Author Topic: My 28 year battle with dry eye.  (Read 14463 times)

nancyann

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Re: My 28 year battle with dry eye.
« Reply #15 on: April 10, 2013, 06:51:24 pm »
Jill: Isn't this lens amazing??  I could never take a 'short nap' before because my dry eye would start bothering me. The other day (weekend), I fell asleep for about an hour, woke up & couldn't believe I didn't have burning eye pain! It's the little things I am so grateful for!
Thank you thank you for the scleral lens!!
The 'new' gift that keeps on giving in the BEST ways!
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: My 28 year battle with dry eye.
« Reply #16 on: April 11, 2013, 12:35:12 am »
Nancyann,

I totally agree, the lens is amazing and the little things mean so much more than one could imagine.  Every time I see my eye doctor I tell her a little bit more about how much it has changed my life.  Took the dogs for a walk this afternoon, it was so windy that I could barely walk, yet I didn't have to put eye ointment in tell we where done with the walk, pre lens I would have put ointment in like crazy or more likely would have skipped the walk which the dogs nor I would have been happy about.  I too have taken a nap with the lens in and didn't have any problems with my eye when I woke up.  Can't wait to take a nice long (10 mile) bike ride with my Hubby and not have to stop every mile to put in more eye ointment then pay dearly at the end of the day for being out in the elements. 

Susan, from what I have read you really need to take a second look at the lens.  Just because your doctor says you don't have scarring it doesn't mean that the lens wouldn't help you.  I'm not sure why your doctor doesn't think you need it, if it's because of the cost please keep in mind that my lens only cost me $250, not sure at this point how long it will last, hopefully 4 months.  My Insurance said it wouldn't pay for it, my eye doctor filed an appeal today and hopefully they will pay for it.  Will let you know.  You will use a lot less drops and ointment with the lens and the comfort part is priceless.   ;)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

susanisselhard

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Re: My 28 year battle with dry eye.
« Reply #17 on: April 12, 2013, 03:29:53 pm »
Thanks, Jill Marie....I won't roll over on the scleral lens issue....if nothing else, this AN journey (of 22 years) has reinforced for me the value of being my own strong advocate.  More will be revealed, I'm certain.

nancyann

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Re: My 28 year battle with dry eye.
« Reply #18 on: April 12, 2013, 07:12:42 pm »
WOW Jill: my lens cost me $1,250.!! but if it cost $10, 000 I still would have paid it, knowing how much it has changed my life.
Wonder why the cost discrepancy? Are you in the US??
Really windy day today, & I LOVED it!! Face in the wind, & no need for lubricant!  Oh happy day!
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.

saralynn143

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Re: My 28 year battle with dry eye.
« Reply #19 on: April 12, 2013, 07:52:44 pm »
Jill Marie, why would your lens last only 4 months? That does not seem very long.
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

Jill Marie

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Re: My 28 year battle with dry eye.
« Reply #20 on: April 12, 2013, 10:47:33 pm »
Susan,  So glad to hear you won't give up on looking into the scleral lens, unless I'm missing something about what you are dealing with it seems like it would really benefit you.   Yes, we must keep doing what we can for ourselves, I've always found that I know more about my issues then the eye doctors do.  :)

Nancyann,  I live in Spokane, WA.  My lens cost less because my eye doctor says it's not actually a scleral lens, she says the scleral lens is bigger, covering more of the eye and needs special measurements to be fitted for it.  She wanted to try the lens I have and would send me to someone else if need be for the scleral lens.  As I've mentioned before this one is great, forget I have it in my eye so see no reason to try anything else.  I too would have paid $10,000 for it because of how much better my life is because of it.  I believe I've also mentioned that this past year I spent $4400 on eye ointment alone not to mention buying boxes and boxes of kleenex and eye pads, etc.  I didn't use to pay so much for the ointment but the last couple of years my eye got worse and I had to use a lot more to try and keep the pain at bay.   I'm so very happy that you are enjoying it as well!  Who would have thought this time last year that something so great was headed our way! 8)

