in our hoUSe.....!

in our hoUSe.....!

Monday, January 28, 2013

RP and Cataract Surgery

People with Usher Syndrome face progressive hearing and vision loss.  The vision loss is due to Retinitis Pigmentosa (RP) that causes increasing loss of peripheral vision, while the central vision - for the most part - is unaffected by the RP.  That doesn't mean that the central vision can not be affected by other visual acuity issues.  Near- and far-sightedness can usually be corrected (or somewhat corrected) with glasses or contact lenses.  But cataracts are more common with RP at a younger age than with normal-sighted folks (like me!)

There is controversy and lack of consensus as to whether or not cataract surgery is advisable at all for patients with RP.  In fact, our daughter's retinal specialists have STRONGLY advised against it!  However, the retinal specialists she's seen, while long well-known in their field of research, are just that.  They are not clinicians; they don't deal with the reality of one's life or the functionality of vision based on the personal, professional, social/emotional life of their patients.  So....after consulting with many, by phone, email, in person, and doing extensive online research, she went to a highly recommended cataract surgeon who has experience with such surgery on RP patients and has, in fact, done a number of them against the recommendation of our daughter's retinal specialists - with success!

Roberta made this decision herself, deciding to go forward with the surgery and take the risks associated with it to have a chance at extending her work life, which had become severely impacted quickly over the last 8 months, due to loss of acuity, extreme sensitivity to lights and glare, and distorted images from the affected eye.  I think when a hearing-impaired person who relies heavily on lip-reading can no longer do that across a table, it's natural to want to do anything to improve that.  Imagine the frustration of struggling to hear AND see when just months before, you had a good handle on the disabilities imposed by this condition.  Usher Syndrome is an inherited condition, caused by both parents carrying a recessive gene for it.  Our daughters both have this syndrome, Type IIC, with absolutely no known history of it on both sides of our families.

So....the surgery took place last Wednesday, a simple procedure that had us in and out of the surgery center in very little time.  She was alert (no conscious sedation) and pain-free when we left there, and she was immediately thrilled with the results.  A follow-up appointment the next day revealed that her vision was 20/30 unaided in that eye as opposed to the 20/200 pre-surgery with her contact lenses.  WOW!  WOW!  WOW!

We left her yesterday to return home, feeling comfortable that she was OK to be on her own and to return to work today.  So far, so good.  Stay tuned, however, for the follow-up to this story, for there is an issue today for which she is going to see the surgeon.  Not sure what's up, but if you're reading this, please continue to pray for her.  I'll report once I know more, or you can follow along on FB.


RobynFrance said...

Louise, Roberta is in my heart at this moment and I trust she will heal well, hopefully with the help of her surgeon and God guiding all involved. Hope you and Tony are doing well with this pressure--will look forward to hearing about her healing.

Louise Giordano said...

Thank you, Robyn! So many people have her in their hearts. You are all so special to us!

Andrea said...

As a parent of two young children (ages 5 and 2) who were diagnosed with Usher Type II c this summer, I really appreciate your candor and grace regarding this issue. Anything I can learn about parenting kiddos with Usher's is greatly appreciated as we begin our navigation of this unknown territory. Speedy recovery to Roberta. So glad to hear this has helped!! Hoping for medical breakthroughs down the road.

Louise Giordano said...

Andrea (my other daughter is Andrea too!), glad you found us. I'm amazed that they could diagnose your little ones at such a young age and determine that it is indeed Type IIc. When my girls were diagnosed as hearing impaired at age 3 and 13 months respectively, there was no way to know what was yet to come. Roberta's Ush IIc came at age 18 and Andrea's around 40. They are 41 and 44 now.

I too wish I had had some resources to help us at the time, but we muddled through somehow, and they became functioning, employed, oral adults. I'm so proud of both of them.

Not sure how you found me, but please join Andrea and Roberta's Facebook group called "Usher Me In."
The girls post almost daily.

When I started this blog, it was very therapeutic for me. Feel free to follow it as I expect I'll be posting more frequently now. Read it from the beginning to learn more, but perhaps you already have. Thank you so much for your interest. And email me anytime if I can be of further assistance: scarfitup [at]

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