Boston Sclera Lens...Relief

[ChristineNY]

Hello everyone:

I have not been on the site for awhile as I have been doing some research and followed through on going to Boston Foundation for Sight in Needham, MA.

I have had my lenses at home for a week now and I cannot beleive the relief I am getting with them.
I was there for a week and half as it is all trial and error with fitting the eye comfortably and the correct vision prescription in the lenses.
Everyone there is so nice and caring and I was treated by Dr. Karen Carrasquillo who I could not thank enough.
My vision in my right eye went from 20/200 to 20/25 with the help of this lens and the left only had a slight vision impairment but was so dry also.
When I put the lenses in it is instant relief from the pain and dryness I have been struggling with almost 12 years now.

I could not tolerate contact lenses and glasses just did not help due to such severe dryness.

They are quite large and do take time adjusting to them in your eye and alot of maintenance but at the end of the day that does not compare to the relief of pain and regaining your site.

I met other patients that were there for their annual checkups, you have regular visits with your regular eye dr but are required to go back annually to make sure the fit remains proper and the vision. The other patients told me how the lens has changed their life and given them back so many things they could not do before them, like driving a car, reading a book, watching TV.

If anyone is interested in more information please let me know. I will be happy to share any information I can provide and wish you all the best to finding the same relief that I have

[autumnn]

What an awesome post. I am so happy for you! Do you mind sharing an approximate amount of what the cost to you was for all of this? I know that many members are interested but may be detoured by the financial burdon of it all.

[ChristineNY]

Thank you Autumn.
I am getting more and more used to the lenses as the days go by.

As for the cost of the lenses, they are $7600 from the Boston Foundation for Sight. Some of insurance companies are paying for them either in full or partial. One of the other patients there said her insurance paid 80% of her cost. I am yet to hear back from my insurance carrier which is US Healthcare and I was told I may have to write several appeals to get them to pay any of my costs because they are not very good at paying claims.
Also I do not want that cost to deter anyone as at the Foundation they have payment plans available and they also provide financial assistance. You will not be turned away if you cannot afford them.
You have to be referred by your doctor to be seen there and they will let you know ahead of time by reviewing your condition with your eye dr. if you are a candidate. Once you make an appointment they supply you with a package that does have financial papers you can fill out and if you qualify you can get the lenses at a cheaper cost or even the whole cost donated to you.
If you cannot afford to stay at the hotels in the area, they have apartments and houses that place patients there while they are being treated as you may have to be there for a week to a week and half.
I have read on this site about other sclera lenses for a cheaper cost but there is something to say of the quote you get what you pay for. These lenses are totally custom to your own eyes. They went through making 8 different lenses for me during the week until the fit was comfortable for me and the best.

If you have any other questions please let me know and like I said I hope the cost posted does not deter anyone as your insurance may pay for it or you may be eligible for the financial assistance they provide.

I hope this is helpful to all and everyone is doing well :)

[odydnas]

Hi Christine,

Congrats for finding relief!!! And thanks for sharing the info. I have a couple questions:
1. How much relief are you getting? Are in near or complete comfort, or do you have to deal with irritation or a low to moderate level of pain every day with the sclerals?
2. Does the BFS only help those with corneal damage? That are a few of us on this site with fairly healthy corneas, but excruciating pain who haven't found much relief yet.

Thanks so much!

[ChristineNY]

Thank you for the congrats.

They do not treat only people with cornea damage. They treat people with just severe dry eye and if you do not have corneal damage you are much easier to fit for the lenses.

I am receiving complete relief. The dry eyes I have are very severe on top of the cornea damage on the right eye. The minute I put them in I feel relief because you are placing solution right into your eye that is cool and refreshing. In my case I am replacing the solution about every 6 to 7 hours to just refresh them and I am getting mucus in my left eye building up in the lenses which they said some people with the severe dry eyes do come across that.

The only pain I feel is when I insert the lens but that is only in my right eye and due to having 9 surgeries on that eye. After the initial soreness of placing the lens it is very comforting.

I am finding that I still have some dryness in the left eye and called about that, this again is common for some patients that have severe dry eye and they told me I can use any of the preservative free drops right on the lens to lubricate the outter area and it is fine. That seems to happen mostly at work because I am in an office building with poor circulation, at home on the weekends I do not find that problem.

