ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: Dena King on October 03, 2012, 02:22:32 am
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Has anyone been fitted for a schleral lens? I had a lime sized AN removed in 1981. Since that time I have had so may problems with my left eye because of total facial paralysis. It does not close all the way. I have had so many infections, ulcers etc that I can't even count. This past summer I had the worst corneal ulcer ever. Took me 9 weeks to recover from it. I actually have a scar from it. My ophthalmologist has stated I will be in need of a cornea transplant if these ulcers continue. The ulcers are from exposure. I have used so many different types of eye drops, ointments, however lacrilube at night and celluvisc during the daynworked best for me. I wear goggles at night that I purchased from Thedryeyeshop.com.
My doc referred me to Dr Kirk Leclear at the LeClear Vision Center in Louisville, Kyfor a schleral lens. It is a very large lens about the size of a penny that fits over the entire cornea into the white area of the eye. It is custom made for my eye. It basically is an aquarium for my cornea. In the center I fill it with special saline drops and it keeps y eye moist all day. I have been wearing it for about 3 weeks and y vision has improved immensly? It feels so good. Just wanted to share
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I am gad you finally have found some relief!
I was wondering if an eyelid weight would have helped you all these years to keep the eye protected?
A little too late now I guess, but I have had one since surgery last Oct. to help my eyelid close to avoid what you have had to endure,, I still use drops mostly just at night now. Just curious,, glad you have found the relief, that is most important.. Thanks for posting as it may help someone else dealing with it,,,Jane
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Hi Dena,
So glad to hear that you found something that will help your eye after all these years. I had my surgery 20 years ago so know some of what you have been dealing with. Just read the post and need to go to bed as I have to work early tomorrow but will post more later. Was wondering how much the Schleral lens costs, if you don't mind my asking, also, did your Insurance pay any of the cost? Jill Marie
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The lens and doctor charge is about $1200, my insurance company did denied it stating they do not pay for contact lenses. I had my main ophthalmologist write a letter yesterday stating it was medically necessary to protect my cornea from further ulcers or possible cornea transplant. Just sent it off yesterday will keep everyone posted. However, if this continues to work this well, no amount of money can replace how good it makes my eye feel.
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Dena, does your lens have a brand name?
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I am not sure of the specific brand name, although the drops & cleaning solution are from Bausch & Lomb that were recommended for me to use. It is just called a scleral lens. Google sclerallens.org for more information. I know they also use them at the Mayo Clinic.
Question: Since I am somewhat a computer dummy :) How did you get your information about the tumor, etc. to display below your name? I cannot find that area.
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Question: Since I am somewhat a computer dummy :) How did you get your information about the tumor, etc. to display below your name? I cannot find that area.
- Select "Profile" from the tabs at the top of the page.
- Look for "Modify Profile" on the left and select "Forum Profile."
- Scroll down to "Signature" and add your text.
- Click on the "Change Profile" button in the lower right corner.
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Thank you very much for your assistance, I think I did it!
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I have been working with the Boston Foundation for Sight to be fitted with a PROSE lens which is similar to what you have been fitted for. It is a long process in that each and every lens i have tried is specifically designed for me. So far it has been much better for me as I am able to actually see out of my eye as opposed to just having lube in it. BFS has centers across the US at major medical facilities.
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Hi Dena,
As I sit here typing my eye is burning like crazy, working to much, to much looking at computer screen at work. Would love to hear more about the lens and how it is working for you. The reason I asked about the cost is because the one place I read about it said they cost $5000. As you say paying $1200 was worth it for the relief you got. I wouldn't bat an "eye", pun intended, at spending the $5000 if I knew it would work and last a couple of years because I spend so much money on ointment now as it is not to mention as you say, how great your eye feels now.
From what I've read it takes quite a few tries before they get the right lens for you and not just any place has them. Will have to make an appointment with my eye doctor and see what he knows about them and go from there. Did you have problems learning to use them and to get use to the lens in your eye? Of course after what you have been through I guess it wasn't a big issue, probably wouldn't be for me either has I have been through quite a bit too. I use ointment 24/7.
Thanks for any help you can give me and please do let us know how you continue to do and if the Insurance company pays for any of the lens. So very glad you posted, it's the best news I've heard in 20 years. Even if it doesn't end up working for me it's good to know that they are working on things that will help us.
Thanks so much, Jill :) :D
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The price is expensive. Boston Foundation for Sight does charge $5000 per eye. They do offer some help with the cost if necessary. My insurance did cover 80% of the cost. Once fitted the lens can last a very long time, years. It took a little while to learn how to use it but now it is easy. I have a fit check on Thursday. It is great to be able to see without it being blurry. But because my eye does not blink it sometimes gets hazy so then i need to force a blink to clear it out. I feel like I am a safer driver and even my balance has improved since I can see better.
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Update on my scleral lens...... I have made numerous trips to my doctor, but have been very pleased. The lens is only worn during the day and has to be soaked in a special solution all night. The initial hope was that I would only need to use systane liquid gel drops at night along with goggles or bubble patch. However, I was still having dryness issues in the am and we decided that for my comfort, we should continue with lacrilube ointment once at bedtime along with my bubble patch. Obviously this causes blurry vision, but in my case my comfort is more important than the blurry vision.
