Anybody share my story?

[HARRYPOTTER]

Hi Everybody

My name is Linda and I am a new member. I had Ramsey Hunt Syndrome and Bells Palsy 17 months ago and still have facial paralysis on one side preventing me from blinking and closing my eye fully. I suffered exposure keratitis at the onset of my illness and have been struggling with my eye since. I have a constant routine of lubricating and covering without any real prospect of further recovery. Has anybody else a similar story, please?

Thanks everybody.

[kakinda]

Hi Linda,
I don't think you'll find many people just like you as I won't find many people like me here. I've only met a case like mine once and I know most complicated cases here in France ! (we meet at the same doctors' appointments). I have a severed nerve (well 2 actually) so I guess we do share some common DE features... and I do know some other cases related to facial nerve damage closer to yours, i.e. Bell's palsy (mine is the 5th facial nerve, so from what you said, I imagine your situation to be slightly different) and yet I believe we face some common challenges. Never heard of Ramsey Hunt before...
Do you have still ulcerations (sounds like you have constant exposure keratitis or is that over)? If not, I believe that you might consider asking if scleral lenses wouldn't help you to manage your situation... and possibly taping your eye (with gel or ointment) at night. Are you doing that?
What have you tried so far?... let's us know a little bit more and maybe we'll have better suggestions.

[HARRYPOTTER]

Hi Kakinda

Thank you for your reply. Yes, we do seem to share some common ground. Thank you for the advice about scleral lens. This is something I have just started to investigate. I lubricate with ointment and cover with a shield and either wet bandages or cling film at night. During the day I constantly lubricate with drops. Thank you again and speak soon. Regards, Linda

[Lucy]

Linda, have you had any advice from the dr's about your Bell's Palsy? I know sometimes it can get better, but a year and half seems like it's past the point of getting better spontaniously.

I worked with a woman who had Bell's Palsy and hers got better over a period of a few months.
Lucy

[kakinda]

I just thought of an additional thing they used to do for Bell's palsy patients: add a little gold weight to the upper lid to avoid having the eye constantly wide open.
So maybe investigate/discuss that as well when considering scleral lenses. Maybe i can help to get you to in contact with scleral experts in France or the UK (or maybe just look for Ken Pullum sclerals on the Net).

[Rebecca Petris]

We have not heard from many Bell's patients here on the board but I get phone calls from them pretty regularly (usually about protective eyewear like tranquileyes and/or panoptx).

[HARRYPOTTER]

Hi Everybody

Thank you for feedback. Yes, I have been told I have reached maximum recovery for Bells Palsy. That I can live with but it is the effect on my eye that is my main concern. Thank you for suggesting Ken Pullman. I am going to contact him. Today I have received in the post from the US a lagophthalmos kit and a tranquileyes kit so looking forward to using both. As I cannot close my eye fully am I ok to put the lagophthalmos band over my eye or is there a danger of it scratching my eye surface?

Thanks again.

Best regards

Linda

[kakinda]

it's Ken Pullum not Pullman.

[HARRYPOTTER]

Thanks Kakinda. Have found his website. His clinic is quite close to where I live.

[kakinda]

Great if you can go and see him. You may also try to contact him via email in the meanwhile. He was always very helpful answering my queries about sclerals (some time ago...).
Best of luck for this important endeavour.