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

[maxif875]

Thanks all!
I still get my hopes up since i don't feel she gave me a good/clear explanation about why not (maybe i should insist, but i was really tired, they did me A LOT of proves before speak about the lenses), some things she told me that i think she was right, i'll share: -Stop using autologous serum as a lubricant (i used every 20mins) since it's not inteded for lubricate but for nutrite, she reccomend that i put it 5 times per day, and that i use some non-preservatis drop throughout the day. -Stop using tobradex, i used it 2 times per day even if i hadn't any infection, i was wrong since it will not prevent any infection.
Another interesting thing that she told me was about the possibility to put stem cells into the amniotic membrane.

:::::The issue:::::
I have successfully contacted with a member of this group, an italian guy, also stevens johnson, and he told me about a doctor who served him as a referral to Boston, Maurizio Rolando; i have writen Rosenthal but he didn't give me any name, he told me that he'd need photos and details of my eyes in order to tell me if i could get benefits from them, and for that i need a doctor here (or in Italy, or in France). I've also conntacted some others doctors in the US and they told me to talk to the IOBA (the same place i went). i've also conntacted Ken Pullum, but he didn't reply yer.
I have AALSOO joined to a group (yahoo) of SJS in italian, and there was one french women that told me that in Rouen there is a greate doctor who has served as guide to a lot of SJS for the Scleral Lens, and that he works with an fundation of SJS in France called AMALYSTE, his name is Muraine.

So my hopes now are put in Rolando and Muraine, i'll probably go to visit Rolando soon, i hope.

Rebecca, the details of my eyes condition are in my profile, my vision is really poor, i can't see anything with my left eye (at least anything useful) i manage more or less with my right eye (but i can't see the details from 2 metters away) i also use A LOT of drops as i have written.

[Rebecca Petris]

It turned out that she didn't think it's a good idea for me: She thinks that it's aimed for persons who are in a pain (opening/closing eyelids, etc) and/or photofobic persons, and that i won't get any sight improvements from the Boston Scleral Lens.

Did she give a reason for not expecting visual improvement? I'm sorry I don't remember but what's the state of your vision and why?

it is really ONLY for persons who suffer constant pain?

Absolutely not.

The primary use of scleral lenses is for visual distortions from corneal disease such as keratoconus. Pain and photophobia are much more recently discovered uses. So that's kind of a surprising response - usually doctors know it as a vision treatment, not a pain treatment.

But whether it can help your vision depends what's wrong with your vision.

...other than i won't need as much drops as i need but it doesn't pay the price

Well that's certainly a possible point. With people who are getting sclerals exclusively for eye pain/dryness, there's always the risk that the benefits don't balance out the drawbacks especially if there are any major issues going on like hypersensitivity in the eyelids. For every, say, five or ten people I've known with a successful fit, I've known someone who could not ultimately wear the lenses for one reason or another. But not too many doctors understand the full range of potential from optimally fitted sclerals and I don't know how anyone could accurately predict your outcome.

[odydnas]

Maxi, many doctors do not know the all the possible uses for scleral lenses. The doctor you saw is misinformed. Scleral lenses are not only used for people in constant pain! They are definitely used for people with vision problems too! Such as keratoconus!!! It says so right on their website!!!

Taken from their website:

"2. Who can be helped by the Foundation's vision-restoring lenses?
Only patients whose eye functions are impaired by damaged/diseased corneas (other than swollen corneas) are potential candidates. Unfortunately, contact lenses cannot help people who are suffering from retinal problems (such as macular degeneration), glaucoma, optic nerve disorders or other conditions of the interior or back surface of the eye. The fluid reservoir of the Boston Ocular Surface Prosthesis offers two principle benefits.
1) Optically masks irregularities of the corneal surface to improve vision in cases of keratoconus, pellucid marginal degeneration, Terrien’s marginal degeneration, certain corneal dystrophies, scarred or irregular corneal surfaces due to injuries, infections or diseases, following complicated laser procedures or corneal transplants with high astigmatism, etc.
2) As a therapeutic and protective liquid corneal bandage in cases of severe surface disorders of the eye:
a. severe dry eyes (Sjogren’s syndrome, rheumatoid arthritis and other autoimmune diseases, chronic graft versus host disease, radiation of the orbit or surgical removal of the tear gland, idiopathic (cause unknown) etc.
b. damage to the corneal surface healing mechanisms (stem cells) such as Stevens-Johnson syndrome, TEN, chemical and thermal burn injuries, ocular pemphigoid, aniridia, etc.
c. anesthetic cornea due to neurosurgery, certain virus infections of the cornea, diabetes, associated with birth defects (familial dysautonomia, Seckel’s syndrome, as an isolated finding, etc.)
3) Combinations of 1&2

"


I think there have been several people on this board who got sclerals for vision issues, including Rebecca. The best people to ask if sclerals are right for you is to go straight to the source and ask BFS themselves. You should call or email them. Their website is www.bostonsight.org. They deal with patients from around the world, maybe they can even point you in the right direction in terms of doctors in your continent. Good luck!!

[cristiandryeyes]

Ok so i came back from the IOBA institute (Valladolid, Spain)...
First of all, sorry for the delay of the update but i've been a little stressed lately.
It turned out that she didn't think it's a good idea for me: She thinks that it's aimed for persons who are in a pain (opening/closing eyelids, etc) and/or photofobic persons, and that i won't get any sight improvements from the Boston Scleral Lens. other than i won't need as much drops as i need but it doesn't pay the price, and in general, i didn't see her too focus/enthusiast and she circumvented a little bit the issue, ...
I also told her about Restasis, and she liked it but she said that it was very difficult to get it from europe (she told me that i could find it in the Vatican or Monacco)
What do you think about all that? it is really ONLY for persons who suffer constant pain? it does not do any improvement in sight?..
She told me that it was better to do a transplant of stem cells.
Now i need your opinions more than ever so any reply will be appreciate, maybe a doctor (in Spain, France or Italy) who had already served as referral to Boston for someone else.

If you're really willing to get those sclerals, you can contact Ken Pullum who is a lens practitioner in the UK. He might have a colleague in Spain if you don't like the idea of making a trip. What's wrong with doctors? There are people out there that wear sclerals only because they had contacts intolerance.

[maxif875]

Back from Valladolid

Ok so i came back from the IOBA institute (Valladolid, Spain)...
First of all, sorry for the delay of the update but i've been a little stressed lately.
It turned out that she didn't think it's a good idea for me: She thinks that it's aimed for persons who are in a pain (opening/closing eyelids, etc) and/or photofobic persons, and that i won't get any sight improvements from the Boston Scleral Lens. other than i won't need as much drops as i need but it doesn't pay the price, and in general, i didn't see her too focus/enthusiast and she circumvented a little bit the issue, ...
I also told her about Restasis, and she liked it but she said that it was very difficult to get it from europe (she told me that i could find it in the Vatican or Monacco)
What do you think about all that? it is really ONLY for persons who suffer constant pain? it does not do any improvement in sight?..
She told me that it was better to do a transplant of stem cells.
Now i need your opinions more than ever so any reply will be appreciate, maybe a doctor (in Spain, France or Italy) who had already served as referral to Boston for someone else.

[odydnas]

I have no idea, except that the Boston scleral lens is completely customized to the patient in terms of fit, while other scleral lens are more standardized in fitting like regular contact lens so you do not get a perfect fit. Think of BFS as getting custom made clothes tailored to fit you, while most optometrists that provide sclerals are basically buying like buy clothes off the rack. (There are exceptions, the only other place that makes custom sclerals I've heard of is Dr. Gemoules in the US). You should find out if that optometrist makes custom sclerals.

But I think this would be a great question to directly ask Boston Foundation for Sight for the answer.

[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!!

[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.

[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.

[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...

[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?

[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]

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?

[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]

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