The scleral lens is working very well. As a matter of fact sometimes I actually have to look in a mirror to make sure it's still in there! Biggest change is when I go outside no more stinging or burning from wind, etc.
It is difficult to learn how to put it in, but just takes practice. Sometimes it still takes me several attempts.
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Dena, Glad to hear the lens is still working for you, good news for others as well. As usual the blurriness of the ointment is worth the comfort it gives. Do you tear at all? I'm wondering as previous attempts at getting some kind of contact lens were scrubbed as they said my eye was to dry to wear them. In my mind I feel I have no tears/natural lubricant at all but the eye doctor says I have a little. When you put the lens in do you wear it all day? I read somewhere that depending on how dry your eye is you have to wear it only a few hours a day or put it in every 3 hours or so. If so still better than what I do now but was wondering. Thanks again for letting us know how you're doing! Jill :)
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I do not think my eye tears as well, but my doctor does. I had to gradually increase the hours that I wear the lens, but now wear it about 8 to 10 hours a day.
The biggest help is protecting the eye with either a bubble patch called nite eye or wearing goggles. That way you wake up with your eye less exposed to start out your day.
For some reason and my dr doesn't know why, when I exercise or become very hot, my eye waters a lot, but all other times it is very dry if that makes,sense. This happened when not wearing the lens also.
I also always wear big sunglasses outside with snug fitting sides for protection.
Hope this helps you!
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Yes, Dena it does help, a lot! It sounds a lot like what I have been going through so hopefully the lens will work for me too! I need to look into the bubble patch as the patch I have been wearing was working fine but not as well lately. My eye also waters when I exercise, cough or chew real fast. Thanks again for your help and info. Jill :D
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Thank you Dena for sharing about the schleral lens. My ophthalmologist recommended Dr. Leclear some time ago but I am just now thinking I should really explore this option more. After 6 1/2 years of an extremely dry eye I figure anything has to be better than what it is now. I am aware of the cost and that you only wear it during the day but often does it need to be replaced? I read online 1-3 years. Also, do you buy your supplies from Dr. Leclear or do you have a specific place that is less expensive? I use an erythromycin ointment for my eye at night but sometimes I tape the eye with a waterproof adhesive tape. I have a patch but I toss and turn so much that I can't keep it on. You give me hope for dry eye relief. Thank you, I will have to call to schedule an appointment.
Lisa H.
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I was told the lens would last about a year, sometimes longer he said. I have spoken with another patient and his first one lasted about a year and a half. You do not buy any of the eye drops, cleaning solutions, etc from Dr. Leclear. The solution drops that go in the lens itself is a written prescription. It is a box of 100 tubes and with my Human insurance I only had to pay $10. I buy the other eye drops, cleaning solution, etc. at Walgreens, but have seen it at Meijer and Kroger as well.
The bubble patches I wear at nite are wonderful and they do not come off. I see you are also from Southern Indiana may I ask who your Opthalmologist is? I go to Dr. Catherine Newton in Louisville.
Believe me after fighting extremely dry eye since 1981, this lens has been a true blessing. I will be honest it does takes some practice to get the lens in. I would be more than happy to share more information if you would like to privately message me. Dr. Leclear is wonderful. Really cares about his patients.
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Hi Dena,
Would like to know where you get the bubble patches from. Did some looking on the Internet last week and didn't have much success at finding them. Saw my eye doctor last week and he referred me to a specialist so I can look into getting the schleral lens. Played phone tag with the doctor all week, hopefully I can talk to her next week so I can find out if the lens will work for me. Thanks again for your help! Jill
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Hi Jill,
I order the patches at www.dryeyeshop.com, they are called NitEye patches. I believe they were $4.35 for two of them. I can usually use a patch for 3 nights, I just clean them out with a little saline solution to sanitize the bubble area just a bit, but not to get the sticky part wet if that makes sense.
They have other things on their website as well. I bought a pair of the lasik goggles to wear sometimes also.
Good luck!
Dena
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Thanks Dena, I will order some now. Jill
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Sorry Dena it has taken a couple of days to reply. I don't get on my computer as often as I like with a 3 year old running around. My ophthalmologist is Dr. Douglas Gossman in Louisville. He has been great to me and actually told me about Dr. Leclear about two years ago. I am just now looking into the phonak cros hearing aid but I am also really interested in helping my dry eye. I cannot believe six years have passed by and I have dealt with the impairment. I want things to be better. Wow, I wish the lens lasted longer. I may talk with you privately another time. Thank you so much for offering. I cannot commit to both right now so I am starting with the hearing aid. I go next week to Doctors Hearing care to talk about aids. They mentioned the baha but I really don't want another surgery. Anyways, things are on my mind and now I know I have someone I can talk with that is using the lens. That is great. Thank you again for sharing.
Lisa H.
