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Need advice on my next course of treatment!

Posted , 4 users are following.

sudders123
sudders123

I have been suffering with HFS foir the past 10 years and have had 2 lots of botox injections last year the scond being a double dose due to the non sucsess of the first. This treatment didnt work for me and the consultant I was under made me feel that I wasnt a serious case and surgery was a no go. My right side of my face is constantly twitching to an extent my eye now closes and my smile is distorted. My condition is worsening and dont want to be in another ten years in the same position but alot worse. I now suffer from headaches caused by straining my eye and feel this condition is taking over my whole life. I live in Shropshire UK and would welcome advice on a good consultant and what I should consider.

0 likes, 7 replies

7 Replies

  • Roseann
    Roseann sudders123

    Posted

    Hi Sudders, sorry to hear that things are worsening for you.  I have been a member of this and other forums for several years now and have concluded (without actual stats) that the best consultants for MVD surgery for HFS are:  Professor Eldridge in Liverpool and Nik Patel in Bristol.  You have a legal right to choose who you are referred to under the NHS Choices Legislation.  I do know of others living in Shropshire who have had surgery at QE Birmingham but they do seem to have suffered a lot of complications post surgery.  Some doctors have no idea of how debilitating and depressing and emotionally blunting this condition can be and will make light of it, whilst others, like Nik Patel, really get it.  You will lose nothing by being referred to a surgeon and you are not committed to having the surgery.  I would advise you to join the Facebook Hemifacial Spasm Support Group where you will definitely find others from Shropshire.  You will also find a very friendly group who will understand how this is affecting your life.  I suffered with HFS for 9 years before eventually having surgery with Nik Patel (who has a very long waiting list both for consultation and surgery by the way).  My surgery was thankfully very straightforward and I am now spasm free.  Happy to help you in any way I can and I hope you will be assertive on your own behalf.
    • sudders123
      sudders123 Roseann

      Posted

      Hi Roseann,

      Thank you for your reply. I appreciate your comments and I will when speaking with my consultant ask to be referred to one of the surgeons you mention. Liverpool would be ideal due to location. How long ago did you have surgery and how do feel being spasm free? I probably know the answer but we dont understand how hard it is to live with HFS until I suppose we feel normal again.

    • Roseann
      Roseann sudders123

      Posted

      Hi again Sudders.  The short answer to your question is that I feel elated and as if I have my life and personality back.  I had the surgery in June 2013 and whilst I still get the very occasional flutter, it is nothing.  You are so right that you don't realise quite how depressed and debilitated you've been until things return to normal.  The surgery carries risks but I would do it again in a heartbeat if I had to.
  • richard22091
    richard22091 sudders123

    Posted

    Sudders:

    My symptoms were milder than yours, but tests, including MRI indicated that I was definitely a candidate for MVD. I had it done in Pittsburg on Jan 13, and have been completely spasm free. BUT, the 48 hours post op were the worst hours of my life. My head felt like it weighed 100 pounds, retching nausea, and urniating felt like a 3 alarm fire. The nausea and burning urination passed after about 20 hours, but the headache  persists. Meds knock the headache pain scale from 10 down to a tolerable 3 or 4.

    very happy to be spasm free, but boy oh boy what a short term price to pay to get there. If your clinician is saying you are not a candidate for the MVD, based on the symptoms you describe, I would definetly get another opinion. 

    Good luck to you. 

    • sudders123
      sudders123 richard22091

      Posted

      Hi Richard,

      Thanks for your reply and sorry to hear of your issues since the operation. Amazing as you describe that you are going through so much but still glad to be spasm free. Can I ask if you know what you know now would you have still gone through with the operation.

    • richard22091
      richard22091 sudders123

      Posted

      Sudders:

      As I feel now at this point, yes. But during that 48 hour period that I described, I would gladly have backed up time to pre op and passed on it.

      just to clarify a point re burning urination: I had a TURP procedure (roto rooter) in 1995 to clear out a urinary path blocked up by an enlarged prostate. The prostate has grown back gradually and caused the staff some didiculity in inserting the catheter. The irritation to the urinary tract wall is no doubt the reason I had such terrible pain when urinating. If your prostate is normal, or if you are female, you will probably have normal pain free urination. 

      Best to you,

      Richard Evelyn. 

  • sue15958
    sue15958 sudders123

    Posted

    Dear Sudders,

    I suffered from HFS for 20 years.  I took the Botox injection route for 9 years and regret doing that.  It was a waste of time.  I had MVD surgery on October 10, 2014.  I awoke from surgery spasm-free. I live in the USA and had surgery in Philadelphia, PA.  My neurosurgeon was excellent. Soon it will be 4 months since my surgery.  It has been a tough recuperation but I feel great!  When I first came home from the hospital I had tremendous dizziness and nausea.  I had headaches, too, but they were moderate.  I took no pain medications while recuperating.  I also had loud ringing in my ears but that has diminished with time.  Let me say, it was all worth it!  I am slowly regaining my self-esteem and feel more like myself.  Having HFS was devastating to my sense of self-worth. I did not want to be in any social situations and avoided going out.  I found a neurosurgeon who understood completely about HFS and who was quite familiar with the MVD procedure.  I hope that you find such a neurosurgeon.  Having surgery is the only answer for those suffering from HFS.  I wish you good luck!

    Sue

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