ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: tugnutt on August 18, 2016, 03:30:46 pm
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I'm a newbie, have been a lurker here in the past! I had surgery in October 2015, and, like many of you, I'm now deaf in my left ear, and have some facial paralysis, which includes my left eye. I have a gold weight in my eyelid for blink support. My primary frustration is - as many have identified - care for the eye.
I haven't yet found a doctor that will even consider a scleral lens, yet I see so many reports here of success! I am eager to take the next step with being fitted for a scleral lens, but would (of course!) like to find someone relatively local to help me. I live in Northern Virginia - any suggestions?
Thanks tons!
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I was in the same situation as you back in 2011. I have a weight in my lid and no tears are produced so I have terrible dry eye. I was fitted with a scleral lens at the Boston Foundation for Sight in Needham, MA. They are amazing. They have several satellite locations with exceptional doctors trained in the process. It has truly changed my life having the lens. See if you can locate an office near you or consider traveling for the fitting.
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Thanks, Kerry! I'll start researching them now. I saw one ophthalmologist in VA who said a scleral lens couldn't be used for dry eye. By everything I read here, it sounds like that is one of the benefits of the lens! :)
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Ok so that is certainly the wrong Doctor. This lens is ideal for dry eye. It is an oversized hard contact lens that you fill with saline in order the bathe your cornea all day.
So keep looking. You will not regret it.
Good luck.
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Funny thing. Ophthalmologists are less likely to embrace scleral lenses than optometrists. At any rate, I wrote some weblog posts about my scleral experience. The first one is at http://www.sarahartman.com/the-eyes-have-it/ and there are links to subsequent posts at the bottom. The first post contains links to a number of scleral lens brands. Many of the sites have lists of practitioners.
Good luck.
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Thanks, saralynn! I'll check out the info. I so appreciate everyone's help. :D
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So, I have been doing some research on scleral lens providers. As I live in Northern Virginia, the closest facility that appears to have scleral lens expertise is Johns Hopkins in Baltimore. Has anyone been seen there for a scleral lens? I have an appointment in November to see Dr Boahene about surgery for my facial paralysis, as I have heard good things about him on this (incredibly helpful!!) forum.
I would like not to waste any more time - I can travel to MA if that's necessary, just trying to get a little intelligence about Johns Hopkins. Here are some names:
Anisa I Gire, Laura DiMeglio,
Thanks!!
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While you're researching the scleral lens you might want to try a less expensive lens to see if it will help you. I had a lens for about 3 years that was similiar to the scleral, didn't have to have it fitted so I took it home with me on the first visit. My regular eye doctor sent me to an eye doctor that specialize in dry eye issues. He told me not to bother making an appointment because she probably couldn't help me. I was at my wits end so he referred me to her but sent information rather than making an appointment. She told me she could help me, I got my Jupiter 15 lens and was very happy with it. The lens is a hard contact lens like the scleral lens but not as big. After about 3 years I couldn't wear the lens anymore, not sure why, perhaps I became allergic to it. Anyway, my eye doctor then had me try using a daily use contact lens. I use the Acuvue Oasys, it just came out this time last year. I love it, can't tell it's in my eye and I don't have to use all the cleaning solutions I did with the scleral lens. Depending on your Insurance it can be a bit costly, the lens costs about a dollar a day. For me it's wonderful, before the daily use lens and the Jupiter lens I spent over $4,000. a year on eye ointment, that's not a typo. There is something out there that will work for you, keep researching and don't stop because a doctor says it won't work for you. Good luck and keep us updated! Jill
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Thank you, Jill Marie.
Just a question - I've been a soft contact lens wearer for many years, and I use Oasys lenses. They are lovely! But I do it in monovision - my right eye is the unaffected eye, and I wear the lens in that eye to improve my distance vision. I haven't needed correction in the left (and that's the affected eye, no blinking!!). Is your lens for correction as well as for the dry eye? And I am assuming the lens does a fine job keeping your eye moist - you'd be pretty uncomfortable otherwise!
Thanks for your recommendation. As I see time and again on this page, there are a variety of possible solutions for our predicaments, and they are all good options to pursue.
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Has anyone used the Willmer Clinic at Johns Hopkins in Baltimore MD? Any recommendations for a scleral lens fitter there? Thanks!
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It appears as though there is a Boston Foundation for Sight affiliated clinic there. They offer the PROSE scleral lens. That is the one that I have worn for 5 years. I would look into getting an appointment for a consult there.
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Done! I see a Wilmer Eye Institute optometrist - Dr Goldman - in two weeks. I hope this works out. Thanks for the support.
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Hi again,
I don't have any correction in the lens, I could if I wanted to. I only use the lens to help with the dry eye issues. The lens is so comfortable that last night I went to bed with it in, then I remembered to take it out, was exhausted from the Labor Day weekend. The Oasys lens is different then the other Acuvue lenses, so I'm told. I've recommended it to those that have the scleral lens so they could use it when they don't want to worry about loosing there scleral lens because of the cost. Some people like to scuba dive, surf, etc and are worried about loosing an expensive lens. Others like me worry about leaving it somewhere or thinking it's in the case at night and it's actually in the drain of your camp trailer, lost power camping and flashlight let me down. Anyway it's a good back up lens too!