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Dena,
I finally got an appointment with a contact lens specialist. It's been 3 weeks since my eye doctor gave me the referral, because of lost faxes and playing phone tag I decided to type a letter and mail it to the doctor. She called me the next day and I set up an appointment. She says she's confident she can help me, trying not to get my hopes up encase it doesn't work out. I don't see her tell Dec 12th, will let you know how it goes. Perhaps this will be the best Christmas present ever! Thanks again for kick starting my search for relief. Jill 8)
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Dena: WOW!! Thank you so much for this info. I use Refresh pm ointment constantly, also wear the NITEYE bubble patch at night. This lens sounds amazing! I will look into it, check w/ my eye docs. Maybe I'll be able to wear eye makeup again (the ointment leaves my lids greasy & eye makeup never stayed on the paralyzed side).!
Always good thoughts, Nancy
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Hi Nancy,
I saw my contact lens specialist a few days ago and she ordered my permanent lens for me. Been using a loaner lens until we were sure it was going to work. She told me that the lens was originally made by one company but as businesses do, several other companies started making similar lenses under different names. Its a gas permeable lens, the company that makes mine is called Valley Contax, the lens itself is called Valley 15. Different companies sell there lenses to different parts of the country.
I've been told the lens will cost around $250 and last 3 or 4 months. My Insurance should cover it but if it doesn't I'm not worried as it will be way less then what I pay for the ointment not to mention how much better I feel. She fitted the lens for me the first day I saw her. I posted about it under subject: Early Christmas present, if you want to know more or you can just ask me.
She has been working with another doctor lately to show him the benefits of the lens. He asked why the lens was not flat across my eye, she told him it was to make sure the lens didn't stick to it. I have seen a couple of eye doctors the last few years and none of them would try a contact lens on me for fear of it sticking to my eye because it is so dry. I was to the point where it didn't matter, was willing to try anything. The lens is GREAT, there are so many positive things to having it!
I think the eye doctor wants to experiment with me as she hasn't seen anyone with the issues I have and wants to learn as much from me as she can to not only help me but to help others as well. Will let you know if I learn about anything else that might help you. Please let me know what you find out from your doctor. Take Care, Jill :)
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hi Jill: my eye doc wasn't sold on it, I emailed him some research about it. I noticed optometrists are doing fitting for it. If he doesn't help, I will go to an optometrist in my area who has been fitting them for others.
Do you fill the lens with fluid, & does the fluid stay in the lens to keep your cornea moist? Is there any concerns re: infection b/c liquid is stagnant against the cornea?
Thank you again for this information!
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Hi Nancy,
Please, please, please keep trying to find someone that will work with you. I know we are all different, my left eye blinks when my right one does, if memory serves me correctly your eye doesn't blink, I might have more tone in my face to keep in eye drops, or I might have less tone then you. I do believe from what my doctor has told me that there are lots of options and there is something out there that should work for you and me.
My eye was so dry and hurt so very, very bad that I would often take naps after work, would nap for two hours Saturday & Sunday after sleeping 8 to 9 hours. By Thursday I could hardly look at a computer screen because the brightness hurt my eye, I hated sunlight. My eye was so red that customers would ask if I was ok, I could see the damage on the edge of my cornea, it's gone now. One week after I got the lens the doctor said my eye went from a blank screen(completely scarred) to waves of scarring and good tissue, (read the big E and two lines below it for the first time in 15 years or more), two weeks later she said my eye looked like a finger print, little lines of scarring. It's only been a month! This past weekend was the first weekend in a couple of years that I didn't take a nap during the day despite staying up later than I should have, busy enjoying my new freedoms. Not sure what caused it to get so bad the last couple of years, thing it was a long slow progression.
Ok, now for answering your questions. I had read that they don't want you using the lens more than 8-10 hours a day because of possible infections. The first day I got the lens I wore it for 2 hours, was very nervous as I was afraid it would be stuck to my eye. The next day was 3 hours, then 4, then 6 THEN 12 hours. I have worn it from 7:30 a.m. tell 10:30 p.m. every day since then. I put preservative free drops in the lens, if I put to much it feel strange for a little bit then I'm fine. I put ointment in after that as needed. I use to use 2 to 3 tubes in 8 hours, now I use almost half a tube. I bought some thick gel drops in single vials a couple of days ago and will try those instead of using the ointment. Not sure I have the tone in my face to hold the drops. I read somewhere that you would have to take the lens out and put more drops in every few hours but I haven't had to do that, would be more than happy to do it if necessary but glad I don't have to. I haven't had any infection issues at all, my eye feels WONDERFULl!
My doctor said she has a lady that wears the lens 24/7, against her wishes but so far is doing fine!
Years ago I went to the clinic I'm at now but stopped because they insisted I have my eyes dilated, it burned my left eye so bad I swore I would never do it again. They said they wouldn't examine my eyes if I didn't so I went elsewhere, he was an ophthalmologist, thought it was best to see him because of my eye issues. I ended up going to a very caring optometrist, he's the one that referred me to the contact lens specialist back at the clinic that I use to go to. I wrote her a detailed letter about what I was going through and she personally left me a message on my phone saying she could help me.
