Author Topic: Eye problems  (Read 11637 times)

Debbi

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Re: Eye problems
« Reply #15 on: November 13, 2008, 01:44:24 pm »
Hi Hrissy-

I am sorry you are in the eye-care club now!  That remains my biggest aggravation, althoug it does get to be more of a routine over time. 

To address the issue of eye drops with preservatives, my neurotologist also told me to avoid the kind w/ preservatives and go for the "single use" capsules (which can be re-capped quite easily).  Since I was putting drops in my eyes about every 10-15 minutes for the first few weeks, this was a great bit of advice.  After even the first few days in the hospital, the preservative drops were irritating my eyes. 

I have found that most of the gels - lacri-lube, pura-lube, Refresh PM all work about the same and they all seem to have the same ingredients.  I have tubes everywhere - bedroom, office, car, purse, etc.  I try to use thick drops during the day because the gel makes it quite difficult to see/drive, but sometimes the drops just don't cut it.

BTW, I'll post this elsewhere, but I am getting punctal plugs tomorrow for my lower lid.

Deb, eye still doesn't close all the way...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

hruss

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Re: Eye problems
« Reply #16 on: January 18, 2009, 12:04:17 pm »
Hi all!!

Finally I got the Foam set for Tranquil eyes hydrating goggle. I actually ordered only the right one because this is the eye that  suffers.  My brother lost it was not able to bring it at the beginning of Dec 2008 when he got back from NYC but fortunately my cousin who came back for Christmas had found it somewhere in his house and as a result I have it here next to me.
It's been really windy recently so I have to use my foam. I did not have problems after the opening of the eye (I had my eye shut sewn for a month and before Christmas they opened it) but nowadays when it gets windy, my eye gets all strongly red. So I think it is time for the foam to stick to my sunglasses.
Before doing it i would like to ask whether you had some problems removing it? Also, what is the inner removable part of the eye patch foam for? I remove it and just stick the contours of what is left, right? Then i have to put some ointment in the damaged eye and to apply the sunglasses and thus to be ready to go out, right? still hesitate a lot about sticking the foam to my sunglasses because I am afraid that this foam might damage them, and I really like them.....

Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

mimoore

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Re: Eye problems
« Reply #17 on: January 19, 2009, 11:25:40 am »
Hi Hrissy,
Orginally the foam is used for the tranquil dry eye night goggles. The center part is soaked in water and then placed back in, these goggles are to keep dry eyes moist at night. With facial paralysis the eye does not shut so I thought these goggles would be good for me. I had eye pain after wearing them for one night. I needed a great deal of pressure to keep the eye closed and it hurt in the morning. I am not saying they wouldn't work for everyone they just didn't work for me.
So consequently I had these extra foam pieces I had ordered and thought hey I could stick these to my sunglasses and they could act as a moisture chamber and protect my eye when I am outside. That is exactly what happened and I have never had any issues with my eye. My neurosurgeon was quite impressed. Sadly I did not invent them so could not take all of the credit. I like to pass on things that work for me.

Okay Hrissy.
Throw the center piece away (you don't need it). Make sure your sunglasses are clean and dry. Peel back the white paper and stick the foam to the edge of your glasses, if you do this right you should not see the foam from the outside. The bigger the glasses the better but you can make  them work on just about any pair but tiny ones. A little lube or drops and you are good to go.
I change mine the first of every month and use a little dish soap and wash the sitcky off. My sunglasses will be fine once I am done with this ordeal. Saying that my eye comes way before my glasses.

Good luck no more red eye for you. Once you see how great it is you will want to order more.
Michelle ;D
« Last Edit: January 19, 2009, 11:27:55 am by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

hruss

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Re: Eye problems
« Reply #18 on: January 19, 2009, 03:20:19 pm »
thank you for your comprehensive answer, Michelle!!
i was thinking of you when i actually wrote that last night (Bulgarian time)!
how are you?
Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

mimoore

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Re: Eye problems
« Reply #19 on: January 19, 2009, 05:10:07 pm »
Hi Hrissy,
I am great, thanks for asking. I am going to send an update with photos soon. I am back working full time (kindergarten teacher) so I am very busy.
I can make a small smile and the second tooth is showing. I am pleased just wish my dumb eye would blink and I would be golden. Patience yep I know, heard it before. Hate that word, I am learning. It is so easier to cope when you have a little hope (movement). Things DO get better... it is just very hard to see that at the beginning of this long journey.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

