How does it work?

[elsie]

Hi,

I've been reading thru this thread just now and have to chime in - 26 years post op, so have lots of experience.  My right eye produces no tears, so I completely know the pain and frustration.  First, ointment is the only, and I underscore ONLY, thing that gives me relief.  I use it 24/7, do not waste my money on drops or gels.  I never get total relief, but my cornea is in excellent condition.

I also have a tarrsohaphy.  Not wild about it, but had an unbelievable opthamologist who worked in conjunction with my AN Team. Cosmetically no one really knows that I have it AND it has helped save my eye.  My opthamologist and I worked together for several years and I gradually got more relief.  He cauterized both my upper and lower tear ducts (after trying plugs that kept falling out), I now keep more of the scant tears that I produce.  We also permanently removed most of my lower lashes that would bother my eye and agitate it more.

I also recently started patching my eye at night - should have been doing that from the beginning as it has really helped.

I just got my first prescription and thought that it would be time to explore a scleral lens.  I went to the U of IL eye clinic that is associated with the Boston PROSE clinic.  My new doc said that my cornea is in unbelievably excellent shape (so please, please get yourself to an opthamoligist who knows and understands AN aftermath and/or dry eye).  But most importantly said that there is now a range of options I can explore before getting to a scleral lens.  My first option is a NEW (2 years old at most) daily wear soft lens...normal, every day contact lens, that we have always heard should be avoided at all costs.  The sample brought me instant relief that I haven't felt since my surgery decades ago.  I will be fitted for them next week, and am so annxious to get them.  I may be disappointed, I know, but there is great hope.

My advice to AN patients is to constantly research and advocate for yourself.  Not all of our after surgery synptoms can be solved, but I am learning that more and more of them can be helped.

[feline]

Can u wear a scleral lens with prescription glasses?

[Kerrybr92]

Yes. The lens can either have a prescription in it or you can get it without and then you can wear your glasses over it.

I can not say enough how much of a lifesaver the PROSE lens (sclerel lens) from the Boston Foundation for Sight is for me.

[jaqiday]

So I had my appt today to get fitted for the lens. With the test lens in I had no pain and could see almost clearly (still had ointment in eye).  The fitter said with no ointment in I would see clearly, it takes a bit to get ointment cleared out of my eye. The cost wasn't cheap even with my insurance, but I would pay twice to get back to normal vision and no eye pain again.  It will take two weeks for my lens to come in so early Oct I will update.  The cost included 4 months of having the fit and lens checked.

Thank you everyone (especially Jill Marie) for all the advice.  I wish neuro would just add this to recovery for anyone with facial paralysis.

[Jill Marie]

Jaquiday,

I've been trying to catch up on all the posts, don't think I read where you have gotten your lens yet.  Hopefully you get it very soon.  The last Jupiter lens I got cost me $300, Insurance didn't pay anything because I hadn't met my deductible.  If I order a second lens with the first lens the cost of the second lens is a lot less, hopefully that will be the same for you.  I'm like you, willing to pay anything to get rid of the pain. 

I'm so glad I could help, looking forward to hearing how the lens works for you.  Jill Marie

[Jill Marie]

Elsie,

I'm hoping you can give me an update on the daily wear soft lens you were talking about.  My eye doctor wants to see if a daily wear lens called the Total 1 will work for me.  She asked me to ask you if that is the lens you are going to try.  Also I was wondering why your eye doctor wants to try different things before trying the scleral lens on you?  Is it the cost of the fitting and lens, the size of the lens or some other issue.  My lens isn't as big as a normal scleral lens, mine is a 15 where as I believe the normal scleral lens is 17.  The total 1 is 14. 

My eye doctor and I help each other out, she sees me on a moments notice and prescribes things over the phone without seeing me and I try out new things for her. 

I still use ointment with the scleral lens, we're hoping I might not have to use the ointment with the daily use lens. 

Thanks for any help you can give me.  Jill Marie