If you have any other questions let me know and also you can go on YouTube and look up Boston Foundation for Sight and they have a clip on the facility and the process.

Like I said please do not let the cost to deter you as they are very flexible with patients that may not be able to afford them and also they will file the insurance paperwork for you to see if you can get any coverage for them.

best of luck to you all Christine

[Lucy]

Also, please be aware that the Boston Scleral Lens do not help everyone. I have damaged corneas and dry eyes from Lasik and Sjogrens. The BFS could not get a fit for my left eye which is the most painful eye. A good report is great, but also there are some of us whom were unable to obtain a good fit.
I have the lens in my kitchen cupboard. Lucy

[ChristineNY]

Yes Lucy I do agree, not everyone can be fitted. The first day I was there Dr Rosenthal did not think my right eye could be fitted and only suggested the left for the dry eye. The next day I saw Dr Carrasquillo and she has taken the lens further than he expected and is able to contour the lens to fit people he would not.

She has fitted about 6 patients so far with this new concept she has been using with a high success rate and is about to write a paper on it that I hope to see soon as she was my light at the end of the tunnel after a devastating 1st day of being told no.

I am sorry it did not work for you and hope you can get relief elsewhere.

[heidi_vaz52]

Thank you for being so informative and sharing your experience.

I am schedule to be in Boston at the end of this month. It can come quicker. You mentioned hotels, and apartments in the area. I also have to be there for a week and a half. I have already contacted Hospitality Homes, but also looking for information on hotels. Was there a shuttle from where you stayed to get to the BFS? Any recommendations for hotels?

I am happy to read that you are finding relief after so many years. It seems that we all have the same pains, discomfort, and limitations. I am curoious to know how are your eyes holding up when the sclerals are not in place?

Again, thank you for this post! I hope the sclerals continue to meet your expectations!

Heidi

[ChristineNY]

I wish much luck on your trip to Boston.
Everyone there is so very nice and caring.

I stayed at the Sheraton which is less than 2 miles from the foundation and yes they do have a shuttle that will take you back and forth for your visits. The Sheraton also gives you breakfast every morning if you are a patient with BFS.

I thought I would only be there a week and had some fitting issues so I had to stay longer and the Sheraton was very accomodating just extending my stay with the no problems and also provided a late check out of 3:00 since I had to be at the Foundation until that time the day I was coming home.

There is also the Holiday Inn that is offered and has a shuttle, I do not know how far that one is from BFS but Bill at the foundation can tell you and provide you with all that information if you need it.

If you get a chance to go out, me and husband went out to celebrate at this little local restaurant on Highland Ave called Sweet Basil...the food was delicious. We enjoyed it so much we went twice.

After I take the sclera out at the end of day of working I still find some comfort to be honest. I do not use the constant drops like I used to. I am still using restasis in the morning and at night until I go to see my regular eye dr later this month and see if he says I no longer have to.

Please let us know how you make out and lots of luck to you :)

[Lucy]

I stayed at the Sheraton during all three trips to visit the Boston Foundation for Sight. I agree with all the positives the above poster(s) wrote. They provided great service and I would recommend them. The shuttle service is great and I also found a couple of great restaurants close by, but can't remember the names! Lucy

[odydnas]

This may be a silly question, but what is considered severe dry eye? I mean, when most docs look at my eyes, they don't really see anything insanely wrong...my schirmers is close to normal and my tbut ranges from 3-10, depending on the doc. But I feel like my symptoms are horrible and unbearable. I've done the usual treatments, without much success. I'm not even completely sure what's wrong with me. Would BFS see a patient like me? when I've had trouble w/ other docs taking my pain seriously to being with.

[Rebecca Petris]

It's a really good question actually. In most ophthalmology practices (save a handful who really 'get' this), severe usually means somewhere from lots of staining to ulcerated - that is, you can see obvious signs under the slit lamp. At BFS, which is one of the reasons I'm such a fan, severity is much more likely to be measured by the impact the pain is having on your life. In fact the team there has been at the van of research into corneal neuropathy without staining (excellent recent study in the Cornea journal abou this).