hruss

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Re: Eye problems
« Reply #20 on: January 20, 2009, 02:50:13 am »
my mom also is a kindergarten teacher - it is a great fun - i know from the horse's mouth  :D

i know it is much easier when you see some enbetterment to go on. i haven;t seen any visual change, but i still struggle, and actually this is the only thing i can do! :(

waiting for your pics!!
hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

CROOKEDSMILE

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Re: Eye problems
« Reply #21 on: January 20, 2009, 12:41:51 pm »
Just a little funny.....
I was taking my older son to school the other day and after dropping him off I took a quick peek in the mirror because my eye was killing me although I didn't say a word and my 4 year sitting in the backseat said,
"Mommy, is your eye feeling better?" I thought how sweet for him to ask. I responded with "Well, yes dear it is feeling just fine. Thanks for asking" Then I asked him......Tanner, does it LOOK better?
He responded........"NO NOT AT ALL!"
Didn't do much for the 'ol self esteem but I got a great chuckle.
Angie
still wearing the external eyelid weight and can't wait to purposefully throw it DOWN THE DRAIN! or better yet...the toilet!

calimama

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Re: Eye problems
« Reply #22 on: January 31, 2009, 08:18:44 pm »
For the record,

I saw the opthamoligist in early December and she said the preservatives are NOT a problem, if you tolerate them ok. My first opthamologist also did not have a problem with the drops i showed her (which had preservatives). I guess i would probably trust an opthamologist (or two!) over an optometrist (although i think all of these docs are good).

Anyway, i am using preservative free drops as i found ones which are nice. I also use a thinker gel (which has preservatives) sometimes cuz it feels cold and refreshing. And also the ointment (tears naturale PM) which i have happily settled on.

Just thought i would clear up any confusion (from my experiences).

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

mimoore

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Re: Eye problems
« Reply #23 on: February 24, 2009, 08:06:01 pm »
Okay so sick to death with the eye drops. I use the little vials and they are getting expensive so I decided to try a big bottle with perseratives... I got a red irriated eye in one day. Oh well back to the litle vials again. I sit here hoping for my blink and some more tears.

Hey Hrissy how is the foam working out for you? I change mine the first of every month and honestly I could not get by without it.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

calimama

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Re: Eye problems
« Reply #24 on: March 11, 2009, 09:41:37 am »
Hi all...

Just back from Opthamologist and she said my eye is looking great.

It STILL will not close (not sure i have had any progress in this department, although when i smile, the lower lid does move up slightly now... I am hoping the top lid catches up).

Oh Michelle... your words "when i am done with this ordeal" hit me. Will we ever be?? The reality is that for some their eye never closes;  I am not convinced I will not be one of these people. My smile too is coming along well, esp in the last 2 months or so. The facial therapist (who i also saw this week) gave me a 50% on my open mouth smile. Still can't whistle to save my life though! With an improving smile, i am now quite anxious for the eye to close, blink. I am 9 months out now i think.

I asked the opthamologist again about the eye weight...IF my eye is one of those that never recovers (closes). She said what she has for the past 6 months... the weight is not necessary if I am taking good care of my eye (which i clearly am) and there is no ongoing damage. The threat of having it sewn shut is a powerful motivator!  She also said that a weight would make my eye droop a bit and look worse than now (which is not bad, although mascara and lashes that curled up would help a lot!). I wear eyeglasses during the day (i have a mild presrciption for distance, but didn't wear eye glasses prior to having these eye issues). Outside, i wear safety glassses that i bought for $10 from home depot. They do not offer the same kind of protection that moisture chambers would, but are cheap, seem to be doing the trick (even through our very cold and windy winter) and look almost fashionable (!!??!?!? from the depot). They wrap around enough to keep out debris and wind well. I am still using the drops (just the preservative free ones, the Refresh Celluvisc as they feel the best) but can go a few hours between drops. Ointment before bed (still taping eye at night, prirate patch for naps), and before leaving the house in the morning, and whenever the drops don't seem to be cutting it.

Like many others out there who have been at this protocol for many months, I have gotten used to the routine and am managing pretty well considering. I do hope that this too shall pass, but must continue to wait and hope. 