I clean the lens every night with an extra strength cleaner made for the lens then soak it over night. I've had a day or two where it take a couple of tries to get the lens to stay in, 5 times one day, arghh! One night last week it took 15 minutes to get the lens out at night, arghh again! Most days and nights it's in and out without a hitch, told you the bad times so when you get your lens you won't panic when it doesn't go well knowing that sometimes that's the way it goes!
Did your eye doctor say why he wasn't sold on the lens?
Can't wait to hear what you find out and of course can't wait to hear you are trying the lens and that it works for you! Jill :D
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Hi Jill: Thanks for the info re: how you're doing w/the lens.
My eye doc gave me the okay to try it - he told me 2 places that fit the lens, but I found an optometrist who has been fitting them, so tomorrow I will call for an appt.
I have total paralysis since my surgery, no tone, etc. My eye closes (not all the way) b/c of my platinum weight.
So again, thank you so much for the info & will let you know what happens. Thank you Dena for finding out about this too!
I made my appt. today: 11/30/13 - will let you know what happens!
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Had my appt. today w/ Dr. Ken Maller, optometrist in Ft. Lauderdale, Fl. So he took the measurements for the scleral lens on the right and a corneal contact lens on the left. He said my vision will be so much better! I go back next week to pick them up, see how it fits & 'learn' to put them in (& take them out). I can't wait! Thanks again Jill and Dena for finding out about this. I am forever grateful...
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Hi Nancyann, so very glad to hear that you got fitted for your scleral lens, I think I'm almost as excited as you are to see how it works for you. Up until last Wednesday I was using a loaner lens, I got my permanent one and it doesn't fit quite right, my upper lids rubs on it so I will be getting it adjusted. I'm telling you this so that if yours doesn't feel quite right let the doctor know so he can fix it. I realize it will feel a bit odd at first so it's hard to tell if you are just getting use to the lens or if it isn't fit quite right. My loaner lens was a bit off as well and she fixed it right there in the office. Tonight I just couldn't get the lens out and was starting to worry, then I remembered I had a spare "plunger", got it out and it worked the first time. The plunger is a little rubber thing they give you to remove the lens with. Like all things they wear out.
My Insurance paid for my office visits but don't know yet if they will pay for the lens itself.
You are very welcome Nancyann, I too am forever grateful to Dena. Can't wait to hear how you and the new lenses are doing. If you have any questions please feel free to ask. Hoping that when little things come up now and then we can help each other out.
Jill
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Jill: My doc told me he might have to 'tweek' the lens, but hopes he won't (me too).
He'll write a letter to my ins. co. along with the bill. I know I have $200. deductible for out of network, but hoping they'll pay for the lens, we'll see. Will write back once I get the lens.
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Nancyann, will be here waiting for the results!
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Have the scleral lens in now for about 5 hours! It feels like a twinge of burning but never progresses - I think it's just that I was so use to lubricant, not having any on takes getting use to. I am amazed at the fit. The doc said it looked a little tight in 2 places, so I go back in 1-2 weeks to see how it's going. I don't feel anything 'tight.'
I'm able to put it on & take it off. The regular contact lens on the left eye is another story - I don't know if I'm going to wear it yet. I have alot of trouble taking that one out.
The doc thought I'd have trouble with the scleral lens, not the regular one!
I can't believe I'm not putting lubricant in, no lubricant to wipe off under my eye!!
I'm very happy so far, we'll see how it goes. Thank you soo much!
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Thanks for all the wisdom out there, I just had surgery on 01/23/2013 (left AN) . Ive had the tumor for over two years and the risk of the surgery out weighed the benefits, I lost my hearing in my left ear a few years ago. My surgery went without a hitch and if fact I was home two days later. Well now I am two weeks post of and I developed left side paralysis and I can not blink or close my left eye lid. Not to mention now I have balance issues. This eye issue is really stating to dive me crazy, my eye lid and is sore because I keep using drop and can help but rub it. I follow up with my surgeon tomorrow for suture removal and this eye issue. I've already thought about the eye sutures as you know tape does not work. My question if you were working how soon were you able to return? I am a Registered Nurse in the ER and there is no way I can care for patients with this eye issue. Any suggestions ?
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Congratulations Nancyann,
So glad you got your lens and especially happy to hear that you can wear it that long from the start. I had what I would call a bit of irritation at first, doctor tweaked the lens and all was good. It will take a bit to figure out if the lens isn't quite right or if you are just getting use to it. Yes, not using the lubricant takes a bit of getting use to. I actually still use some but a tiny amount compared to what I use to do. You will know in a couple of days if the lens is to tight. I got a new one to try a couple of weeks ago, the first couple of days it bothered me a little but got progressively worse, to the point where I took it out after work, couldn't wait to remove it. I am now going back to a looser fitting lens and a bit smaller.