[DCRdryeye]

I finally tried a temporary pair of scleral lenses for a few hours at my optometrist (in Australia). They were very painful and I wanted them out. I'm not sure what the process is, but they used a normal sized lens to measure my eye size, then a medium sized scleral, then a larger one that I was to keep on for two hours.
They assured me the discomfort I felt for two hours was because it was only a 'temporary scleral lens' and that the proper scleral lens will be more comfortable. So I'm having the scleral lens manufactured and have an appointment in another few weeks.
I was told they are not for everyone since the 'mechanical discomfort' can sometimes be worse than the dry eye pain itself. Apparently some people just don't get used to them.
For those who wear sclerals - can you feel them in your eye whilst turning your eyes around and looking side to side?

[ChristineNY]

I do not feel them in my eyes as I wear them moving around.
Of course I can feel that there is something in my eye because they are hard lenses and quite large.
I used to always have blood shot eyes also and everyone has been commenting on how clear my eyes now look with wearing the lenses.

at BFS they do start you out with fittings with generic lenses but the end result is customized to your exact fit of your eye.
Are they making them custom where you are going in the land of Oz?

I wish you much luck in your next fitting visit.

There were a few pts there when I was there that were having alot of difficulty wearing them. One young girl felt she had so much light sensitivity once she put them in she did not even want the TV on at her home. I left before she finished her visit with them so I do not know how she made out. She was only comfortable with one lens.

[DCRdryeye]

thanks for the response christine, yes they do make the sclerals custom fit here in Australia. In fact an Australian optometrist worked with contact lens pioneer, Joseph Dallos making glass scleral lenses. Joseph talked him into making his own lenses for his patients. It allowed him to also develop new designs and techniques that are good for patients.

I have ordered a custom scleral lens fit for ONE eye at the moment. If I can't get used to it....I'll save money by not having bought a second lens.

My optometrist assured me he'll persist as long as it takes to get a comfortable fit. I'm greatful to have found a very experienced optometrist specializing in contact lenses.

I was at a party a few nights ago till 3am and my eyes almost ruined the night. I kept telling myself 'the sclerals will help'...lol. So it's not a matter of IF they'll fit me, the 'have too'.... if not, there is no plan B. I've tried almost everything on the market for my dry eyes.

Thanks for sharing your experience with sclerals christine, I'll also keep an update here with my progress.

[ChristineNY]

Hi DCRdreye,

Maybe your eyes were so dry being out to 3AM....LOL having a few lagers down there :)

I am adjusting really well to them now, on my 3rd week with the lenses and definitely finding it much easier to take them in and out and in the routine of the care for them.
I have an appt with my eye dr here in NY on the 25th for a check up and for him to report back to BFS on my progress but they also tell you the signs to look for if there is any problem or swelling of the cornea while wearing them.

I am happy to hear you are comfortable with your eye dr because you need to be so you can express how you are feeling and they are really listening to help you get better results on relief. I think the whole reason why they work is with patience in the whole trial and error process of fittings, so if it takes awhile don't let it get you down...you will get there.

Let us know how you do with the fittings and the comfort. Christine

[markmark]

Hello Christine,

Congrats on your new scleral lenses. I also, was fitted for lenses last October at BFS. Dr Carasquillo was my Dr. too! Unfortunately the lenses didn't work for me. I was having such a mucous build-up,(even on the inside of the lens) that I couldn't see out of them after a 1/2 hour. I am so glad my insurance covered them. Dr Carasquillo really worked really hard trying to help me. Everyone there is great! I seen first hand how many people they have helped. I am hoping they will develop a better plasma coating. I guess they are working on that too. I stick them in every couple of weeks just to see if my eyes have improved enough to wear them.

I also have to give a shout out to the Sheraton Needham! They were very accommodating! The shuttle bus driver Ernie was the best! (Is he still there?) The surrounding restaurants were very good, and the free breakfasts and evening snacks on the 5th floor helped with the costs of food.

If anyone goes, and you don't mind walking, its about a 1.5 mile walk to the subway from the hotel if you want to visit downtown Boston on the weekend. Its a very beautiful city with alot of history. Cheers!

