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]

Cost Factor

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]

BFS patients

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]

Not for everyone

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]

Heidi

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]

Scleral lenses

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]

Dcr

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.