for is this normal to still be quite dizzy 6 months after this kind of surgery? Is there any things I can do to make it stop? Anyone else having the same trouble? Thanks for taking the time to read this, any advise is welcome, Dirck58

1 like, 6 replies

6 Replies

  • lynne85105
    lynne85105 dirck38123

    Posted

    Hi dirck,

    So sorry to hear you are still dizzy, it's horrible!!!

    i had my MVD 2nd sept 2014 (4 months ago today)

    i'm still so dizzy and out of balance I can't get on with my life...

    I'm in such a state over it as I expected to have approx a 6 week recovery time as most. My neurosurgeon told me to walk in soft sand ( as I live on the beach) which I do every day. I have read on the vestibular.org web site to keep moving. They also mention balance particular exercises to do. They do work, as I have better days then I'm back just as bad as I was it's been 2 steps forward 1 step back for months.

    I also lost 100% hearing on op side and gained the loudest traumatic noise (tinnitus) since waking from op. Without one moments relief.

    Usually loss of balance goes with hearing loss. Have you any hearing loss?

    All I can say is hang in there as there is no other option. Try to excerise out of it.

    my neurosurgeon assures me my balance will come back but can't say when.

    if you can't find balance excerises let me know I can write some out for you.

     

  • Roseann
    Roseann dirck38123

    Posted

    Hi Dirck

    Congratulations on your successful MVD, but so sorry that you continue to have dizziness.  Sounds like you have had some bad luck with this surgery with having CSF leak as well.

    I am also a member of the Facebook Hemifacial Spasm International Support Group and have heard of members being dizzy after 6 months, though it is quite rare.  It's my understanding that those who continue to be dizzy are referred for physio exercises which can be helpful.  I think I would be asking for further medical help with this because it must be very restricting on your everyday life.

    If you don't mind me asking, where did you have your surgery?  The Facebook group keeps a list of all the surgeons and it's good to add new names, with outcomes.  

    Wishing you less dizziness as the new year progresses.  Very best wishes, Roseann

    • dirck38123
      dirck38123 Roseann

      Posted

      Hi Roseanne, I had my surgery at Salinas Valley Hospital, Dr. Halimandaris, great surgeon, but I really didn't fully know how life changing the surgery would be. Not having facial spasms any longer is great. I still have them when I get stressed but mostly its good. I did lose my hearing and had tenitis for a couple of weeks, which I didn't expect.that is all better though and I haven't had any reoccurrence. I do walk about 5 to 7 miles daily at my work which doesn't help with the dizziness. I notice it gets worse as the day goes on, or I do some heavy lifting, which I really don't avoid. I just don't understand why I can't get any answers as to why I have been dizzy. I have had lots of tests and nothing has given me an explanation. At first I was told it was because I had air in my head from surgery, which should be all gone by now. Anyway life is good, and I will continue to keep a good attitude. One thing I have learned is that it could be much worse. I feel very fortunate to no longer have the spasams and can live life knowing ho lucky I am. I hope the best for everyone, and we will all get through this together.
    • Roseann
      Roseann dirck38123

      Posted

      Hi Dirck

      Thanks for telling me about your surgeon etc.  I am guessing Salinas Valley is in the US?  Sounds like you may be on to something when you say the dizziness gets worse as the day goes on or when you do heavy lifting.  I wonder if your employer would consider putting you on light duties for a while to see if things improve?  Life is so much better without the spasms, but it could be even better without the dizziness too I guess.  Hope you can find some answers..............   All very best to you.

    • ruchishobhu
      ruchishobhu Roseann

      Posted

      Hi everyone  ..I'm staying in dubai and have been  suffering from hemifacial spasm and twitching on my right eye and face   since last 6 years ....going around neurosurgeons and eye specialist with no satisfying answers ...did Botox 5/6 times ...makes my face asymmetrical for 30or40days ....can anyone please suggest good neurosurgeon that can perform surgery ...specially near india or UAE ...sorry I'm not good in computers ...so not sure which site to go to
    • Roseann
      Roseann ruchishobhu

      Posted

      Hi Ruchishobhu.  I am a member of a number of HFS forums but have not yet heard of a good surgeon in either of your preferred countries.  I am not sure what insurance you have or what funds you might have, but, if you want the best surgeon he is called Dr Sekula in Pittsburgh, USA.  But he is expensive!  I live in the UK and had surgery with Nik Patel who operates out of the Spire Hospital in Bristol.  He would charge around £18,000 for the surgery which is a lot less than Dr Sekula and he is very good.  He cured me.  All best wishes.
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