how do you live with facial paralysis?

[calimama]

hi,

I am "happy" to weigh into this debate. Not that i am happy to have paralysis, but that some good can come it (helping others with information).

I agree with much that said been said by other posties here. My situation is slightly different because i have double vision (since surgery). I have been wearing an eye patch since leaving the hospital. The good thing about the patch (and there is not much) is that my eye is well protected from the elements, dust, flying whatever, my baby. I wear it pretty much all day long. I have a few too... now a nicer one (see my eye patch heaven post) but also some of the black drug store ones. I wear the black ones in the shower. This means i don't have to use baby shampoo (i have longish fine hair so nice to use good shampoo) and i have never had any trouble with water in the eye. I do make a point of keeping my head tilted back just in case, but the patch really helps.

I managed to read 2 novels and a lot of magazines the 3 months i was recovering at home, so while reading and computer work might not be fun with one eye, it is doable, and as with many things you adjust. I have never had a headache from this.

I too keep my AN affected eye well lubbed with drops and ointment. I was only using ointment at night but then my opthamoloigst said it's better than drops so good to use in the day too, if you can handle the blurriness - which i can since i keep it covered anyway. Really really important to keep that eye protected, lubbed up. While the paralysis may be temporary (trusting the graft works out for you) that eye is forever so take good care of it.

I tape my eye at night. I think there are some who frown on this practice, concerned that the eye will open and the tape will stick and damage the cornea. I use paper tape which is reasonably gentle to pull off (slowly, carefully) but hold well enough. I am always a bit paranoid that the eye will open with the tape, but have had the right eye many times in the night (i have an 18 month old) and the left eye has never popped open under the tape. I find it very secure. And i keep my eye open all day (except for manual closing from time to time to spread out moisture) so i really like to know that it is closed for the night. I gues your eye doctor will advise you on what to do at night. There seems to be many solutions.

I also had trouble eating and drinking in the early days, weeks. But things loosened up a lot and i am pretty good these days. I do chew mostly on the right side. I should work on using the left more. I can do it, easier with some foods than others, but it is a little tricky - amazing the things we take for granted! I can now drink well from a cup (and wine glass!), but still find bottles a little tricky.

I think once you get past the first few weeks, and early month or two, you get used to it, and adapt. It still has challenges, but so long as your eye is doing well (my opthamologist this week tells me my cornea is in great shape), the rest has been more of a social challenge. Family and friends are all supportive, understanding. I am not very concerned about strangers, but find it a bit harder to be back at work and have to explain to people what happened. I also found it tough to go to the park with my babe and meet other moms... most people won't ask what happened. Anyway, it does get easier over time.

I am 39 and find it hard after all these years of looking pretty good, to be as i am now. I see you are only 25, i think it would be harder to be younger and have to do with this, but you sound like you are getting prepared as best as you can and i am sure you will discover that time will sort things out and you will do great. I am sure the graft option will help a lot. Any with eye weights, plugs etc. there are means to deal with many of the issue. The first few weeks were the toughest, but at 3 months, I am doing ok and know that all i can do is wait. So i am happy and patient and taking one day at a time.

Good luck to you. It will be fine.

Trish

[sgerrard]

Sara, Kay, Lori, David, Trish: you guys are amazing.

I don't know how you manage to do all these things, but your courage and good spirit is truly inspiring. More power to all of you.

Steve

[Kaybo]

Steve~
It's really not that big of a deal or that we are some super people that deal better than others - for me it was either go on with life or hide in the back of my closet - I had to much to do to stay hidden (plus I might have gotten lost - my closet is always a wreck!!)!!     Thanks for your sweet words!

K

How is that knitting coming???   

[saralynn143]

I agree with K, we just have to do what we have to do. I know my husband was happier yesterday that I agreed to go out to dinner than he was that my nose moved!

But thanks, Steve, for the compliment.

When I first started investigating my surgery (microvascular decompression for hemifacial spasm), the second surgeon I talked to, a young maverick eager to get his hands on my brain (in his own words), warned me that in his opinion the risk of facial paralysis should be a major factor in my decision. He said that women who take pride in their appearance take that harder than deafness (again his words). I dismissed his comments, because I truly did not believe it could happen to me. Now of course I see exactly what he meant. When I went in for my audiogram, I told the audiologist that I would rather have my face back than my hearing, she nodded in agreement. I think she had heard it before.

