A Trip To The Boston Foundation For Sight Next Week

[Erik]

The prodigal son returns!

For those of you who don't know me, let me re-introduce myself: Erik Rupard, a father of three brainiac kids (all girls, and cute too!), and married to the wonderful woman in my avatar above. I am a doctor myself (an Oncologist--I hope you don't know what that is...) and a dry eye sufferer since a bit after my LASIK surgery in July 2003. I have been out of touch here for a bit for reasons too numerous/annoying to mention. My dry eye regimen currently includes restasis, refresh tears, bion tears, and that's it.

I have tried all of the following at least once, arranged in very important categories:

Stuff that did not work at all: olive oil, Dr. ******'s drops (OL2 and OL5), Soothe, Dr. Tseng's extract for eyelids, the Dr. Holly drop for MGD that I don't see in the shop there (what was that called, Rebecca?), TheraTears, TheraTears capsules, acupuncture, n-acetylcysteine/glutathione, and approx 5761 tablespoons of disgusting flaxseed oil.

Stuff that helped (or at least seemed to) but did not solve my problem: doxycycline, Dakrina, Dwelle, hot showers, humidifiers of all shapes and sizes, Panoptyx goggles, restasis, systane, nutratear (aka Redkote), sucking on atomic fireballs a lot, evoxac/pilocarpine, rebamipide (or was it placebo? we'll never know), prayer, the rice-pantyhose trick, and posting on DEZ.

Stuff that made everything like it used to be before lasik:

So, I am on to something new. After many cancelled appointments due to my insane work schedule, I have finally succeeded in making full arrangements to travel from my home in Georgia up to The Boston Foundation For Sight to have custom scleral lenses made. There are some bad things about being in the US Army (people I don't even dislike wanting to kill me, for example), but one of them is NOT the health care plan, which is paying for every cent, including my flights to and fro, my stay at the Sheraton for 6 nights, and even my food while I am there. And, oh yeah, the $7600 for two lenses.

The process of fitting and making the lenses takes an entire Monday-to-Friday week, during which I will be away from my family, and so I figure that, if there is interest (and even if not, to be honest), I'm gonna write a bit here every day, explaining what was done on each day, giving some details to those who are interested in scleral lenses, but haven't yet made the leap. I hope it will be of use to someone. Day one is a week from today. If you have questions before, during, or after, throw 'em at me! If you are wondering how another DEZer fared with the Boston Sclerals, see this excellent thread by Lucy, here: http://www.dryeyezone.com/talk/showthread.php?t=830

Talk to you soon!

[kitty]

Welcome back, Erik! I'm looking forward to hearing about your scleral lens experience.

[Lucy]

Hello Erik!

Have often wondered............... Glad you brought us up to date and I am happy to hear your report of having your expenses paid for while going to BFS! I am proud to say that I support our troops--and am just happy to hear you are in on some good stuff that will help you! We (me, at least) appreciate all you do for us and feel you deserve our support.


Lucy

[Rebecca Petris]

Great to 'see' you again, Erik!

Best wishes to you for the fitting process. I was fitted in late June and have been doing very well in my sclerals ever since. It will be wonderful to have you post more details about the process.

p.s. you mean FreshKote. That was taken over by Focus Laboratories and it's available from pharmacies by prescription.

[Erik]

I neglected to link above to Rebecca's own experience at BFS: http://www.dryeyezone.com/news/editor.html

[sazy123]

Erik how bad are your eyes that make you a candidate for scleral lenses?

mine are moderate to severe, expect when my sinsuses are bad when there mild but thats another story..

Im considering them as a last resort coz i dont get relief from much else..

thanks sara

[kurt]

the health care plan, which is paying for every cent, including my flights to and fro, my stay at the Sheraton for 6 nights, and even my food while I am there. And, oh yeah, the $7600 for two lenses.

Congratulations that you will get coverage for the fitting and material fees.

The fitting fee does not include the initial initial consultation fee of $350, though (which insurance may cover as well).

Fitting Fees:
one eye: $3200.oo both eyes: $4000.00

Material Fees:
one eye: $1800.00 both eyes: $3600.00

Total Fitting Fees:
one eye $5000.00 both eye: $7600

Initial Consultation Fee (a separate fee): $350.00

[Erik]

Yeah, Kurt, they are covering that too, and any incidentals as well. I am VERY grateful for all of this, and my heart goes out to those who are not so fortunate.

The Army also buys all of my Refresh and Bion Tears and (of course) Restasis, but I am a bit of a special case because I am a doctor at the institution that has to fork out the cash, and they kind of like me here...

