Advances in stem cell therapy for retinas

My hopes are beginning to come true! There is already progress being made in healing retinal damage using stem cells. I heard this story yesterday on NPR’s All Things Considered: “Study Finds Human Stem Cells May Help To Treat Patients.” The story is everywhere. Here are links to a New York Times article, “Study Backs Use of Stem Cells in Retinas,” and one on WebMD, “Stem Cell Therapy Shows Long-Term Effectiveness.” Hurray! I know possible help for me is still years down the road, but I am still celebrating this news.

Two years later

September 21, 2014, marked two years of recovery from my accident. Looking back at my last major update, about a year ago, I see that, although the healing process continues, not a lot is changing on the surface. My appearance has improved a little more since my February surgery. The left eye now looks normal enough for people to feel comfortable asking why it’s so red—which the rim of the lower lid always is, to varying degrees. I don’t know if that will ever quite go away. My eye is still easily irritated, which can increase the redness. And it still waters a lot, as the cornea continues to dry out and overproduce tears. The eye still hurts at random moments, especially later in the day, sometimes sharply, sometimes deeply. The nerves in my cheek have almost fully regenerated. My eye crinkles almost normally when I smile.

The central vision in my left eye is still gone, though I hold out hope for future medical developments that may reverse the damage (come on, stem cells!). In the meantime, I use my peripheral vision as much as I can to keep my optic nerve active: I sometimes walk around with my right eye shut just for the practice. I still forget sometimes why I can’t see clearly, especially when I first wake up. I have recently been experiencing a fresh bout of grief about the impairment of my sight. I still often bump into things on my left and lose my balance easily. I continue to have trouble concentrating and thinking clearly. I am still trying to figure out how to see as well as I can while I work; my vision varies a lot, and magnifiers and lights only help so far.

I have not entirely recovered my turning skills. I got tendonitis in my right elbow (my dominant arm) in the spring and wasn’t able to work for several months. Add this to the many gaps in work caused by my surgeries and I guess my rustiness is understandable, if frustrating. It has been hard this time to get back into a creative flow, but I am working to hold a steady course through the latest challenges by remembering every day what I haven’t lost (family and friends, my sense of humor, my curiosity, a damn good life) and what I’ve gained (more love, gratitude, a greater sense of connectedness to everything).

My tale of survival

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The June issue of American Woodturner featured “Safety Matters: From the Eye of a Survivor,” an article I wrote describing my accident and discussing some of what I learned afterward about protecting myself. Please feel free to share it with any woodturners you know; I am hoping that it will save others from injury. It was accompanied by this exercise for determining your own risk at the lathe, along with a table comparing risk values.

The saga continues

It is looking like another surgery will be in order. My lower eyelid, which was reconstructed with cartilage and skin from my ear, is not doing what it is supposed to. It is pulling away from my eye instead of hugging it. As a result, the inner lid, the tender tissue that should rest against my eye, is being exposed and, because of the exposure, is becoming like skin. The pulling away also means that my eyelids are once again not closing fully; I have to squeeze my eye tight to fully close the lids.

The challenge of surgery will be to tighten the lower lid without interfering with the drainage tube from my eye.

I have been using an ointment for the last few weeks to help remedy the condition. Since the ointment blurs my vision, I have not been wearing my contact, so I am back to being pretty much half blind. I am still turning though. I will find out more in a couple of weeks about the prognosis and the possibilities.

Thirteen months later

Some 13 months after my accident, I am doing well. I look almost normal, if you don’t look too closely. My upper eyelid works and has an epicanthic fold to match my right eye. My lower lid doesn’t move, and the rim is usually quite red, but it does cover the lower part of my eye, and the upper lid meets it when I blink. The nerves in my face have come back a lot and continue to revive, slowly. My left cheek still tends to be somewhat swollen. I either overproduce tears or they do not drain from my eye properly, so I have to wipe my eye frequently.

As for my vision, I’m still largely impaired. My central vision is still gone. My peripheral vision is much sharper, as I now wear a contact lens (in lieu of a lens implant) in combination with glasses. I know that I am seeing something with my left eye, that my brain is incorporating some input from it, because I can now tell when the contact lens is out (I have a problem with it sometimes falling out): I feel more blind without it and less blind with it. I would say that, functionally speaking, the correction may add from 5% to as much as 25% to my overall vision, depending on the level of light. I still run into things a lot on my left side. Without central vision, I am not sensitive to light, but without a functioning iris, I need to protect against overexposing my retina, so I am careful to wear sunglasses outside. (You would think that, living in Arizona, I would already have made that a habit, but I never felt the need before.) I have been able to stop all medication for my eye. There had been concern that I would develop glaucoma, but I seem to be maintaining normal pressure in my eye without medication.

Emotionally, I’m good. I experienced a period of grief this summer, after I realized that the doctors have done about as much as they can for me. Until then, I had been so focused on recovering that I hadn’t stopped to consider what I had lost. I had to stop and retreat for a spell. Having grieved, I am still grateful. I have recovered much better than any of my doctors ever expected, and I learned that I have far more support in my life than I ever realized. I say it again: I am a lucky, lucky woman.

And my creative juices are flowing again. When I first resumed turning back in January, it felt like I had never stopped, but around March I mostly quit turning again, because of pain in my eye. When I resumed again in September, this time I felt like I had lost my skill. I felt clumsy and blind and incompetent. I’m getting back up to speed now. Most important, the ideas and the love of the work are flowing again; for a while, I was so focused on feeling ineffective that I let the flow nearly stop. I knew the flow was back when I started dreaming about making art again.

