Friday, December 12, 2008

Eye Surgery

Some of you have asked for more by way of explanation as to my upcoming eye surgery, so--here you go:

This surgery Monday will be my sixth in less than three years. I have a condition called Idiopathic Uveitis with Cystoid Macular Edema. Uncontrolled uveitis is a leading cause of blindness and the CME is the eye's response to inflammation; fluid-filled cysts in my maculas that cause decreased vision and permanent vision loss--similar to what people with macular degeneration experience. After seeing numerous doctors and undergoing every test they know to do, there is no explanation why my eyes persist in episodes of inflammation--other than my body just does not like my eyes--an autoimmune response. By the time I was diagnosed four years ago, I had already lost much of the central vision in my left eye. When I began losing vision in my right eye, specialists initiated aggressive treatment including off-label, immunomodulators and steroids; first as drops, then systemically, and finally as injections into my eyes in order to save the sight I have left. (Unfortunately, I am what they call Steroid Responsive, meaning that, not only does my body not like my eyes, it does not like the help that's being offered either.) Use of steroids caused my pressures to rise dramatically and my first two surgeries were to create drains in my eyes called Trabeculectomies--where the surgeon created a kind of raised bubble under my upper lids with a shunt from my own tissue to drain off the excess intraocular fluid. These "trabs" worked beautifully for awhile and my pressures returned to normal. (Left untreated, elevated pressures damage the optic nerve and also lead to blindness. oh yay.) The fun was not over yet. Almost overnight, I developed thick steroid-induced cataracts. For months I couldn't drive, read, or see faces clearly. It was like someone had covered my eyes with thick Vaseline. When doctors could no longer see IN any better than I could see OUT, I had two more surgeries six months apart in which cataracts were removed, new lenses implanted, and we crossed our fingers. Eventually, I was able to return to driving and reading and looking at all the things I like to see.

In the past year, I have had two more episodes of inflammation, more injections, and the initial trabs began to fail. In April I had my fifth surgery in which a Baerveldt Shunt was implanted in the white of my eye under my upper lid.. The device looks like a fingernail-sized manta ray which is grafted over with donor skin and the "tail" of the ray--a clear drainage tube--is threaded out through my iris to shunt away excess fluid. I call it my bionic eye. :-) This first implant was very successful. After six months of recovery time, my pressures have leveled off in the teens from highs last Spring in the 60s. (Normal eye pressures are between 10 and 20.)However, the pressure has been creeping up in my left eye for months so, on Monday, I will have the same surgery in that eye.

This ordeal with my eyes has been quite the roller coaster ride, as you can imagine. I've struggled with dry eyes, sore eyes, watery eyes, blurry vision, double vision, floating spots, and blank areas. I've had frequent headaches and even nausea from all the visual disturbances. And, while they have been able to get me seeing 20/25 on eye charts on a good day and I am thrilled that I can drive, my detailed vision is permanently damaged from all the repeated swelling of delicate eye tissue. When I look at a page of print, it is as though someone has taken an eraser and rubbed out random words and chunks of words. I don't see well at night and I have trouble distinguishing between some colors. This will not improve. In the past four years, I have seen the best specialists in the country and have had wonderful doctors who are doing all they can to save my sight. But I am not thrilled at the prospect of another surgery. There is a long recovery period with this kind of procedure. I can't bend or lift (even my darling grandbabies) for eight weeks. It is uncomfortable afterwards with stitches that rub, blurriness, and many, many drops that burn like crazy. I'll need to make frequent trips to the U for follow-up as this is not something that anyone local is familiar with. I find I am often the source of a kind of medical Show and Tell when I go in as most doctors have never seen what I am sporting under my lid. They gather around for a look and say, "Aaahhhh..." (Yes, it IS charming. Especially the younger interns who have all the appeal of little boys poking a dead frog on the sidewalk. I would be the dead frog.) So, I'd appreciate your prayers on Monday that the surgery goes well, no infection or inflammation develops afterwards, no permanent drooping of the lid occurs, and that I'd have energy to enjoy time with family over the holidays. I'm sorry if this got long. I don't often go into this kind of detail, but at least if it's in writing, you can skim! Overall, I am so thankful for what vision I DO have. I am also deeply grateful for friends like you who care so much about me. Thank you for all your expressions of concern and love and for walking through the valley with me. :-)

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