So glad to hear you aren't having any problems putting the lens in or taking it out, I know I was a bit nervous the first couple of times I did it. Is the regular lens a soft contact lens? You definitely deserve a break and it looks like you finally got one when you found that the scleral lens was the easier of the two to take out. I was so thrilled to read your post, I know how you are feeling about the lens and not using the lubricant. I understand your being happy so far, I keep wondering if it's to good to be true!
Please keep us posted! I hope that Dena checks in soon so she can read all about how much she has helped us! :) :) :)
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Ramirez: Hope your visit with the surgeon went well. He/she should let you know what you need to do for your eye. I use to use Refresh PM lubricant exclusively (until a few days ago), & at night used the Niteye Bubble Bandage. Don't know if you need an eyelid weight or not. I did not return to work for 2 months. I can't imagine going back as an ER nurse! Is there some 'light duty' you can do until you see how you're feeling? You may need to start slow, I went back part time for 2 weeks.
Jill: Last night I wore eye shadow for the 1st time in 6 years!! I had the lens in for 14 hours! I go back Wed. so he can check the fit, but it seems to be fine to me! Thursday I had a little trouble removing it, but last night came out on the 3rd try!!
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The past 2 days it's taken me 7-10 tries to get the scleral lens on without any airbubbles.
I don't know why I keep getting air bubbles.
Does this happen to you? Are there any tricks to prevent it?
Will check with the doc...
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I am still very interested in all of this. I think I will ask my occuloplastic surgeon (who is young & seems REALLY up on eye things) what she knows about this!
K ;D
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Nancyann,
Not sure what to tell you about the air bubbles, I don't have a scleral lens like you do so not sure if there is a big difference between your lens and mine as far as air bubbles go. I do have issues sometimes if I put to many drops in the lens, now that I think about it perhaps its air bubbles too! I've only put the lens in more that once a couple of times. Sometimes I just push on the lens a little with my lid down and that gets rid of the excess drops/air bubbles. Usually I just go to work and everything works out in a 1/2 hour or so. Hopefully the doctor can help you out more and I will ask when I go back at the end of the month.
Kaybo, as I told Nancyann, please look into this, an occasional bad day with my lens(trying different ones) is better than the best day without it. Let us know what you find out, realize it's not for everyone but so far it has worked for all that have tried it or something like it. Good luck, Jill
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So I sent my Dr an email yesterday asking her if she was familiar with this and if I could benefit...her office called me today and she wants me to come in!! I have an appointment for TOMORROW but I am going to have to cancel - I forgot that the sisters have early dismissal! Bummer...I'll keep you posted!
K ;D
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just got back from the doc - he said it just takes time to get the hang of putting the lens in. Today I got it in on the 4th try. He is ordering another lens since this one is a little snug, but I can continue to wear this until I get the new one next week.
I actually put eye shadow & eyeliner on!!!
& to think I asked my oculoplastic surgeon to remove my eye & give me a fake one - I was so tired of the burning, lubricant... So glad he refused!
I cannot thank you enough for telling us all about this lens.
I feel like a teenager again!
Kay - you are going to be amazed with this lens! Mine is a gas permeable.
On weekends I'm going to keep trying to work w/ the regular contact lens for my other eye.
Always good thoughts, Nancy
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For those of you that have had trouble putting it in, is it different than putting in a regular contact? I have worn contacts for about 30 years - obviously not in my right eye after my AN...is it b/c that side is paralyzed? I have no feeling in that side either...
K ;D
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Kay: the scleral lens is filled w/ saline, then applied. The only problem I'm having is w/ getting an air bubble in it. The doc said it will get easier.
I actually had trouble w/ the regular lens taking it out, which is why I stopped using that one, but I'm going to keep trying to work w/ the regular lens on weekends, when I have more time (the regular contact is also gas permeable b/c I have dry eyes...).
This morning I got the scleral lens in without an air bubble on the 4th try, which I was very happy with.
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Kaybo, Have you made a new appointment to check on the lens? The gas permeable lens is a hard lens not a soft contact lens, so putting it in and taking it out is different. I use what they call a DMV(small rubber thing) to remove the lens. I still use a bit of eye ointment so the air bubbles/saline solution in the lens doesn't bother me after I've had the lens in for a few minutes. Once we find the best lens and fit for me were hoping I can go with only using Celluvisc drops. The doctor is pushing for it more than I am. She wants to see just how much can be done for me and others she works with. I'm just so unbelievably happy with the change in my life that it's not that big a deal to me.
Nancyann, Getting a new lens will make a difference, I was surprised at how a small change in the lens can make me go from loving the lens to looking forward to taking it out. I/we obviously still have a lot to learn but that's ok. I too was on the verge of wanting the eye removed. I told the eye doctor that got me my lens that I really just wanted the eye gone, couldn't take it anymore. She told me if she couldn't help me with the lens I have that she would send me to someone that can do the scleral lens so I know there's a difference, just not sure what it is. Will quiz her some more at the next visit. Something you might also want to keep in mind is, what happens if you loose the lens. I would hate to be on vacation and loose the lens down a drain or something, that would ruin the rest of the vacation for sure. My doctor is going to get me a cheap version of my lens to keep as a spare so I will be ok tell they reorder a new lens. Haven't seen a bill yet for my lens, will let you know how it goes. Glad to hear you are getting better at putting in the lens, makes it less frustrating. Still way less time consuming then the old ointment, hurray!!!
