regarding post-eye issues/sleeping:

[monaliysa]

I don't know if you remember me but my name is Mona Radlow and I had Acoustic Neuroma surgery about 5 years ago and prior to that I had FSR with Dr. Lederman. Ugh! I am having many problems, eye twitching, facial paralysis, general ugliness, and insomnia.  My eye doesn't close properly and therefore I can never sleep. I am in an adult facility now and they are administering meds to help me sleep but no matter what they give me, I can't sleep. If anyone has any suggestions as to what to do please get in touch with me as I am really suffering. My email addy is (on the email icon at left *) if you would prefer to reach me at that email addy. In the meantime I will check back here from time to time.
MONA RADLOW
(PLEASE NOTE: THIS IS A "STRANGER" TO THIS POSTING,ETC -  POSTING THIS FOR MONA.
HOPEFULLY, ALTHOUGH SHE COULDN'T POST ON HER COMPUTER AT THIS TIME,, SHE WILL BE ABLE TO READ ANY REPLIES - SO, PLEASE FORGIVE IF THIS IS POSTED IN INCORRECT PLACE -
'MONA'S FRIEND!)

* Forum rules say you can't show the email address in the post itself. I also made this a new topic.

[lori67]

Hi Mona.

I'm sorry to hear about the problems you're having.  And I'm sure not sleeping isn't helping matters.

One day while I was at a dentist visit, he told me about these sleep goggles that he uses at night.  They're sortof like those sleep masks, but they don't actually rest on your eye so you wouldn't risk injury to your cornea.    They were a very lightweight dark foamy material.  He said he uses them every night because he has to have it totally dark to be able to sleep.  I've never tried them because I haven't needed to, but maybe something like that would help?

I can try to get a hold of him this week to ask where he got them if you'd like.  Just let me know.

Lori

[monaliysa]

Dear Lori:
Thanks so much for responding. I am desparate already..would you kindly ask your friend where he got the googles. I am in NY so it shouldn't be hard to get them.
Thanks again.
MO
:-/

[lori67]

Ok, I tried to call my dentist to find out where he got them, but he's in some third world country doing free dentistry at the moment.  The girls in the office say he calls in, so they'll ask him when he calls.

But I did find these two things on line that might work for you and they're both on sale!!

http://www.travelgear.us/servlet/Detail?no=9&gclid=CIfE14OclpkCFQXGsgodemoIZw

www.dreamessentials.com/9_mask_dreamlite.aspx

Hope this helps.  I'll let you know when I hear about the other ones.

Lori

[nancyann]

Hi Mona:  I've got 2 options for you regarding sleeping at night, (since you need to be adding moisture to your eye at all times to prevent corneal ulcers), 

1.   the inexpensive (but a pain in the butt - I did it for over 1 year):   make a square of saran wrap to go just over your eyebrow & below your eye & tape all four sides (I apply a cotton ball with alcohol  around the area to be taped & let it dry to give a great adhesion - you're making a moisture chamber).

Or, if you can afford it (in this economic crisis),

2.  you can buy NITEYE,  The Dry Eye Comforter, at approx. $21.00 per 14 nonsterile pack.  (I'm lucky enough to be able to buy it by the case & save over $100. I know I'll need to use them the rest of my life).  Again, I apply alcohol with a cotton ball around the area to come in contact with the adhesive.
Their phone # is:  1-800-874-5797;  they'll walk you through the process for ordering.
I'm hoping you already have a gold/platinum eye weight in your upper lid to help with blinking.

I never had a nerve graft after the AN surgery, but I did have the T3 (Temporalis Tendon Transfer) at Johns Hopkins, Baltimore Maryland,  with Dr. Patrick Byrne - he is a pioneer in this surgery for people with facial paralysis & no chance of nerve regeneration.   I had this surgery done just shy of  1 1/2 years after the AN surgery.   It's the best thing I did for myself - you can also look into this option.
Most people have a nerve graft with great results - I was too chicken to have my nerves operated on again (it's just my neurosis). 
Also,  I have just learned that for eye symmetry, you need to go to an experienced oculoplastic surgeon - they are THE BEST for giving your eye the best appearance possible !

There are pictures of my before/after T3 at Facial Issues:  Post Temporalis Tendon Transfer, on pages 2 & 4.