Mark

[ChristineNY]

Dr. Carrasquillo is just a doll and so determined to help people.

Now a suggestion for you on the mucus issue. I am having the same problem in my left eye with the mucus buildup inside the lens, here is what she has me doing to eliminate that and it is worth a try for you to see if it helps.

I am putting one vial of Celluvisc drops in the lens and then the saline solution on top of that because the Celluvisc vial does not fill the lens but it fills it about 3/4 of the way and then top off with Saline. This definitely seems to be helping that issue and also I do change my solutions in them about every 6 to 7 hours. She recommended that to me because of some other issues I have with my right eye that had the corneal transplant.

Try that out and let me know how it works for you.

I am still waiting to hear back from my insurance company if they will pay for them so I paid out of pocket and Jinny (insurace rep BFS) said she will help me out with writing any appeals to my carrier if they deny me reimbursement.

Yes Ernie is still there, what a nice guy. They all are very nice up there at BFS and the Sheraton.

I hope the Celluvisc works for you. Have a good day Everyone !!! :)

Christine

[bernmee]

Odydnas,

Dr. Gagnon was going to refer me to this place if the pain didn't improve, he thought I would be a good candidate, despite the fact that I have a schirmers of 35 and a TBUT of 8, but I did have dry spots on the cornea.

Thankfully the pain seems to have eased up, and hopefully it will remain that way, but the patients description of the level of pain seems to be the determining factor.

BErnadette

[markmark]

Dr. Carrasquillo is just a doll and so determined to help people.

Now a suggestion for you on the mucus issue. I am having the same problem in my left eye with the mucus buildup inside the lens, here is what she has me doing to eliminate that and it is worth a try for you to see if it helps.

I am putting one vial of Celluvisc drops in the lens and then the saline solution on top of that because the Celluvisc vial does not fill the lens but it fills it about 3/4 of the way and then top off with Saline. This definitely seems to be helping that issue and also I do change my solutions in them about every 6 to 7 hours. She recommended that to me because of some other issues I have with my right eye that had the corneal transplant.

Try that out and let me know how it works for you.

I am still waiting to hear back from my insurance company if they will pay for them so I paid out of pocket and Jinny (insurace rep BFS) said she will help me out with writing any appeals to my carrier if they deny me reimbursement.

Yes Ernie is still there, what a nice guy. They all are very nice up there at BFS and the Sheraton.

I hope the Celluvisc works for you. Have a good day Everyone !!! :)

Christine

Christine,

Thanks for your reply. Dr. Carasquillo also tried Celluvisc with me. I did help some. Better than just using the Unisol. But still not enough. I didn't list that on my last post because I am a real slow typer, and when I take to long I get kicked off and I have to re-log on! LOL

Mark

[ChristineNY]

LOL - sorry the Celluvisc did not work for you on helping with that problem.

I do have to tell you, it does not totally eliminate the mucus but definitely helps

I am so sorry they do not work for you, maybe when you go back for your yearly visit Dr. Carrasquillo can alter the lenses for you to be better

[VICTORIA UMBERG]

Hi..we are presently doing the paperwork to take our 10 year old daughter to Boston for a fitting of one lens this summer. She has/had a orbital tumor which after 7 surgeries has left her with an eyelid that doesnt blink as frequently or thoroughly as normal. She suffers from scarring and DES as a result. I am quite nervous about the financial investment and whether she will be able to pull this off, that is getting the lens in and out independently. She is a mature little girl..does anyone have a child with the Sclera lens experience? Do you carry insurance on these lens? Do they crack easily if youre not gentle? How far into the process can you get before you can drop out without the financial responsibility? She is so high maintneace with hourly eye drops, she is also cauterized on the bottom and plugged in the top, does this pose a problem? What about wearing these at nite..my daughters lid doesnt close and thats a high maintence deal too..Do these lens "stick out"? Thanks for any info...Vicky in dry Denver...:)

[Rebecca Petris]

does anyone have a child with the Sclera lens experience?
Victoria, I've known people with children who wear sclerals but I don't think we've ever had any on the bulletin board here. Feel free to give me a call if you like. 877-693-7939 (leave a message and I'll call back).


