How does it work?

[thisisajourney]

How does the lens work to keep your eye moist?  Do you have to put drops in it to keep it from drying out? What are the pros and cons with using the lense

[Jill Marie]

Yes this is a journey and we will try and help you through it.  Have you read the posts others have made about the scleral lens, I'm assuming that is the lens you refer to.  You can either do a search for scleral lens or scroll down through the posts in the eye section of this board.

You put non-preservative drops in the lens before putting it in your eye, that keeps the moisture in, I also use a bit of eye ointment through out the day but nothing like I did before using the lens.  Some people just use eye drops along with the lens, but again not like they did before using the lens, we are all different. 

Pros of using the lens are numerous, cons for me are none, yes there are special things you have to do but compared to what I was going through without the lens NO BIG DEAL!  The lens saved my job and gave me my life back! 

Just got back from an extremely hot camping trip (in the 100's) so not up to posting much now.  Feel free to post more questions and I will do my best to answer them.   Read your other post about the doctor not undoing the eye procedure, perhaps if he new about the lens and how it will help you he would do the reversal as the lens will protect your eye. 

Take Care, Jill

[lorigasper]

I would agree with Jill.  The cons for using the lens - none.  The lens just holds a reservoir of saline on your eye and keeps it moist.  I had my eye closed surgically for 13 months.  Having it re-opened and using this lens has been life-changing!  My surgeon was skeptical because he'd never had a patient use these before, but I was just released.  He says I'm doing great!  I'll just see my regular optometrist from here on out because he did the lens for me.
I sure hope this works as well for you!

[jaqiday]

Hi
How did you go about getting the scleral lens? My neurologist knows nothing about them. I am seeing the neuro opthamologist next week. Is he the one to check with or is it a different type of doctor?

I am 5 months post op,  have facial paralysis and dealing with a dry eye that is driving me insane. I feel if I can get this eye functioning then I can get back to some semblance of an almost normal (an) life...

Thanks a bunch for any info.

[Kerrybr92]

Depending on where you live, one of the best options is to look for a clinic that is associated with Boston Foundation for Sight.  They designed the PROSE lens which is, I believe the first scleral lens.  I have been working with them since my surgery in 2011. They are fantastic and the fitting process is very exact.

Otherwise I believe that some other eye doctors will offer the lens. 

I know what you are saying though, not a lot of Doctors know of the lens.

Don't give up on finding one.  It will change your life for the better.

[lorigasper]

I looked on line and found eye associates that handled them in my city……but then checked with my optometrist and he and his partner carry them!  I was thrilled not to have to see someone new.    My optometrist did a great job of fitting them (even my opthamologist (sp?) said so!).  They had never used them for a patient like me, but all the doctors are as pleased as I am with the result. 

Look around - you may not have to look far!
Lori

[Jill Marie]

I would think that the neuro opthamologist would be aware of the lens and know where to send you to get one if they don't carry them.  I totally agree with both Kerry and Lori.  My eye doctor and previous ones I had gone to didn't know about the lens.  I got to the point where the pain was unbearable so my eye doctor faxed my info to an eye doctor that specializes in getting contact lenses for people with severe issues like mine.  He warned me that she probably couldn't help me because he was afraid a contact lens would stick to my eye because it's so dry.  He told me not to make an appointment and waste my money, he said she could tell by reading my history that she couldn't help me.

She didn't get the fax for some reason so I wrote her a detailed letter about what I was going through.  I mailed the letter on a Monday and she called me the following afternoon to tell me she COULD help me.  I saw her 2 weeks later and went home with a lens that day.  It isn't the actual scleral lens so it didn't have to be fitted like the scleral.  She measured my eye a bit then chose a lens size, gave me the office sample as she could tell how much I needed it.  I wore it 2 hours that day and increased it by 2 hours each day tell I could wear it all day.  That was 2 1/2 years ago and life is so much better. 

My lens cost $300, the actual scleral lens costs more, some of us on this board have a lens like mine and others have the actual scleral lens.  I believe the scleral is bigger than mine.  My insurance covers the lens but it goes towards my deductible which is $1500 so I end up paying for them.  I usually get 2 lenses a year, still lot cheaper than the $4000. I was paying for eye ointment.

Let us know how the appointment goes and if you have more questions, will help when we can.  Jill Marie

[jaqiday]

So last visit to my neuro opthamologist I asked about scleral lens and he knew nothing about it (nor did my regular neuro) but he found an optometrist in the system for me to check out. He said it's a jupiter lens. So I am planning to make an appt.  He seems to think it won't help at all with dry eye caused by nerve damage. Interesting eh?