Always good thoughts,   Nancy

[monaliysa]

Dear Nancy:
Thanks for your tips, I will look into them. The nite eye was something I wanted to do but they won't order them for me at the place i am staying. Perhaps when I go home I will order them. I need to put pressure on the eye to keep it closed and that has become very problematic for me.
Keep writing in if you have suggestions. My face is a mess...any suggestions..it looks like i have bells palsy.
Thanks again
MO
"-/

[nancyann]

Hi MO,  I forgot to say I take Trazodone 50mg every night (except Fri. & Sat. night when I don't have to work the next day).   I know what you mean about it being hard to fall asleep with 1 eye open, that's why I take Trazodone.

The only thing I can suggest for the facial paralysis is a nerve graft or the T3 surgery, I had the T3  done almost 1 1/2 years ago & am so happy with the results.

Okay,  take care MO,  Always good thoughts,   Nancy

[monaliysa]

HI it's Mona Radlow again. I just met with my dr. and he suggests that I go back to the sleep lab to utilize some machine i think called a C-pat or something or other. it has to do with breathing and maybe the operation caused a collapse in my breathing. Have any of you had this experience? If you have please get in touch with me here. I know i can't send my other email addy so i will check back here. I don't really want to go as the cost is substantial. If it's the only thing i can do i guess, I will just have to bite the bullet but I would rather not. Any alternate suggestions would be appreciated it.
Mona Radlow

[Cheryl R]

Mona,    C-paps are very good for those who need them and many people use them.   They take a while to get used to to have something over your nose at night but can really make a difference.  I would see if it works for you.     Are you old enough for Medicare as I can't remember but do remember your posts from some time ago.
Good luck and hope you can do all you can to make life easier!        Do you know how to do a personal message here.     You can give people your email address if any of us send you that PM.   
                                          Cheryl R

[lori67]

Hi Mona.

I have heard of the C-PAP you're asking about.  What they'll do at the sleep lab, or some home care places will actually come to you, is do a sleep study to see if you have sleep apnea.  That's when your normal rhythm of breathing is interrupted when you're asleep and it can cause you to feel exhausted during the day because you're missing out on restful sleep.  The study is painless - all you do is sleep through it.  If they find you do suffer from apnea, they fit you with a machine called a C-PAP which has a mask (like an oxygen mask) that goes on while you sleep and helps your breathing return to a normal rhythm so you can get rest.  

If it's really expensive, you might want to try the mask and the meds Nancy mentioned first to see if that does the trick.

Lori

[nancyann]

Hi MO:  I've been thinking about asking my PC about a sleep study. 
I see her in May, & want to have the test done - just b/c of alot of fatigue
during the day (it could be due to the Trazodone - sleeping pill) .  I've started on a Vegan diet this weekend,
so I'll see if that helps my stamina.

Always good thoughts,  Nancy

[saralynn143]

Mona, early on after surgery I used an eye patch from the pharmacy to cover my paralyzed eye. The ones from the pharmacy are shaped so that they do not touch the surface of the eye. I put on a fairly thick layer of Refresh PM and then put on the eye patch. I would reach under the patch to shut my eye. It would stay shut by itself fairly well after I manually closed it. With the eye patch keeping out the light I could sleep pretty well. The patch does not seal, but it keeps the air away enough that in conjunction with the ointment your eye stays moist enough overnight.

As far as getting to sleep, have you ever tried melatonin? It's an over-the-counter supplement of the hormone that makes you sleepy, often recommended for jet lag and insomnia. Take it about half an hour before bedtime, and if you are anything like me you'll drop right off.

Best wishes to you.
Sara

[monaliysa]

thanks to all for all the info ..since we are personal messages, I can give you my other email addy's Please keep in touch all of you I need your support desperately.
Love,
MO
:-/



Hi Mo... I had to remove your personal email addresses as we do not allow them to be publically posted here for your security.  Folks and you and PM/email on this website and share the info behind the scenes.. thanks for understanding. Phyl

[monaliysa]

Hi all..it's mona again...another night of not sleeping. I can't take it any more. I would very much appreciate it if someone could come up with something that would help me. I have tried so many of your suggestions and to no avail.
Please help if you can.
Love,
MO
:-/

[nancyann]

Hi MO:  sorry to hear about your insomnia.  Sounds like you may need to try some 'old school' methods.   Are you sleeping during the day to make up for being awake all night ?   If so,  you'll need to force yourself to stay awake.   Also, you need to stay out of  bed during the day/eve - I hope you're already doing this.  Getting even a little exercise daily will help.   Drinking warm milk before bed may help.
When I lay down to sleep I also just keep repeating the word 'sleep', very calmly over & over again until I fall asleep - sometimes it takes 1/2 - 1 hour to work.    I also read before bed & that makes me tired. 
Hope this helps,  always good thoughts,   Nancy