Good luck to all of you going through this, and especially those just starting out. It, like many things, does get easier over time.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

mimoore

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Re: Eye problems
« Reply #25 on: March 11, 2009, 10:21:04 am »
Hey Trish,
I am in exactly the same boat as you... let's sail away. I'll bring whine (I mean wine..hehehe) and you bring the cheese.  :o
This is quite a journey isn't it? I pray everyday for spontaeous blink and full eye closure... patience - yuck I hate that word. I am off today to go for facial retraining, things are moving along fine. When I talk or smile of course you can tell and my eye doesn't blink. When it tries I have Bel'ls phenomenon (eye rolls back) so I am sure it looks kind of weird, I try to ignore it and carry on.
Thinking of you.
Michelle  ;D
« Last Edit: March 11, 2009, 02:14:50 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

CROOKEDSMILE

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Re: Eye problems
« Reply #26 on: March 11, 2009, 12:12:50 pm »
I don't know why these doctors aren't recommending external eyelid weights for those that don't want the gold weight put in. I also used a pirate patch for 6 months because my eye wouldn't close and now my vision sucks in that eye from nonusage. The external eyelid weight does wonders! I can blink with it and close my eye. No more patches and it doesn't look that bad. Most people just think it is a tiny bandaid. All you need is a prescription from your opth. doc and have him put on tester weights to see how heavy of a weight you need. It is great to look out of both eyes and to get closure when I blink. I think using the eye has helped me get it stronger then when I just patched it all the time it got even lazier. I just wish someone had told me about it sooner! (my doctors right out of surgery! but they forget about things like this.) I would be crazy without my weight and I HATED the platinum chain that they put in at first. It was a chain and was too heavy and was taken out 3 months later. This external weight is a lifesaver.
Also I leave tomorrow for Nashville for a canthoplasty on the left eye with an Oculoplastic surgeon in Nashville. We were limited in this area of specialty in Arkansas so off I go! The doctor thinks that by doing an upward lift that I will be able to get that 1 mm left to close when I blink and it will look better as it droops some. Will have right eye done in 3 months to match. I also got my prescription eyeglasses tinted a light rose which is VERY soothing on my eyes especially at the computer and also hides the funky eye! Also a lifesaver. Looking through rose-colored glasses~! ya know what they say! Guys.....it does get better with your blink as I am 20 months out and just now am blinking all the way down (except for 1 mm) but it is delayed with the weight off and no Bell's phenomenom anymore. It does get tired though and I stick the weight back on. Okay gotta go pack. Leave in the am.
Angie

mimoore

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Re: Eye problems
« Reply #27 on: March 11, 2009, 02:27:21 pm »
Angie, first of all I want to say thank you. I just went to see my facial therapist and told her how discouraged I am about the eye not blinking, then I got your post. Ahhh hope is good.
I researched weights like crazy and decided to go with the external weight. Which by the way we do NOT have in Canada. I brought the information to my opthomolgist in TO and he was not too impressed (guess he would be if he had the problem... sorry that was my inside voice). He did not assist me at all so I contacted the company myself and guessed at which weight to get. I started with a 1.8, it was too heavy so I ordered a 1.0. I could not get it to work... others said look for the 'sweet spot'... I was sad that it did not work for me (it kept flipping and hitting my eyeball). Oh I tried, I am not one to give up easily and I wanted it to work so bad. I could wear it lying down for about 30 mins but only with constant adjusting. I became soooo frustrated it now sits in a box... any takers for a 1.8 external weight cheap? I try the 1.0 once in a while to see if there I am able to wear it.
I am so glad it works for you, your eyelids must be deeper set then mine. I could totally see how it could strenghten your blink...hmmm wishing it would work for me.
Michelle  ;D
Good luck on your wee trip.
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Kaybo

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Re: Eye problems
« Reply #28 on: March 11, 2009, 03:11:18 pm »
Michelle~
Is that a new picture?  Looking GREAT!!  Better and better all the time!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

nancyann

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Re: Eye problems
« Reply #29 on: March 11, 2009, 04:39:59 pm »
Absolutely K,  once again,  as Billy Crystal's 'Fernando' says, "YOU LOOK MARVELOUS"
Beautiful Michelle,  you must be so happy ! !   Can't wait to see next year's picture ! !

K, doesn't it feel so good to see our AN friends regain their movement ? ! !   I know you feel the same way !
It's like "Whew, they're getting movement back ! !  YEAH ! ! ! ! !. "

Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

 


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