Scleral Lenses? (in Australia)

[alex123711]

I have extreme dry eyes caused by roaccutane, have tried everything including eye drops steroids, restasis, plugs, ipl, copmresses/ lidcare diet etc. Yet things have only got worse, the only thing left I can think of is scleral lenses, I have a few questions for people in the know or who have tried them:

1. How long does the process usually take to get them done/ get appointments etc.
2. What are the costs?
3. Were they worth it for you.
4. I'm not from the U.S (AUS) so will there be any problems getting them done?
5. How long do they generally last/ need to be replaced?

I'd like to weigh up the pro's and cons beforehand because it is likely to take up a lot of time and money for me being overseas.

[Hopeful2]

Repost from August 15th (some contact info for Boston Foundation for Sight):



Thanks for this post! I just got off the phone with Brenda. She says the cost is $10, 000 total for the two eyes. She believes that many patients from Ontario can get some money back from OHIP (provincial insurance). I would imagine other provinces would have a similar arrangement. Your MD or opthalmologist would need to send in a referral request to Boston, along with results from your most recent eye exam. Your doctor would also complete the request for OHIP funding. I would suggest you send topographies in as well (for post lasik). Brenda says the fitting procedure usually only takes about 1 week, but be prepared to spend 2 weeks in Boston. There are apartment style accomodations available at $35/night and this includes breakfast and lunch.

I am seriously considering the Boston option, as several opticians/optometrists have confirmed that my post lasik vision irregularities would not be well corrected with glasses. Also given that I have dry eye, I'm not sure how well another lens would work. I'm fortunate to be working with an optholmologist who has already referred patients to the BFS.

[mgshutterbug]

I am also looking into the Boston Foundation for Sight for sclerals. I contacted them today, and will be getting my records from corneal specialist and retinal specialist (nothing to do with dry eyes) faxed this week. After they get them, they'll set up a consult to see if I'm a candidate. My stomach just scrunched, looking at the cost. My insurance won't pay for it. It have poor overall coverage for anything. I'm going to have to see what kind of arrangements can be worked out if I'm a candidate. I just can't see going on like this hour by hour, with things only worsening. I've got to take advantage of this possibility -. Good luck to you Alex.
Maria

[alex123711]

That is a huge cost for essentially a gamble. I'd have to pay it all too cos I don't have american insurance.

[mgshutterbug]

Alex, I agree it's alot of money. However, you go in for a consult first, for them to determine if you're a good candidate for them. You're not forking out all that money initially. They don't take $10,000 and have you go through the whole process without a clue as to whether it will work. They're not going to agree to fit you for them unless they're pretty sure they'll work at least some for you. For me, I've tried pretty much all that there is to try nonmedically, i.e. moisture chamber glasses worn all waking hours, warm compresses, sunglasses, avoidance of cold, wind, any breezes, a/c, dry heat. And then medically, I've tried Restasis, various gel drops, ointment, and plugs. My eyes are becoming increasingly drier, and even more painful, and my vision is never acute because the eye is continually dry. I'm about at the end of my rope. So if BFS finds that I'm a good candidate, I'm going to find some way some how to get up there and get the sclerals (PROSE). But that's just me. I am in no way saying that's the way to go for anyone else. I'm just at the point, now, where I have to try something different. This seems a reasonable choice at this time. Maria

[Trac]

Mgshutterbug have you tried serum drops? I am not saying they are a cure all, but they have made a big difference for me. I still have a lot of pain and dry eye, but it is much less intense and I can put the serum in every hour if I want to because it is made from my own blood.

[Hopeful2]

Trac,

Do you find that you need to buffer the serum? My serum drops are straight serum, therefore not added lubricants. Some serum drops are diluted with PF artificial tears. The doctor suggested i use them between PF artificial tears.

[Trac]

Bella_girl,

My serum is only 20%. I no longer use any artificial tears because they seemed to be washing any oils or other good stuff I might have in my eyes out. I do use the serum as often as once any hour if needed. Generally 8 times a day. I also use Restasis up to 4x daily, Mucomyst up to 4x daily, and muro drops up to 4x daily. So sometimes I put one kind of drop or another in every 15 minutes. Depending on how my eyes feel, do they feel dry, or full of filaments, I can generally tell what type of drop I should put in depending on how feel at any given time.

But I don't buffer any drops. The serum is the only drops that NEVER burns.

[Hopeful2]

Hi Trac,

If your serum drops are 20%, what makes up the other 80%? Is it saline solution. I know one doctor in Toronto said they dilute the serum drops with PF Refresh tears. This same doctor said 100% serum is pretty watery and probably should be buffered. The doc in Ottawa said use only the serum drops, straight up. I find the serum drops feel dry on my eye after a few minutes, but I agree the serum does not burn.
Hope all is well!

