Moving from W&W- London England

[Chritine Upson]

Hello there,

I am a new member to this Forum and not really to sure how it all works yet. I have a facial nerve neuroma and would welcome the opportunity to talk to somebody else with this very debilitating illness.
I am currently receiving regular MRI scans to check the growth of my tumor which is described as large! To remove my tumor would cause me to have a life changing facial palsy which at the moment I want to avoid.
My surgeon suggested I have a cross facial nerve graft to restore some movement to my face as I currently have little movement to the LH side of my face. I had the first stage of surgery in Sept last year and on April 20 I had the second stage of the CFNG. Its early days as yet and it can take around 6 months to get the full benefit of the op.
There are days when I feel so terribly alone even though I have a very supportive family. The uncertainty of this all is very hard.
I hope to hear from you soon.
Best regards
Christine / London, England 

 

[ppearl214]

Hi Christine and welcome.  I moved your topic here to start a new thread so others can see that you have joined us and can respond.

Many here from the UK that can help with answers for local inputs... and we do have some with facial neuromas that can provide inputs as well. 

Sidenote: Although I live in the States, my husband is from London... my inlaws live in Dorset

Again, welcome!
Cheers!
Phyl

[pjb]

Just wanted to say hi and you are definitely not alone and this is the right place to vent we all understand and hoping others will be chiming in soon as well. Sorry we all had to meet like this but it is good to know others know exactly how you feel and families are supportive but they just don't get it and we all need a different type of support as you are well aware of and sites like this is just one of them for support.


Best Wishes,

[james e]

You are never alone here. There is a little bit of a time difference, but someone is always around. My family is English and 10 generations ago, they immigrated to northern Virginia and received a land grant from Lord Fairfax. The original home still  exists in an area called Apple Pie Ridge.

It sounds like you are being treated, and I hope that all goes well for you. Keep us updated. You are always welcome to write a post just to have someone to talk to. Welcome aboard.

James...a good English name

[Chritine Upson]

Thank you to those that have replied. I had a few tears just to know that somebody has taken the time to respond..
Its a bright and sunny day here in England and I feel so sad that I dont feel bright and sunny too. I am trying so hard not to go down the depression road again and I guess there are many others who have good and bad days.
I am receiving such good care from Addenbrookes Hospital in Cambridge but how do you all cope on a day to day basis?
Although I was diagnosed with a Facial Nerve Neuroma over 5 years ago, its only been the last two years or so that my facial paralysis has been severe and hearing loss significant.
I look forward to hearing from you guys soon.
Take care
Christine

[Lou]

Hi Christine, bless you, it isn't easy, but I am so glad to hear( ha ha) that you are receiving great care. I am in Oxford and am under the care of the John Radcliffe. Keep me posted and let me know if I can offer you any help
Lou x

[SusanP]

Hello Christine,
I have never really went on any of these sites before but I was looking a couple of weeks ago because a friend was needing support with something she is going through and while I was on I googled myself...! I was diagnosed with a Facial Nerve Nueroma 12 years ago when I was only 29, and back then I didnt have a computer so I didnt look up any information, and I havent really had the desire to do so since. I am surprised by the detail people know about their nueromas, me I know I had it and now its out.
My operation saw three being removed from the left side, and for six months I had no movement at all... My operation was in the May of 2000 and even although I can hardly remember what I had for my tea last night I remember that in the first week of December of that year I felt a quiver by my mouth and gradually the strength came back over the next few months. It is I have to say compromised and I will never be able to give a big cheesy grin in a photo again and I will always need gel to put in my eye as it gets a little dry at times but I have learned to live with the huge change in my life. Like you I have a hugely supportive family but no matter how much they say they love you and that you look fine, you are the one who will spend a lifetime with your reflection and it takes a lot of adjusting... I am a stronger person today because of what I have gone through, and some days I am proud of how I have coped, other days I am angry that I had to. There are all the sayings under the sun but none are as simple as the fact that 'Life really is too short' I have several workmates who are going through some pretty huge stuff at the moment and perspective is a wonderful thing. You will feel alone, I still do some days when I get fed up telling people I dont want to be in the class photo when I know I've told them umpteen times before...!!!
This post is my first and a bit all over the place I'm sorry but you can't fit 12 years in a couple of paragraphs. I cant give you a huge amount in the way of specifics about the technicaltities of my op, just basic stuff, but I've a degree in the emotional side of it, so ask away.
I'm up the road in Scotland, not too far, the same time zone...!
I have thought about you a lot since I came across your post but had to wait a couple of weeks for 'admin' approval to reply.
Hope Today was a good day
Kind regards Susan