Bells palsy help

[Geme3]

Hi I'm new on here and I've had BP for over 5 yrs from when I was pregnant with my first daughter.I'm looking into the procedure(cross facial nerve graft)I'm from the uk from Leeds. but I'm not sure where to be reffered and which doctor to see. Any help would be much appreciated thanks.

[Bramleyboy]

I think there is a centre that offers advise in or around Yorkshire that I found on Google one time. Specialise in facial palsy I think.

Doctor Kannan based at queen Victoria hospital in east grinstead did my op in November last year. A bit of a trek for you but they are specialists, not a regional general hospital.

I was referred there by letter from a local hospital specialist that couldn't help me further.

[N1man69 in reply to Bramleyboy]

did you have the nerve and muscle graft or just the nerve?

[Bramleyboy in reply to N1man69]

Just nerve graft + fat taken to provide warmth for nerve from groin area.

[eastseventeen in reply to Bramleyboy]

I am seeing same Dr at East Grinstead soon. Let us know how the procedure goes for you as it settles after the op. Best wishes for making good progress

[Bramleyboy in reply to eastseventeen]

How did your op go with him? I had a few things happen that I wasn't expecting (can give details but maybe not on public forum) but am through it now and just waiting for nerve to start growing hopefully.

[Bramleyboy]

Some information on a support group in East Grinstead, related to my previous post and I've also included the notes from their last meeting which I just happened to get by email shortly after replying to you.

Queen Victoria Hospital NHS Foundation Trust

East Grinstead, West Sussex, RH19 3DZ

For therapy appointments and any other enquiries please call 01342 414004

For clinic appointments please call 01342 414141

For information on facial palsy please visit the Facial Palsy UK website

facialpalsy.org.uk

Notes from last meeting:

•We had a wonderful, thought provoking discussion which everyone was involved in – here are some snippets;

•the frustration of the ‘goalposts changing’ wanting to achieve one thing, getting there and then wanting more!

•Initially FP is scary and isolating

•Feeling of pressure to get better

•Comparing yourself to ‘so and so who got better after 4 weeks….’ And finding yourself a failure in comparison

•When you start to recover you still feel different internally even if you don’t look different externally

•You know every part of your face and see tiny differences in how it used to be

•Your face can be stiff, ache everyday, eye can be dry/itchy

•You can feel that no-one understands so it can be difficult to integrate with everyday life

•Frustration due to lack of empathy because you look ok even though you don’t feel right, you look ok but are suffering underneath

•Feeling of needing a routine and panicking if plans change

•Noisy eating and difficult eating with mouth closed

•Sometimes people feel like a ‘fraud’ which is upsetting

•Its hard for others to understand – they cant feel it in cheek, jaw, ear every minute of everyday

•Feeling like don’t have a right to be upset as others are worse off but cant help it

•Battle between feeling grateful for some recovery and angry for getting FP in the first place

•Tinnitus can cut out your hearing when you’re eating

•One eye doesn’t cry anymore

•Adjusting to a new ‘normal’ is really hard – its difficult to accept ‘this is as good as it gets’ and that FP can be life-changing

•Hard to cope with not getting something back e.g. balance

[N1man69]

See your GP and ask if he can refer you to a consultant who specializes in this. I found mine myself via google

[lorraine-t]

Or contact Facial Palsy UK, [e-mail] - we can give information about the nearest specialists to you and support you too.

[Sophie1923]

I'm from Doncaster, but have just had my first appointment with a man named Dr Paolo Matteucci who is based at Castle Hill Hospital it Hull. He says he can help me with mine as I've had mine almost 3 years (I'm 19) he can offer cross facial nerve graft or a Labbé. He's got some fantastic results of the Labbe, worth a look into.

[Geme3]

Thank you, for the help and advice,much appreciated. Im definitely going to look into it.

[valeriegilling1]

Have you had your op and if where l am from Leeds and trying to get Botox for my twitch. Did you join a group who could help please