neurotrphic cornea and scleral lens

[LP60Girl]

I had a gold weight put in my lid and it's probably 75% shut with the tarrsoraphy.After reading on here about the Scleral lens, I asked my doctor if he knew about it and if he thought I was a candidate. He didn't completely shut down the idea but hesaid he wouldn't recommend it for me, primarily because the reservoir is a cesspool for bacteria and i have a neurotrophic cornea which means i have no feeling in it which also means that i'm not producing the tears i normally would because it never senses dryness. My question is if anyone else that either has a scleral lens or thought about getting one also has a neurotrophic cornea.
I'm so glad i stumbled upon this forum!

[feline]

I had a tarsography about 11months ago and now they want to add a gold weight, do u think the gold weight will help with my eyelid closing ? I don't have any thoughts on the lenses, sorry how is ur facial paralysis ? They want to perform a nerve graft as well obviously not at the same time, any thoughts
Feline

[Jill Marie]

Hi and welcome to the forum, I'm glad you found us too!

Everyone that uses the scleral lens has dry eye issues so I don't see where it would matter whether you have a neurotrophic cornea or not.  As for the cesspool for bacteria, that could be true but I know several of those that have the lens and post here would say that's not an issue.  I had the lens for a couple of years and LOVED it.  Then I started having allergy issues in the Spring and Fall, I couldn't wear the lens because of the irritation but had to wear the lens to keep the moisture in my eye.  My eye doctor thought perhaps I had developed an allergy to the lens.  Perhaps your doctor was right and I had to much bacteria under the lens. 

I see no reason not to give the lens a try or you could try the lens I use now, it's a daily use lens, put it in my eye in the morning and throw it away before I go to sleep. It's a lens made by Acuvue, it's the Oasys HydraLuxe, costs just under a dollar a lens.  To some people that seems like a lot but to me it's nothing compared to the relief it gives me.  You might want to do some research on the eye issues category of this board to learn more about both the scleral lens and the daily uses lens.  Feel free to ask questions.  Your profile says you're from Kennewick, I've been there several times, driving from my hometown, Goldendale to where I live now, Spokane.  Jill Marie

[Kerrybr92]

I have dry eye from the surgery and also do not produce any tears at all.  I have a platinum weight in my eyelid. And have very little feeling.
I have had the scleral lens and used it everyday since fall of 2012. I have NEVER had an eye infection.  The lens is not a cesspool.  I am afraid you may have received bad advice from a doctor that is not educated on the lens.
I would recommend that you do a little more research and find a doctor who is familiar with the lens.  It may not be for you but if it is it may change your life like it has for several of us here.
Good luck.

[LP60Girl]

Feline- the gold weight will help when you close your lid (like when you are sleeping) and it will help keep it shut. Since I had both put in at the same time it's hard to say how much of a difference the weight would make.  If they think your lid needs more help to shut I would go that route as opposed to shutting it more with the tarrsoraphy because it's not as aesthetically noticable.  I have a tarrsoraphy on both sides of my lid and it's mostly shut already so needless to say I hate how it looks.
I had a check-up a few days ago and my doc said that for the first time since the procedure, my eye wasn't dry (I use ointment 3 times a day). He said I could try going down to using ointment 2 times a day and if it still does well in a couple months, he'll consider opening the inner tarrsoraphy (and increasing the ointment to 4 x day again).  I'm glad it's making progress. If I'm at least moving forward I feel a bit better about it, but man I'm so tired of having my lid (mostly) shut!
I had the resection surgery on June 23,2014 and a year later the doc said that since the facial paralysis was improving, he has high hopes that it will come back and he didn't recommend the nerve surgery anymore. It took probably 9-12 months before I really saw any improvement and I got quite discouraged because I head that if it doesn't improve within a year, the likelihood that it will is low.  That didn't seem to be the case with me; I guess sometimes it just takes longer.  I look at photos of me in the hospital and I look completely different today. It's still there but it's not super noticeable until I make extreme facial expressions. 

One of these days I'll update my profile so ya'll know my history.
*sigh* slowly, but surely I'll get there!

[jaqiday]

I am going to agree that you might be getting bad advice. I would try the lens and see what happens. Both my drs had never heard of one, even my neuro ophthalmologist who recommended surgery. I got the lens instead. It hasn't been perfect but I finally had relief from the pain in my eye.

Recently I broke my lens and while waiting for the new one, I found my eye can now go with just drops. I am going into my 11th month since surgery and my facial paralysis seems to be healing almost completely. If you saw me you probably wouldn't notice except for my mouth is a bit off. It really can just take some time to heal.

I am getting a replacement lens to be on the safe side. Good luck

[nancyann]

Jill Marie - my hero!  I've had the scleral lens because my eye doesn't shut either due to total facial paralysis right side.  I've had the scleral lens since feb. 2013 & have had no problems at all!  My optholmologist at the time & oculoplastic surgeion knew nothing about the scleral lens, but it changed my life!  I put it in  & don't need any lubricant during the day - before the lens I had to put lubricant in every 1-2 hours.  I love the wind blowing on my face now, before the lens it would cause so much burning & pain.
Go for the lens, especially since you have no feeling on your cornea, you're more prone to ulceration because you don't know how often you should be lubricating the cornea.  Best wishes...

[JLR]

Hi can u share more info re lid stitching. My dr wants me to do this. Just the corner. How bad was the surgery and the after care thanks Joan

[Cheryl C]

Find a doctor who specializes in the scleral lens.  I traveled to a city in order to see one and I'm so glad I did.  My opthalmologist I go to in my hometown was not familiar with it either, but since then, because of my experiences, he has been able to direct several more patients down the right path.  I have a scarred cornea - no feeling in the eye, either. With the lens I have had no problems at all with bacteria or anything else.  I use the drops that are preservative free and can wear the lens from the time I get out of bed until I return. I clean it daily.  I cannot express the difference it's made.  Ceiling fans, wind, beach, opening freezer doors -- none of this even phases me any longer, where it used to be a source of constant irritation.  Sometimes we hit closed doors, but seek out more than one opinion.
Cheryl C