Author Topic: Scleral lens questions (Iowa)  (Read 4944 times)

kathleen08

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Scleral lens questions (Iowa)
« on: June 27, 2016, 10:00:35 am »
Hello. Long time lurker on the boards, first time poster. I am 6 years post treatment with my AN removed via Translab at University of Iowa. SSD, and mild right side paralysis still persists. Although I have been quite happy with my eye care locally in Des Moines, I haven't gotten very far talking to my doctor here about a scleral lens.

I am able to blink my eye, but it does not blink on its own as often as it should, causing dry eye. I have tried a variety of drops over the years, but the only thing that works is nighttime ointment used through the day and loaded up at night. Of course, this means that vision out of the effected eye is blurry because of the ointment (which can impact focus, peripheral vision, night vision), my eye always has goop around it, and periodically adding drops throughout the day is annoying, add the annoyance of fans, open windows, and breezy days ... if there is room for improvement, I'd like to investigate.

So my questions...first, help me understand the lingo. Is Scleral Lens the generic term for an oversized contact lens? And Prose (Boston Sight), Jupiter (Visionary Optics) and Elara (Visionary Optics) are specific brands of a Scleral Lens?

Has anyone had any luck with lens fitting in Iowa? The nearest BostonSite fitter is Chicago, which would be tough for any follow-ups or troubleshooting. Looking at Scleral Lens Education Society http://www.sclerallens.org/, I find Dr. Christine Sindt listed (at University of Iowa), but not clear to me what function the "Society" serves.

Jill Marie

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Re: Scleral lens questions (Iowa)
« Reply #1 on: July 07, 2016, 12:25:28 am »
Hi Kathleen,

Sorry I haven't replied sooner!  Two days before your post I became a Grandma of twin boys so I've been busy. 

I started on this journey 24 years ago and sadly found that I knew more about my eye issues then my eye doctors.  I have consulted a few eye doctors over the years but until I told my eye doctor that I couldn't take it anymore no one took me seriously.  I told my eye doctor about this board and a poster named Dena King and how she found an eye doctor that helped her get a scleral lens.  What I'm trying to say is, I'm not surprised that you haven't gotten very far talking to your eye doctor about the scleral lens. 

I fully understand your blurry vision, focus issues, eye goop & annoyance with fans, open windows and breezy days.  Yes, there is room for improvement, you can once again enjoy the wind on your face!

Yes, Scleral Lens is the generic term for an oversized contact lens.  If memory serves me correctly the size is over 16.  I had a Jupiter lens but it wasn't a true Scleral lens because it was a 15 (size).  I didn't have to have any sessions where they measured my eye and then ordered a lens for me.  I went to a contact lens specialist that my eye doctor recommended, she tried a couple of lenses on me, found one that fit then sent me on my way to enjoy Christmas like I hadn't in a few years because I didn't have the eye pain I had without the lens.  Actually it took about a week before I could wear the lens all day but I could tell it was going to be a good thing the first day I wore the lens.

A couple of years later I started having problems with the lens, my doctor and I aren't sure what happened, perhaps I became allergic to the lens.  Anyway, last Fall I started using a daily disposable contact lens and it's been great.  It costs me $1.00 a day. 

Everyone is different and you have to keep searching tell you find what works for you.  Please feel free to ask me questions, will respond sooner than I did this time. 

Good Luck, Jill



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

Kerrybr92

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Re: Scleral lens questions (Itheir expertise
« Reply #2 on: July 11, 2016, 12:10:04 pm »
Hi Kathleen,

Sorry you are in this position but I do think that trying to get fitted for either Boston foundation for sight Prose lens ( their scleral lens)or a scleral lens may be a great option for you.

I am a patient of the Boston foundation for sight in Needham MA.  That is their original location. They are over two hours from me but I have never regretted the distance.  They do a three or four day fitting after your initial consultation.  They make the lens exactly for you. This is not off the shelf.  They do many measurements and then they create it in their lab.  You then try it out and the Doctor and you evaluate the fit. If it is not perfect they make another.  That is why they ask that you plan that spend some time with them.  After it is perfect you take it home and try it out. Any problems and you can go back to have a new one made.  This is what they do everyday and their expertise really shows.  I see them once a year now for a check up and I see a cornea specialist here in town once a year.  I have had the lens almost 5 years.  The same lens.

I do have to say that since I have a platinum eyelid weight it did make the process a little bit more challenging.  But in the end I received a lens that I absolutely LOVE. 

I understand that Chicago is pretty far away but for the relief I have gotten I would travel even farther.  There is not much follow up necessary once you have the perfect lens. 

Please let me know of you have any questions.
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

michelej

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Re: Scleral lens questions (Iowa)
« Reply #3 on: August 19, 2016, 08:37:33 pm »
Hello,
I do feel for you!!! I also had my translab procedure done at U of Iowa by Dr. Gantz. My eye now on the AN side has absolutely no tears. I fought with ointment which of course when you use everything is blurry. I tried all kinds of drops,.... they are so expensive. It has been two years now since I had my surgery. After several months of my eye feeling like there was sandpaper under my lid and it hurt all the time I went to my local eye doc and he put in what is called a punctal plug. What this is is a plug that is inserted into the tear duct. You can have one on the top lid and the bottom lid. I had great success with the one on the top, but the one on the bottom wouldn't stay in like it should ( I must be a freak or something haha). However this made a great difference in my eye. I rarely use eye drops anymore. It keeps your own tears/moisture in your eye by not letting it drain out the tear ducts. I have the permanent one (it can be removed if you need it to be) on the top and he puts the dissolvable ones in the bottom. They last about 90 days and then can be replaced. It is done in the office with just a drop of numbing solution and you feel absolutely nothing and it takes like a minute to do. It has been remarkable for me. I also can go have a corneal specialist in Des Moines ( I forgot his name) actually cauterize the bottom one and it is permanent. I don't think I will ever have tears anyway after my surgery so after this one dissolves I may do that. Don't know if this will help you but it was a very easy fix for me and hope to share it with someone who it might help. Good luck.

saralynn143

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Re: Scleral lens questions (Iowa)
« Reply #4 on: August 30, 2016, 09:56:04 pm »
Hey Kathleen. I wrote some weblog posts about my scleral experience. The first one is at http://www.sarahartman.com/the-eyes-have-it/ - at the bottom there is a list of scleral brands. If you follow the links many of their websites have lists of practitioners. Good luck.
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