HFS

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Has anyone had sucessful surgery for this embarrasing condition? I have suffered for 3 years. I have botox but still have a twitch. So depressed with it and want it to stop!!

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  • Posted

    Dear June

    I had my surgery in October 2016 and it was successful.  At first I was really concerned about going through with such a major operation - what if things went wrong, would I be disfigured, it is not life threatening, honestly, I thought of everything.  But, the Botox never worked, neither did the medication and it was afecting my day to day life.  I was embrassed to go out, because I felt people were watching me, and being a Social Woker, it impacted greatly on my role.  My family stated that my personality had changed, I was always down and I decided - enough is enough.  I had a great Surgeon (Mr Kerr) at John Radcliff Hospital and he has practically changed by life.  I am so happy and try my best to always be positive.  The spasms went after 6 weeks, completely.  The treatment at John Radcliff was exceptional and the aftercare great.  So June, you really need to think, can I live with this for the rest of my life, or do I go for the operation, only you will know?.  All the best, June, but I have never been happier.  I hope this helps.

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    • Posted

      Thanks for that. I am considering surgery as it has taken over my life and personality. Were you referred via yr consultant? I asked mine for the op and he said no because my scan had shown a "loop" .I'm due my botox on Monday and will discuss with my nurse again.

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    • Posted

      My first scan showed nothing at the first hospital, and I continued to have the spasms, they actually got worst.  I was not happy with the results and persisted (I had a very good G.P) who then referred me to John Radcliff Hospital, where I had another scan and Dr Kerr detected something and explained to my husband and I, as best he could, the pro's and con's of the operation.  He was brilliant, and I made the overall decision to go ahead with the operation.  I am not too sure, June, but I believe I had a loop and the operation went ahead, but at that time, everything went over my head so I cannot be sure if that is correct.  You need to have further discussions with your Consultant and get him/her to explain more about the 'loop', as I do not want to give you advice on that.  However, try and stay focus and ask as many questions, until you feel satisfied.  I did try holistic remedies - acupuncture etc, which did not work, but may work for you.  All the best.  Cynthia 

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    • Posted

      Remember my first scan did not show a loop, so I had another scan at another hospital and this one showed the loop on the scan, so be persistent.  I believe it depends on the experience of the Consultant, really. Take care.
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  • Posted

    Yes, I also had surgery in 2013. It is a debilitating condition and unrelenting. It only gets worse. Drugs/meds and Botox don't stop it. Botox may mildly help mask it. It didn't in my case. I had HFS for nearly six years before I finally had the surgery (I'm a Brit living in Canada). It got to the point where it consumed me and I was constantly embarrassed...and exhausted by it!

    Do yourself a favour and start the process for having the surgery (which may take a while to get scheduled). It is the only fix/cure. Yes, as with any surgery, there's an element of risk. It was a risk I was willing to take...and I suspect you are. HFS gets you to that point!

    Mine was successful. Everyone recovers differently. Some may have some post-surgery concerns but will get over them. Please research what the possible risks are...I believe the main one is deafness in the ear, since the aural nerves are so close. My surgery left me with a problem swallowing/eating, and I had to stay in hospital for a week to be sure I could swallow/eat. Following that week, I could manage liquids and eventually (3 weeks?) back to full normality. I wish you much sucess in your deliberations.

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