Author Topic: Eye problems  (Read 12180 times)

Kaybo

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Re: Eye problems
« Reply #30 on: March 11, 2009, 04:45:16 pm »
YES!!
I am so glad when I see progress!!  I wouldn't wish this on anyone!!

K ;D
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!

mimoore

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Re: Eye problems
« Reply #31 on: March 11, 2009, 05:06:27 pm »
Big Hugs my wonderful cyber friends, whom by the way have helped me get where I am - physically and mentally. Thank you!!!
Michelle  :-*
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.

sgerrard

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Re: Eye problems
« Reply #32 on: March 11, 2009, 09:22:59 pm »
Michelle is starting to look elegant. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

calimama

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Re: Eye problems
« Reply #33 on: March 12, 2009, 09:09:06 am »
Hey Angie...

I am glad that you found something that works for you, and that you are still getting better 20 months out.

I was very keen on getting some kind of weight in the early months, but didn't really make sense for me at that time as i HAD to wear the priate patch ALL THE TIME because i had horrible double vision. So the patch was killing two birds with one stone (allowing me to see straight, and protecting my eye which would not close). By about 4.5 months post surgery the DV had totally recovered and i lost the patch. I did not having any trouble with seeing out of the patched eye before/after the patch. My cornea was in great shape too.

My opthamologist says i have a strong bell's phenomenom and this is good thing and part of the reason for my cornea still looking "great" despite being 9.5 months post surgery and no blink/closure.

I guess in Canada they push things you don't need (although the Opthamologist did ask me if i "wanted" one... i could get one if i did). She is young, attractive lady and said i don't "need" it, and it would make my eye look worse as it would cause my eye lid to drop (effectively introducing new assymetry with my right good eye). I do seem to manage just fine with glasses, so i am not inclined to make my face look more worse without some incremental benefit. I do close my eye manully from time to time to spread moisture around, and i guess this task would be a little less manual (i think the weight requires you look down to blink?) and i can see how this could be very helpful (if say driving a lot, which i don't).

Anyway, for now i am going on the doctor's suggestion to avoid having my eye cut open and droopy eye lid (i would say i have very shallow eye lids, you don't really see my eye lids when eyes open), when i don't need it. Perhaps i will change my mind about this down the raod a bit, if it seems the won't close at all (ever!). I think the eye closes can take up to 2 years for many people with full paralysis and subsequent recovery.

I was also swayed but a few posties here (Michelle included) who had little success with the stick ons (which we don't have in Canada anyway).

I am curious what Kaybo thinks... I know you had weights FOREVER and then had them removed (temporarily) and i think put back in.  I know many people here swear by the eye weights. Maybe i am missing out... But i would hate to get it and then not like it. Really i have been cut open enough already!

Thanks all for thoughts and input.

Trish
« Last Edit: March 12, 2009, 01:51:32 pm by calimama »
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.

Kaybo

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Re: Eye problems
« Reply #34 on: March 12, 2009, 09:30:30 am »
Trish~
The main thing that I kept thinking when I read y'all's posts was that my eye did not droop when I had the weights in unless I was really tired - which it did/does anyway without the weight.  If you get the right weight, it shouldn't droop b/c it is just helping your lid shut until it gets to the point where gravity takes over.  Maybe I just took it for granted that I have a liitle "strength" in that lid.  I will say that my eye wanted to stay OPEN all of the time.  I am one of those that are VIOLENTLY opposed to taping or closing your eye in ANY (except sewning shut) because my eye kept coming open under the taping/patch and I got HORRIBLE corneal abrasions - I then HAD to have my eye sewn shut!!  I am still doing OK without a weight - I do put in drops and bit more frequently (maybe twice/day) and Refresh PM at night.  I have always used the Refresh at night but was only using 1 drop of Systane each morning when I had the weight.  If I could, I probably would go back with the weight, just simply b/c it is SO much easier - but this way is really not that big of a deal either.  You gotta do what you gotta do!!

K ;D
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!

saralynn143

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Re: Eye problems
« Reply #35 on: March 12, 2009, 10:49:25 am »
I'm with Kay -- I have a 1.8 gram platinum weight, which is the largest standard size available and I have no drooping at all.  I don't know if that is due to my physiology or the fact that my eye surgeon was very, very good.

