Author Topic: Early Christmas present thanks to this ANA board !  (Read 6115 times)

Jill Marie

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Early Christmas present thanks to this ANA board !
« on: December 22, 2012, 03:02:14 am »
I got an early Christmas present thanks to this ANA board and most importantly thanks to Dena King.  Three months ago Dena posted about a Schelra lens she was using and how it relieved the pain of her dry eye.  Thanks to her post I went to my eye doctor for a new prescription for my glasses and hopefully a referral to a doctor in the area that could help me get a lens that would reduce the pain I had and cut down on the costs of the eye ointment I was using. 

I got the referral and after a couple of weeks of missed faxes and phone calls I wrote a letter to the contact lens specialist.  She personally called me the next day so I could make an appointment to see her.  I saw the doctor a week and a half ago, she gave me a lens to try out for a week.  I put the lens in when I got home that afternoon, left it in for 2 hours and increased the time an hour or so for a few days.  When I went to work on Monday morning I put it in and kept it in until 10  that night.  As Dena wrote in her post it takes some time to learn how to put in the lens and remove it, but it's worth it. 

When I went to the eye doctor a week later she was almost as excited as I was about the progress I had made.  It really made her happy to be able to help me get relieve from the pain and the pocket book.  When I saw her the previous week my eye was bright red, when I saw her this week it was hardly red at all.  The first time she examine me I couldn't see the BIG E on the eye chart because of the damage to my eye and the ointment I use.  This time I could not only see the E, I could read some of the letters on the 3rd line of the chart.  I have gone from using 3 tubes of ointment at work to using almost 1 tube.  My eye has been so bad the last year that I was spending over $4000 in a year on ointment.  Before I started using the lens my eye would hurt so much by Thursday  that I could barely work and by Friday evening I couldn't look at a computer screen, let alone post a message.  I would use the weekend to rest and hopefully get my eye in good enough shape to work another week. 

I have no idea whether my Insurance will cover the lens or not and I don't care!  The difference I have experienced in my life just this past week is well worth the cost.  I'm still using a loaner lens as the doctor isn't sure which one she wants me to use yet.  The cost of the lens is around $250, won't no how long it will last until I use it a while.  Once again, I'm not concerned as I would spent about that much for ointment in 2 weeks. 

For now I'm just enjoying the many, many benefits in my life that this lens has given me.  It will take a bit of time to fully appreciate the changes, I think I'm still in shock as it's been 20 years since my surgery and I never thought I would see the day when I didn't have to put ointment in my eye every 15 minutes. 

Tomorrow my husband and I along with our dogs will go out and cut down a Christmas tree, can't wait to do it as I can focus all my attention on looking for the tree instead of struggling to walk in unfamiliar territory because of my poor vision.  I can't wait for Spring so I can ride my bike without stopping all the time to put ointment in my eye. 

I'm sorry about the long post but I really wanted to share my good news with everyone and hope that those having eye issues read this and now know that things can and will get better.  If anyone has questions about the lens please feel free to ask and I will answer the best that I can.  Jill Marie  :) :D 8)


« Last Edit: December 26, 2012, 09:45:39 pm by Jill Marie »
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

saralynn143

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Re: Early Christmas present thanks to this ANA board !
« Reply #1 on: December 22, 2012, 07:25:15 am »
I'm so happy for you, Jill Marie! I too need to discuss this with my ophthalmologist. What brand is your lens?

Merry Christmas,
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Jill Marie

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Re: Early Christmas present thanks to this ANA board !
« Reply #2 on: December 26, 2012, 10:00:45 pm »
Thanks Sara, I don't know what brand the lens is but I will find out for you.  As I mentioned, the doctor gave me a loaner lens to see how it would work for me.  She liked the results and wants me to try it for a couple more weeks and then check me again.  Then she will decide which of the two lenses she wants me to have will work the best for me.  To be honest, things were so much better that I didn't even think about asking for the details, I was to busy enjoying the changes in my life.  She says this is just the start of the journey as there are others lenses to try if need be and different drops etc. to look into.  She wants me to be able to get rid of the ointment during the day, I'll be happy if things stay the way they are now but of course would like to only use drops as well. 

Will let you know what I find out!  Jill ;D

Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

leapyrtwins

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Re: Early Christmas present thanks to this ANA board !
« Reply #3 on: December 27, 2012, 07:50:07 pm »
Great news, Jill Marie  ;D

SO happy for you!!!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

millie

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Re: Early Christmas present thanks to this ANA board !
« Reply #4 on: December 28, 2012, 06:21:55 pm »
I am very heartened by your story, Jill Marie-you are a brave, wonderful soul. And hallelujah for that doctor and that lens! 

