Surgery

My husband had eye surgery today. Again. This is the second one in a month, and the tenth overall. I thought it was the eleventh, but he says it was the tenth, and I assume he would remember. It all got a bit blurry after the fourth or fifth surgery anyway.

Nearly 20 years ago, his misdiagnosis of migraines was properly diagnosed as intermittent and astronomically high pressure in his eye which caused temporary blindness and great pain. Medication immediately eased the pain, restored his vision and stopped the increasingly frequent headaches cold. We thought it would be okay. We thought it was all over.

But then.

The eyes refused to stay healed. Any decrease in the medicine (and at first, we were administering eye drops every two hours, around the clock) immediately spiked the eye pressure. Something else must be underlying the problem, triggering the intense pressure. Inflammation is usually the culprit.

But then.

The doctors found none of the usual signs or symptoms of inflammation. More medicine. More doctors. Appointments weekly, twice weekly, three times weekly. Emergency calls on weekends. The private cell phone of his doctor – call any time, if anything changes at all.

But then.

On the day after Christmas, when we met a young eye surgeon at the back entrance to an empty office for yet another emergency call, we got a possible diagnosis. Posner-Schlossman Syndrome. He had heard it described, but had never seen a case. Most of the surgeons had not seen a case. There were treatments, and often it could be wrestled into something like remission, if not cured outright.

But then.

It turned out that he has an atypical version of this already rare eye syndrome. It affects both eyes. It cannot be controlled to a point where steroid drops can be stopped. The cyclical nature of the flare ups in the eyes turned out not to be cyclical, but rather constant. When medicated, his eyes would appear normal. If his doctor was away and he had to see someone new, that doctor invariably tried to remove him from all medication, with predictably disastrous results.

But then.

Surgeries started. Creating a channel in the eye to drain internal fluid would regulate the pressure. It is apparently all very simple fluid dynamics, but he’s the one with the physics degree, so I just think it is sort of magic. The pressure came down. More surgery for the second eye. Things were looking up.

But then.

The eyes still would not stabilize. He was on post-op recovery status for nearly a year of weekly or bi-weekly appointments, and reduction in the medicine could not be sustained. He was no longer on medicine every two hours around the clock, but he was continuing to use steroid drops six times a day and take oral steroids as well. More doctors. Specialists and teams of doctors at one of the two biggest eye hospitals on the West Coast. There was a small study in France that was having good results. The techniques did not work on him. A study in San Francisco revealed a possible connection with a common virus that most of the population has had infiltrating the eyes and triggering this syndrome. Blood tests revealed that he had the antibody markers for the virus, but tests on the fluid within his eyes revealed absolutely no virus or antibodies in the eyes. Another bust.

More surgeries. The steroid medication corrodes and clouds the corneas, essentially creating cataracts, so he had corneal replacements in both eyes well before his 40th birthday. There were injections. There were reductions in medication so gradual that his body let them slip by. He came off the oral steroids. The drops decreased from six times a day. Then, the channels built in the first surgeries began to heal. They had to be rebuilt. First one revision- easy and a great success. The drops were gradually reduced again. Antiviral medicine was added. Second revision- the pressure ended up too low, but it was stable for a long time. Nearly eight years.

But then.

The very low pressure dipped into extremely low territory, and the risk of the eye deflating grew greater and greater. His vision began to distort. Surgery was again needed. After a detour for a spontaneously torn retina and delays due to the pandemic, everything finally got back on track and last month he had the surgery to once again rebuild the channel in his eye to try to increase the pressure slightly, but not too much. It’s delicate work. It seemed successful.

But then.

Within a few days, it became apparent that the sutures were not holding and the eye was not healing. Not only did the pressure not increase after the surgery, it started to go down again. Without sufficient pressure in the eye, it could not heal. Without healing, the pressure would drop. More changes in medication, application of contact lens bandages, adjustments of sleeping positions, restrictions of movements. No change. No change. No change. No change.

So today, he went back in for surgery again. The problem seemed to be that after all the surgeries, the tissue in the eye was too thin to heal. The surgeon inserted donor tissue into the eye to stop the leak, much like patching a bicycle tube. With luck, it will hold, and the eye will heal where it should and stay open for drainage where it should.

So now, we wait.

7 thoughts on “Surgery

  1. I’ve had five eye surgeries, two of which were recent. I’m mentioning this because I have some small idea of what you and your husband are going through; however, Ive not experienced anything as frightening as what you e described. As I read I wondered if your husband had seen ophthalmologists who specialize in cornea and retinal problems. It sounds as though he has. It’s important to see the very best experts because not all ophthalmologists are created equal. I’m not much of one for praying, but I am praying for you both and will continue to do so. My heart is with you both. One last personal note: My father had myriad problems w/ his eyes, too. He had experimental surgery to repair bursting blood vessels and was treated for glaucoma twice. The surgery failed, but I like to think that failure in some small way contributed to knowledge that later helped others. So you see, I find a personal connection to what you and your husband are going through. Peace and comfort to you both.

    Liked by 1 person

    1. Thanks for such a kind reply. Yes, my husband was sent directly from our primary care doctor’s office to a glaucoma specialist, and then was moved to a wonderful specialist who is excellent in glaucoma and corneal issues. (His retinal tear was fixed by the retina expert.) The team of doctors at the special eye hospital were even more specialized. We are 100% confident he had been treated consistently by the best of the best, and we are very lucky to have had that. His eyes just have their own ideas. I hope that your eyes have healed well and you do not need more surgeries.

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      1. Thanks. My doctor thinks my right lens is defective and came that way from the manufacturer. It’s sitting in the right spot but flipped my astigmatism, so I’m looking at another surgery. I go to the Moran Eye Center at the University of Utah in Salt Lake City.

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      2. Oh my goodness! That is a very unusual problem. It must be really messing with your vision to have everything flipped around like that. I know the Moran Eye Center. I did my M.A. in English Lit at UofU back in the day. I hope they can fix the issue for you, even though it does mean more surgery.

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