Glad to read that you have an appointment to get fitted for the scleral lens, hope all goes well! Jill Marie
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Oh I am so glad you have an appointment with them.
I first had a consult and then I returned for the fitting. The lens and fitting is certainly more expensive than a "normal" lens. My insurance covered some of it since the doctor was able to state that it was medically necessary for me. I have had the lens now for five years. The only extra cost for the lens is the cleaning and inserting supplies. In the end it has been quite economical. I literally could not live with out it.
Let us know how it goes.
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Hi tugnutt: I have my scleral lens since 2/2013 with Dr. Kenneth Maller in Ft. Lauderdale, FL. He is a specialist in scleral lenses, really changed my life for the better. Don't know what I'd do without the lens... Wishing you all the best (sorry for the late response, haven't been onthe site for awhile).
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Jill Marie, thanks for the info. I'll definitely take that with me when I see the doctor - if there are options, I want to know what they are!
nancyann and Kerrybr - thanks for your support! I honestly would have given up without reading about how lives have changed (for the better) with the lens. I think I'm a good candidate (oh please!) as I've worn contacts for decades and am pretty good at dealing with 'em. I'll update y'all after the appointment. Can't WAIT!! ;D
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I remember the 1st time I had the lens on, I was on my way to work, & it felt funny, like a coolness. I was freaking out waiting for the burn, wondering if I'd have to pull over, but it never happened! Every windy day (love the wind in my face now that I have the lens) I thank Dr. Maller for his encouragement that the lens will change my life, he was right! Hope you're as happy with the lens as I am!
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nancyann, Kerrybr92, Jill Marie:
I met the optometrist (Dr. Goldman at Willmer Eye in Baltimore MD) and he agreed; I will get my scleral lens in about a week! He was sure it will keep my eye healthy (as long as I care for the lens properly), and will solve the problems with the blurriness from the lubricant.
I am so happy - the first lens he tried fit! So they will call me when my lens arrives, and we'll head up for the insertion and care discussion, and his final approval.
I can't thank all of you - and everyone else on this site - enough for providing your stories and encouragement to pursue a solution. After my first disastrous visit with a "scleral lens expert," I was very disappointed and frustrated. It's all good now!
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That is just amazing news. I am so glad you will be getting the lens. It does take a little effort to learn how to insert and care for the lens but once you know how it will be easy.
Glad you stuck with it.
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Hooray! I finally have my scleral lens! It took a while to coordinate schedules, but we saw the doctor Friday and went through the I/R training (lens insertion/removal). So far, so good. Hoping to be able to wear it full time in a few days. Already, so great to be able to see clearly out that eye! Thanks to everyone for their support and encouragement. Happy Halloween!
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Update: Although the lens worked great for about an hour, my eye became irritated after 2 hours. I took a one-day break, then tried again but with the same result. I will see the doctor next week - I think it wasn't a good enough fit. It seems that this is fairly common with the scleral lenses, to need additional fittings. On the good side, I am getting good at inserting and removing the lens!
Thanks to y'all for your support and encouragement. I'll report back after my appointment. Kathy
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Sorry for the trouble you are having. I had a very difficult time with the fitting process. I almost gave up a few times out of frustration. But in the end I got a great fit and all of the trouble was worth it.
I hope you ultimately are able to get a lens that will work for you.
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I am frustrated! The ophth said the lens is allowing in tiny air bubbles. His answer is that I can only wear the lens for 2 hours a day. I say, WRONG! Surely there's a better answer! Kerrybr, you say you had a hard time with the fitting process. Who did you work with that got you the good results? Others, please chime in. I feel I can pursue this further and get a better result!
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Yes I did have a hard time with the fit. Truth be told I went through 27 different lens.
I am a patient of the Boston Foundation for Sight. I see them in Needham MA but they do have several locations throughout the country at mostly large teaching hospitals it seems. You can also travel to them there as many patients do. They manufacture the lenses on sight to your exact specifications. These are not stock lenses.
I had trouble with the fit mostly due to my platinum weight in my lid. It was putting pressure on the lens and it was not always evident how to correct that. Some lenses we too tight and some were too loose. Others just let in too much debris and would fog up. After pursuing this for over three months I was able to find the best fit possible. I almost gave up so many times.
I just had a visit with them this week and it has been 4 years now with the same lens. My fit is not totally perfect but it is close. I use 2 vials of Refresh celluvisc along with the buffered saline for insertion. I use that in order to "seal" the edges of the lens as to not let air or debris into the lens. It works for me and I am able to wear the lens about 14 hours a day.