Saralynn,  The lens lasting 4 months is a conservative estimate.  My eye doctor has never had anyone use the lens I have with ointment so she thinks it won't last as long as normal.  We will just have to wait and see how it goes, as I've said before it is way cheaper than the ointment I was using so I'm not worried about it.  Hopefully my Insurance pays for it which will make it even better.  I'm also going to get a back up lens that will cost about $50, that way if I'm on vacation and loose my lens I'll be ok tell I get back home.  Don't you have an appointment this month to see about getting a lens for yourself?  ;)


Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

saralynn143

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Re: My 28 year battle with dry eye.
« Reply #21 on: April 13, 2013, 07:01:49 am »
I have sent a message to my ophthalmologist asking whether he can help me with a scleral lens. I also called Valley Contax for a referral in my area in case he is not. Hopefully the wheels are in motion . . .
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

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #22 on: April 13, 2013, 07:52:55 am »
My eye is not getting any better. Some days really, really bad, totally red I will have to hold it closed so I can keep my other eye open.
Called surgeon, office says he has to see me and I knew that would be the answer. Don't know if I can drive the 3 1/2 hours to see him no one else to take me. I asked about the scleral lens and the nurse said the Doctor said I was not candidate for the lens with no explanation why.
Thinking I will have to see my local eye Doctor first who I also asked about the scleral lens but he never fitted one and had to research it.
I just can't figure out what is wrong with this last surgery eye seems to be irritated from the lower lid now. Should have left it alone and suffered with the way it was I guess, Hell it's been 28 years what's another 20.
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

nancyann

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Re: My 28 year battle with dry eye.
« Reply #23 on: April 13, 2013, 07:26:00 pm »
hi badyellow: You need to get on the internet to find a scleral lens fitter - if you have to travel to see my doc, Ken Maller in Ft. Lauderdale, Fl, so be it. You shouldn't have to go through the eye pain/burning I know you are going through.
This lens has changed my life. I don't know why your doc said you're not a candidate - anyone w/ severe dry eye is a candidate.
Neither my oculoplastic surgeon nor my ophthalmologist were aware of this lens.
I was putting lubricant in my eye every 1-2 hours before finding out about the scleral lens on this website which has changed my life. It took me 2 months to now be able to put it in on the 1st try every time! Research if there is someone near you who fits the lens, if not, I'm telling you, come to Ft. Lauderdale to Dr. Maller, he's amazing! He sees people fron all over the world.
Hang in there my friend - after almost 7 years of 'burning eye,' I have gotten relief....I can't imagine what you have put up with for all these years...
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.

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #24 on: April 13, 2013, 07:32:03 pm »
Thanks Nancyann I am going to find someone that can fit me with one. My local eye Doctor is pretty good. I think after he researches it he will be willing to try. It's nice to talk to people that know what it's like and care enough to help, Thank you all
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

Jill Marie

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Re: My 28 year battle with dry eye.
« Reply #25 on: April 13, 2013, 08:11:57 pm »
Saralynn, got my fingers crossed for you, the sooner someone gets you a lens the better as far as I'm concerned. 