Sara, my dry eyes are probably "moderate" now, though they were far worse about a year ago before I got on long-term restasis. If I called my worst days 10/10 pain and my pre-lasik status 0/10, then I'd say that right now I average about 2-3/10 pain for most days, and once a week have about a 5/10, once a month an 8/10.

But, I'd like them all (or nearly all) to be 0-1/10 on the pain scale, know what I mean?

Lucy, if you are reading this, are you still using your sclerals and getting relief from them? I'd love to know. (Sorry if I missed it in another thread.)

[Lucy]

Check your private messages, Erik. Also for the other information gathering by others, my case gets more severe with time. I have been officially diagnosed with Sjogrens Syndrome after dealing with my lasik-induced dry eyes for the past 7 years. The glands in my left eye are probably non-existant.

Just today, I started on some medication which includes prednisone, methotrexate and folic acid. I think this is more (not sure) for the systemic damages of the disease occurring. I am experiencing full body ramifications and do not know the extent of my problems yet. The Boston lens are my only "fix or help" as far as I know in the world. I have to turn my attention to the more serious things going on now, as the eyes are as good as they will get. Hopefully, my treatment will somehow hold things in a pattern?

[Silverlady]

sorry about this

Lucy,
I'm sorry you have to join the ranks of those of us with Sjogrens. I can give you information as to a good Sjogrens web forum if you need it. Just send me a private message,
Billye

[Lucy]

Billye, thank you, but I'm already there. You were kind enough to put the link on the board a few weeks ago and I happened to be quite frantic at the time. Many thanks to you.

[Kym]

Prednisone a possibility for some of us

I was wondering what you thought of using a stepped down course of prednisone. is something I heard of to treat inflamation. Good luck next week

[Lucy]

Kym, I am on daily prednisone, methotrexate (taken once per week) and folic acid.

I have had no improvement in my eyes during this short course, plus the 12 day run just prior to starting this. I have other, more serious problems going on than my eyes at this time that we are trying to deal with. I appreciate your concern. I think it's too early to know overall what this regimen will do for (to) me.

[green eyes2]

I have some questions about the scleral lenses and hope someone can provide some answers, as I'm definitely motivated to get them.

1. Is Boston the only place you can get the scleral lenses and do you have to stay there an entire week?

2. Are the lenses flexible or hard and what do you fill them with: saline, TheraTears, etc?

3. If you are getting them only due to dry eye and not vision problems, from LASIK or keratoconus for example, but just happen to be mildly nearsighted will they incorporate your prescription into the lenses? Do you have to return to Boston if your lenses break/tear or if your prescription changes?

4. I read on the BFS website that Blue Cross Blue Shield (BCBS) of MA pays the fitting fee. I have BCBS, but it's not MA. Does anyone know which BCBS will pay? If I call BFS can they tell me if my Blue Cross is one that pays? I know they won't pay for a flight there, hotel stay, etc. but as long as it would pay for the fitting fee and the lenses I could manage the rest.

5. One last question, do they look natural in your eyes or do they bulge out any? Can people tell you have them in?

Thanks in advance for answering any of my questions.

[Rebecca Petris]

1. Is Boston the only place you can get the scleral lenses and do you have to stay there an entire week?

Please see my post at the end of this thread about sources for sclerals. There is no doubt that it takes time to fit sclerals. If you go the BFS route, you should plan on staying a week. If you go to one of the others you're looking at repeat visits, because the lenses have to be ordered from the manufacturer.

2. Are the lenses flexible or hard and what do you fill them with: saline, TheraTears, etc?

Hard. Typically Unisol (unpreserved saline). They can theoretically probably be filled with anything. I've experimented with other things to fill them with.

3. If you are getting them only due to dry eye and not vision problems, from LASIK or keratoconus for example, but just happen to be mildly nearsighted will they incorporate your prescription into the lenses?

Yes

Do you have to return to Boston if your lenses break/tear

No

or if your prescription changes?

Dunno, but probably not assuming you have a local doc who can send them a prescription update

4. If I call BFS can they tell me if my Blue Cross is one that pays?

I'm sure they have full information on insurance coverage

5. One last question, do they look natural in your eyes or do they bulge out any? Can people tell you have them in?

They look pretty natural. I think someone (Lucy maybe?) mentioned something about a slightly "glassy" look. They don't really protrude a lot or anything. I go to a lot of ophthalmology and optometry conferences and am generally around eye doctors a lot and they don't know I'm wearing them unless I say so - then they peer in and can tell that that's what I'm wearing.