Double Vision - A surgcal Solution

Amazing as it may seem to those who have pursued the usual long and winding road to reach a diagnosis of MG, I was diagnosed with myasthenia gravis on the very first day I experienced double vision.

That is not the remarkable feat it sounds like, just an unusual progression of symptoms. My first sign of MG came at a party where we were playing Pictionary. I was telling a brilliantly funny story when suddenly no more words would come out of my mouth. Perhaps everyone else was glad the story was cut short, but I was befuddled.

That was followed by more episodes of my voice quitting on me, and by a furtive departure from the library after I leaned over a drinking fountain and water came out my nose. Then I couldn't swallow, which was a particular problem because I was pregnant.

The day I was diagnosed, one month after my first symptoms, I had trouble breathing, and finally, the telltale double vision.

That last-to-arrive symptom went away quickly with plasmapheresis, prednisone and thymectomy. It didn't come back for four years, then went away again when I took Imuran.

Three years ago, though, after a three-year, drug-free remission, I woke up one day and thought one eye was slow to catch up with the other one. The possibility that the MG monster was back crept into my mind. The next day, my vision was totally, unrelentingly double. It was followed shortly by all my previous bulbar symptoms and limb weakness.

All my other symptoms succumbed to plasmapheresis, prednisone and CellCept, but the double vision was unrelenting. Hoping to wake up one day and see clearly didn't work either.

A year ago, with no symptoms but this intractable double vision, I was sent to a neuro-ophthalmologist. She prescribed prism glasses. I got the horrible, terrible, awful, wonderful things and retired the patch I had been wearing.

The glasses were very thick at the top of one lens and the bottom of the other, plus the outside of both. But what I saw from behind those glasses was beautifully clear. Clear in the sense that I saw only one image, but not real sharp because the lenses were so thick they affected my acuity.

My sight restored, I looked in the mirror. Ungrateful wretch that I was, it bothered me that my right eye appeared to be quite a bit lower on my face than the left. Both eyes appeared abnormally large. I didn't know for sure what other people saw when they looked at me, though.

Insecure about my appearance, I sometimes inquired of my friends and family whether I looked weird. "You look great!" was the inevitable response. Nice, but I didn't believe it. Finally, I cajoled my 13-year-old daughter into admitting that my eyes behind the prisms looked to her just like they did to me.

This made me timid when meeting new people, especially potential customers of my graphic design business. I certainly wasn't going to attempt to explain myasthenia gravis to a stranger at a business meeting, so I said nothing. No one ever asked about my eyes, but I always wondered what they were thinking.

My double vision remained stable so long that my neuro-ophthalmologist offered to send me to an eye surgeon who specialized in strabismus-"crossed eyes," usually in children.

The surgeon said I was a candidate for surgery, if she followed me for a few months and also found my double vision to be stable. As most myasthenics know, double vision can vary from day to day and from hour to hour, so corrective surgery is rarely recommended. My DV did not vary, however.

Finally she gave the go-ahead for surgery, along with my neurologist and neuro-ophthalmologist. But she warned me the results would not be perfect-that happened "once in a blue moon."

She said she would start with only one muscle in one eye. Each eye has four muscles that control it, but her theory was that MG had weakened the upper muscles in my right eye for so long that the lower muscles had tightened up. She thought cutting just one lower muscle and moving it back might allow the eye to function normally.

Her dilemma was just how much to move that one muscle. She was going to use an adjustable suture so that after I woke up from the anesthesia, she could tug on it until I said the double vision was as good as it could get.

But she also thought further surgery might be required. She said my vision might be even worse, and that my lower lid might be pulled down after the surgery.

Cautions duly noted, a week later I found myself in an operating room at the Anschutz Center for Advanced Medicine in Denver.

My blood pressure was 120 over 80-no worries for me, just cautious optimism that my double vision would be a lot better in a few hours and a sneaky little hope that it WOULD be perfect.

A couple of hours later I woke up with gauze over my eye. A wait ensued for the surgeon to wander back from wherever she went (seemed like an eternity to me), then the gauze was removed and-I could see. I could see perfectly.

"You just made my day," the surgeon said. "You made my life," I replied, exaggerating just a bit. There was no tugging on a suture, no lid pulled down . . . just a bright red eye. With only three days to go before Halloween, I figured I could make good use of it.

I went home with nothing but Tylenol Extra Strength and a big smile on my face. I'm not saying I didn't experience discomfort-two days after the surgery my eye hurt quite a bit, but that lasted only two days.

It is more than two months after the surgery as I write this, and my vision is never the slightest bit double. I am aware there are no guarantees, but if I wake up with double vision tomorrow, I'll still be grateful for the two months in which I was relieved of those annoying Picasso images of the world.

Although I appreciate my vision every day, I haven't had the prism-smashing or eye patch-burning ceremony I promised myself. Fifteen years with my erratic friend MG have taught me better than that.