[Trac]

I really don't know that the other 80% is, that would be a good question for my doctor. I would think it would be saline. I hope I remember to talk to my doctor about the different percentages of serum. The serum worked great for several months, until I read in the forum that for someone the drops only lasted 15 minutes, and then I started having the same effect for a while. Sometimes my eyes feel dry with the serum after about 15 minutes. The mucomyst seems to make my eyes sticky when the filaments dissolve, so I don't know if that is why the serum does not always seem to work as well.

[DCRdryeye]

Hi Alex,
I'm from Australia too and have had scleral lens fitted for my dry eyes here. They don't cost $10,000 in Australia, they are only $800 to $2,000 per lens depending on which scleral lens you get. There are two types... "fenestrated" or "non-fenestrated". I have tried both. Where do you live in Australia?

To answer your questions:
You need to see an optometrist who fits scleral lenses multiple times to get a correct fitting. Perhaps up to 8 visits. Appointments don't take very long to get.
The costs are no where near as much as they charge at Boston Foundation for Sight in the USA.
I am still trialling them so can't say if they were worth it. I am persisting with them and will continue persisting until they are perfect. They are the only answer for me.
I am told Scleral Lenses last about 3 years.

There's no need to go overseas to get Scleral Lenses. If you do, are you going to repeat the process in 3 years when you require a new set? another $10,000 for the lenses plus the airfare and accomodation...not worth it. We have the technology in Australia for Scleral Lenses.

[Rebecca Petris]

Hi Alex and welcome.

I am hoping we'll get some success stories here eventually (and if there are some that I haven't noticed maybe someone can post a link) from Aussie members with sclerals fitted successfully for dry eye. I find it really frustrating that I know many fittings are happening - for example, here in the US I am sure there are fittings with Jupiter and other lenses that are successful but I virtually never hear from people who are successfully wearing those lenses long term for dry eye. Wish they'd come out of the woodwork already

I have extreme dry eyes caused by roaccutane, have tried everything including eye drops steroids, restasis, plugs, ipl, copmresses/ lidcare diet etc.

Have you worked with moisture retaining eyewear yet?

1. How long does the process usually take to get them done/ get appointments etc.

If it's @ BFS in Boston, you spend 1-2 weeks there. If it's anywhere else, it will typically be a series of appointments with anywhere from days to weeks in between as they order and try out successive lenses.

2. What are the costs?

Depends whether you can get insurance to cover it. Most people who go to BFS are usually getting insurance coverage to handle some or all of it.

3. Were they worth it for you.

Me, yes. I have them for vision as well as dry eye though.

4. I'm not from the U.S (AUS) so will there be any problems getting them done?

There are scleral fitters in Australia. If you go to one, I would insist on getting information on their success rates fitting sclerals specifically (and exclusively) for dry eye and if possible try to speak with a patient of theirs who has been wearing the lenses for awhile.

5. How long do they generally last/ need to be replaced?

They're quite tough so long as you take care of them. One thing to keep in mind though is that for dry eye, the lens should be plasma treated, and this treatment may need to be redone periodically. My lenses start getting a little uncomfortable and the vision degrades slightly and that's how I know I need them re-plasma'd.

Note that there is a difference between the cost of initially getting lenses fitted and the cost of purchasing replacement lenses. This varies by practitioner. At BFS the replacement lenses are a small fraction of the cost of the original fitting process.

I'd like to weigh up the pro's and cons beforehand because it is likely to take up a lot of time and money for me being overseas.

If you can pursue it locally, like i said I'd try and get some references first to know you're not just a guinea pig, but considering the cost of heading overseas for it, that would probably make sense to try.

[mgshutterbug]

serum drops

No, Trac, I haven't. At the moment, I have horrible insurance which essentially pays for nothing, including Rx. I'm frantic over all that. The other problems have to do with my bloodvsessels. They're tiny, they roll, and I don't have a straight run of blood vessel hardly anywhere. My veins are very very short for a straight run. Phlebotomists run when they see me! How's that for reversing roles?! I try to stay hydrated, and to drink more before a blood draw, but in reality, I don't drink anywhere close to amt I should. Anyhow, I thank you for your suggestion. Maybe I will try the serum drops when I get new insurance, whenever that will be. I have no prospects for a new job which would provide excelllent insurance. Next time, I'm just going to have to be more insistent re: getting decent insurance. mgshutterbug

[Trac]

Just to let you know my insurance did not cover my serum drops because it is not FDA approved. They cost me $500 for 13 vials, that should last 13 weeks, but I don't throw mine out after one week.I use it until the vial is empty. I am on my 9th vial and I have had them since April. Someone else got 45 vials from a single draw and someone else got the serum through Lion's eye bank and the cost was $175 for 13 vials. But if you can't get blood out then I don't think there is much you can do.

Good luck with the Boston Lens. Keep me posted if you get them and let me know how they work for you.

[alex123711]

DCRdryeye: I live in Queensland did you find the sclerals helped? I wonder if they are as good as the boston institute though? I tried some from an optometrist once but he didn't seem to know what he was doing and couldnt get the liquid to stay in the lens while putting it in so it was impossible even with his help putting them in..