He also said to let him know if it doesn't work out and he will do the weight and tighten my lower lid. I am still on the fence on having surgery, I am going into my 6th month post op. Haven't seen any big change in paralysis but it seems to be getting more tolerable. I can finally get through the day without endless pain but still have some bad moments. I have also twice had a sensation under my eye like a worm - hopeful?

Any advice from experienced lens users or anyone who's had the surgery would be greatly appreciated.

Thanks

[Jill Marie]

At work so quick note!  My nerve was severed during surgery and the lens is a life saver.  I believe my lens is a Jupiter, will check when I get home. 

[Jill Marie]

I checked and my lens is a Jupiter.  I didn't have the surgery so can't help you there.  I got my lens about 5 months after the first person on this sight got one. 

You will want to consider whether to get the lens or not depending on the possibility that your eye will tear again, as you have probably read on this board not much happens until the 6th month.  That's when I started getting movement, however despite what the doctor told me my eye never teared again.  It's up to you whether you want to wait and see what happens or spend about $300 or so to feel better tell hopefully your eye tears again.  If you can get the insurance co to pay for the lens then I don't see why you wouldn't want to do it.  The lens will not damage your eye or keep it from tearing. 

Not surprised the doctor doesn't know about the lens or it's ability, hear that all the time.

Hope this helps.  Jill

[jaqiday]

I have an appt with the 'special lens fitter' for sept through my insurance. Couldn't get in sooner. Another month of eye pain yay. I am not sure if he knows anything about why I want the lens but will see how it goes.   I currently am having another run of bad endless painful eye days, went from tolerable to not. Maybe through this month(6th post op) some magic will happen and my face will come back to life

here's to hoping....

[Jill Marie]

I'm really sorry to hear that you don't have an appointment with the lens doctor sooner considering the pain you are experiencing, sadly I do know what you are going through.  I didn't have a lot of pain the first few years after my surgery, just a very blurry eye from all the ointment.  Are you using non preservative eye ointment and drops to keep your eye protected?  If you have posted about what you use before I didn't read it.  Is there another doctor in your area that you could get an appointment with?  Do you have any idea why your eye went from tolerable to not?  I know that if I don't get enough rest my eye causes me problems even with the lens.  I know how you feel so I'm just trying to find a way to help you tell you can get the lens.  Jill

[jaqiday]

My surgery was March 9 and my eye has been intolerable from the moment I woke up. The Drs didn't offer any help, just gave me ointment and regular drops. I've been experimenting with every thickness of drops since. I now generally get by with gel drops and ointment during the day and more ointment and covering/closing the eye at night. I am still trying to figure out what makes it flare up worse some days. I think part is overdoing it in general which results in all my symptoms getting worse ( wonky head, dizzy, facial nerve palsy) I then have to rest a few days. I just need to learn my limits as I recover.  I also am having issues with my lover lid turning in which makes my eyelashes poke my eye - really annoying! I am still going to wait a bit to consider surgery to tighten the lid. I still hope the nerve will recover.  Eye Dr said to try the lens and let him know about surgery. Luckily (?) I am on disability and don't have to deal with work, but I was laid off and need to start looking for a new job. Hard when I am in limbo and don't feel I can commit to working a full day.

Thank you for all your help, really appreciate it.

[Jill Marie]

Sorry I haven't responded sooner, recovering from surgery, luckily non-cancerous tumor again, also dealing with dry eye do to smoke from fires in the area.  Anyway,  can't believe doctors still don't have a clue when it comes to dealing with the side affects of surgery.  I was given preservative eye ointment after my surgery 23 years ago and told to contact my local eye doctor.  The  eye doctor I saw didn't know anything about my surgery but at least he told me to use only NON PRESERVATIVE ointments and drops.  Sounds like you need to stick with ointment only day and night tell that nerve wakes up.  As for the eye lashes, give them a trim, they will grow back but for now you can keep them from annoying you.  Wish I knew of something that would take away the pain!  Take Care, Jill

[jaqiday]

Sorry About your surgery and not replying sooner myself.

I plucked the annoying eyelashes and have some relief finally. I have also learned to be more diligent and use drops at the first sign of irritation. I find ointment and gel drops are all that works for me and not to run out. The hot weather and fans are something to avoid as well. I use moisture sunglasses when I go out.  I also am trying tranquil eyes, took them apart and made a patch out of them. I didn't need both eyes covered.

I am continually amazed at how little I was informed of the side effects from the surgery. I still have dizziness and weird head and was told recovery would be 6 weeks. 6 months later and counting......