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	Life Without Double Vision: A Surgical Solution by Debbie Marshall January 2005

	Amazing as it may seem to those who have pursued the usual long and winding road to reach a diagnosis of MG, I was diagnosed with myasthenia gravis on the very first day I experienced double vision. That is not the remarkable feat it sounds like, just an unusual progression of symptoms. My first sign of MG came at a party where we were playing Pictionary. I was telling a brilliantly funny story when suddenly no more words would come out of my mouth. Perhaps everyone else was glad the story was cut short, but I was befuddled. That was followed by more episodes of my voice quitting on me, and by a furtive departure from the library after I leaned over a drinking fountain and water came out my nose. Then I couldn't swallow, which was a particular problem because I was pregnant. The day I was diagnosed, one month after my first symptoms, I had trouble breathing, and finally, the telltale double vision. That last-to-arrive symptom went away quickly with plasmapheresis, prednisone and thymectomy. It didn't come back for four years, then went away again when I took Imuran. Three years ago, though, after a three-year, drug-free remission, I woke up one day and thought one eye was slow to catch up with the other one. The possibility that the MG monster was back crept into my mind. The next day, my vision was totally, unrelentingly double. It was followed shortly by all my previous bulbar symptoms and limb weakness. All my other symptoms succumbed to plasmapheresis, prednisone and CellCept, but the double vision was unrelenting. Hoping to wake up one day and see clearly didn't work either. A year ago, with no symptoms but this intractable double vision, I was sent to a neuro-ophthalmologist. She prescribed prism glasses. I got the horrible, terrible, awful, wonderful things and retired the patch I had been wearing. The glasses were very thick at the top of one lens and the bottom of the other, plus the outside of both. But what I saw from behind those glasses was beautifully clear. Clear in the sense that I saw only one image, but not real sharp because the lenses were so thick they affected my acuity. My sight restored, I looked in the mirror. Ungrateful wretch that I was, it bothered me that my right eye appeared to be quite a bit lower on my face than the left. Both eyes appeared abnormally large. I didn't know for sure what other people saw when they looked at me, though. Insecure about my appearance, I sometimes inquired of my friends and family whether I looked weird. "You look great!" was the inevitable response. Nice, but I didn't believe it. Finally, I cajoled my 13-year-old daughter into admitting that my eyes behind the prisms looked to her just like they did to me. This made me timid when meeting new people, especially potential customers of my graphic design business. I certainly wasn't going to attempt to explain myasthenia gravis to a stranger at a business meeting, so I said nothing. No one ever asked about my eyes, but I always wondered what they were thinking. My double vision remained stable so long that my neuro-ophthalmologist offered to send me to an eye surgeon who specialized in strabismus-"crossed eyes," usually in children. The surgeon said I was a candidate for surgery, if she followed me for a few months and also found my double vision to be stable. As most myasthenics know, double vision can vary from day to day and from hour to hour, so corrective surgery is rarely recommended. My DV did not vary, however. Finally she gave the go-ahead for surgery, along with my neurologist and neuro-ophthalmologist. But she warned me the results would not be perfect-that happened "once in a blue moon." She said she would start with only one muscle in one eye. Each eye has four muscles that control it, but her theory was that MG had weakened the upper muscles in my right eye for so long that the lower muscles had tightened up. She thought cutting just one lower muscle and moving it back might allow the eye to function normally. Her dilemma was just how much to move that one muscle. She was going to use an adjustable suture so that after I woke up from the anesthesia, she could tug on it until I said the double vision was as good as it could get. But she also thought further surgery might be required. She said my vision might be even worse, and that my lower lid might be pulled down after the surgery. Cautions duly noted, a week later I found myself in an operating room at the Anschutz Center for Advanced Medicine in Denver. My blood pressure was 120 over 80-no worries for me, just cautious optimism that my double vision would be a lot better in a few hours and a sneaky little hope that it WOULD be perfect. A couple of hours later I woke up with gauze over my eye. A wait ensued for the surgeon to wander back from wherever she went (seemed like an eternity to me), then the gauze was removed and-I could see. I could see perfectly. "You just made my day," the surgeon said. "You made my life," I replied, exaggerating just a bit. There was no tugging on a suture, no lid pulled down . . . just a bright red eye. With only three days to go before Halloween, I figured I could make good use of it. I went home with nothing but Tylenol Extra Strength and a big smile on my face. I'm not saying I didn't experience discomfort-two days after the surgery my eye hurt quite a bit, but that lasted only two days. It is more than two months after the surgery as I write this, and my vision is never the slightest bit double. I am aware there are no guarantees, but if I wake up with double vision tomorrow, I'll still be grateful for the two months in which I was relieved of those annoying Picasso images of the world. Although I appreciate my vision every day, I haven't had the prism-smashing or eye patch-burning ceremony I promised myself. Fifteen years with my erratic friend MG have taught me better than that.
	©2005 by Debbie Marshall