Surgery fixed my eye problems

by Nikki Young, Clarksburg, Maryland

Like many others with FSHD, I have suffered from dry eyes. Weakness in the muscles around my eyes prevented me from closing my eyelids fully, even in my sleep, so my eyes would become dry, itch, burn, and tear up. It got so bad at times that people would ask me if I was crying.

I consulted Nicholas R. Mahoney, MD, at the Wilmer Eye Institute in Baltimore, Maryland, an ophthalmologist who is familiar with FSHD. I told Dr. Mahoney that I had tried lubricants and gels, to no avail. I had also had punctum plugs put into my tear ducts to keep tears from draining from my eye, but I had no luck with those, either.

Dr. Mahoney and I talked at length about eye surgery and the various risks involved. The muscle loss in my eyelids affected my ability to keep my eyes opened properly. With the surgery, there was a risk that even more muscle could be lost. The procedure would be a simple one, though. A small incision in my upper eyelid would allow for a tiny prosthetic to be implanted into the lid, and the lower eyelid muscles would be tightened surgically. The expected result was that the eyelids would fit closely together.

I decided to proceed and scheduled separate surgeries for each eye so that I would still have the use of one eye while the other recovered.

On the day of the surgery, the kind staff at the Wilmer Eye Institute prepared me for the operation and administered local anesthesia to the surgical field. I would be completely conscious and sitting straight up through the whole procedure.

It all took less than two hours. I left with very few stitches, which would later fall out on their own, and an eye patch and bandages to wear for a few days. I had bruising, but other than that everything was perfect, I was able to see clearly from my left eye, and the irritation and tearing were gone. About six weeks later, the same procedure was performed on my right eye. Two weeks after that, my right eye was healed, and I was symptom-free and able to see better.

While the procedure had its risks, I’ve experienced quite the improvement to my quality of life. I no longer have to deal with constant pain and tears, and my vision has improved so that I no longer need glasses. The only ones I wear now are a pair of designer sunglasses to enhance my good looks!

6 responses to “Surgery fixed my eye problems”

  1. Belinda Miller says:

    Do you know of anyone who has had similar surgery? And have you had any reconstructive surgery on your mouth?

  2. Steve says:

    Any recommendations for ophthalmologists in South Florida who is familiar with FSHD?

    • jkinoshita says:

      We don’t have a specific recommendation. Any good ophthalmologist should be able to look up Coat’s disease and FSHD and be able to screen you for retinal abnormalities.

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