SJS, from Spain to Boston, it's worth a try?

[maxif875]

Hi all.
I'm had a Stevens Johnson Syndrome long time ago hence i have obviously severe dry eyes. i had never heard anything about scleral lenses until now thanks to this web, and for that reason i'm not sure if i'm a fit for them, maybe nobody has told me nothing because i'm not.
Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english

[cristiandryeyes]

Hi all.
I'm had a Stevens Johnson Syndrome long time ago hence i have obviously severe dry eyes. i had never heard anything about scleral lenses until now thanks to this web, and for that reason i'm not sure if i'm a fit for them, maybe nobody has told me nothing because i'm not.
Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english

Hola. Lo más parecido a BFS en España es el instituto IOBA de Valladolid, sé que hacen lentes escerales a medida, quizás deberías empezar por ahi Suerte y saludos desde Valencia.

[maxif875]

Muchas gracias!
Sabes si en algún lugar de su web hablan de ellas? no lo veo por ningún lado y lo necesitaría para llevárselo a mi médico.

What about the last two questions? Can anyone who tried them give me some input?

[odydnas]

Hi! I am not a scleral lens user, but from being on this site for so long, I've learned a few things.

1. Many doctors do not know about the potential benefits of scleral lenses for dry eyes, so the reason they havent suggested this treatment to you could simply be due to ignorance, not incompatibility. Dry Eye is a complicated subject that few doctors are interested in, so if you learn of a treatment on this website that no doctor has ever suggested to you, don't be afraid to find more information to bring to your doctors and ask them about it.

2. It can be very expensive, but they have told me that they do not turn anyone away due to their inability to pay. I don't know if Spain will help you out or not, but this would be a question I would contact Boston Foundation for Sight to ask them.

3. I have heard that while there, they will put trial lenses in your eyes to see if it helps you. If it does help, then they will spend time taking measurements and stuff and make you a customized pair and you will learn how to insert and remove them.

4. In terms of benefits, it can be very individual and I have heard some very mixed results. I have heard people say that sclerals did not help at all. But I have also heard people get miraculous results from sclerals and find complete comfort with them. And I have also heard a lot of results between these two extremes. It is hard to predict whether sclerals will do anything for you without actually trying them.

I believe I've read some people post that a guy named Ken Pullum in the UK (I could be wrong here) fits sclerals. Do a search for that. So that could be a cheaper option to try. But keep in mind, Boston Foundation for Sight focuses only on fitting sclerals and many of their patients have SJS, so they would have a lot of expertise in that area.

I hope that helped! And your English is fine!

[cristiandryeyes]

Muchas gracias!
Sabes si en algún lugar de su web hablan de ellas? no lo veo por ningún lado y lo necesitaría para llevárselo a mi médico.

What about the last two questions? Can anyone who tried them give me some input?

Te recomiendo que llames por teléfono y como dice el amigo de arriba, un médico normalillo no sabe de lentes escerales, lo único que hará es desalentarte.

Saludos

[Rebecca Petris]

Do you think it's still worth a try? it's a lot of money that i'm not sure i could spend in something that maybe doesn't works for me, do you think i could receive subsidy here in Spain to do it? any advice?
And then, i have some other doubts, such as: What do they do to you exactly in these 10 days of stay? and what are the real benefits afterwards?

Thanks to all, and sorry for my (POOR) english

Very good advice from odydnas. Just a few additional comments:

Amongst the dry eye crowd, SJS, GVHD and cancer patients are generally the ones with the most to gain from scleral lenses. I've known a lot of people with SJS who wear them (mostly BSLs but also a few with other kinds of sclerals). Many times it works out perfectly, many times it's not perfect but gives them enough benefits that it's still worth it, and sometimes it doesn't work out at all due to other eye conditions or factors. The overall success rate for these patients is - I think - higher than for people with dry eye from other causes or less severity. On the other end of the spectrum I suspect the LASIK patients have the least predictable results for several reasons.

