My brother and I discuss more eye-muscle surgery for him
The columnist's twin, who has MG, had a strabismus procedure in October
“Contentment is not the fulfillment of what you want, but the realization of how much you already have.” That quote from an unknown author is one of my favorites. Contentment is a mindset we usually acquire after maturity or contemplative loss.
After my divorce when I was in my 30s, I had to move back home with my mother and some relatives, including my twin brother, Aaron, who has myasthenia gravis (MG). I had a massive collection of compact discs, books, and DVDs, as well as a bass guitar and other stuff. As much as I’d wanted to keep them, I couldn’t bring all of that home with me. I was angry about that for a long time. I wasn’t content to give it up.
After my mother passed away, I moved to Manila, capital of the Philippines, in 2017 and have been surviving as a freelance writer. I focus on that work, small business dreams, and other long-term goals. I wish I’d thought this way when I was in my 30s. I’m 49 now, and all of this time has made me think about contentment.
Aaron and I were recently discussing the state of our lives now that we’re getting older. He had strabismus surgery back in October to correct severe eye-misalignment issues, so I asked how he was doing.
MG took away his ability to move his eyes, but the surgery at least repaired the misalignment. However, his doctor recently suggested that he return for follow-up surgery. When I’d moved home those many years ago, Aaron seemed resigned to his fate with MG. Now he’s determined to do whatever he can to ease the complications of his disease.
I applaud his dedication. Still, I know that he suffered after the last surgery. His eyes are now straight, but there’s only so much that surgery can correct, and I’m worried about him going under the knife again. I asked him if he’d have the follow-up procedure.
“Maybe,” Aaron replied.
Why I’m concerned
Aaron and his doctor had been planning the first strabismus surgery for over a year. I knew how much his misaligned eyes, a common MG symptom, bothered him and how much they affected his life. MG also caused him limb-paralyzing episodes of muscle weakness.
He was temperamental as a young man, but he rarely gets angry anymore because he recognized that stress worsened his flare-ups of muscle weakness and eye-misalignment.
He contemplated getting the eye surgery for a long time. Until there’s a breakthrough in MG research and new medicines, correcting the misalignment of his eyes was one of the few things within his control. Thankfully, Aaron’s strabismus surgery was a success.
While recovering, he wore an eye patch while sleeping, fought the impulse to rub his eyes, and avoided exercising for a month. His eyes watered constantly for days after the surgery, and then they were dry, itchy, and red for weeks. Those side effects of the surgery have since subsided, though. His pupils now face forward, and he’s happy.
After an evaluation, his doctor said his eyes could be a bit straighter and recommended follow-up surgery. Aaron has several months to consider it.
I don’t want him to do it. I’d been equally skeptical before his last surgery, although I’m glad it worked out. But now he can’t even move his eyes, the healing process was difficult, and I shudder to think of him going through all of that again.
I know it’s not my decision to make, and I told him I’d support whatever he decides.
I don’t pretend to understand how Aaron feels. Is it wrong that I want him to be content with his surgery? He has the general aesthetic he wanted, and I don’t want to see him endure more surgery to perfect the alignment of his eyes by a minuscule amount.
We changed the subject and discussed our apathy for the upcoming James Gunn “Superman” film. Still, he’s continuing to consider having more surgery. I just hope it works out either way.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
mfranchak
I have had MG for 30yrs. I got sick in the military. I got ocular MG first. I add no convergence .One day my vision was cloudy next day my eyes separated and little by little I had prisms added to my glasses to get the eyes to work. My eye muscles have never stopped moving , no remission. so I would not trust having the eye muscles moved. I had MG spread to my body and no one knew that MG back then started in the eyes. I also have high interocular eye pressures. I was told I was a glaucoma suspect. WELL the VA has provided my eye care. Now They sent me to an outside surgeon and I shouldn't have had the surgery. All I kept asking is the Xen shunt safe with MG. Well I had the shunt surgery. I now have half my eye lid lower. Nothing is helping, drops etc.The studies say since the lid has not lifted I should have MORE surgery to lift the lid. Right now NO! MG will attack you when you least expect it. I had IVIG a week before the surgery and plus I take Mestinon 60mg 3 times a day. I had IVIG a week after the surgery. Nothing helps move the lid. Be very careful with any surgery on the eyes. I will NEVER have the other eye done. The prisms in my glasses do not work since the surgery either. Good Luck!
Theresa Goldstein
Allen, I think your being concerned is a very realistic view.
One of the things to consider, any surgery is a huge stress to the body. Many of us have strabismus some more severe than others. I had a surgeon that wanted to perform that surgery prior to my DX. At the last minute I bailed. Lol, due to vanity. It was more vision than cosmetic in my appearance. Today it is more cosmetic as the disease and eyes have progressed. I still will not do surgery. When in was 40, now 71, I had surgery so I would not have to wear glasses. 10 years later my eyes continued to age and another surgery was recommended. So I opted to proceed. That second surgery got infected, and it was the most painful experience ever. My lesson learned, was okay is okay, and I feel that the first surgery was luck, and I pushed it.
The fact that we are on immune suppressing agents increases this risk. Assume he is. Also, he may find over time, his strabismus worsens due to MG and that might be the time for another surgery.
Those are my thoughts as a fellow MGer. But we all make our decisions based on many reasons.
Happy Holidays.
Chris Angelo
What hospital did they perform the eye 👁 surgery, and what is the name and the number of the doctor.