i want to try scleral lens

[painintheeye]

i am 42 year old mother with a 6 year old child. i probably have perimenopausal dry eye as it just hit me suddenly. i am also suffering from anxiety disorder for 5 years during which i was also agoraphobic. now i am hit with this dry eye, it makes it almost impossible to venture outside especially when i am finally recovering from my agoraphobia. i am anxious all the time and have had several anxiety attacks. the dry eye is debilitating for me both mentally and physically. i am literally trapped inside the house. i know scleral lens is not the cure but all i am asking is pain-free breaks where i am able to put some dignity back into my life and start taking care of my son whom i've ignored for a while. i am from taiwan so a trip all the way to boston is not likely. i am more keen on going to london to get it done if necessary as it is closer to me (12 hr flight instead of maybe 20 hours). i know i sound desperate because i am. so my question to all is that should i go ahead and try and in the meantime carry out my regular treatment i.e. restasis, supplements, goggles, etc, etc) i am sorry to go on and on but i cannot function at all right now and feels that i have no hope. btw, i only have severe dry eye (it just dried up one day) and no other problems and a healthy cornea so far. your advice is most appreciated. thanks, chris c

[Rebecca Petris]

Hi Chris,

I'm really sorry to hear about your plight. A few thoughts:

- For many of us women with dry eye that is not auto-immune, the answer is very often in the meibomian glands. Are you doing warm compresses, Omega 3s, lid hygiene, etc?

- Hopefully wraparound eyewear will give you a good boost (it does for most who try it).

- Regarding sclerals, there is also another Scleral fitter in Europe who seems to be having good success with them - I don't have the details handy but will get them and let you know shortly.

[painintheeye]

is it innovative sclerals?

rebecca,

thanks for your reply. it's very important for me to hear from your opinion on the sclerals. i was so impressed with your results and hopt to achieve the same too!

i searched the site and found innovative sclearls headed by ken pullum. i sent them an email and in fact had just spoken with him regarding getting a fitting and is waiting for him to call back with some more details. i am not familiar with what's the difference between BFS and Innovative sclerals' lens material. and is wondering which one may provide more comfort because it has direct correlation to wear time. i understand IS makes RGP sclerals. what do you have? do you the lenses will provide relief from dry eye pain? and exactly how much tear do you basically need to naturally lubricate these lenses anyway because if it's for severe dry eye then you would assume there's NONE left so are you relying on constantly applying lubrication?

i went to have my eyes examined a few times by opthm recently and nobody told me i have MGD or anything else. they all say the eyes look healthy but aging is a factor. i don't have any mucus or anything so i don't quite know what are the signs for malfunctioning glands. i guess i can ask again.

omega 3 since last july (8 months before onset to prevent dry eye), bio tears, avocado oil, borage oil and spirulina taken consistently. restasis for 3 days with (knock on woods) no burning and my dr. calls for 3X instead of 2X. getting wrap around hopefully soon. i also asked my friend to order your eye drops to try and will be getting those in mid-may. cold/hot compresses everyday so i don't know what else i can do.

[Rebecca Petris]

Regarding the other scleral fitter who was recommended to me, here is contact information:

Dr. Visser
Visser Contactlenzen
info@vissercontactlenzen.nl
Sint Annastraat 93
6524 EJ Nijmegen
The Netherlands
tel # 31 24 323 61 55
fax # 31 24 324 01 45

I don't know enough about lens materials to answer detailed questions. Personally I think that the BFS lenses are the 'gold standard' though. - I get pretty much complete dry eye relief while wearing the lenses. If I wear them much more than about 14 hours they start getting a bit uncomfortable. One thing that I found crucial with these lenses was the plasma treating. Without that, it is very difficult to keep the top side of the lenses properly lubricated on a truly dry eye. Also, I use NutraTear to lubricant the lenses - i have not had success with any other lubricant. (Note though NutraTear is not FDA approved for that purpose.)

I have to wear protective eyewear outside because the top side of the lens will get dry and irritate the lids if I'm in any wind at all.

i went to have my eyes examined a few times by opthm recently and nobody told me i have MGD or anything else.

I don't want to sound critical of any doctor but I would tell pretty much ANYONE who gets this response that they should take it with a grain of salt. It's one of my greatest frustrations that many people with MGD are frequently told they're fine, till they finally see a doctor who is really well versed in MGs. This happened to another user (Julie1) recently who reported about it. - Personally, I've never been told by an examining doctor that my MGs are in really bad shape, and yet my basic MG treatments are a vital part of my eyecare - if I slack off heat treatment I wind up in trouble fast. - Take care with heat, though, not too hot and not too frequent as that can actually make things worse.