It's hard, and there are good days and bad days, but I am thankful that I am overall healthy, my hearing is bouncing back, I do not have balance problems or headaches, my family is very supportive, and I am now seeing some signs of facial improvement.

I think hrissy is wise to be preparing herself prior to surgery. I truly hope we have helped her, at least a little bit.

Sara

[mimoore]

I really want to write more but am so hard pressed for time today but had to let you know that I use swimming googles in the shower. They work FANTASTIC. They are clear and I put the strap way down in the back near my hairline so I can wash my hair well. Most recently I have been removing it at the end to wash my face and it feels so nice (I hold my eye closed). Anyway talk to you soon friends!
Michelle 

[Debbi]

Sorry, I am a little late weighing in - took the weekend off and am just getting caught up with everyone!

I can't add a whole lot to what others have said - we all go through most of the same frustrations and issues with facial paralysis. 

Eye care is probably the most frustrating thing to me.  It took me awhile to find the combination of drops and gels that works best for me (in my case, Refresh Celluvisc Sensitive and Refresh PM).  I have found that my brain has adjusted for the constant bluriness in my right eye and most of the time, I am not all that aware of it.  I read a lot and also do a lot of work on the computer;  I do notice that I get more tired after a couple of hours on the computer now, but other than that, I am fine.  I have the external eye weight (Blinkeze) which works fine for me and allow me to use far less drops during the day.  Also, when I am wearing the Blinkeze I don't have to cover my eye at night, which is nice.  When I don't have the Blinkeze on, I use a sleep mask, lined with Glad Press 'n' Seal (my favorite kitchen accessory!) and it forms a nice soft moisture chamber for my eye.  I also use a lot of gel at night.  My cornea is fine.

I enjoy being outdoors and had to be very careful for the first few months with expousure to sun and wind.  Now, I never leave home without my oversized sunglasses!  Also, i purchased a fashionable pair of the pink onion goggles (thanks again, Sara!) which I can use at night if I am outside.

Eating and drinking haven't been too bad.  I can drink out of a cup or bottle as long as I am careful and don't take big gulps.  I do have to cut food into small bites.  And, things like pizza and sandwiches have to be cut into bites as well.  If I try to eat a sandwich, I end up with part of my lower lip in my mouth, which isn't pretty!

My speech is fine, unless I get really tired.  The P, B, F and M sounds still require a little concentration, but no one would probably notice.  I did see a speech therapist a few times for some help with this.  Tongue twisters are great - Peter Piper picked a peck of pickled peppers......

The emotional challenges of not looking the same can be trying.  I still experience moments of feeling very insecure and self conscious, but far less now than at first.  The worst thing, for me, is seeing pictures of myself.  You can't let it define you, though.  I am still the same loving wife, daughter, friend, and colleague as before - my smile just doesn't look as good. 

I wish there was a way to make this road easier, but I think we all have to find our own way to do this.  I will keep you in my prayers!

Debbi

[Kaybo]

Debbi~
Very well written...
K

[LADavid]

Debbi
I agree with Kay.  An excellent account.

And Steve, thank you for the kind words.  I can only reinterate what Kay said, I don't consider myself some super person for dealing with it.  You have a choice -- make the best of it or let it govern your life.  It has certainly changed my life but I'm not going to let it ruin my life.  And at least, I have some movement -- maybe the wrong movement -- but that is in the process of being corrected.

Best wishes to the rest of you who deal with it.

David

[hruss]

hi all,
thank you for the long thread.
i talked to a doctor in Hannover, Germany clinic today and he told me that putting an eye wight is rather old fashioned. Instead they inject botox or sew the corners of the eye.
I wonder how "old fashioned" this technique for saving one's cornea is since in USA i have live examples of how well it works - according to your words it really relieved your eye.
Has anyone heard of the botox injections and sewing of the corners of the eye? How do they work?

Thank you,
Hrissy

[hruss]

Further to my request, i would like to ask what synkenesis is. how do you develop it?

Hrissy

[jazzfunkanne]

my consultant told me the weight is the modern way of doing things, and says it doesnt look good if you get the eyes sewed  together,  synkenesis  is cross wring of the facial nerves, eg. eating and your eye closes at the same time.