Kerry

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Re: Early Christmas present thanks to this ANA board !
« Reply #5 on: January 01, 2013, 05:57:06 pm »
Hi Jill,

I have been working with Boston Foundation for Sight for my scleral lens.  I have been going there since September and I am on my 19th customized lens.  Right now the issue I have is that the lens fogs up some, due to a small amount of debris coming in, so I need to add some celluvisc drops to try to seal off the edges.  The other strange thing is that it leaks sometimes and with my plugs in the liquid pools and causes more blurriness.  I of course use a tissue to "soak" it up but the lack of blinking causes fuzziness.  I am not sure why some nights I take it off and feel the rush of liquid while other nights there is none left in it.

I have had issues with my eyelid weight putting pressure on the lens.  I have also had lens that are too snug and cause redness.  We are heading in the right direction but I just am not there yet.

They are very dedicated but the process is long.  I am taking a small break and then I will start again in a few months.  My work schedule will not permit the several night trips I need to make.

I hope to be able to make this work and certainly would recommend people trying it.
Kerry

Jill Marie

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Re: Early Christmas present thanks to this ANA board !
« Reply #6 on: January 04, 2013, 09:23:30 pm »
Thanks Jan & Millie,

It's been great so far and hope that things continue to get better.  The lens came just in time as they laid off some people at work so tomorrow I will be doing two peoples job, one I couldn't do a month ago as the pain was to much, couldn't look outside even with a cloud cover.  I will be working at the window, looking  at people and vehicles and entering info. into the computer.  Just one benefit of the new lens!

Kerry, sorry to hear it's taking so long to get the lens fitted for you, hopefully they get it next time.  My doctor told me she would send me to Boston Foundation if she couldn't help me.  For now I'm using a bit of ointment and of course use it at night.  I'm going to try the celluvisc soon as the doctor is hoping that eventually drops will be all I need.  My facial tone under my eye isn't very good so the drops just roll right out, hoping there is a drop that works for me.  My eye blinks so I don't have some of your issues.  I do have a plug and was wondering if perhaps I would need to have it removed, have you thought about doing that?  I can see where having the lens to snug would cause problems, need some space to hold the moisture in and let the eye breath.  We are all different so it takes a while to find what will work for each of us.  Let me know how it's going and of course want to know when they get a lens that fits you.  Take care, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Jill Marie

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Re: Early Christmas present thanks to this ANA board !
« Reply #7 on: January 10, 2013, 12:20:54 am »
Hi Sara

Saw my contact lens specialist today and she ordered my permanent lens for me.  She told me that the lens was originally made by one company but as businesses do, several other companies started making similar lenses under different names.  Its a gas permeable lens, the company that makes mine is called Valley Contax, the lens itself is called Valley 15.  Different companies sell there lenses to different parts of the country, she thought perhaps Visionary Optics might be in your area.  It was originally designed by Dr. Robert Breece of the Jupiter Co., he is the one that trained her how and when to use the lens, he has since passed away. 

She has been working with another doctor lately to show him the benefits of the lens.  He asked why the lens was not flat across my eye, she told him it was to make sure the lens didn't stick to it.  I have seen a couple of eye doctors the last fehw years and none of them would try a contact lens on me for fear of it sticking to my eye because it is so dry.  I was to the point where it didn't matter, was willing to try anything.  The lens is GREAT, there are so many positive things to having it!  Most importantly my day to day outlook has improved, it's hard to be in a good mood when you are in pain. 

I think the eye doctor wants to experiment with me as she hasn't seen anyone with the issues I have and wants to learn as much from me as she can to not only help me but to help others as well.  Will let you know if I learn about anything else that might help you.  Please let me know what you find out from your doctor.  Take Care, Jill :)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

saralynn143

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Re: Early Christmas present thanks to this ANA board !
« Reply #8 on: April 17, 2013, 06:40:47 pm »
Jill Marie,

I have an appointment tomorrow morning. My regular ophthalmologist does not fit scleral lenses, but I got a referral from Valley Contax for an optometrist in a nearby city. I e-mailed him last night and he replied that he treats many patients with similar issues.

Fingers crossed.

Thanks,
Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Jill Marie

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Re: Early Christmas present thanks to this ANA board !
« Reply #9 on: April 17, 2013, 09:17:23 pm »
Hi Sara,  I have my fingers crossed as well but I don't think it's needed, from what I have seen so far the lens helps everyone!  Looking forward to hearing from you tomorrow!   ;)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

saralynn143

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Re: Early Christmas present thanks to this ANA board !
« Reply #10 on: April 18, 2013, 12:27:32 pm »
Just posted an overview of my appointment at http://www.anausa.org/smf/index.php?topic=18669.0
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13