Author Topic: Very, Very, Very Happy that I have the Scleral Lens!  (Read 28958 times)

Heresrose

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #30 on: May 05, 2014, 08:04:26 pm »
Thank you all for bringing this information to light. I had my surgery in 2011 and reading about it for the first time. Today I spoke with my eye doctor to inquire about it and he said he'd look into it and get back to me.

My eye does not blink all the way but I can close my eye by winking: I have severe synkinesis.  My eye does close at night but during the day it is very dry and no amount eye drops help. Hoping this can work for me.

Rose
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

ginsue

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #31 on: May 06, 2014, 02:03:59 pm »
Rose I am glad you found this.  I too heard about it here too.  Life would not be the same without my lens.  I've worn it since 19/2013.  Please seek out a complex contact specialist in your area.  I just wouldn't trust anybody since the fit is what makes it successful.  My doctor is a specialist in this field and once he measured me it fit like a glove, no tweaking what so ever.  Learn what you can before you go, you may know more that the doctor on the subject so be informed. Saralynn has done a lot of research so take advantage of her work.
Good Luck, Sue
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

Cheryl C

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #32 on: May 27, 2014, 09:16:07 am »
Sara Lynn,
Had my appointment with the eye surgeon Thursday and he agreed to reverse the tarsorrhaphy while leaving the weight in.  I immediately felt "freed" after the reversal and very pleased with the result.  He was immediately impressed with the scleral lens and wanted all the info as he had several other patients in mind that could benefit from it.  Thanks again for all your wisdom and suggestions.   Reading the forum sure connects me where I don't feel so alone in all the issues I find myself dealing with.  Have a great day!

Cheryl
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

saralynn143

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #33 on: May 27, 2014, 01:52:02 pm »
That is fabulous news, Cheryl! I would like for everyone who can possibly be helped by a scleral lens to get one.
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

Heresrose

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #34 on: June 06, 2014, 06:41:31 pm »
I need a recommendation for a doctor in Los Angeles who fits scleral lens.

Thanks,

Rose
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

lorigasper

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #35 on: June 07, 2014, 12:15:29 pm »
Hello, all -

Thank you so much for the insight you've shared here.  I had my AN removed a year ago, with a tarsorrhaphy two weeks later.  I'm hoping to find a way to use my eye again over the next weeks.  The scleral lenses sound amazing!  You may be able to give me some thoughts regarding the following questions.....
1.  About opening my eye, what length of recuperation should I expect?
2.  Since my eye tears very little, I'm assuming a scleral lens will be indicated to keep it moist (especially if my blink is inefficient).  How long will I need to wait to schedule a fitting?  How long does it usually take to get the lens?  Will they give me a temporary lens to protect my eye while I'm waiting?
3.  Have you been successful with a weight AND a lens?  Might it be wiser to use Blinkeze until I see how my eye responds to the lens?  Do you think it would be best to put in the weight at the beginning of the process instead? 
4.  I see my doc in about a week.  Is there anything else you think I should consider/read before I see him?

Thanks in advance for any ideas you can share!
Lori
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

saralynn143

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #36 on: June 08, 2014, 09:20:51 pm »
Hi Lori. I'll answer the questions I am able to.
1. I did not have a tarsorrhaphy so I do not know about recovery.
2. Scleral lenses are great for keeping the eye moist. I imagine your eye doctor will let you know how long to wait. I would think just as soon as you have healed from the stitches being removed, since there is some manipulation of the eyelids during a scleral fitting. It took about a week for my lens to come in. I did not have a temporary lens but that may vary by doctor.
3. I have both an implanted eyelid weight and a scleral and get along great. I started out with a Blinkeze (long before my scleral) but was not very successful with it and in my opinion it would be difficult to work with. From my experience, I would recommend doing the eyelid implant right away, then get the scleral as soon as your surgeon gives you the go-ahead. I don't think you would be able to wear a scleral during recovery from the eyelid surgery and it's hard to go without once you are used to it.
4. I think you have a great start on your information gathering. I'm sure others will chime in soon as well.

Best wishes!
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

Cheryl C

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #37 on: June 09, 2014, 10:30:26 am »
Hi, Lori!
Adding my 2-cents':
I just got a partial tarsorrhaphy reversal and the recovery time was almost nil. I was amazed that it was so easy and quick.  I used antibiotic drops for 7 days following and gently pulled the lid apart a couple of times a day for the next three days.  I was able to put the scleral lens in the next day.  I do have little to no feeling in my eye, so I don't know if others experienced tenderness after the reversal or not.  I have no tearing, and I have noticed since the reversal that I need to put drops and/or the lens in almost immediately after waking, where before I could wait an hour or so.

Like Saralynn, it took about a week for my lens to come in and I wasn't provided a temporary.

I had also tried a Blinkeze first, but not really successful; I later had the tarsorrhaphy and implanted weight. (Still have the weight and no problems with it and the lens.)  Maybe you could try the Blinkeze, since you have some tearing, but I would guess you would need to be watched closely to see that your cornea is not being damaged. 

Do you have to use any lubricating drops/ointment and do you cover your eye at night?  If you don't have to now because of your tarsorrhaphy, that is something you may have to implement if you get it reversed.