I have not looked back to see how your doctor was located but you can certainly look into a Boston Foundation For Sight satellite office. I presume I was one of their more difficult patients and they stuck right there with me. You pay for the lens and the fitting. So no matter how long it takes it is all included.
If you have any questions let me know. I hope you continue to pursue this if possible.
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Kerrybr, thanks for the additional information. The Willmer Eye Clinic at Johns Hopkins in Baltimore Maryland is a satellite location for the Boston Foundation for the Eye. The dr I was seeing is at the Willmer Eye Clinic, but I don't think he himself is affiliated with the BFE. I have a couple choices - I can get an appointment with one of the doctors who are listed at Willmer, or I can seek treatment in Boston. I live in northern Virginia, so Baltimore is much closer for me than Boston. What do you think? I imagine the Massachusetts clinic is better experienced than the Baltimore, but it's a bigger effort to get there.
Regarding your formula for wearing the lens - using the refresh cellavisic - was that your discovery, or did the doctors help you figure that out? Thank you SO MUCH. I absolutely will pursue this - it was such a rush to see clearly for eve a short time!!
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So this is what I think. You should see if you can find a Dr. there that is trained by and affiliated with Boston Sight and the PROSE treatment. It is my understanding that all doctors do some training in Boston and then go to work in these satellite locations. But since I only have been to the one in Boston I do not know for sure but I am very certain.
I am sure there is a difference in experience between the doctors in both locations since the doctors in Boston really spend their whole day every day only dealing with these lenses. But with that said, the doctor I see was somewhat new when I started and it has turned out great and he is amazing. I would certainly recommend him if you decided to come to Boston. I think the other difference is that when you come to Boston you actually come for about a week and they work you through the different lenses and they teach you all you need to know about care and insertion. Since they make the lenses right on site you are able to try a couple each day if necessary. But being closer to home could be a good thing. I would give it another try in Baltimore. Just confirm who you are seeing and their experience with PROSE.
Regarding the lens you tried, was it a lens made just for you? Meaning was it a PROSE lens. Did they measure you and decide what to try? And then have it made in Boston and you went back to pick it up?
I picked up the celluvisc trick from my doctor in Boston. I think he was as excited as I was that it worked. He was patient but ready for me find success!!
Please ask me any questions you have. I am so happy to help you.
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Hi Kerrybr!
Thanks for the fast response. I am very tempted to follow up with the Needham office - but I'll talk to my husband about the options. I'll keep your "recipe" in mind too!
In regard to your question about whether the lens I was given is custom, it is not. It is a Jupiter lens, which I understand to be an off the shelf lens.
Thanks for the offer of information about your doctor - I will likely take you up on it. I was quite disappointed by my ophth's reluctance to offer alternatives to the problem. I plan to return the lens for a refund, before the warranty date arrives.
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Ok. I would return it too.
So with the PROSE treatment the lenses you try are specifically manufactured for you. They are all made in the Boston office for quality control I was told. When a lens does not work for you it goes into their lens "library". I did try on some of those lenses as the doctor was attempting to get the best fit. He tried several diameters of lenses and that was a quick way to see if they would potentially work. Then once he got a good diameter he could tweak any other dimension of it.
I first went to the office for a consult to see if I was a good candidate for the PROSE treatment. Then we set up time for me to come down and stay for 4 days. Some people first come for a week but the time you spend really depends on how the fitting goes and how your training of lens insertion and care goes. Some people I met were there for only three days. When I arrived for my first morning they examined me and then tried some lens. Then they made a lens for me. The production takes about and hour or so. They have a fully stocked kitchen there so you can hang out all day if need be. Once my lens was ready I tried it and kept it in for about 2 hours unless we knew it was not right. If it seemed good I would hang out and see how it went. I would be examined while wearing it and the Doctor would see how my eye was behaving with it in. Since mine did not work out right away my doctor would have another one made for me. While waiting, I was taught how to care for the lens and how to insert it. There was a lot to learn but they are great there and helped me all the way. The following days went about the same but with less training since I started to figure it out. I left after four days with a lens that was pretty good. I did return a few more times for some tweaking. And the. Finally I got this 99%perfect lens. I have returned every year just for a check up.
I know you did not ask for all this but I thought maybe it would help you compare treatment with the PROSE Doctor at the Johns Hopkins clinic with Boston. Or at least you will know what you should be looking for. I really think you just need to get to the right doctor there and that may eliminate the need to come all the way up to Boston.
Good luck with pursuing this.
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Never too much information. I will see if I can meet with a BFS doctor in Baltimore. If that isn't successful, I'll pester you more! I doubt that Johns Hopkins has the facility to make lenses, and that sounds like a key element. I agree, it's all about finding the right doctor. Thank you!!
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Don't give up tell you find a scleral lens or some other lens that you can wear pain free as long as you want. The lens and doctor you need are out there and you will find them. I had the Jupiter lens and it worked great for me for a couple of years, then I went to the daily lens as I've mentioned before. Good luck! Jill