For questions about subsidy, you would need to contact Boston Foundation directly. I know that people from some countries receive government subsidies for the treatment but I don't know which countries.

During the visit your time is divided between lens fittings and trials, and training to care for, insert and remove the lenses. Most people spend most of the day at the clinic during the visit.

Benefits depend on what your condition is and whether the fitting is 100% successful. The lenses can restore vision in people with various corneal diseases; they protect the eye surface from suffering ulceration and scarring from extreme chronic dryness; and they can greatly relieve dryness symptoms and also light sensitivity.

[maxif875]

i can't ask for more, i have no doubts left
Thank you so much
Muchas gracias

[Yogini]

I have just been approved by the Boston Foundation for Sight for a scleral lens in my left eye. The appointment hasn't been scheduled as yet, but I'll keep you posted on my progress. While I have severe dry eyes in both left & right, only the left seems to cause me extreme discomfort. I'm hopeful.

[maxif875]

Yes Yogini that would be very useful THANKS...
As expected i consulted it with my doctor but he didn't know anything about it, he told me that he'll consult it with others doctors in the next congress but i don't know when it will be, so i think i'll start to do my own way, maybe speaking with the IOBA in Valladolid and also with the IMO in Barcelona...
What do you think? should i wait for my doctor's guidelines or should i start digging into it by myself?

[buntbean]

I just went last week

Dr. Rosenthal is the most compassionate doctor. All the doctors really want to help. I never heard of Scleras either and I've suffered horribly for 5 years and I live in Massachusetts! It was actually a referral from another doctor a few months ago that got me there. Their website address is www.bostonsight.org. There is also some great information on youtube if you search for boston foundation for sight. Not only do they not turn anyone away but there are hospitality homes for people that can't afford to stay in a hotel. One lady I met was staying at one and only had to walk up the road to the office.

No, they didn't work for me because although I do have severe dry eye, I was actually there because I have corneal neuralgia. My eyes are hyper-sensitive and anything touching my eye causes me great pain. The good news is Dr. Rosenthal is putting corneal neuralgia on the map so to speak. He's working on some treatments for people like me as well.

[maxif875]

Thanks buntbean for you insight...
It seems that doctors not knowing about Scleral lenses it's sadly a platitude.

My updates are just few, it goes ahead slooowly. I emailed the IOBA (Valladolid, Spain) and the IMO (Barcelona, Spain) to have some information about what should i do from here before travel.
Still waiting for clear reply... Let's see...

YET another question; Once you contact them in order to have an appointment, how many time does it take to finnaly meet them? i'm planning doing it in summer (july, august...) do you thinkg it's possible?

[maxif875]

Finally i have an appointment with Margarita Calonge of the IOBA (Valladolid) the 16th march, she seems to know a lot about Scleral lens...

[Rebecca Petris]

Max, that's great about your appointment - I sure hope she can be helpful & informative for you.

Re: BFS, I don't know what their lead time is currently but several people I know who are visiting this month started the process about 3 months ago so maybe expect about that long.

[mylittlem]

Regarding the lead time, I had a very favorable experience with BFS. My medical records were sent to them on 12/31. By 2/1 I was accepted as a candidate and my insurance company had approved the cost. The first appointment they could have offered me was 2/10. I opted for a later one, 3/9, due to planning and logistical reasons.

[maxif875]

Ok so, while waiting for the appointment i also wrote to an optometrist (Fernando Fernandez Velazquez; from Madrid) and he told me that the boston scleral lens weren't better than others scleral lens with tear-fluid reservoir and he made them HERE IN MADRID! so now i have some new doubts... Is he right? what makes the Boston scleral lens so special? what's the difference with others scleral lens with tear-fluid reservoir?

He also sent me these two links:
http://www.clspectrum.com/article.aspx?article=101397
http://www.clspectrum.com/article.aspx?article=103116

PLEASE HELP!!