Good luck with everything! 
Cheryl
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

lorigasper

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #38 on: June 09, 2014, 04:34:56 pm »
Cheryl and Sara -

Thanks so much for your prompt reply.  I so appreciate your information and encouragement.  I found out today that my current optometrist handles scleral lenses, so I won't likely have to add a new doctor to my list.  :)  His information about timing aligns with yours. 

After a year without using my eye, I'm excited to think I may get to use it again soon.  Thanks again!  I'll keep you posted.....

Lori
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

ginsue

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #39 on: June 11, 2014, 10:57:14 pm »
I have a weight and wear a scleral lens, no problem. I have worn my lens for about 8 months. I had my tarsorrhaphy removed after 7 years when my weight was put in and had some facial reconstruction to my face.  Just FYI my eyelashes grew back in, yes I can still be a little vain can't I ?  Rose if you ever need plastic surgery to make symmetry go see my surgeon Dean Manus  www.drmanus.com  he is now in L.A. He is a very credited doctor, check his web site out.  He did my surgery in a suburb of Chicago and got my insurance to pay.  I wish he was still around here because I would have him do my eyes because of aging.  I won't let anybody else touch me.

Sue
1991 tumor size- tennis ball (6.7 cm - Wikipedia)
facial paralysis, deaf, balance issues
1997gold weight and facial reconstruction
May 2013 SoundBite
Oct. 2013 Scleral lens

Jill Marie

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #40 on: June 11, 2014, 11:41:35 pm »
Hi Lori,

I didn't have a tarsorrhaphy or eyelid weight so I don't have any advice about them.  My lens isn't an actual scleral lens so I didn't have to go through all the measuring and waiting for a lens.  I went home with my gas permeable lens the same day I saw the eye doctor.  My eye doctor looked at my eye, did a quick measurement and said she thought a size 15 lens would work for me, it was hard to tell for me as my eye was so painful nothing felt ok.  She tried the 16 lens and I noticed it was more irritating.  We went back to the 15 and I took it home, wore it for 2 hours then increased the time I wore it by 2 hours tell I wore it from the time I got up tell I went to bed.  The actual scleral lens is bigger than my lens.  My eye doctor had never sized a lens before then let the patient leave with the lens.  She saw how bad my eye was and told me she didn't want me to wait another minute to feel the relief of the lens.  Over the next couple of months we tried different lenses but I always came back to the first lens she gave me.  I've had the lens since December of 2012, best Christmas present ever.  I had my surgery in 92 so I've been doing this for a long time, therefore my situation is different than yours. 

Please check with you eye doctor to see if the lens can be covered by your Insurance.  I really want to see the Insurance companies realize this is medically necessary so they will pay for the lenses.  I believe more people would try the lens if they knew it was covered by their insurance.  As I mentioned before I got my lens in Dec of 2012 and just paid for it today.  We got the Insurance company to agree that it was medically necessary but they put it on my deductible because the optical clinic was out of network as all optical clinics are because they don't cover contact lenses.  The optical clinic was working on re-billing the claim through my doctors office but the person that was suppose to be doing it quit and they got a new computer system so my claim fell threw the cracks.  They called me today and said they would only charge me $150 for the lens and would bill future lenses through the eye clinic I go to that is in my Insurance companies network.  I plan on getting a back up lens so I have one if this one breaks or is lost, will find out then if the Insurance company will cover it. 

Hope all goes well with your quest for the lens, feel free to ask more questions, we love to help!  Jill Marie
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

lorigasper

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #41 on: June 16, 2014, 03:35:53 pm »
Thank you all, again, for this great information!

My tarsorrhaphy will be opened on 7/10!!  Woo hoo!  I'll talk with my eye doctor about a lens this afternoon so we can get going on it as soon as I'm healed enough from the weight surgery. 

I appreciate all your encouragement over these past few weeks.  What a learning curve it has been!  I'll keep you posted.....
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

lorigasper

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #42 on: July 11, 2014, 06:01:37 pm »
Hi all -
I thought I'd let you know that I'm seeing the world with TWO eyes this week!  I'll pick up my lens on Monday and use it as soon as my swelling is down.  Until then, OTC moisture is working well enough.

Thanks again for the encouragement to open my eye and try this lens.  I'm thrilled personally, of course, but I'm also happy that my doctors will have another option to give other patients. You have been a great resource!
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

lorigasper

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #43 on: July 24, 2014, 03:34:47 pm »
Hello, everyone!

I'm happy to report that I'm loving my lens and loving having my peripheral vision back!  This is a "first" for my doctors in treating AN patients and I know they'll be thrilled when I check in with them next week.  Thank you, again, for your words of wisdom and your willingness to share.  This had made a huge difference for me!  :)
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

Jill Marie

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Re: Very, Very, Very Happy that I have the Scleral Lens!
« Reply #44 on: July 25, 2014, 12:22:13 am »
Hi Lori,

Really glad to hear that you're loving your lens, it made a huge difference in my life as well!  Isn't it great to be a part of helping your doctors help others and you too of course.  The more we know, the more we tell other doctors and others on this board the more we help so many other people, not just AN members but others like us.  Now you have joined the club of people helping people! 

Thanks so much for keeping us posted on how you are doing, please continue to do so.  I know there are others on this board that could use this lens so the more we post the better the odds are that they read a post and will find out as you did that the lens can make a huge difference in their life!  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.

 


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