Looking forward to more positive reports on what I call a miracle! Jill ;) :) :D ;D 8)
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OK - one more question...does the lens just help with lubrication, or can it be for correction too?
Yes, JM, I have an appointment on 2/27!
K ;D
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Hi Kay,
It's for correction too! Glad you have an appointment, good luck! Best get back to work. Jill
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Now that makes me VERY excited...even though I had the miraculous improved vision after AN surgery!! Seriously, it went from 20/400 in my R eye to a "come and go" (because of dryness) 20/30!!!
K ;D
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With the scleral lens my vision is 15/20 (or is it 20/15), anyway, haven't had this vision since my teens! UNBELIEVABLE!!
Dena, you ROCK for finding out about this lens!
Jill, thank you for all your support!
Kay, you are going to love this lens!
& for everyone w/ dry eye due to the AN, go for it!
I had the lens in today for 16 hours! No need for lubricant or drops!
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Hi Nancyann,
You are very welcome! Can't wait to hear how Kay does and hopefully the word gets out to others as you said and they can be as happy as we are. I am a little jealous as I still use a little bit of ointment but that could change, still happy as can be. I sent Dena a message to let her know how thankful we are, hopefully she checks this thread soon to see for herself how much she has helped us. Have a great weekend, Jill :D
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Oh my goodness how time has flown by.........I am so thrilled to have helped you guys find some relief with your schleral lens. I continue to wear mine as much as I can. With the very cold temps here in Southern Indiana, the heat is on a lot and drys out my eye more. The heat in the car is worse.
One tip for easier insertion I have found is while bending over I open my eye as far as I can and with the opposite hand pull down the lower lid and insert the lens up and then under the lower lid. The little air bubbles are fine, but that actually means that the lens is not completely full with saline. Dr leclear said if the bubble is just about the size of the end of a ball point pen that should be fine.
I still use lacrilube ointment just once at bedtime. Doc would prefer I didn't use ointment at all, but I can't stand to go without it. I also wear either a bubble patch or goggles. Every night. But during the day oh man what a difference the lens makes. My vision is staying somewhat blurred because of the ointment, but after 30 plus years I am used to it. Best of all my cornea is not thinning.
Sometimes after wearing the lens for a long time, when I take it out (always with little blue rubber plunger) it really burns for a few minutes. My ophthalmologist prescribed bromday drops just once that helps. Also if the eye starts gettinga little dry feeling, I take it out and soak in contact solution for an hour or so, then put it back in.
I cannot imagine wearing any kind of makeup ever, no way I could.......
All in all life is good!
Sorry it has been so long!
Dena
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Today I got my 2nd (refitted) scleral lens - my dr, Kenneth Maller shapes/sizes it himself - this one is the perfect fit (even though w/ the 1st one I could wear it for 16 hours). I don't feel this one at all! He talked w/ me again re: the contact lens for the good eye - I have been hesitant, refused to wear it b/c I don't like contact lenses. He adjusted it, put it in. I have had it on for over 4 hours now & am doing great. I do add Systane single dose eye drops as needed, but I am adjusting to the feel of it & will wear both lenses to work tomorrow. My vision w/ both lenses is at least 20/20.
I can't wait to tell him when I go back in 2 weeks. He will be very happy to see me without my glasses on. I will wear both lenses from now on & over the weekend buy a pair of non Rx. sunglasses! This scleral lens is amazing (have I said that enough?).
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I talked to the occuloplastic (sp?) yesterday when I was there for my scratched cornea. Did y'all go to a special, specialist for the scleral? She made it sound like that there was only one Dr in all of Houston that could do this...even though the Dr I had to go to today was a corneal specialist...I asked the Dr today but he wasn't overly familiar with them - he said he would research it. SO...do I go with him or do I drive into another part of Houston to go to "the one"??? It doesn't matter right this second, though, since my eye is all messed up right now...
K ;D
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Well all I know is my doctor is the only dr fitting the scleral lense in all of LOUISVILLE, KY, so it is very specialized and there is a lot of training involved to learn how to measure and fit.
Good luck to you, I hope you find the right specialist to help you.
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K: believe it or not, ophthalmologists & even ocuplastics aren't known for fitting a scleral lens, optometrists are & then, like Dena said, it is very specialized. I googled scleral lens & that's how I found my optometrist, read up on him & decided he was the one. Most of his scleral lens fittings are for people with Lasix surgery gone bad.
While I was reading about the scleral lenses, one of the researchers said she felt eye docs need to learn about this.
Good luck K, I know you'll find an optometrist specializing in scleral lenses!
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OK girls - so what about insurance? Did your medical insurance pay for this? Do we have a code? Is this kind of what I have heard about the BAHA vs hearing aid fight?? The office insurance girl called and wanted my vision insurance info...not that I mind giving it to her but she said she needed to see what it covered for a contact lens fitting. From all I have heard from y'all and what the Dr's have said, it sounds like I would get it more for MEDICAL purposes than vision...
