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My Orbital Decompression Surgery Nightmare

Updated on February 10, 2017
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Ruth, aka Elayne Kongaika, was raised in the orchard town of Orem, Utah. She married a Polynesian boy (Tongan) and has had many adventures.

In the hospital after orbital decompression surgery for Graves' disease.
In the hospital after orbital decompression surgery for Graves' disease. | Source

Going Blind?

One of my greatest fears in life is losing my sight. I am an artist, and I never stop looking for patterns, colors, or any pretty thing. But then I had a real scare. My eyes had been bothering me for a while. When I went shopping, my eyes would get very dry and red—and they would feel like they were bulging out.

Actually, they were. The technical term is "orbitopathy," and it is a result of Graves' disease. When the doctor told me I had this condition, it was a new one to me. I had worked in the medical industry for several years but was unaware of this particular disease. I was referred to a hippie-looking surgeon, with long blond hair, who was supposed be one of the top specialists in the country. He was very nice, but I was a little frightened when he told me he would have to make new housing for my eyeballs. What?? Wasn't there any easier way?

My husband, me, and my eye surgeon.
My husband, me, and my eye surgeon. | Source

What Is Graves' Disease?

Originally, this condition was called Graves-Basedow disease. When it is associated with orbitopathy, the patient's vision may be severely compromised. In 1835, it was considered a triad of hyperthyroidism, goiter, and exophthalmos. How did I get so unlucky?

It looks like age has something to do with it, since it often appears in people in their 60s and 70s—I am 66. It is more common in women than men. Now get this: only 5 to 6 percent end up requiring surgical decompression. Yeah, me!

In layman's terms, the muscles and fat behind the eyes become so inflamed that they strangulate the optic nerve. Vision is affected, and you get optic migraines because of the pressure. I started seeing streaks of light passing before my eyes that were so large, I was unable to read or see much for about 15 minutes at a time. When it first happened, I went to the doctor thinking I had a torn retina, since that had once happened to my mother. The doctor told me that the streaks of light I was experiencing might occur often—but that I should try to "just sit back and enjoy it, as in itself it is not harmful" (unless, of course, I was driving or in another potentially dangerous situation).

My surgeon said he had performed many decompression surgeries. He made it sound quite simple. Still, I was very scared. What if he cut my optic nerve by accident? What if my eyes were crossed? Would I look the same?

When I told my husband I was considering surgery, he was very concerned. To him, my eyes looked normal, and he was worried about the potential risks of the procedure. So, I took him with me to the doctor to have him explain the rationale again—to both of us, this time. The doctor patiently conveyed why he recommended the surgery, and how he would build new housings for my eyes. After a lengthy discussion between the three of us, my husband said the decision was up to me.

Source

Warning! Very Graphic Medical Procedure

Preparing for the Surgery

I was very nervous about the whole thing, but I couldn't ignore the symptoms. My eyes wept most of the time, and the optic migraines were getting more frequent. I could see that my right eye bulged out more than the left one, but I wore enough makeup that no one noticed.

I postponed the procedure three times. The doctor gave me a pile of papers to read about the disease and the procedure—although I'm pretty sure only a medical expert could understand the content of these documents.

My handsome hippie doctor told me that I needed to have a retainer made for my mouth. Part of the procedure would involve cutting two holes in the roof of my mouth and taking enough skin to use in my eyes. (Again, what??) In any case, the doctor recommended the retainer because he said I would be unable to eat without one for quite a while after the surgery. Needless to say, I went ahead and followed his advice.

I'm not sure where in my eyes those two pieces of skin from my mouth are currently resting. Makes you wonder, right?

Incision on top of mouth where membrane was removed to place in my eye.
Incision on top of mouth where membrane was removed to place in my eye. | Source

Feelings of Pain and Helplessness

The procedure was supposed to be a "same-day surgery," but the doctor decided to keep me in the hospital overnight because I was pretty nervous. To be honest, I was scared out of my mind!

Before the surgery, I explained to my doctor that I am a slow healer and have a very low tolerance for pain. I had recently had emergency gallbladder surgery—and it was severe enough to affect my pancreas and make my liver enzymes skyrocket. The pain had been so intolerable it had left me shaking.

Despite these preparatory discussions, I believe nothing could have prepared me for the pain and helplessness I felt when I awoke after the orbital decompression surgery. Perhaps if they had shown me before-and-after photos of a real person who had undergone the procedure, it might have helped.

I am so blessed to have a daughter who is a nurse practitioner. She was there with me most of the time, and she cared for most of my needs. The pills I regularly take were not given to me by the hospital staff, even though I had made it clear that I really needed my pills. The nurse-to-patient ratio at the hospital where I was treated was unfortunately less than adequate. There were far too many patients for the nurses to properly treat. If I hadn't had my daughter by my side, I don't know what I would have done.