I am also a proponent of using gel and a patch (from the pharmacy) in lieu of taping. My neurosurgeon showed me a taping technique at the outer corner of the eye rather than over the middle, but I could not replicate it so I opted for the patch and gel until I got the weight. I still use gel round the clock. Some days I only have to put it in at bedtime and not again until next bedtime, but usually i have to use it again mid-afternoon. Rarely in the morning.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

calimama

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Re: Eye problems
« Reply #36 on: March 12, 2009, 12:23:05 pm »
thanks Sara and Kay...

I wonder if the the "droop" concept depends the person... The opthamologist told me that MY eye would look worse with the weight (wouldn't she know??). I look in the mirror now, and both eyes look pretty much the same (excluding eye lashes/mascara). I really don't show any eye lid on either side (i guess the skin above my eye, below eye brows, is also heavier).

I looked at Sara's pictures on the facial issues section and it looks like her right eye (non AN) shows A LOT of eye lid.. her natural state. The left (AN) eye lid (which i know has a weight in it) is actually less visible (so presumably the weight is actually improving her overall appearance given she naturally has heavier eyelids).

thoughts Sara, Kaybo (anyone else)??

I have also read that if the curvature of the weight is not "right" for your eye (implying customs as the best way to ensure this), the weight can actually change the shape of your cornea ...bad. Here is something i read on pemedcentral, "It was also reported that gold implants which do not adapt the slope of cornea cause astigmatism". 

I have had no real trouble associated with taping at night, but i do know that this often not the case and the idea is often discouraged. I DO NOT like the tape and occasstionally i get worried that it is not sticking well (probably because of the ointment spreading) ...when this happens i just take it off and wear the pirate patch. Not sure the patch is great either as i am a side sleeper and figure it could shift... that's why i generally reserve it for naps. I have been meaning to try those eye patch/bandaids (sold at the drugstore with a kid's picture on the front, but says for adults too. Must get on this...

Kaybo, why are you still waiting for a replacement eye weight?  It has been many months hasn't it? If i recall they were waiting for the lid to heal completely...?

I have one other reason for avoiding unneccessary surgery at this time... i am 5 months pregs! I have to do a proper post and tell all, and will shortly. Stay tuned for this biggie!

Thanks guys,
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.

Kaybo

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Re: Eye problems
« Reply #37 on: March 12, 2009, 02:17:55 pm »
CONGRATULATIONS!!  I'll have to write more later as we are off to gymnastics but I couldn't wait to tell you that!!  How exciting!!  I LOVED being pregnant - after the first 3 months when I was so sick & had to take shots everyday!!

;D
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!

saralynn143

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Re: Eye problems
« Reply #38 on: March 12, 2009, 02:50:56 pm »
Trish, congratulations! A baby way trumps an eyelid weight. And who knows what kind of improvement you may experience in the next four months.

Listen, I have a 1.6 gram external eyelid weight that I would be happy to send you as a shower present. You can see whether you think it would help at all, and if it is the wrong size you can go to your ophthalmologist and see about getting a different size.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

mimoore

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Re: Eye problems
« Reply #39 on: March 12, 2009, 03:04:05 pm »
That is sooooooo wonderful that you are expecting. Children have a way of making life so wonderful! Congratuations to you and your family.

If life was perfect I would not tape my eye at night but I had an AN and I am rolling with the punches. Do I like taping it? NO but it is working and my eye is in really good shape so why mess with it. 9 months later and I am kind of used to it.  I use Refresh Laci-Lube (Preserative Free) from corner to corner along my eyeball. I look down and close my eye with my finger. Then I tape the eye with Nexcare Paper Tape , one piece along my lashes to close the eye and then another piece from inside corner across and up to the outside end of my eyebrow. These are not big pieces just enough.  I found the plastic too sticky and hurt when I removed it in the morning.Then I apply a Nexcare Opticlude (Orthoptic Eye Patch) Junior Size for Children. This system works REALLY well for me and I have never had any eye issues. It really only takes 2 mins and off to sleep I go.

Strange thing ... last week I pulled off the patch and tape in my sleep.. I woke to a red painful eye. Guess I was sick of it in my sleep.

I keep hoping someday that the eye will back to normal, I haven't given up hope yet. It is what it is and I can't change it so finding a suitable solution was my only option.  I think the eye was the biggest shocker for me, in all of the research I did I never clued in that the eye would be affected in the droop. The eye has and still is the biggest issue.

Ahhhh today I am a duck and will let it all roll off of my back. Tomorrow well who knows.  :o :o

Michelle  ::)
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.

 


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