[Kaybo]

Hrissy~
I just went to a ocu - plastic (eye/plastic) guy this afternoon.  We are taking my weight out, letting it heal and then putting another in.  My Dr. in Baltimore is definitely on the "cutting edge" of medical technology and he is the one that put this weight in so I don't think it is "old fashioned"!!

K

[lori67]

It seems like the opinions on treatment of eye issues varies by country and by state!

My eye surgeon doesn't like to do eye weights as long as you have a good Bell's reflex - meaning your eyeball sortof rolls upward when you try to blink as a protective mechanism - keeps your cornea a little safer.  If for some reason you don't have a good reflex, he uses them.

I have a good reflex and also have very thin skin on my eyelids, so he didn't think it would be a good idea for me to try the weights.  Instead, I had a lateral tarsorrhaphy - where he put a few stitches in the outer corner of my eyelid.  My AN eye was wider than the good eye right after my AN surgery and the tarsorrhaphy (that's a hard word to type!) helped to make them look more even.  It also helped to be protect the cornea a bit.  I also had my tear ducts cauterized to help hold the moisture that I was producing in my eye.  You can't notice anything different about the eye with the stitches in it, it actually looks more normal now that it did when it was really wide!  I have been very happy with it - I don't use drops during the day, so my vision is not blurry anymore and I only use the gel at night.  I've seen some pictures of people who have had more of their eyelids stitched than I did and this does make that eye look a little different, but can also decrease your peripheral vision.

As far as the synkinesis - sometimes when the facial nerve comes back to life, it doesn't always rewire the way it used to - so the part that used to innervate your eyelid might now be wired to make your upper lip move - so when your brain tells your eye that you want to blink, your lip moves instead.  When I try to blink, my cheek muscle tightens up and when I try to smile, my eyebrow moves ever so slightly.  PT can help you work on these areas to re-train your brain and your face to do what you want it to do.  Unfortunately, some of our brains and faces don't seem to care what we want and they just do their own thing anyway!  

Lori

[saralynn143]

Hrissy -- I had botox injections one time for hemifacial spasm. It rendered me unable to blink for two months. Related to facial paralysis: botox can help with synkensis in the eye area, but I don't see how it could help you to blink. Just doesn't make sense.

My ophthalmologist said that he could stitch the corners of my eye, but he did not think it was a very good approach. I think it is a more old-fashioned approach than implants.

Unless my eye weight causes serious problems after my eyelid function returns (I am thinking positively here), I am leaving it in just in case my hemifacial spasm returns one day. In that case I would take botox injdections again because I am definitely not going to have another microvascular decompression. This one caused too many problems. And if the botox freezes my eyelid like it did last time, I'll have the implant to help me blink.

Can you get a second opinion?

Sara

[ckhegrat]

Hi All!! I don't post here very often but I just wanted to add to these posts.

Well I am a 10 year ANer.  My surgery will be 10 years on 4/6/1999.  I was misdiagnoised (sp?) for 13 years before I knew I had a AN.  My AN was completely wrapped around my facial nerve and it left me with total facial paralysis.  Although I knew this would probably happen, I felt after everything I read, that within a year it would return.  However, it did not.

I have had the nerve transfer from the nerve from my leg and by 9 months I started getting movement.  I then had the gold weight put in and a muscle tightened  to lift my droopy mouth.  I do have movement and my mouth is somewhat symetrical at rest.  The nose fold on the good side is deeper then the bad side.  This shows up a lot in pictures and needless to say I don't like pictures very much.  I have a very small closed mouth smile (but it  is more noticible in real life then in pictures).
I deal with the eye problems and chewwing problems etc like everyone else.  But I have lived my life regardless of all these complications.  I have always felt that I need to hold my head up high and not let this define who I am.  This is not always an easy task though.  It has it's moments of saddness but I have survived and I am still surviving.

I make sure I have a stylist hair style and color, always wear makeup and dress in style.  I don't want to be defined as "poor Kim" but as "look at that lady" she looks like she must of been through a lot but she is still living her life the way she wants too.

Be who you are and hold your head up because I feel people will not look at you because of any facial issues but as a confident person.

Anyway, I am trying to bring myself up a little because I just came across some old pictures of me and it made me sad that I can't look like that anymore.

Thanks for listening everyone.

Kim