Ramsey hunt syndrome: Was stricken with the... - Facial Palsy UK

Facial Palsy UK

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Ramsey hunt syndrome

ksmcquade profile image
7 Replies

Was stricken with the virus in 2008. Unfortunately I was misdiagnosed and my 7th cranial nerve in my face is dead. I have complete paralysis on left side of my face. Is there known treatment out there for this ?

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ksmcquade profile image
ksmcquade
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7 Replies
claudine-g profile image
claudine-g

I'm not a doctor this is just my understanding I have complete left side paralaysis too from rhs from what I gather there is no magic pill but there are surgical options you can have eye surgery to help you eye close where they insert weights and tighten the skin I am having this done on the 20 march there are also surgerys like the labee or facial nerve transplant which are quite invasive and really only aim to give you a symmetrical smile I don't know whether I would put myself through them sorry I couldn't give you better news x Claudine x

claudine-g profile image
claudine-g in reply to claudine-g

I forgot to say you should get your go to refer you to a facial nerve clinic I had rhs too it's horrible it has also affected my balance and vestibular nerve

Anotherlook profile image
Anotherlook in reply to claudine-g

I have had the weights changed 3 times. I regret doing it the first time.

Good Luck

Chantev profile image
Chantev

Hello please do not give up hope, I had RHS in 2007 and was told that there is nothing more that can be done for me. Facial Palsy Uk helped me to source out where I could find support. I attend the John Radcliffe Hospital where they have a Bells Palsy special unit and Facial rehabilitation therapy.

If you can look into it and contact them to see if similar facility is available near you and get your GP to refer you. I know what you are going through and I would urge you not to give up without trying. They have managed to give my face some sort of symmetry without surgery only with Botox, its worth a try.

Hope you will find a solution.

Best wishes

ksmcquade profile image
ksmcquade in reply to Chantev

Thank you Chantav

Kim_Kira profile image
Kim_Kira

I too have had my 7th nerve destroyed. I see the eye plastic surgeon in 2 days to Look at having my lower lid tightened. That way my eye will hold the lubricating fluid. I am being referred to the team for a facial nerve transplant. The way my neurologist looked at was we could wait, but he is not sure the muscles in my face can wait the 2 years it will take to see what recovery we get.

Anotherlook profile image
Anotherlook

I was Diagnosed with Ramsay Hunt in 2014. I still have the facial paralysis. I've had several surgeries on my eye. It wouldn't close. The doctors say the nerve damage is permanent.

I try to stay positive but it's starting to take a toll on me mentally. I never entertain the pity pot though.

Sure would be nice to drink without a straw. Or go out to dinner without my eye constantly running water. Or eat without food falling out of my mouth.

The Glass is still Half Full...

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