I just spent 4 days talking nonstop with doctors at ASCRS about protective eyewear, MG treatments etc. and the range of understanding about it is amazing.... from a Bay Area MD who described himself as a squeezer (first thing he does in an exam is squeeze the MGs and see what comes out) to some Restasis devotees whose eyes begin to glaze over at the merest mention of a meibomian gland.

[Julie1]

Hi Chris,

I am so sorry to read about your eye pain. It's definitely a challenging condition, and many people who do not have dry eye cannot even begin to understand the suffering. I am so glad that you found this website for support and information about how to cope with DES.

It sounds like the symptoms of DES have just started for you, which means that there's lots of hope for getting the symptoms under control. I don't want to discourage you from trying the Sclerals, but it might be best to try everything else before making a significant investment (time, money) in Sclerals. I thought about getting Sclerals at one point because I was so tired of all the pain, and someone (I don't remember who -- I think it was actually Rebecca) told me that the Sclerals would always be there if I needed them and that I should give myself time to try different therapies and to develop stronger coping mechanisms. I'm really glad that I listened to this advice. I'm by no means cured of dry eye, but things are better than when my symptoms first started. Rebecca has given some good advice of different things to try, and it sounds like you are being proactive in trying to find something that works for you. And, the Sclerals are always an option if you need them.

Things will get better for you. You will be able to be a good mother to your son and you will be able to enjoy your life again.

-Julie

[Lucy]

Sclerals are not a sure thing. I got mine about a year and half ago and have recently made an additional week long trip to Boston----and I'm still not there. My fit for my painful eye (best vision) is not good even with a recent week working out new lens. I still have hope this can be corrected, but a year and a half is a long time when you expect the lens to be the fix. It is not the fault of the clinic, but people have too high expectations and we don't read about the failures. Many thousands invested is not something you should take lightly......especially when there is no guarantee. The clinic does their utmost to make sure you are a good candidate if they accept you, but again no guarantees.

Lucy

[sazy123]

Hi

Painintheeye

Have you got a update on scerals? have you made an appointment or already been?

I am considering going to see him, but cant at the moment as my eyes feel good.

How long is the wait for the appointment? How bad are your eyes? is he ok about letting people who are not the worst case senaro try them?

thanks

[painintheeye]

i PM you

check your PM box. chris

[geshassjs]

hi, am new here. not sure how this works.
i am interested in trying the BFS sceleral, but was told my eyes are too dry. even for 'bandage' contacts. my last schermer test was 2. i am concerned as i seem to be getting worse this past month. i have an appointment the 13th with my Dr. she has seen SJS eyes before. i am very fortunate to have mostly just the dry problem. anyone hear of too dry eyes??

[Rebecca Petris]

Hi there and welcome!

I noticed in your profile that you have SJS... I think that many SJS patients have been successfully fitted with sclerals. There are challenges when your eyes are very dry. The scleral takes care of the corneal surface which is great, but when the underside of the eyelids is dry this poses challenges for keeping the top surface of the lens lubricated. Plasma treatment of the lens helps with this considerably. And those of us with dry eyes who wear sclerals usually have to lubricate the lenses regularly and wear protective eyewear outdoors.

May I ask by whom you were told that you're not suitable, i.e. was it your local doctor? If so and you're still interested in pursuing it, you may want to contact the Boston Foundation for Sight directly (see bostonsight.org for contact details). They can share information with your doctor about similar cases, and they also have an initial screening process with trial lenses which can help determine whether you are a suitable candidate before actually starting the lens fitting process.

[calli66]

..but was told my eyes are too dry. even for 'bandage' contacts. my last schermer test was 2.

Hi there. I also have a schirmer score of 2. I do OK in contact lenses (Biomedics XC, and Extreme H2O), but I have my bad times. Contacts make my eyes feel more protected, and I can wear the Panoptyx over them which really helps. Soft contacts can work for dry eyes.

My bad times--it's not irritation from the lenses. But when I use the computer or read for too long (an hour or more), my tear production goes down so low that it can't hydrate the lenses and they dry out in spots and become opaque. Then I can't see properly! If I work outside or do almost anything slightly active, then my eyes make enough tears (and I blink enough) to make wearing contacts comfortable.

C66