Thanks,
K ;D
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Hi Dena,
So good to hear from you and once again, thanks so much for telling us about the lens. Life is way better now and will be even better once I get the lens right and start enjoying outdoor activities that I neglected last year because of my eye. I know what you mean about still using the eye ointment, my doctor would love to see me stop using it as well but I'm not ready to do that and not sure I ever will. She is every excited about seeing what can be accomplished both for me and her profession, where I'm just thrilled beyond belief to be using such a small amount of ointment.
As for the cornea, she didn't say anything about mine thinning, then again maybe she did but didn't use that term now that I think about it. She said the layer was gone, then a week or two layer it was an uneven quilt of bumps and now my eye looks like a regular dry eye. She could barely keep herself from jumping up and down with joy and feelings of accomplishment when she saw the cornea today, her assistant was surprised as well, said it looked 5 times better. I was relieved as I've had a couple of lenses that haven't worked so well for me as they try to find the right one and I've not been wearing the lens as much as I would like.
I use the plunger too, in fact I bought a multi pack on line last week from Amazon.com, think they came out at about $3.20 a piece, I ruined one in about 6 weeks so figured I best keep some on hand. I'm letting them air dry now so hopefully they will last longer now. Thanks again, Jill :D
Nancyann,
So glad to hear that you don't feel the lens at all now, that's important. My first lens rubbed the outside corner of upper eyelid, doctor tweaked it and all was good, she decided to try another lens that was a bit bigger and would fit a bit tighter, therefore protect more of the eye and less likely to move around or fall out. Then lens was extremely irritating, couldn't wear it very long. She gave me another loaner lens that was a size between the first and second lens ,it worked ok, wore that why she got me a lens like the first one I LOVED! Got it last week, it didn't work, so today she tried 3 different lenses, the last one fit the best, she tweaked it a bit and now I can't feel it at ALL! It's amazing what a little change in the lens can do as far as feeling great and wanting to remove it because it feels like something is in your eye and you just want to get it out.
How's the other lens working for you? I completely understand your wanting to keep saying how amazing the lens is, after everything you've been through you deserve to be able to say it over and over again, we hear about the bad things that happen to people constantly in the papers so it's good to read good news and be reminded that good things do happen.
Keep us updated, Jill 8)
Kay,
Sorry to hear your cornea is scratched, not sure that means you can't get the lens now. In fact it might help heal it, not a doctor but it's something to look into. As I mentioned earlier in this post, my cornea was really messed up and looks pretty good now.
Glad you asked about the Insurance for the lens, was planning on asking about that as well. I got my bill today and the lens was denied by my Insurance but all my office visits have been covered, only paid the $25 copay. When I first talked to the doctor she said she was pretty good at getting insurance companies to pay for the lens for medical reasons, but a couple of weeks ago she said she wouldn't be surprised if I had to pay for the lens. I rather not pay for it but it will still be cheaper than using all the ointment I had been using not to mention so much easier. Will ask her to resubmit the bill to the Insurance with special info.
My lens is NOT a scleral lens, it is a gas permeable lens like the scleral lens but not as big. My doctor told me that the lens she does is from 14 to 16 where the scleral lens is an 18 and needs even more special fitting then my lens. My lens costs $250 where she says the scleral lens is $10,000, although I thought I read that it is more like $5,000, still a big difference from what mine costs.
Can't wait to hear how it works for you! Jill ;)
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My doc is waiting for my final appt. to submit the bill to the insurance co. The scleral lens cost me $1,250.00, well worth the $$ - I spent a little over $600 last year for lubricant, so in 2 years I come out even. I was told the lens will last 2-3 years. (My total cost for everything is approx. $2,500., which included the contact lens & all visits to the doc).
My doc doesn't want me to use a plunger to remove it - I don't know why but I'm doing okay removing the lens now. It's putting it in that takes time, but I figure w/ practice that will come
along.
I'm going to wear my regular contact lens on weekends until I get use to it - I find myself using lots of Systane single dose during the day, & it still is difficult for me to take out, + the doc said I'm sort of 'hurling it' when I put it in, so practice, practice. My vision is so much better w/ the lenses.
Well, good luck everyone w/ the lens - this was the BEST birthday present I gave myself!
Always good thoughts, Nancy
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Well guys I have read this whole thread word for word and I just found a doctor in Chicago the fits scleral lenses. Dr S Berry Eiden at North Suburban Vision Consulants. It is an hour and a half drive from my house but I was thinking that I had to go to Iowa or Ohio so this drive is OK. I live in northern Illinois. It's been 21 years and my eye is the thing I wish most that I could change. Well it sounds like I can now take a little stress off my attending to it constantly. I do wear makeup daily even though I use eye ointment throughout the day. I'm not sure why many have said that they do not, I just apply it after my shower before I put ointment in. The one question that I have for you guys is do you get a mucus build up in your eye during the day before you got the scleral lens? I do and I was wondering the effect on the lens. When this happens it burns, I then take a Qtip with saline on it and remove the mucus then reapply ointment. I just can't believe the great information that I had obtained on this site. First the SoundBite hearing divice (been fitted and awaiting it to arrive April 18) now this! All this information on new technology when I finally came to peace with all my weaknesses.