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Wow!

I’m going to look almost normal! (At least, almost as normal as I ever looked.)

The brilliant Dr. Polonski operated on my upper eyelid yesterday, and once the swelling goes down and the stitches dissolve, I’m going to look almost like my old self! My eye is finally open, so my field of vision is a good 50% bigger. I can’t tell yet how well I’ll be able to see, because I have ointment in my eye that blurs everything, but the larger field of vision is already a marked improvement. On the other hand, my wide-open pupil is almost fully exposed, and I’m starting to notice some sensitivity to light. (Our house is pretty dark, so I haven’t had much exposure yet.) The next steps will be to try a corrective lens and, later, another surgery to tighten my lower lid.

I was awake during the surgery so that Dr. Polonski could tell what effect he was having. He had me sit up a few times (gravity makes the face look different when one is lying down) till he got it right. And, boy, did he! I’m so happy.

He had his nurse take this photo with his iPhone during the surgery so that I could see what I will look like. This is before he put in stitches, and, of course, before the swelling set in. He himself was so excited about the results that, when I headed to recovery, he went to the waiting room to show the photo to Karen and my sister Amaranth and my friends Pat and Darcey (I travel with an entourage these days—at least when I go for surgery).

Here I am during my last surgery.

Here I am during my last surgery.


The surgery was painful, because he couldn’t numb the area where he was cutting away scar tissue, but I came out of the surgery wide awake and ready to go home. I’ll take the pain any day over the nausea and long recovery associated with general anesthesia.

Those of you who have seen me in person will know what a significant improvement this is in my appearance since the accident. I am so grateful for Dr. Polonski’s skills and, more, for his continued dedication to seeing that I recover as fully as possible. He remarked again yesterday how shocked he was when he first saw me, by the severity of the initial damage. No one meeting me now could guess how bad it was. Hallelujah!

And thank you again to all of you who have been pulling for me through this long journey. It’s not over yet, but you have made every step a good deal more bearable.

Still in the race

Recovering from my last surgery has taken longer than I expected. For such a simple surgery, it sure presented challenges. My eye hurt for weeks, enough to prevent me from working. And it has meant a setback in my vision.

First, because of the pain and constant irritation caused by the stitches, my eye didn’t want to open as much as it had. Just in the last two days, that has finally improved, and my eye is mostly as open as it can be—which, mind you, is only about 5 mm, compared with about 12 mm for my right eye. (If I raise my eyebrow, I can get another millimeter. It sounds miniscule, but it is another 20%.)

Second, what I can see is blurrier than it was with the oil in my eye. I haven’t gotten a new prescription yet, so I don’t know how correctable my vision will be. It turns out that my eye is even more complicated than Dr. Levine thought. It seems to be less nearsighted than he expected, and the astigmatism counters the nearsightedness in such a way that my prescription is technically 0 diopters—perfect! But not. Dr. Levine raised the question of whether the tightness of my upper eyelid might be contributing to some of the astimatism by distorting the cornea. I sense that I may not be getting a new prescription until after I have more surgery on my eyelids.

Who knows what my eye would be doing if I had gotten the lens implant? I do think I made the right decision not getting it.

One other factor affecting my vision right now is tearing. My cornea is a little dry because my new lower eyelid isn’t tight against my eye and doesn’t actually move. Ironically, dryness causes the eye to overproduce tears, which then collect in the slight reservoir created by my lower lid and become viscous, further blurring my vision. To try to remedy this, I use lubricant drops or ointment and clean my eye out a few times a day.

I have been frustrated since the surgery, feeling like my recovery has stalled. But I keep reminding myself that this setback is temporary, and sometimes progress may be hard to recognize as such. For example, now, with my eye open, I have enough vision to challenge my brain, which paradoxically makes me feel like my vision is worse. It will get better as my brain learns and when I get the right corrective lens. I am the tortoise in this race, and slow and steady will win it.

A not-so-slick oil change

Yesterday’s surgery to remove the silicone oil from my eye was . . . interesting. The plan was to combine a nerve block with MAC anesthesia, so I would be awake but not care—while not experiencing any pain. Turns out the anesthesiologist couldn’t administer the nerve block because of scar tissue under my eyelid, so they used a numbing eyedrop—but not enough of it, as it turned out. So, though I started out asleep, I woke up midway and I could feel the surgery—the clamping, cutting, and stitching of my eyeball—and it hurt. A lot. When I finally tried to speak up, I was told not to talk—it seems I chose a particularly critical moment in the surgery to open my mouth—so I didn’t. I just observed. After the surgery, my eye continued to hurt. Fortunately, a pain killer finally did its job.

In her defense, Dr. Harris was appalled and apologetic when I told her about this at my post-op appointment this morning. I didn’t move or moan or twitch even, so she had no idea what I was experiencing.

The outcome appears to be good. The pain was actually preferable to my previous reactions to general anesthesia. The salt-balanced fluid that is now in my eye will be replaced by my eye with its own fluid over the next few days. There is also a gas bubble in my eye, which will gradually be absorbed. Freakishly, it is visible floating in my wide-open pupil: for a few days, one will be able to tell if I am level just by checking my eye! I don’t know yet how my vision will be. The fluid is murky from the surgery, while the bubble is bright. I just have to wait for it all to clear.

My eye is bloodshot, and there is bruising and swelling around it. I feel like I have a black eye. I don’t have to maintain any particular position, so I can sleep normally. I cannot work or exert myself for a week.

In two and a half weeks, I will get a prescription for new glasses.

Fingers crossed. Prayers welcome.