Author Topic: Lens Life  (Read 8367 times)

Doc

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Lens Life
« on: January 11, 2016, 08:29:34 am »
The last 90+ days with my Scleral Lens have been the best since before my AN Surgery back on 2009. If you haven’t looked in getting one of these little wonders for yourself, you really should.

Take Care  ;)

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

jaqiday

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Re: Lens Life
« Reply #1 on: January 11, 2016, 01:23:22 pm »
I will have to second that, even though its been trial and error to get the right lens and solution combo.

I had a recent experience with getting a 'bad' lens that leaked all the solution out, was very annoying to wear and eventually broke after only 3 weeks. In the time I have been waiting for the replacement, I found I can almost go without the lens and just use drops. My paralysis seems to be healing after 10 months and I might not need it much longer!

Fingers crossed :)
Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

Doc

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Re: Lens Life
« Reply #2 on: January 11, 2016, 02:29:32 pm »
...you should be glad it’s getting better. Mine has been bad since surgery in ’09, and hasn’t improved any. I can go about six hours (used to) without a lens and only drops but its painful. After about six weeks of using the lens, I actually ordered and have a spare ‘just in case.’

Take Care  ;)

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

nancyann

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Re: Lens Life
« Reply #3 on: January 15, 2016, 06:41:54 pm »
totally agree with you doc.  My scleral lens doctor, Kenneth Maller, Ft. Lauderdal, FL, is amazing.  My lens fits so good, have had it since 2013.  I see him every 6 months.  So happy with the lens!
« Last Edit: January 16, 2016, 04:47:02 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
right facial paralysis
good to go.

Doc

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Re: Lens Life
« Reply #4 on: January 16, 2016, 06:39:51 pm »
NancyAnn, its great to hear you’re equally happy with your Scleral Lens. I’d say we’re the lucky ones, but that would be an understatement.

Take Care  ;)

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

nancyann

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Re: Lens Life
« Reply #5 on: January 17, 2016, 01:57:35 pm »
Before the lens, the burning & pain in my eye was so bad I asked my oculoplastic surgeon to remove my eye.  Thank God he refused. I use to put lubricant in my eye every 1-2 hours - what a pain in the neck during work.  Now, I love to feel wind blowing in my face, something I would cringe at before the lens.  Dr. Maller gave me back the little things in life that have become so important.  I may be due for a new lens soon - I can't wait to have a spare like you doc, then I can try 'body surfing' again!, so if I lose my spare lens I'll still have the new one. I tried it with goggles but the goggles fell off, then I tried it without the lens & the salt water caused my eye to burn horribly.  Would also like to try paddle boarding to keep testing the old balance issues! 
« Last Edit: January 17, 2016, 02:08:03 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
right facial paralysis
good to go.

Patti

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Re: Lens Life
« Reply #6 on: January 17, 2016, 02:47:24 pm »
I am truly lucky because I have all the dry corneal and eye paralysis issues BUT have no sensation either!  So I don't feel pain. The bad side of that is that sometimes I get things in my eye and am not aware of it until it scratches my cornea. Then I know because it affects my vision and my cornea gets red.  I have to say that the doctor is always impressed by the condition of my cornea.  She praises me for taking care of it.  Doctors in my life don't offer praise too readily!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

nancyann

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Re: Lens Life
« Reply #7 on: January 18, 2016, 01:42:13 pm »
hi patti:  i think because you don't feel the burn & pain associated with dry eye, you have to be even more vigilant because you don't know when you need the cornea lubricated.  I think it's great that your doctor is very happy with your caring for your eye.  I would ask your doctor if you should try the scleral lens.  When I first found this site there was another ANer who didn't have feeling either, & she would end up with corneal ulcers. So, I am happy for you that this hasn't happened.  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.

Patti

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Re: Lens Life
« Reply #8 on: January 18, 2016, 09:01:41 pm »
I will look into it! These cold, dry winter days are the worst!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Jill Marie

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Re: Lens Life
« Reply #9 on: January 26, 2016, 12:20:36 am »
Hi Nancyann, 

Good to see you back on the board, always love your posts, upbeat and helpful!  Perhaps you would like to give the daily lens by Acuvue, it's the Oasys HydraLuxe, a try.  You could use it while body surfing and paddle boarding and not worry about loosing your scleral lens.  The lens costs less than a buck so your not out anything to give it a try.  So very glad the scleral lens is still working so well for you, best thing that happened to me in 20 years.  Jill 8)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

nancyann

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Re: Lens Life
« Reply #10 on: April 08, 2016, 06:30:45 am »
Hi Jill:  can you purchase the Acuvue 'over the counter' or do you need an Rx.  Does it need to be fitted ?   Again, I can't thank you enough for the info on the scleral lens, it totally changed my life.  Now, a lens I can wear bodysurfing ?  WHOO HOO!
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.