Do you carry insurance on these lens? Do they crack easily if youre not gentle?
One of my lenses is nearly 3 years old and is doing fine. I'm very careful, but stuff happens, they do drop now and then. As long as you take precautions they are fine. I've once broken a smaller gas perm but not a scleral.


How far into the process can you get before you can drop out without the financial responsibility? She is so high maintneace with hourly eye drops, she is also cauterized on the bottom and plugged in the top, does this pose a problem?
Best to address these questions to BFS I think.


What about wearing these at nite..my daughters lid doesnt close and thats a high maintence deal to
You can't wear these lenses at night. For that I'd recommend the Tranquileyes goggle - I know of several children who do. My daughter (6yo) has one for fun and it fits her just fine.


.Do these lens "stick out"?
No, at any rate, I've never noticed them in anyone I've met wearing sclerals.

Another thought in the meantime, have you tried any protective eyewear on her to perhaps reduce lubricating needs or at any rate keep her more comfortable? The BabyBanz company makes a product called KidBanz and they have it available now with clear lenses. It's the closest-fitting thing, closest to a moisture chamber, that I've been able to find for kids. I recently tried a pair on my daughter and was impressed with how well they sealed her in. For us grown-ups protective eyewear sometimes makes all the difference between unmanageable and manageable pain.

[hkgcomet]

Do anyone got expenience on hard GP lens?
Would it protect eye from dry and wind? or it makes more dry?

I don't have any hybrid or bosten lens here, or it would be XXX expersive to go to foreign country to get one...

[DCRdryeye]

It was an exciting day for me today to finally try my custom made scleral lens (I only got one made in case I didn't take to it). I remember the first consultation a few weeks ago I tried the "generic" sclerals and they were excrutiatingly uncomfortable so I was anticipating something similar today.

To my surprise, when my optometrist placed the scleral onto my eye... it was VERY comfortable. It didn't hurt when I moved my eye from side to side and when the optometrist touched it...I didn't realize he had actually taken it out!! I couldn't tell the difference if it was in my eye or not :) I was sooo happy :)

The scleral does need to be cut back a bit because it's slightly too wide for my eye and the edges touch when looking to the side, which displaces the lens a bit (not that I noticed). My optometrist said it was better to have them made slightly larger (where it can always be cut back) rather than too small.

There's also a bit of blurriness to the lens and I was told that will be adjusted as we continue the fitting. I'm to use the one lens over the next one month, then go in and it will be taken away from me :( so it can be machined back slightly. I will then order the second scleral lens. Personally, I think it's easier to learn to deal with just one scleral at a time in terms of putting it in and out and cleaning.

My optometrist was very gentle when he placed the lens onto my eye, I really didn't feel any discomfort at all. I was also able to place the lens into my eye very easily, however, it was a lot more tricky removing it.

I was shown how to place the lens in with just my hand (no assistance with a suction device).

I was also told I can use any unpreserved artificial tears inside the lens I desire. A suggestion was Poly-visc or Cellu-visc. I will experiment with Thera Tears liquid gel which I find to work best for me.

I know there are some obstacles to overcome yet, such as getting a good fit for the "other" eye, correcting blurriness, etc.

[ChristineNY]

Congratulations!!!!!!!!!!! Sounds like great news and for you to not feel the lens in at all...wonderful :)

I wish you continued success and please keep us updated as you go through your first month.

I use the Celluvisc in my lens and then top it off with the preservative free saline solution (we have to use the saline only for 2 days and keep it in the fridge). I find the coldness of the liquid very soothing when inserting the lens.

I just went for my month check up with wearing the Boston lens and received an all good across the board on the health of my cornea and adjusting to the lenses.

[DCRdryeye]

Thank-you very much Christine. I was wondering what you're routine is for cleaning and storage of your scleral lens and if you place it under running tap water.

I was given "Boston Simplus, Multi-Action Solution" to use and was told not to wash the lenses with tap water (due to bacteria). So apparently, store the lenses in Simplus solution over night, and in the morning give them a clean with the Simplus again...and insert into the eye (along with saline, etc into the lens).

The container the lens are kept in is to be washed with water and dried under the sun.