Badyellow,  Nancyann is so very right, there has to be someone that will fit you for this lens.  If the doctor had at least given you a reason why the lens wouldn't work then you would be able to understand but just saying no isn't good enough.  It's not his/her burning eye to deal with everyday.  My eye was bothering me today, not getting enough sleep during the work week, took a nap after work this morning and feel great.  Work was crazy this morning had as many customers in a 4 hour period as we normally have in 8 hours with less employees to help, couldn't have done it without the lens, wouldn't have had time to put the ointment in like I use to have to do, every 15 minutes the last year or so.  I'm guessing that somewhere out there someone can't use the lens for some unknown reason but as Nancyann & I have said from what you have told us we can't see why one wouldn't work for you.  Could you call and ask the doctor why the lens isn't right for you, should be able to get an answer without a visit since the decision has already been made.  Would hate to see you spend a lot of time or money trying to get a lens if there really is a reason it wouldn't work for you.  My eye doctor said he didn't think it would work  (was afraid the lens would stick to my eye as it is so very dry) but referred me to whom he considered to be the best contact lens specialist in town.  I'm so very glad that finding the right doctor was so easy for me, might have given up as I have before.  I wish that we could contact everyone that has ever been on this board and those that haven't found it to let them know how great this lens is.  NO Nancyann nor I get any royalties from the lens company, we just want everyone to be pain free!  Good luck!  Looking forward to hearing that you are getting fitted for your lens too!  Jill 8)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #26 on: April 14, 2013, 08:27:04 am »
The nurse at my eye surgeons office is suppose to call me and tell why he doesn't recommend the lens for me. I still am going to seek out some one that will try to fit one. I work outside with fertilizers and chemicals (Golf Course) I don't think that would have anything to do with it. Maybe I need a new line of work. Been doing it for 35 years (since High School) now and my eye has never been this bad at work.
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

Jill Marie

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Re: My 28 year battle with dry eye.
« Reply #27 on: April 14, 2013, 09:14:14 pm »
I don't understand why my eye got so bad the last couple of years either.  I thought maybe it was the change in ointments, working more hours, etc.  I think now that it was just a progressive issue.  If I had the records to show how much eye ointment I bought over the years I would probably see that I bought more and more each year as my eye got worse.  I was to the point where I thought I might have to try for disability as I didn't think I could continue working.  You don't need a new job, you need a contact lens.  The lens I have I got the day I walked into the eye doctors office, she had a few lenses she used to try and see what would work for a patient, she let me take one home.  I tried several over the next couple of months to see what was best but always ended up going back to the first one she gave me.  Relief is just around the corner, hope you turn that corner soon!  Jill  ;)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

badyellowvette

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Re: My 28 year battle with dry eye.
« Reply #28 on: May 02, 2013, 02:56:24 pm »
Not having any luck finding anyone that can fit the schleral lens. My local eye Doctor says you have to be certified. He is going to try to get certified but who know how long that will take. Haven't looked in the Pittsburgh area but don't think I could drive the 3 1/2 hours at this point. Don't know where to turn next.
Today, Thursday eye was awful at work. Drove the hour home holding it shut. Monday was the same, Tuesday and Wednesday eye was great, almost forgot to put drops in it felt so good. What could be the difference? Same weather same job. Don't have much trouble in the morning with my over hour drive, just a couple drops in the morning to get me going.
Want to get back to my surgeon in Pitts. he wants to see me just can't make it happen. This sucks.  :(
Small orange size AN removed 5-15-1985
Tarsarophy done 5-19-1985
Thumbnail size AN removed 4-18-1993
Tarsarophy removed and 1.6g gold weight added 7-22-1993
From 7-26-01 to 2-25-2013 five more surgery's on eyelid with now 3g of gold weight

saralynn143

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Re: My 28 year battle with dry eye.
« Reply #29 on: May 02, 2013, 03:45:48 pm »
A couple of suggestions - I just stumbled upon a dry eye forum at http://www.dryeyezone.com/talk/forum.php - there is a section for scleral lenses there and you could do a search for your city and see if anything turns up.

I found a certified fitter nearby by calling Valley Contax (the lens that Jill Marie has) and asking for a referral. Their contact info is at http://www.valleycontax.com/support_contact.php

You could also contact other scleral lens manufacturers. Here is a list that I have been compiling. It is probably not complete but could be a start. Good luck.

Acculens Maxim
Advanced Vision Technologies AVT Scleral
Art Optical Paragon NormalEyes 15.5
Art Optical Rose K2 XL
Art Optical SoClear Standard
Bausch and Lomb Boston
BostonSight PROSE
Essilor Jupiter
Essilor Perimeter
Lens Dynamics Dyna Semi-Scleral
TruForm Tru-Scleral
Valley Contax Valley 16.5
Visionary Optics Jupiter Scleral
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

 


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