Jill Marie

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Re: Lens Life
« Reply #11 on: April 28, 2016, 12:13:03 am »
Hi Nancyann,

I don't think you can purchase the Acuvue lens over the counter, wish we could and hopefully one day we can.  I went to the Walgreens website, don't know it they are local or nationwide, anyway, they showed the price for the lens but asked for a prescription so you could order the lens.  The lens has only been on the market a few months so I doubt that anyone has yet to realize what it can do for people like us with or without a prescription.  I suggest that you go to your eye doctor and tell them what lens you need.  They shouldn't have any problem getting it for you. 

The lens is the Acuvue Oasys with HydraLuxe, 1 day lens.  The lens doesn't need to be fitted, it's a one size fit's all, believe it or not!!  If someone had told me such a lens existed that would help me like it does I would have said they were lying.  I was to the point your were a few years ago, help me or remove my eye, I figured I had nothing to loose by trying the lens.  If you want a prescription in the lens they can do that too.  It takes a bit to figure out how to put the lens in and take it out but for you it shouldn't be to much trouble since you have already dealt the with scleral lens.  Most mornings I get the lens in on the first try, if I'm in a hurry it takes 2 attempts, ha, ha!  At night I get the lens out on the first try unless I'm really tired. 

Allergy season is in full swing and I'm not having ANY problems with the lens, unlike the issues I had last year with the scleral lens.  I still don't know why I had so many problems last year, was it the weather or the lens, I will never know, just glad things are going so well. 

I'm really sorry I didn't respond to your post sooner, I haven't been on the board very much.  I found out a couple of months ago that I'm going to be a grandma, one of my son's who is in the Army and deployed will soon be a Dad to twin boys.  I've been busy planning for there arrival.

I too am enjoying life so much more with my lens, out planting trees with my Hubby on our 20 acre piece of Heaven and of course planning for the birth of my grandsons, instead of worrying about, dealing with the pain of and taking caring of my eye.

Hope my reply isn't to late to help you enjoy your bodysurfing!!  Always glad to hear from you, Jill :D :D
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

elsie

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Re: Lens Life
« Reply #12 on: April 29, 2016, 07:51:00 pm »
Hi All,

Jill Marie and I started on the soft lens journey at about the same time.  I still am amazed at how miraculous they are.  After over 25 years of unrelenting eye pain and then what I thought was major fatigue after my AN came back, these lenses have completely improved the auality of my life.  I am now eye pain free and no more fatigue.  I used to use hourly large doses of goop, now on most days I only need a very small dollop - once.  I use Acuvue TruEye.  Scleral or soft contact...everyone who has dry eye should look into a lens.  It is truly a game changer.
Very large AN removed Aug., 1988 - pushed cerebellum aside, touching brain stem
Dr. Wiet in Hinsdale did 12 hour surgery, got it all
Total right-side facial paralysis for 6 months, 50 - 75% return
Extreme dry eye and tinnitus in both ears
Lost all hearing in AN ear
1/8/14  AN Regrowth confirmed

jaqiday

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Re: Lens Life
« Reply #13 on: May 13, 2016, 01:08:30 pm »
I have been using a hard scleral lens since last nov. I have almost found one that works, but I have problems wearing it. It feels weird some days, practically falls out, gets hazy constantly and is just plain blurry most days.  I have some weeks where I don't even need the lens but then others I am back to painful dry eye and need it covered.

I had to go through the 'special lens fitter' from my medical plan. I currently am switching to another health care plan and am thinking of seeing someone else.   I saw a neuro ophthalmologist but never saw an optometrist,  just the lens fitter who said soft lenses would definitely NOT work (neuro said the hard lens wouldn't work either go figure). I would at least like to make my own judgement.

Any recommendations as to what type of Dr I should see or look for?

Thank you for any suggestions.
Right AN 3.2cm 2-27-15
Retrosigmoid 3-9-15 6 hours
Facial nerve paralysis, dry eye, balance problems
Finding a new normal...

Kerrybr92

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Re: Lens Life
« Reply #14 on: May 14, 2016, 08:09:13 am »
I have worn a PROSE scleral lens since 2011.  The fitting process was extensive and in the end I received a lens that fits perfect.  I have worn it everyday since then. It is amazing and almost completely carefree.  It certainly changed my life.  I work with doctors from the Boston Foundation for Sight in Needham Massachusetts.  I am not sure where you are located but they have several satellite locations.  These are normally situated within larger medical centers.  I would certainly go to the their website and see if there is a location near you. I need to travel about two hours to see them. It is worth it. They are the experts.  They fit and manufacture the lens for you. It is 100% uniquely designed for your eye.  No two lens are the same.

Good luck.
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

 


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