Christine it's great you're getting so much relief with the sclerals, considering the bad luck (surgeries, etc) you've had with your eye you deserve the comfort.

Thanks for your ongoing support...

[ChristineNY]

Yes it is nice to finally find comfort and vision all at once.....yes something out there does work...I only wish it could work for everyone with pain.

Actually my routine is:

I have the cage container they gave me because they do not fit in the standard one for contacts and at night when I take them out of my eyes I rub them about 15 seconds with miraflow and then rinse it with the preservative free saline solution, then fill the little bottle (they sleep in :) ) with Oxysept and the tablet it comes with for the night.

In the morning I rinse the lenses with the saline again then fill them with one Celluvisc vial and top off with saline. I rinse the cage and container with a quick squirt of saline and let air dry until I need them at the end of the day.

They said no water, I only rinse the outside of the container with water, holding it upside down under the tap, to rinse off the outside.

Then start all over again so since they said we can only use the saline solution for 2 days and keep it refrigerated you only get 2 days out of a 3ox bottle anyway
I have found CVS brand to be the cheapest and just the right amount for 2 days.

I am so happy for you that you have found relief! :D

[bella]

Hi, I was just wondering do you have to put saline solution in the lens or can you just put perservative-free tears in instead? I think I am sensitive to saline solutions and although I don't wear contacts I know the saline solutions or eye washes burn in my eyes. I'm thinking about getting a sclera lens, I guess it wouldn't be the boston one cause I would get it from my eye clinic in chicago but i'm skeptical on how this would all work. I see you mention there are cheaper versions that aren't as good. I'm not sure if it would be like when you get regular contacts, how you have trials...it sounds like you went through different lenses. My coreas are ok I would think as I use drops like every 10-15 mins. sometimes, but I'm so tired of the pain and of doing this. I have a high astigmatism but just need glasses for reading, driving at night, computer etc, so my vision isn't bad it is just the severe dry eye and not finding relief. How much do you still need to put in artificial tears with the lens in? I'm just wondering if this would really cut down significantly my drops. :confused:

Thanks,
Bella

[browneyes]

hi Bella,

which eye clinic in Chicago fits the scleral lenses? How much does it cost?

thanks!

[ChristineNY]

I have seen on this site that other people mention they purchased sclera lenses that were less expensive at other places and they did not provide any comfort for them and they ended up being stuck with them and not using them.
the reason why you have to be at BFS for a week to 2 weeks is because it is all trial and error with fittings and comfort while you are there. they make the lenses on site and you wear them for 2 hours or so and get checked through the week on tweaking the lenses just right for each person. they made 8 lenses before I left with the ones that I have.
I do not see why you could not just use tear drops and not place saline solution in them but you should check with your eye dr since I would not know that answer.
Are you using preservative free sterile saline solution? That is the one I use and keep it in the fridge and only use the bottle for 2 days.
The main purpose of the lenses are for comfort and the vision is 2ndary is the dr's thoughts in BFS.

I hope you can find some relief as I have, we all know how frustrating it can be to be in pain all day. I used to just want to not even bother going out some days.

Also about putting drops in over the lenses on a day to day basis, my office is very dry so I only find that sometimes if the air circulation is really bad in the building I will place a drop in my eyes over the lenses to lubricate them but that is only when at work, everywhere else I am fine...too bad we spend more time at work than anywhere else but I can deal with it for the benefits I get in everyday life now

[Lucy]

Christine, your post gives the impression that BFS gives you lenses that help you or none at all. This isn't necessarily true. I have one set of Boston Scleral lens, plus one more for my left eye sitting in my kitchen cupboard. I made 3 trips to Boston from Michigan to try for fittings. I was given one set of sclerals on my second trip. On my third trip, I went back especially for fittings on my left eye. I was there that particular week and they had me leave on Friday knowing that the left lens did not fit me properly. In fact, they kept the lens overnight to put a coating on it and then UPS'd the lens to me. My insurance was billed $5,000 for the second lens. My insurance was billed $7,600 for the original pair of lenses.

