Author Topic: Eye  (Read 6099 times)

mimoore

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Eye
« on: September 25, 2008, 07:06:51 am »
I have really been pushing myself e.g. going back to work, walking lots, and started exercising hard yesterday and my dry eye started to run. Is this a bad thing? Will it ever repair itself and function properly again? Is it possible? I am losing faith.

I am using drops every 15 minutes and when that is not enough I am using lacilube every 30 minutes. I am looking into getting an internal eyelid weight  :'( I was hoping to avoid this and that my eye would be better by now but it is not and I need to protect my eye better at work. {{{{sigh}}}}
This message is kind of all over the place - sorry, I guess I am just feeling down. Had a dream last night that I got a tiny smile back then I woke up and realized it was just a dream, I am no where near that yet. {{{sigh again}}} I am trying to be brave but man this is hard. :'(
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.

mimoore

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Re: Eye
« Reply #1 on: September 25, 2008, 07:10:34 am »
Sorry I posted this under facial and should have posted under eye. See I am not thinking.
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
« Reply #2 on: September 25, 2008, 08:26:39 am »
Michelle~
I LOVE having an eye weight & it is just one less thing you have to concentrate on when it is in place.  I went from using Refresh PM 24/7 to only using it at night and one drop of Systane during the day!  They are easy to put in & remove if and when your eye gets better!  I promise it will make teaching a lot easier because you can concentrate on your kiddos instead of your eye!!   ;)

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!

mimoore

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Re: Eye
« Reply #3 on: September 25, 2008, 08:58:06 am »
Thanks K, I just made an appointment - with my ENT :o.
 I don't like my eye guy so my surgeon said ask my ENT (he knows her and she has done some). Scary but I trust her. My appointment is on September 30th to discuss it. I will keep you posted.
My little kiddies are so sweet - "When I cry I can save tears for you!" How cute is that?
Michelle
{Scared of more surgery and ticked I spent so much on external weights that sadly did not work for me.  :(}
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.

saralynn143

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Re: Eye
« Reply #4 on: September 25, 2008, 09:09:16 am »
Michelle, as you know I tried the external weight and now have an implant. It is so much better. It was a giant step toward normalcy.

I understand about being frustrated about paying for the externals. MedDev told me they would take mine back, and then reneged. I am none too happy with Cid right now.

But on the other hand, you know the implant will work, because the externals did. You just don't need to worry about those pesky adhesive strips anymore.

Ask for a platinum rather than a gold implant. There is less chance of a metal allergy.

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

jazzfunkanne

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Re: Eye
« Reply #5 on: September 25, 2008, 10:15:17 am »
Hi my ent inserted my gold weight a year and a half ago, its the best thing i ever done, hes hoping to review taking it out next year, dont lose faith re the facial nerve mine has just stated to recover 18 months post op.
over 4.5cm AN removed dec 06

nancyann

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Re: Eye
« Reply #6 on: September 25, 2008, 12:12:51 pm »
Hi Michelle:   I agree with everyone - the internal weight is a necessary item in my book, & as already said, once your facial nerve comes back & the weight feels 'heavy', you can have it removed. (Geez - I had a gold weight put in, removed; a platinum chain put in, removed; then a heavier platinum weight put in - obviously this outpt. surgery is a 'breeze' compared to AN surgery !).

I'm one of the few who had a gold weight implanted but had an allergic reaction (I can wear gold, just not implanted).
I like the platinum b/c it weighs more than gold so it is smaller, slightly less noticeable.   

Unfortunately b/c my paralysis is Brackman scale 6 (the worst), I still have to put tons of lubricant in daily.
I have an appt. 10/20 with a 2nd opinion oculoplastic MD to see what further 'tweaking' can be done (I still can't capture my
tears even with a 1.6 Gram weight,  & my AN eye looks larger than my 'normal' eye).

Always good thoughts,  Nancy
« Last Edit: September 25, 2008, 03:55:07 pm by nancyann »
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
2.4 Gm. Platinum chain 2017
right facial paralysis

mimoore

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Re: Eye
« Reply #7 on: September 25, 2008, 01:24:54 pm »
Thanks Sara, Jazzfunkanne and Nancy,
I know by reading all of your posts that this is the best thing for me. I was hoping because I had recovered a tiny bit of blink that it would get better and then I could avoid getting a weight. I kind of felt like I was giving up or loosing faith by doing getting it. Stupid I know but I can't handle my eye on my own anymore I am tired of it.
Thanks for your support. I will keep you posted. Oh and I do react to gold - gives me a rash so I will not get a gold implant - thanks for the heads up.
Michelle  :)
Thanks for making me feel better.
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.