THANK ROR EVERYTHING, Sue
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Hi Sue,
It will be 21 years in June that I had my surgery so I can truly relate to what you have been going through. If I could choose between my hearing, smile or eye issues I would hands down ask for an improvement in the eye issue as well. If you're interested I posted some more about the lens in a thread called: Early Christmas present. As for the mucus, yes I had it too before the lens, I would clean it out with my finger/finger nail, was afraid to use a cotton swab or anything like that, was worried about it getting stuck in my eye as well. I don't have the mucus issue now as far as I can tell, I still use ointment in my eye a bit so it is blurry but so, so, so much better that it was before the lens. I'm assuming you live in a small town and that is why you have to travel to get the lens. It or a similar lens isn't as special as I thought it was in the beginning. My eye doctor says I don't actually have a scleral lens but the paper work that came with the last one said it was, unless of course it's a paperwork for all lenses fits one type of a deal. Look forward to hearing how the lens works for you! Jill :)
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Hi Jill
Thanks for your responce. I do live in a small town but my neighboring town is only about 15 minutes away. I looked on the sclerallens.org web site and they do not list many trained doctors. Dr Eiden is an accredited doctor with a long list of accomplishments. He is considered an expert in complex cantact lenses and is a research consultant. I feel more comfortable with his experience so I will drive to go see him. I go to your Christmas thread and read that too. I will update when I get it.
Sue
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Hi Sue,
At work so just a quick note. Found I had a bit of mucus in my lens eye this morning, my eye was irritated last night so I took the lens out. As I mentioned in a previous post they are trying to find the right fit and I guess this last adjustment wasn't quite it. What I'm trying to say is there shouldn't be any mucus issues if the lens fits right and your eye is doing fine. Will get my loaner lens back after work and they will try to get my permanent lens adjusted again. Still, would take a lens that's not quite right over no lens at all. Good luck with yours! Jill ;)
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Hi everyone: I do get a little mucous during the day & it ends up on the outside of the scleral lens, so I remove it w/ a tissue. Still getting the mucous strings. I tried to use systane drops at night instead of lubricant before putting on my eye bubble, but it caused my eye to swell a little & I would find a 'ring' around my eye where the lens was, so I'm back to putting lubricant in before bed. I'm getting a new lens since the doc saw some 'blanching' from tightness.
All in all, I'm in heaven w/ this lens. I now LOVE the wind blowing on my face! Always good thoughts, Nancy
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I have an appointment tomorrow morning. My regular ophthalmologist does not fit scleral lenses, but I got a referral from Valley Contax for an optometrist in a nearby city. I e-mailed him last night and he replied that he treats many patients with similar issues.
Fingers crossed.
Thanks,
Sara
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Sara let us know how it goes tomarrow. I have an appointment to see a contact specialist the 29th of this month. My fingers are crossed for you as well.
Sue
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Sara, So very, very glad to hear that you have an appointment tomorrow, as Sue said, please let us know how the appointment goes. If you have questions please ask, I'm sure Dena, Nancyann or I can help you.
Sue, Also so very, very glad you have an appointment on the 29th, hope the time goes quickly so you can get some relief.
My Insurance company denied my claim for the lens, my eye doctor appealed, got an automatic rejection, now onto the next step, will let you know how that goes.
Can't wait tell you two are sporting your new lens! Take Care, Jill
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Hi Jill,
I've dealt with this eye for 21 years what a couple of weeks or so. I like Sara am looking forward to tomorrow, my new SoundBite is in and I will be going to the doctor to get that adjusted.
I know all too well about the insurance thing. My soundBite had to go before the insurance board and I won. They already told me that the same thing will happen with the schleral lens. The specialist in Chicago doesn't take my eye care insurance so I'm hoping it will be covered my my medical insurance. We'll see.
Take care and let us know about the insurance, Sue
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Just posted an overview of my appointment at http://www.anausa.org/smf/index.php?topic=18669.0
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Sorry Sara that today was a disappointment for you. :( If this can be done without the use of the lens then it will be for the best. And you are right, what is three months? Hoping this is your answer. Keep us posted.
Sue
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Well I was fitted for a scleral lens Monday and loved it! I actually walked away from the appointment 3 hours later with no lens. I'm going to wait to see if insurance covers anything before I purchase it. I just can't swing the cost right now since I just purchased a SoundBite last week and my out of pocket expense was $1300. Soon thought.
Sue
Any one heard from their insurance yet?
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Hi Sue,
My insurance rejected the first bill and the first appeal, sounds like it's customary. Gave the doctor the papers for the next appeal a couple of days ago so it will be a bit before I know how it goes. Will definitely let you know when I know! Jill
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Hi Jill,
Keep me posted on the insurance. I'll keep my fingers crossed for you.
Sue