It isn't necessarily the "kind" of scleral lens that makes the best fit. As you can see, even the most expensive sometimes do not make the grade. For all my trips to Boston, the money my insurance paid, I'm still in the same situation. BFS got paid anyhow. Lucy

[DCRdryeye]

Really sorry that you couldn't get a good fit with the sclerals after all that money and travelling.

At BFS I'm not sure if the high price is for all the fittings and the time staff put into it...or the cost of the lens. I can't see how the lens would cost nearly $4,000 each, mine were a lot cheaper and not necessarily poorer in quality. It's possible mine are the same material.

I know with sclerals it depends on the skill of the optometrist. Obviously you've been to the most acclaimed place for the sclerals and it hasn't worked for you. So both high quality sclerals, coupled with advanced fitting skills still wasn't enough.

Perhaps there is still some hope with "persistance". They may need to adapt their technique to provide a better fit. I'd keep onto them and insist they not give up on you until you get exactly what you want.

My optometrist said he will persist to get a comfortable fit for me as long as I persist. In other words, he will never give up.

Lucy, they may develop some new advances in the near future that may work for you, Meantime, I'd keep persisting with them over the phone, via emails, look up other optometrists who fit sclerals, etc. The answer maybe simply finding another technician. There has GOT TO BE A SOLUTION for you.

... Thanks Christine for your cleaning routine. I spotted a large bottle of saline solution a week or two ago for $3 at my local pharmacy and was going to use it to fill the scleral lens.... until I read your post where you use the saline vials. Yes, the large bottle of saline has preservatives.. I'll use it for cleaning only. I wish you continued comfort with your sclerals :)

[jenny2008]

Lucy,

I love how you tell like it is... Because you correct. I went to Louisville to try and get fitted for Sclerals. My pore eyes couldn't handle the damn lenses! My lids were so irritated. Dr. Foulks said this probably means I am not a candidate for them and that a lot of people aren't. I agree with you that it doesn't matter where you get them from. From what I hear there are a few different types of materials that are used and I am aware that Boston does many fittings ..but like you said some people just aren't candidates for them.

[autumnn]

So what is the consensus on these lenses helping people with poor tear film and MGD??? Anyone have these issues that were helped by the Boston lenses????

[Lucy]

Some are ok, others not. Rebecca has Boston sclerals and Christine just in this thread posted they helped her. This something you don't know until you've made the decision to at least try them. If it's apparent from the start they won't work for you, the BFS will send you away. Problem is, it's not always apparent. Lucy

[browneyes]

hi Lucy,

perhaps you mention this elsewhere, but why does the lens work for one of your eyes but not the other? In the good eye, does the lens provide complete relief?

I'm thinking about making the trip to Boston... even having one good eye from the lens would be an improvement for me.

[Lucy]

Unfortunately, my right eye is pretty much ok now 9 years after Lasik, other than dryness (from Lasik and Sjogrens). The cornea in the right eye is fairly healthy and was not butchered in the Lasik. I really do not need a lens in this eye (as much). It does me no good to wear the lens I don't really need when the other eye is barely able to open. If my fit was the other way around, I'd be all set. It's the bad eye they cannot fit. Without THAT eye feeling good, life isn't good. Lucy

I think you overestimate what one eye feeling ok would do. If the other is a 9 or 10 on the pain scale and vision no good, you are still in pain and have crappy vision. My right eye is ok if I take care of it keeping it moist enough, wear goggles etc, but it does not lessen the pain in the left eye. If I could, I'd seriously have my left eye taken out. Lucy

[ChristineNY]

I am sorry if you got that impression from me.
I beleive I did say I was there for a week and went through about 8 lenses before I received a good fit.
On my 1st day there Dr Rosenthal said I was not a candidate and could not be fitted on my right eye which has the cornea transplant and lasik and was legally blind in and had the most pain in from my surgeries.
Dr. Carrasquillo was the one who saw me the next day and has taken the lens a step further and was able to fit my right eye and help me.

I just wanted to share my experience and how things are going for me after my trip to BFS with others who may be interested.
I came to this site before my trip to get information from people who had them as well just to see their experience with them and felt it was the right choice for me to make the trip and see if they would work for me which it ended up it was.

I referenced the custom fit from BFS because other people previously mentioned other sclera lenses that seem to not be specific fit and more of a general size at a lesser cost that do not use because they have no relief.

