No scleral lens just yet

[saralynn143]

Back from my appointment with a contact specialist in the next city over. After spending quite a bit of time talking about my history and present needs and an exam, he does not think it is time to go with a scleral lens just yet. He would like to see if a treatment consisting of Restasis (both eyes), Lotemax (left eye) and warm compresses will get me to the point of needing Refresh PM only at night and using something like Genteal gel drops during the day.

It will take a little while for this regimen to be fully effective. I have a followup scheduled in July, but he stressed that if it is not working out for me that we can reevaluate in two months. If I do end up going to a scleral lens, he recommends a lens that he thinks would work better than the Valley Contax line. It is more expensive at $750 but he has never had a patient unhappy with this lens and his practice will buy it back if it doesn't work out. He estimated that the lens would last 1.5 - 2 years.

He recommended a bit of far vision correction for my right eye so I ordered my first pair of glasses in 13 years: purple with progressive lenses. Later on when we have determined whether the Restasis treatment works or I go with a scleral lens, I will have the option of staying with the glasses, a traditional contact or corneal refractive therapy where I would wear a contact at night and take it out during the day. I tend to think I would go for a traditional contact lens.

He was very complimentary both about my eyelid implant and how well I am taking care of my cornea. He asked if my right eye ever feels dry. I haven't noticed, but that may be because the left one is so extreme. There are a few small areas of slight dryness, but the Restasis should help with that as well.

I am slightly disappointed because I went into the appointment expecting to be fitted for a scleral lens, but I do think this is the right approach to take. If the treatment does work, I'm better off. If not, it's been almost five years since my surgery, so what is waiting three more months in the great scheme of things?

He also recommended a moisture chamber at night. I'll need to see if I still have a pair around here somewhere.

[saralynn143]

Here is an interesting development. A three-month supply of Restasis runs $218. As my husband points out, in nine months the lens would be paid for. He is checking whether the ophthalmology department at his office has a coupon.

[Jill Marie]

Hi Sara,

Sorry to hear you didn't get the lens.  As for Restasis, one of my previous eye doctors told me I could have a prescription for it but doubted it would work for me.  After reading a couple of posts hear I decided not to try it despite it being a prescription my insurance would pay for minus the copay of course. If you don't have Insurance that will pay for it I don't see that it's worthwhile as your husband said, the lens would be paid for in nine months.  From what I have read you will have to use Restasis forever, it's not like it will get the tears flowing and then you get to stop using it. 

It's been a couple of really long days at work so my mind isn't functioning at it's best so I will stop now, just wanted to let you know I was thinking about you.  Take Care, Jill 

[saralynn143]

I am fairly certain that the surgeon who did my eyelid implant said that where the initial trauma to the facial nerve occurs will determine whether and how much tear function will return. I think I was too busy readjusting my thoughts from the scleral lens to another approach to remember this at the time. Anyway, if the Restasis does not work, or works on the right side but not the left, that would be why.

As for the cost, fortunately my husband works at a medical clinic. After the pharmacy told him how much the prescription would cost, he checked with the ophthalmology department and they gave him two months of samples. That will last long enough to know whether or not it works. They also gave me a prescription rewards card to help with future expenses.

I have to use it twice a day and wait 15 minutes before using Refresh PM. That is the longest 15 minutes of my day because my left eye burns and my right eye itches. I bought some Genteal drops to use in my right eye since the doctor said it was a little dry.

I am willing to give the Restatis a fair trial, but if I were a betting girl I would lay odds that in a couple of months I will be fitted for a scleral lens, particularly if the burning and itching do not subside. I don't want to subject myself to half an hour of discomfort every day.

[Kaybo]

I hope it works for you but the Restasis didn't work for me...actually made me aware of the dryness in my good eye - which I had never detected before!!

K   

[saralynn143]

Thanks, Kay. Honestly, I think I am just putting in my time until I can be fitted for a scleral lens. I've done some research on Restasis the past couple of days. First, I would rather not be using an immunosuppressant in my eye for the rest of my life - seems like that would just make it harder to heal if something were to happen. Plus it can raise blood pressure. Not that I've had any problem with that, but still. Finally there is the cost. A $750 lens would pay for itself within a year.

The only reason I went out-of-town to see this doctor was to get a scleral lens. If I don't get one, my regular ophthalmologist can oversee Restasis treatment. Maybe I need to drop a hint.

[Jill Marie]

Hi Sara,

The reason I didn't try the Restasis is because as I mentioned before the doctor didn't think it would help, plus I read that it would cause the burning you are going through.  I just couldn't make myself go through anymore burning knowing it probably wouldn't help.  Wasn't aware of the side affects. 

