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.