Again sorry you got that impression but I was only being honest of MY experience there.

[eyedrops]

yes they do make the sclerals custom fit here in Australia.

Hello! I'm an 8 year veteran of the Scleral Lens, and I've recently moved to New Zealand. Could you tell me some info about your Scleral Lens doctor in Aussie? Are they in any way affiliated with The Boston Foundation for Sight? It's really good to know that there may be options closer to me if I run into any problems.

As for the lens itself, I am a Stevens-Johnson survivor, and I've found it enormously life changing. Of course I have good and bad days with them, but overall they bring me comfort and correct my vision. If you have any specific questions about them, please let me know!

~marcey

[Lucy]

Christine, you didn't give me any impression at all except that you were expressing your experience with BFS. I'm glad you were successful in your fitting and that you told us about it. It also gives hope to others.

On the other hand, I only posted my experience. It's important for people to see all sides to the equation and then they can weigh their options about trying the lens.

My first trip to Boston was for one day to see if I was a possible candidate and it was thought I was. Sometime after that, I was at the clinic again for fitting and we were there for 3 or 4 days. I went home with my lenses. The left lens never fit right. Then, on my third trip to Boston, I was there a whole week and they tried 8-10 lenses on my left eye and I was sent home with lens that did not fit and they knew they did not fit. I'm not going to write anything further on this thread. I don't want it to become something it's not meant to be. We both told of our experiences and that is what people need to hear and know. Best, Lucy

[ChristineNY]

I am sorry you had that experience and I wish you and many others success in finding relief whereever that may be from.

I can see your frustration in the failed lenses and do not agree that you were sent home with lenses that did not properly fit. Especially at the cost of them and the cost of the travel for you flying there.

I will keep you in my thoughts to find a resolution somewhere :)

Wishing all a Good Friday, Passover & Happy Easter. may you all be blessed

Christine

[DCRdryeye]

Hello! I'm an 8 year veteran of the Scleral Lens, and I've recently moved to New Zealand. Could you tell me some info about your Scleral Lens doctor in Aussie? Are they in any way affiliated with The Boston Foundation for Sight? It's really good to know that there may be options closer to me if I run into any problems.

As for the lens itself, I am a Stevens-Johnson survivor, and I've found it enormously life changing. Of course I have good and bad days with them, but overall they bring me comfort and correct my vision. If you have any specific questions about them, please let me know!

~marcey

Hi eyedrops, wow you've had sclerals for 8 yrs?.. The optometrist whom fit my scleral lens has over 20 yrs experience using them. He is highly regarded in optometry circles and runs a specialist contact lens practice in Melbourne. His contact details are....

Richard Lindsay and Associates, Optometry and Contact Lenses, Level 5, 376 Albert St, East Melbourne, Victoria, 3002. Phone: (03) 9417 644, Email: mail@lindsayassociates.com.au

Another recommendation is an optometrist, developer of scleral lenses...his website and contact details are at... http://www.ezekieloptoms.com/contactLenses/scleralLens.html

I don't think neither of the above two optometrist are involved with The Boston Foundation for Sight.

Let us know how you get on :)

[diggylove]

Hello...I am miserable; severe dry eyes are truly ruining my life. I was delighted to hear that Donehy Eye Institute at USC is now prescribing the BLS so I went...& was told by Dr. Samuel Yiu that my corneas are not damaged (thank goodness) so I am not a candidate. How horrible do you have to get? Isn't major burning all the time drastic enough? I have tried plugs (litle help & got infections), tried Restasis (no luck), do heat, etc...have used countless drops (not steroids since my pressures elevate at high normal)...all I know is I am in bad shape, but Dr. Yiu dismissed me as not serious enough, I guess. At what point, is the patient's subjective impressiion of how they feel important enough? I do not want to wait to have corneal damage...already I have suffered for over 4 years & I am getting worse month by month. I have part MGD & part aqueous deficiency...I am extremely depressed on top of it. Can a patient insist on being fitted for the BSL? I can pay for them if need be...but I have good insurance. Quality of life counts a lot here.
Thanks fo any guidance...Susan, age 60, in So. Cal.