I'm so sorry that getting the lens has been such a hassle, it shouldn't be.  I just can't wrap my head around the reasoning for not letting you have the lens now, makes no sense to me.  Does the eye doctor know that the drops burn your eye every time you put them in?  I don't see how that will change overtime.  Why not spend 5 minutes putting in the lens and 5 minutes cleaning it when you take it out instead of burning your eye for 15 minutes twice a day.  Good luck, Jill

 

[saralynn143]

I don't know either, Jill. This doctor deals with a lot of dry eye patients, but my case - with compromised blink - may be new to him. Even if tear production increases, they won't be properly distributed across the eye without the blink.

In my research on Restasis, it seems that the burning will diminish if tear production increases and the surface of the eye heals. However that may take 6 to 8 weeks. So if in two months my eye is still burning, I'll go back in and ask for the lens. I did not get the impression that he won't prescribe one, just that he wanted to try everything else first.

Also, if a two or three month experiment helps him learn for the next person in my situation, maybe it's worth it.

[ginsue]

Hi Sara,
I went to a new doctor that is in the top of his field in Chicago for that reason, he has seen people like me a lot so nothing was new to him.  It was very nice not having to explain myself and my problems to him, he already new.  I talked to him about you, I told him that you were given the meds for your dry eye and not the lens. He chuckled and said that you need to find a new doctor. I hope you don't mind me dissussing your case but I was so afraid I may have a similar experience. I did have to travel 1 hour and 45 minutes to get to him but it is worth it.  May I suggest goggling a "complex contact lens provider".   In my searches I have found a Dr Dirk Massie in St Louis.  I live in Illinois and I see that you are from Missouri.  It is worth finding someone who knows of our condition.  Hope this helps.   

Sue

P.s. I don't have a lens yet I'm waiting for insurance to decide if they will cover it but when they fitted me I felt like my eye was in heaven.

[saralynn143]

Hi Sue, I don't mind. I'm pretty frustrated with myself that I didn't just tell him to skip the Restatis and fit the lens. I don't think I will make two months, much less three. It just did sound reasonable there in the office and I hadn't researched it at all first.

The day I picked up my glasses (another frustration - I wish I had not gotten the expensive Progressive lenses and gotten an inexpensive single vision pair to swap out with reading glasses when I need them) I had lunch with a friend of mine from our years way back when in MOMS Club. I was at the time suffering from extreme GERD symptoms. She had just had fundoplication surgery for the same problem, and her bad experience convinced me not to go the surgical route. Instead I used medication, diet and exercise to bring it under control.

That's kind of what I think I am doing here. I see a future where not only can I tell about a positive scleral lens experience, but I will also have first hand experience about Restasis to share. I hope that makes sense.

Do you know the manufacturer or brand of lens you were fitted for, and do you mind sharing the cost?

Thanks,
Sara

[ginsue]

Sara,
 I am not sure of the brand since I actually didn't get it.   I also didn't ask.   The cost was quite a shock to me,  $1000.  That was only the lens not the exam.  You know I'm glad you brought this up because I never gave it a thought, you know they are going to come at you with the top end, the Cadillac sort.  I never asked if there was a less expensive alternative.  I liked this doctor very well but he just wreaked of money and he could not understand why I just didn't put it on a credit card and hash it out with the insurance company later.  The regular disposable contact for the other eye was $600, which I figured I'd shop around for because that is nothing special. I told him that I just had to pay $1300 out of pocket for my SoundBite the week before and you could tell this just didn't faze him. Guess we live in different world.

Sue

[saralynn143]

I searched for Restasis in this forum and found that it consistently does not work for dry eye caused by nerve damage. I just sent an email asking to discontinue the Restatis and move up my fitting for a scleral lens.

[ginsue]

Good for you Sara.  We are responsible to ourselves to see that we get the best health care possible and doing your homework is part of it.  Many doctor never cross a patient such as ourselves.  I once asked a doctor why when I got a severe soar throat did I only have spots on the normal side and not the paralyzed side and this is what he said.." I have no idea, you are the only patient I have ever seen that has paralysis due to an AN surgery".  I think it is normal because I lived it for 21 years, I guess it is not normal to everybody else.

Good luck and keep us posted,  Sue

[saralynn143]

Appointment next Thursday.

[Jill Marie]

Sue,  my lens only cost me $250, still a lot after just paying $1300 for the Soundbite, sounds like you might need a new doctor, one that see's things as you do or can at least understand where you're coming from.  Actually from what I've read the $1000 isn't out of line for an actual scleral lens, my lens is like one but not as big.  Good luck, Jill

Sara, so glad to hear that you are getting a lens.  I had to go to my eye doctor this week because I either had an eye infection or a scratched cornea, hurt so bad that even sunglasses couldn't help me.  Had to go without my lens for a few days, so glad to have it back!  Told my doctor about you, she said Restatis won't fix a dry eye damaged by surgery.  Can't wait to hear how much you enjoy your new lens!  Jill