Jeanlea

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Re: Eye
« Reply #8 on: September 26, 2008, 06:30:22 pm »
Michele,

I had a similar problem when I was told that I should have the corner of my eye stitched.  I fought against doing it.  I already had the eye weight put in right after my initial AN surgery, and it still needed some tweaking.  I kept hoping that my eye would tear and blink, but with both facial paralysis and numbness my chances were much less.  Knowing that the whole thing was undoable I decided to go for it.  Today no one can even tell that I had the corner stitched, the lower lid lifted, and the gold weight.  Right now I put in Liguigel about every two-three hours and PM Refresh for the night.  If I really don't want to be bothered I put in PM Refresh in the morning and I'm good until bedtime.
I guess what I'm trying to say is that the internal weight is not bad, and it is reversible if that becomes an option in the future.  In the meantime it will make your life easier.
Your children are kinder than mine.  I was puting in drops today and explained that I can't make tears in one eye.  One child said he could punch me and see if that was true!  He was kidding at least.  lol
Best of luck to you in whatever you decide.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

mimoore

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Re: Eye
« Reply #9 on: September 26, 2008, 07:26:18 pm »
Thanks Jean.
I am laughing out loud at your funny children. Kids say the craziest things. I always tell the parents of my kindergarten students that I won't believe everything I hear if they don't believe everything they hear.   I have heard some funny stories. :o :o  :o
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
« Reply #10 on: September 29, 2008, 09:04:03 am »
Hi Michelle and all...

Thanks for sharing your experiences on this 'hot' topic.

I think my double vision is starting to correct (i can actually get images i look at to come together, but there is still a lot of blurring around the image i am looking at and things move a bit when i move my head and blink...but there is progress so this is great).

I am thinking i will start to investigate the eye weight so that when/if i get past the DV i can function without patch. I did ask opthamologist #2 about weights when i saw her in early Sept and she kind of discouraged me. She said that weight is good if your cornea is suffering because of eye not closing -which mine is not, but that's because i have the eye patched due to double vision. I don't want to wear the patch if the DV resolves (pleeeez). I was thinking too about the temp weights, but it sounds like most (all?) with gold/plat weights have had good experiences.

OH >>>> the eye doc also said that the weight would make my eye look worse as it would create a heavy lid (less symetrical than an open eye). I dont hear people complaining of this here though.


Are you seeing an opthamologist in Toronto? I will be interested to hear how this goes for you.

Have you ditched the eye heaven patch? I really loving mine and just waiting for another one in exchange for one i ordered that was too small.

Hang in there...

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.

saralynn143

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Re: Eye
« Reply #11 on: September 29, 2008, 09:22:11 am »
Trish, my eye looks better after the implant than before. I do not have any droopiness at all and I have a fairly substantial weight (1.8 grams).

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
« Reply #12 on: September 29, 2008, 03:10:04 pm »
Hi Trish,
That is amazing that you are seeing tiny signs of improvement.... keep going eye!
I am seeing Dr. Anderson at St. Michaels Hospital (she is wonderful and very intelligent). She is an ENT, my surgeon recommended her, she has done some eyelid weights before. Trish you would love her. I am also trying to get her to push the Transear thing. My eye is totally a problem - stings when I don't wear my sunglasses with foam around them (I made them from the tranquil eye set i got). Works REALLY REALLY well. I can't teach in sunglasses though so the days I work I am distracted by this dumb dumb eye.
Anyway PM me anytime and I will give you her number or anything else you need. Take care.
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.

MAlegant

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Re: Eye
« Reply #13 on: October 03, 2008, 05:23:58 pm »
Hang in there Michelle.  Sometimes I think these things are just giant tests of character that we "unique" people have to go through.  I can understand your frustration: first some progress, then nothing.  I got some feeling back in my face and was really excited.  Nothing since then although since the healing process is so unbelievably slow, it's hard to tell what's happening.  I'm trying not to read too much into what goes on.  Some days are better than others, and even progress can take a step backwards.  So I'm trying to distract myself as much as possible.  Your kiddies will be the best medicine.  Your smile will come back, beautiful Michelle, and once it does, look out!
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

calimama

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Re: Eye
« Reply #14 on: October 06, 2008, 02:20:13 pm »
Hey Michelle...
As i think i mentioned in another part of the forum, i am curious to see what you find out about the implant here in Canada and if you have a doctor for this. My double vision is definitely improving, although still a long way to go... and having an eye that does not close, gets blurry, gets dry etc, does not help. Anyway i have a referral to a surgeon in January (re: DV) but am thinking i am off the DV surgery list now and wanting to think more about dealing with the eye paralysis so i can lose the eye patch and get feeling a bit more "normal".
Please PM me after you have a consult about a permanent eye weight. I wonder how long it will take to get this?? I'm thinking to try to get in the queue now!

cheers,
Trish
« Last Edit: October 06, 2008, 02:24:00 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.