Recovery

I have a history of high blood pressure, but after the surgery it was very low. My oxygen level would not stay above 89, so they put me on oxygen. They kept telling me to breathe. I was given pain relievers. steroids, and antibiotics. Actually, the pain was not as bad as I had expected. The mental pain, however, was another story. They really should require that patients undergoing this surgery receive therapy.

Occasionally, a nurse would come by, shine a flashlight toward my eyes, and ask if I could see it. Fortunately, I could. Other than that, I frequently needed help going to the bathroom because I was receiving IV fluids, which kept filling up by bladder. I peed myself and all over the floor once because I couldn't reach the toilet quickly enough. Humiliating!

I remember that my son and his little boy came to visit. Jojo, my grandson, was very quiet, and his father asked him to hold my hand. He slipped his little hand into mine and said, "Love you, Grandma." That meant a lot to me. They gave me colorful flowers, too. My daughter and her daughter spent time with me, as well. My granddaughter read to me, which was very sweet and comforting.

In order to treat the internal and external stitches in my eyes, I had ice packs on my eyes that had to be replaced every hour for a week. Twice I went to the doctor's office to have some of the stitches removed. The remaining stitches were internal, and I was told they would dissolve on their own.

Off-track eye
Off-track eye | Source

Complications

Why not make it more interesting? After I had been home a couple of days, I sneezed—and my right eye went off-track, bulged, and felt like it might fall out. I panicked and called the doctor. He told me to send a picture, which I did.

He instructed me to gently take my finger and push the eyeball back where I felt it should be. He advised that there would be some crunching sounds, but not to worry. (Cute.) After a few minutes, I was actually able to get it back in place.

I asked my husband if both eyes were tracking correctly, and he said "almost." After another try, they were both finally tracking in the way they were supposed to. The doctor recommended against blowing my nose or sneezing during the remainder of the recovery period. (I thought sneezing was involuntary?)

This happened three more times. The doctor told me it was happening because my internal stitches were not healing very quickly.

I had been instructed not to lift anything, to eat pineapple (it is supposed to be good for swelling), take my meds, and rest as much as possible. Because my retainer made chewing regular food more challenging, my recovery diet mainly consisted of kefir, oatmeal, soup, and yogurt with small pineapple pieces.

My daughter taught my husband how to be my nurse. He did pretty well for a 70-year-old who had recently slipped on some ice and hurt his rotator cuff. He was also taking care of my 90-year-old father, who is on oxygen and needed his help, too. It was a lot of work for one person. My appetite was nearly nonexistent, but I ate just to appease my husband. I felt sorry that he had to do so much to take care of me.

Raccoon eyes!
Raccoon eyes! | Source

Slow Healer

My youngest son and his kids came to visit me home. One son saw me and said something like, "What the heck?" My appearance must have been quite a shock! I had to explain what had happened, and that I was very glad to be able to see. He agreed that it was better than being blind.

My loving son, who serves in the military, FaceTimed with me and said I look like a raccoon. He was right! The bruises around my eyes do resemble the markings of a raccoon. Ha! Thanks, Rob, for the laugh.

My youngest granddaughter and her family came over. She was born with spina bifida and is in a wheelchair. She sat close to me and held my hand while we watched TV together. That was a very special time for me. Thanks for raising such a sweet loving child, Joel and Meilani.

I knew from experience that I heal slower than most. My right eye kept getting worse rather than better. I again called my doctor, and he sent a prescription for some steroids to help the process along. That seemed to work.

I am now on the mend, although I do still get some pretty funny looks when I go out and about—especially when I'm with my big, hunky husband. I'm not sure if my husband is nice to me because he wants to be, or if it's because he's afraid I could call the authorities and turn him in rather easily! (Joke.)

I tried to cover it up with makeup, but it still shows through for now.
I tried to cover it up with makeup, but it still shows through for now. | Source

Have you or someone you know suffered from Grave's Disease?

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Thank you!

I am so appreciative of all the people who helped me through this difficult time. I am especially grateful to my daughter, my sons, and in particular, my husband. Love you!

© 2017 Elayne

Comments

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  • elayne001 profile image
    Author

    Elayne 4 months ago from Rocky Mountains

    @vocalcoach I appreciate your kind comments.

    @diogenes My UK friend! Getting old sure is fun isn't it ?? Take care and enjoy what you can in life. Best regards!

  • vocalcoach profile image

    Audrey Hunt 4 months ago from Nashville Tn.

    A heart-breaking story sprinkled with courage and love. Thank you.

  • diogenes profile image

    diogenes 4 months ago from UK and Mexico

    Lord, Elayne: Engrossing article, and thanks for the intimate insight into your wonderful family. Reassuring to see you gradually getting back to normal in the excellent photos. I am diabetic and have some similar symptoms but not Graves I don't think.

    These specialists tend to gloss over the operations and recovery, don't they? After all, the wouldn't make so much money if they told us the truth.

    Nice to get that over and all the best for 2017.

    Bob x

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