RHS facial paralysis since Decembhe - the longer it lasts the less likely it will go?

I had RHS on the 16 December and the left hand side of my face is still very paralyzed. My eye shuts now but doesn't blink and i find i have to tape it shut in the day sometimes as it gets sore even with the hylo forte eye drops. i have a referral to the facial nerve clinic but there is a long waiting list I am worried that if I dont do any exercises or see a doctor soon I will miss the boat and my paralysis will have less chance of going but I dont want to do any exercises unless i know they are the right ones to do. I saw the tropical diseases doctor that I saw in hospital ( i had to go to hospital as it caused viral meningitis as well caused by RHS ) and he said that 85% of people who get better from paralysis get better in the first three weeks so I am a bit worried that this isnt going to go away. I am thinking maybe I should try acupuncture or maybe I should see someone privately - can anyone recommend anyone in London? i guess I should feel lucky apart from my eye my problems are mostly cosmetic - at least the vertigo and the pain has gone and i am not throwing up when i walk anymore - although my balance is still off - and I am lucky my hearing has come back.

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  • Hi. If you would like to contact Facial Palsy UK using

    support@facialpalsy.org.uk we can give you some help, or have a look at our website

    facialpalsy.org.uk

  • Hello,

    I'm really sorry to hear about what you are going through and the worry it is causing you.

    I'm a 34 year old female and I had RHS in 2014.

    I think you should wait until you've seen a specialist before doing any facial exercises. I saw a special facial therapist at the QE in Birmingham and she was brilliant. They have a facial palsy clinic there. My GP referred me. So the fact that you are going to a facial clinic is great news.

    I really think you should rest and try to recover from your illness and try not to worry. Easier said than done I know. I also had to tape my eye shut :(

    If you would like to ask me anything I would be pleased to help you.

    Best wishes, Elisa

  • Dear Elisa,

    it is so to hear from someone else who has had RHS. I finally got my referral through for the facial nerve clinic but the appointment is not until the 10 may!!!! I hate just sitting around not doing anything until then in case something might help so I got the name of a facial physio from the facial palsy association and i am seeing her privately on Monday. I will see her until i finally get into the clinic.

    How is your facial palsy now - did you recover - do you still have to tape your eye? i find i have to tape it in the day periodically too as it gets too sore being open for long periods even with the hylo forte eye drops. I also tape it when i go out as i am scared of stuff getting in it because i cant blink or it getting sore when i am out and not being able to tape it. I have another appointment at morefields on the 6 march.

    Did you loose your hearing and get the vertigo as well? My hearing came back after they gave me the second dose of steroids but the nausea was horrible I got nausea and vertigo everytime i walked when i first came out of the hospital so I had to go back in for another week while they sorted that out. I don't feel nauseous anymore but I am still quite wobbly when i walk - i tend to veer to the left the side my palsy is on.

    If there are any hits tips or advice you could give I would love to hear them. I have been looking at the facial palsy association web site a lot. It is a great site.

    Thanks so much for replying to my post. BTW i am 43 I live in london with my husband and have two girls aged 14 and 12

    wishing you all the best

    claudine

  • I'm 3 months into this. I have the vertigo, non blinking eye, hearing loss and poor speech as my face remain paralyzed. I'm told I have a severe case of RHS.

    I'm considering surgery first to my eye, then to my face. One option that has been offered is to take the nerve from my tongue and insert it to my face to get it to move. I will have to sacrifice 1/2 of my tongue. So it's either my face that atrophies or my face. Not much of an option.

    Has anyone else heard of this?

    I stand potentially to loose my job because of the vertigo. I am an RN.

    The neurologist tells me it will take 2 years to see how much healing I get.

    I've looked at the information on excersizes and it seems very indifferent. Some say the electrical stimulation is good, others bad as it may interfere with the healing. I do the manual execsises every day.

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